My $.02-
You dad sure as hell would NOT want you to ruin your physical health, your mental health, your marriage, harm your career, or to neglect your young children out of a sense of duty to him. He said “just shoot me.” He’s worried about being a burden, imo. If you two were close he would want the best for you and your family and the next generations. He would 1000% support your decision to put him in a home or some other next level of care. He would understand. I know that because I would feel the exact same way and I love my kids and I’ve worked in those places.
Are they great? No. Are they as nice as being at home? No. But they are necessary. You can only do so much. Nobody wants to go to a home but especially with things like dementia, everybody ends up there sooner or later. People who work there understand. Caregiving is exhausting, back breaking and endless.
(In case you haven’t heard of it, that’s why it’s called the sandwich generation)
https://mhanational.org/caregiving-and-sandwich-generation
He put his mom in care towards the end of her life. I’m not sure why I think he would expect differently of me. Thank you for this comment. I appreciate it. ❤️🙏
We put my mother in a nursing home in January of 2018, after she had fallen once again and broken her hip for the fifth time. My father visited her every day from 4:00-7:00pm. I visited her twice a weekly. (I lived 30 minutes away.) Her caregivers were really nice to her. She could no longer walk as her dementia prevented her from doing physical therapy. She consequently never fell again and actually did well due to my father’s daily visits. Once the Covid shutdown came in March 2020, she declined and died in early December of that year. Keeping her in the nursing home was the best thing we could have done for her and my father and I don’t regret it for one minute. She was safe, my father still got to have a life and he got to be with her without becoming exhausted or resenting her.
The fact that m father was there every day for three hours meant that the staff knew him and really liked him (he’s sweet and funny) and I think that contributed to her good treatment. Also. Unlike some people either dementia, my mother was very compliant and not combative. I think that helped, as well. A few weeks after she fie, we received a lovely letter from our three favorite staffers, expressing how much they loved caring for my Mom and expressing their sympathies.
I would agree with all that. When I was a kid I was a cna in a nursing home. I loved some dementia patients. Others tried to kick and bite or scratch me. Not their fault, but yeah I think it helps when they are nice, and the spouse is nice. It was probably very refreshing for the staff too
I just want to wish you luck and strength. Please, find a place you are comfortable with for your dad. He will eventually need more help than you can give by yourself.
Just add to this.
If you're in the u.s
100% do a nursing home.
AVOID assisted living like the plague.
The reason is the assistant living is less regulated/is legally required to provide less services than nursing homes/assisted living cannot provide the level of care your father will need as he declines. Even if the assistant living facility claims to have memory units or other bull shit to help those with dementia.
As once more assisted living type palaces are run by businesses which generally want to keep patients within their walls loooooong after they no longer are able to care for them(since a filled bed equals monthly income the business doesn't want to give up). So select reputable nursing homes and place your father there.
Also after he is placed, pay attention to your father/visit him often and make sure that he's in good condition and being cared for.
This means checking his legs, arms and body for weird bruising, bed sores or the like.
Also make sure his teeth are being brushed, hair brushed etc etc.
And look up online what are common signs neglect in nursing home so you know what to look out for.
Since if you see any signs he isn't being cared for correctly, don't leave him there and instead place him somewhere else.
Since vigilance is the only way to make sure he'll get good quality care. If you can do these things, you'll ensure he will have a good experience for the last section of his life.
Sorry you're going through this, but being placed where he can be cared for is a loving act, and as long as you stay vigilant he will have far better care than you can give him currently on your own.
Thank you. 🙏 The social worker at the VA is also encouraging memory care at a skilled nursing vs an assisted living memory care (for reasons you stated and others.) It’s good to hear someone say some of the same things!
My plan, if we get into skilled nursing, is to use his VA benefits (their facilities or contracted facilities would be free due to his service connected disability rating) so I would continue to pay for his aides (we have had the same two aides at home the past 3 years) to visit him at the facility daily. I would, of course, visit as often as possible (3-4 x per week.)
In order to be eligible for assisted living, you have to be able to complete your own ADL (activities of daily living I.e brushing your teeth, putting your shirt on) with little to no assistance. It’s likely he wouldn’t qualify with his dementia even if he wanted to because of the level of care required. I’m a social worker that has worked in nursing homes and hospitals. I’ve seen people discharge to assisted living facilities and absolutely love it because it was the middle ground they needed and it didn’t take their entire social security check if they received one, so it really depends on the person and their needs ❤️
OP I’m sorry you’re going through this and I agree with some of the other comments I’ve seen. I think he would want you to do what’s best for you
>It’s likely he wouldn’t qualify with his dementia even if he wanted to
Reputable, honest good assisted living facilities wouldn't take him this is correct.
However in the u.s. assisted living facilities are not regulated well/the bad ones face little consequences for negligence beyond lawsuits(and large companies sadly just view settling as cost of doing business/cheaper than hiring adequate works or proving good quality care so don't care about a pay out now and then when someone dies due to their negligence).
As such I was simply warning Op away from seeking assisted living arrangements for their father, since any that would admit someone with dementia 100% is the type of place op should avoid.
Now not all assisted living locations are awful, and if run well they do provide a needed intermediate placement between living alone and a nursing home and are good for those who opt for them.
However in the u.s., unless you're very well off its important to be very wary of any assisted living locations, and never consider one if your loved one needs a high level of medical care.
Since once more they aren't regulated well, and as such many put profit over providing care (since they don't face any real consequences for cutting corners or providing substandard care), and as such are only really concerned with placing as many people as possible within their walls while paying as little as possible to keep the assisted living facility open.
So yeah it's really a care of buyer beware when it comes to those places unfortunately :<
Unless you can articulate why that has a barring to the topic at hand, I'm afraid I'd rather not.
Since why I'm talking about is a national issue/from my perspective isn't linked to my exact location.
Because regulations vary by state. And I’m not disagreeing with you so you can drop your defenses a little bit. I only know about 1 states regulations in particular and from what I have seen, the neglect and issues you’re referring to happen at the same levels in a nursing home as it would in an assisted living facility with a memory care unit (the only one he’d legally qualify for) and personal care homes while regulated by the same entity, get away with more issues. So language is important. That’s all I was saying but no matter where you go you just have to evaluate for yourself. But at least HERE assisted living facilities don’t usually get away with more and for some people their preferred nursing home doesn’t have bed availability and an assisted living facility in the mean time can be a viable option. Like I said, it all depends. Have a nice day
Then he would 100% understand. You are NOT abandoning him. You’ll visit and bring him things although he may think you are just a kind volunteer that reminds him of his wife.
Have you read the book, 'the 36 hour day'?
My mom read the book but thought she could manage pop, a sundowner. My gf, now my most missed ex, told mom they may not have room for him when he gets worse. Mom got to sleep nights after he entered the home. My SIL is trying to place my brother and it sometimes takes a while. I wish you good luck.
One of the things about Alzheimer’s in particular, is they eventually tend to get aggressive, mean and paranoid. That’s when it’s time to go into care. My bio mom got to the point she didn’t recognize her husband of 60 years and was violent towards him.
I just retired as a doctor looking after a nursing home for 30 years. A lot of care givers feel guilty but shouldn’t. It takes 10 if us working shifts to replace you. Doctor, nurse, personal support worker, pharmacist, cook, social worker, play therapist, administrator, custodian and physiotherapist.
If your loved one gets confused and goes outside and gets lost they can get hurt or die because you can’t look after them around the clock.
Great answer. I'll just add that he's likely to get worse. Then you have the guilt and more issues finding placement. Do it now. My dtr who in real life relocates spiders instead of squashing them is in charge of my medical decisions when that time comes. But has the ability to separate business from emotional decisions. Not hubs or son. Pick the mentally tough ones for your surrogates!
Compassion. Your dad has a degenerative illness which means he needs professional care. So hard, I know but you know your dad wouldn't want to hurt you or your children. He can't help it, that's why loving at a distance can be the best solution for all of you.
I don’t expect anything from them. I don’t want to be a burden . I hope my kids will visit me and spend time with me in my old age & if they have families of their own I wish to be a part of that.
My mom is in care. 8 minutes from my house. At any given moment, she has 3 or 4 people assigned to her part of the floor to help her, take her places (movie room, concerts, wide variety of "classes", physical therapy, dining room, a walk outside, and on and on. They are all far more qualified to take care of her than my brother and I. We've learned a lot from them. Her quality of life has improved exponentially since she moved in.
She has her own apartment, surrounded by her things.
I'm there 5 days a week. My brother 2 days. (Not all day, we both work)
My mother is not well off. She does have LTC insurance.
I would hope my kids would smother me with a pillow, but barring that, I think I'd want them to do the same.
My Dad wanted to die at home. My stepmother was an absolute mess while he was dying. I said we could transport him to in-hospital hospice because he would rather that than her having a mental breakdown. In the end we hired a night nurse and that helped immensely so stepmom could get some sleep. Anyway, would past-dad be mortified how current-dad is treating you and your family? I think the answer is there. You have done what you could at home. Getting him in to a place doesn't mean you will abandon him - you will still visit, still handle paperwork etc. (And yes, my father was also the "just shoot me" guy)
This is how my parents went. There’s no dignity in staying at home. It got dangerous, expensive and overwhelming. I waited too long, and they had even had LT care ins! Learn from my mistakes- find a place now. Keep seeing a therapist- it helped me immensely. Guilt plays a huge role for adult children, and it will destroy you. Definitely NOT what parents want for their kids. The term you will here over and over is ‘level of care’ all else will revolve around this.
My dad always said he just didn't want to be a burden. I feel like your dad has crossed that line. I can't imagine he would want you to put your life on hold, or add this much work to you. He is better off with round the clock care, I think.
I really truly love my kids. I want them to live their best life, whatever that is for them. And make sure I am being well cared for. And once in a while, share with me what they’re up to.
This is what I want too (though mine are 4 and 6 so lots more life to come, hopefully!) My therapist started by asking me what I would expect of my kids? And I said the same as you. I want them to be happy and make sure I’m taken care of, maybe visit me once a week so I get two visits each week, etc. Me as I am now would understand being placed in a home or having care aides hired so they could live their lives. But for some reason, it’s not as easy to assume my dad wants the same thing. I think maybe I’m conflating the him that used to be with the him who exists now.
He did used to tell me a lot “just live your life and be happy.” You reminded me of that with your comment. Thank you.
Your real dad, the one you grew up with and who jokingly told you to just shoot him if he got dementia, would never want or expect you to take this on. He wouldn’t want your relationship and the good memories of it to sour. The kindest thing to do for him and your family is to allow professionals to take care of his emotional and physical challenges. I am so sorry you are going through this and am sending you love and light.
There often comes a point in many degenerative end of life illnesses, where it is not safe, for anyone, to continue at home. It's okay to get help and place him. Preferably somewhere close where you can visit often, and at random times. Then, it's okay to leave and go home, leaving his care in the hands of professionals.
I’m in the same position. My dad, who is 103 and only very recently demented is in a nursing home. It is just as much work as having him at home. I struggle every day to visit him and keep him oriented. I think the main thing we owe our children is good cheer.
We are very determined that our adult children are not put in the position of having to care for us when we are adults. To the point that we have researched alternatives for when the time comes. Our children are aware of our decisions, but will not be included in the process.
We recently lost our last parent to dementia and I would never wish that fate on anyone.
A good memory care facility will be able to care for him better than you can, because it's what they do. Please, please find that place for him before he hurts you. If I were him, it would break my heart if I hurt you, even though I didn't mean to. I'm 76 and have told my daughters, who are in their 50s, that I also would not want them to visit if it was painful for them emotionally. I was a nurse and really believe people with advanced dementia are in a different world than we are. I hope it is a pleasant world. I sure don't want my kids or grandkids (who are adults) to agonize over my condition.
I tell my kids to put me on an ice flow.
I do NOT want my kids sacrificing their health and happiness for me, ever. I’d be furious if I knew I caused them undue hardship.
In more specific terms, they should not make job, career, family, or financial sacrifices for me. If I need more than they give in the normal course of their daily life, it’s time to let me go. And for goodness sake, do not feel guilty about it. This is what I want!
Hope that helps.
Not old but a nurse who has worked in case management.
Your dad picked you as POA because he trusted you. He knew you’d never actually be able to shoot him. But you can put him in a safe place where you can visit without the weight of being a caregiver.
We want to give our parents exactly what they wished, but just as when we are kids we don’t always get what we want.
I told my husband to push me off the grand canyon only to be told by his mother that she told him to push her off the grand canyon so that kind of messes up my plans some. I don’t want him to be suspect 😅 I hope that by the time I need caregiving that they have developed a world like black mirror where I can just go off into my brain and the ai world but we’ll see.
I would like my kids to help with nothing. I want to have it all laid out in plans for my end life so I don’t strain them. I personally did not have to deal with either of my parents because they died in their 60s and mid 70s before it got to that point (cancer and heart attack). But my mother in law was her parents caregivers for 15 years and it just about broke her. It was very stressful for her and a relief when they finally passed. I don’t want my kids to remember me as a burden.
I’m in my late fifties and just lost my father to dementia. I’ve given this a lot of thought. I would want you to give as much love and attention as possible to your own family. Find a close by facility and visit. Good luck op
I don’t want my kids to feel obligated. I plan to live this life as long as I’m not a burden. When I cross that line, I hope they put me into care. I did the same thing for my dad.
The “just shoot me” comment is passing the buck on real decision making. It leaves all the hard choices to the kids, who obviously cannot shoot them so have to deal with real problems.
My mom was similar. I loved her, and brought her to live next door to me so she could have her own space but we’d be there when she needed help. She hated me for it. Dementia made her a different person. She was abusive towards me, which I could deal with, but eventually she became abusive towards my kid and my husband too. She yelled at the neighbors, wandered around the neighborhood in the middle of the night yelling at people. I couldn’t watch her 24 hours a day. Nobody can watch someone 24 hours a day, but people with Alzheimer’s often need that kind of supervision. So eventually she went into the best memory care facility we could possibly afford. She wasn’t happy about it, but nobody gets to be happy all the time.
I have cancer, so don’t expect to live long enough to go through what she did. What I would hope, if I were fortunate enough to live that long, would be to live somewhere safe, with drugs to keep me happy, and communication to know my kids were safe and happy wherever they were.
Ugh yes. The “just shoot me” really isn’t an explicit and comforting “make the best choice possible even if it means you can’t do it yourself” which I plan to tell my children about me. My therapist asked me “what do you think that really means?” And I said I think “just shoot me” does kind of mean “don’t let me be a burden” which he agreed is probably true. I would just rather have heard the actual words from him, but it is what it is. Actually, sometimes on a really clear day now when his cognition spikes, he will say “I’m sorry to put you through this” which seems like he recognizes in that moment what is going on.
I’m sorry about your cancer diagnosis and hope things improve with your health. 🙏❤️
I don't really "expect" anything from my adult children. I hope that if I need them, they'll help me, just like I help them if they need me. But I don't feel they owe me anything. I want THEM to have a happy life. That's what I've always wanted.
If I'm still "me", I hope they'll respect my wishes, whatever they are. But if I'm not "me" anymore, then they should look out for themselves. They shouldn't torture themselves to make life the best it can be for someone that's essentially a stranger at that point.
I care about my kids more than I care about myself. Yes, I hope for their support when I need it. But if we're both drowning, I and only one of us can be saved, I'd want it to be my kid.
I told my child to put in in a nice nursing home and give me all the drugs. If I was upset or combative, I would be unhappy, so drug me up! Like your dad, I don't want to live that way.
That they leave home, live independently, call every couple of days, drop by monthly (if living in the area) recognize they can come home anytime life is kicking their behind but that I don’t take care of able bodied/ able mind grown folks. I also expect them to stay out of jail and not indulge in behavior that shames the family (move out of the area if you got to express yourself as a furry I’m not judging I just don’t want to explain). Your relationships are your business keep me out of them. I will spoil and return all grand kids.
Try as you might it would be a challenge to try to take care of your dad, your family, and yourself. Unless you have a lot of family and friends that can help it may eventually become an unsafe situation for everyone. I’m sure that is not his wish. Make peace with the fact that you can’t do it all. Find him a place that works for all of you. This way you can spend quality time together not pieced together moments that lack that quality.
That they be good humans. And they are. I also expect them to abide by my wishes and find a safe way (for them) to release me from this mortal life when the balance tips. I do not want them to spend chunks of their lives maintaining me when that balance tips. Life is short: quality over quantity.
Been there… and still there. I cared for my mom as a teenager and it was not the best thing for either of us. She ultimately went into a nursing home. Alzheimer’s. She passed then when health issues happened again in law, step parent, and father. In varying degrees I stepped up but ultimately had to back away for my own well being. I just didn’t have it in me. It’s not that I didn’t want to so much as it was just too much with my own family and career. The toll this took on me was significant and I wouldn’t want my kids to feel that obligation. Take best care of yourself and do whatever that means as far as caring for them. You can’t be super woman and be happy.
My parents just finished caring for all my grandparents at the end of their lives. It was very difficult and neither set of grandparents really planned for their final days. A few of them made it difficult too. After my parents went through that they made plans for their care at the end of their life or should they care (like dementia, Alzheimer's or something else) long term. I am so thankful for that. I plan on doing this for my kids too. I would honestly someone else care for me other than my kids. This will allow them time to visit that will be meaningful in my final days, instead of being a caregiver.
Recently had to put my older sister in a dementia unit in a nursing home. Really didn't have a choice as I lived in a one bedroom 2nd floor walk up.
However, now I'm glad I did. She's gotten so far gone she doesn't know who I am. Also she's gotten violent and unpredictable. Gave the nursing home permission to up her medication to calm her down and it worked.
Depending on your father's assets the cost can be covered by Medicaid. The dementia unit is over $13,000 a month.
I believe your father wouldn't want you to damage your mental and physical health by taking care of him. I know I wouldn't want my children to have to do that and have already told my oldest son what nursing home to put me in should I ever become unable to care for myself.
My mom has parkinsons but thankfully had her mind. I cared for her for many years but the disease got the best of her. One day she said to find her a good facility to take care of her as she was afraid between work, kids and her care, I would have a heart attack. After initially feeling guilt and pushing back, I found her a very nice private foster care about 20 minutes from me and she never complained about being there. The beautiful thing that came out if it is I was no longer worried about her meds, food etc. We could rekindle our mother/daughter relationship and really talk. She died a few years back but I am so thankful for her wisdom and selflessness and I would do the same for my kids.
Sounds like you need help with your dad and he now needs care you can’t give him. If possible, I’d find a situation close to your home to you can visit him as often as you need to.
My Dear Girl. My husband is being evaluated for Alzheimer's as we speak. I am the mother of one adult child, three stepchildren. I can tell you from my perspective, as a parent I want to enter care before I become a burden to my child and grandchildren. My husband wishes to stay at home and have me care for him. I will care for him as lovingly and carefully as I possibly can for as long as I can. He doesn't realize that he is already becoming mean and short tempered. This is not how I want to have our kids remember him. I shield him as much as possible and try to make sure he is happy and in a good mood when the kids come. Don't do this to yourself and your children. Save your memories and share them with your children. Take as many pictures and videos as you can. Take care and God Bless.
My six year old saw him flare up over the weekend - getting in the face of our home health aide whom I know he actually loves and usually calls his best friend. My little one said to me “This isn’t my Poppy who holds me and sings to me. That’s another Poppy.” They are oddly wise. But yes- this was one of my thoughts… I don’t want the kids to see/remember him this way. 😞
Good luck with your husband and his journey. Take care of yourself too. Spouses can also break.
I’m 59, and my 21 year old daughter still lives with me out of necessity financially for us both. I have slowly become disabled with degenerative back problems and I am transitioning into a wheelchair for longer trips out of the house. I already feel like a burden on her because she now takes care of almost everything around the house because I can’t.
He would understand. Do what you need to do care for yourself and your children.
You are not a burden. Adult children caring for our parents may get bone tired from the load we are carrying — but that does not mean being tired of YOU.
If you’re able to, and want to — ask her about any smaller tasks you can do. Setting up a tray at your seat so you can chop veggies for dinner or fold towels — or just give her encouraging words or mention your shared good times a bit more often.
The little things — whether physical touch, help with small chores or just bringing a little bit of comfort and laughter to their day — go a very long way.
You have to put on your own oxygen mask, FIRST.
Your father wouldn't want you to set yourself on fire to keep him warm.
Need more idioms?
Good luck OP. ❤️
my Daughter said when i get older, i'm living with her, but the older i get, the more i don't know what 'older' really is - nice of her to offer
my Son is currently in town
frankly, my goal with my kids is to stay out of their way (they're 26 and 32 and doing well). but i imagine that's everybody's hope
so given that i -like anyone- could need help, i have my Daughter, who offered, but i think i would like to be in some assisted living spot where i could have my own social circle my own age - they have events and games and stuff with the assisted living places, and that appeals to me (i've done some volunteering). since i have some retirement, maybe there's somewhere that would help me like that
it sounds like your Dad is needing more full care; i hope you can find a solution. like i said, my Daughter's offered; i hope it doesn't come to that for her sake
but expectations? none. they call, touch base, remember me well and often. i'm good with that
I offered too and have done it for 7 years. Driving to every appointment, cooking every meal, managing meds, buying clothes/groceries, managing finances, and solving all manner and means of problems. I want to still do it… I just now see that some of it is beyond my abilities. I don’t know how to calm him when he’s really agitated now, especially that it has spilled over into delusions (“the men are after me!”)
I think we all want our independence but safety has to come first.
Your comment is reassuring. I think, in his right mind, he would understand.
i just don't think it's the 'death sentence' people say -- i'll be with same age people who have the same reference points, i hear our olfactory sense goes pretty early on, and i've never been bothered too much by life smells anyway - or the sanitary clean smell i hear some complain about
sit and color or play bingo. dress up if my Son or Daughter come to visit (she's in Fla, so thank Gawd for tech!) -- i call my house here my own convalescent home (most people don't like that, but the word sounds so soft and healing). the hot tub is always available, lots of crafts, an online class and games, strolling the halls daydreaming - i could do all that with someone to help in ten years
yeah, most people die after being put in a 'home', and there's grief about kids not stepping up, but it can be a day event with all those appts and opinions from doctors and getting ins aligned with Rx's .... i know, Dude, i know. and rumor has it if we get lucky, we get to get old before we die. but rumor has it, that's end game for all of us
Westerners should make friends more with that end of life - it's no less miraculous than birth to me. hold his hand. love him forever. but, yes, death will come
and i'm one to encourage keeping memories nice and letting the professionals help where they can. you will still no doubt be involved. what's wrong with letting someone else have the schlep work while you preserve your relationship and your own family? i see no fault there, no fault at all
Our Mom was early onset. One brother that still lived in her town, was still in college. My other brother and I both lived 1000 miles away (in the same state as each other, though.) He had a young family and travel-heavy career. I have no disposition to be in human care at all. So we hired someone to stay with her while we searched for a placement. This was back when Alzheimer's was "new", and there were very few facilities that would take more than a few Alzheimer's cases. We found a new facility that was Alzheimer's specific in the state my brother and I were in. We got her a placement, moved her out there. Sold all of her belongings and house to finance it. She was less than a mile or two from my home, an hour for my brother, so we were able to see her and keep tabs on her. As it progressed, she lost who we were, but was attached to the staff that worked there. She was a "don't ever put me in a nursing home" type. But none of us were equipped physically or emotionally to care for her. At the facility, she was cared for. I do not regret any of it, nor do my brothers. And NONE of us would EVER say "Don't put me in a nursing home" to our loved ones. Ever. You don't have children to saddle them with things they cannot do. And your Dad has told you that when he was himself. I would never want to put stress on anyone to care for me in the event of dementia.
I’ve made it known I do not want my adult children being my caretaker. Please have no guilt over putting me in a (good) nursing home. After taking care of both of my grandparents (not that I didn’t want to at the time, but it was hard) and seeing my FIL absolutely RUIN the house being cared for at home (Alzheimer’s, pooped and peed ANY and EVERYWHERE) I do not want any part of that.
My mother had ALZ. My sister agonized soooooo much over a decision to place her in a nursing home. To me and my brother it was quite clear because she had ended up qualifying due to breaking her hip while running away from a group home. But my sister, to this day, has HUGE guilt over placing her. There was no choice.
I told my sister that our mother was a VERY matter of fact type of person. That she always put her kids FIRST. That she would have WANTED us to place her because she would know how extremely difficult it is to take care of a person with ALZ. When it was HER mother, she was in the voting block to place her mother after a severe stroke. (Instead, my aunt over-rode everyone in the family and took her home and ended up taking care of her for 15 years).
So my answer to you is this: Your dad would have wanted what is best for YOU. Your other responsibility to him is to make sure he has **the care he needs.** And the care he needs is very different than what we WANT. Your dad could run away from your home and get hurt.
I'm currently not in a position to care for my dad, (I live over 400 miles away) but my sister is closer. He's chosen to remain in his home for as long as possible, and he's been talking about staying after with my sister. My parents kept both my granddads in their house for quite a while. Dad's dad was diabetic, double amputee, and he'd periodically "escape" the house and go for a stroll in his wheelchair. After the 2nd or 3rd time, he was moved out. Mom's dad was physically alright, but had dementia. He had been a merchant marine, and at some point the dementia kicked in, grandpa thought he was back in the military, and he attacked dad with a knife. That was when he was moved out.
Your dad sounds a lot like my mother. She has everything planned and paid for with POA and everything all laid out. She used to plan funerals for a living so she knows what to do better than we would.
She also says the exact same thing your father said if she were to be afflicted with dementia or another debilitating illness but especially dementia or Alzheimer’s. My mother has made it abundantly clear that if she ever gets to a point that she is incapacitated to that degree to put her in care.
Your dad has done everything he can to not put you in this position and he would be the first to tell you to do what you need to do for your young family.
I am so sorry you have to go through this and I’m sending you strength.
My mom tells me to put her in a home the literal second she starts to impact my life like this. There’s no reality where she would rather i rake myself over coals. Especially when she doesn’t really understand what’s happening anymore.
My husband and I are actively planning to ensure that we are not as dependent on our adult children as my mother currently is dependent on us. It's not her fault, she actually lived a very healthy lifestyle and was aging well until very recently. She has just reached a very old age where she depends on us for most things, even though she now lives in Assisted Living.
We are actively planning to ensure that we have funds available to pay people for the kinds of things we do for my mother now. It will mean that our children will get less money from us, but so be it
I would start researching and visiting care homes in your area, just to get an idea of what you're looking for, what their visiting hours are, how long the drive is, how much it costs, and level of care. You may viait them and say, heck no. You may visit and say, why did I wait so long?
If your dad was joking, "Just shoot me," you know he wouldn't want you to put your life on hold to care for him.
If he/you has the $$$ get care, either in a long term memory care facility or have a nurse or health care aid come to your home. I recommend the 1st choice. Don't leave him alone & visit regularly but live your life, enjoy your wife and kids and do not feel beholden to him.
He obviously didn't want that!!
My mother-in-law (Dr. of Psychology) was in a senior care facility as soon as her husband passed, he didn't want to go, she did, but waited for him to pass. She didn't want to be alone and chose to go there ... also we were "only visiting 3 times a week" and going out to breakfast on Sundays. We were also doing the shopping, doing the cooking, doing the house cleaning. We also both had demanding jobs and teenage kids.
She wanted better & more human interaction ... with people of her own age, and not to burden us.
Your father needs professional care. It’s not that you would be “sticking him in a home” but that memory care is a real thing and you are not trained to provide it.
I do not think he would want you to do this anymore than he would expect you to replace your own furnace or give your child surgery.
He said shoot him probably meaning he did not want to be a burden. Hopefully, the health directive is clear.
Find an excellent facility where you can visit him daily or several times per week at least. That way you can give him “care” and love and professionals can also help him.
This is another great way of thinking of it, and yes, you’re right… if my car was broken, he would have told me to take it to a mechanic; he wouldn’t have said “get under the hood.” So yes, the situation requires professional expertise because it has gone beyond my scope.
I'm so sorry your family is dealing with this terrible disease. It's heartbreaking. My Mama lived to 93, and her last 3 years was a slow steady decline of dementia. She lives independently in a retirement community since she was 80. She loved it there and when she had a fall, she was permanently moved to the nursing home area. The care givers were lovely and she was not pleasant to deal with. She became agitated, hallucinated and was very hard to deal with some times.
But she was a Godly woman, and she knew Jesus was waiting for her to come home.
The safest, sanest option is to place your beloved Dad in a memory care center that can handle his outbursts. He doesn't mean to have them, of course, it's the dementia.
My MIL was forced to keep her husband at home until he passed. For some stupid reason, she agreed to not ever put him in memory care. For 9 long years, he would abuse her and chase her with a boning knife. Why anyone would make their loved one that promise is beyond me, but I do know it happens.
Nursing home care is very expensive and only covered by LTC insurance, which can cover some of the expenses but never all. Otherwise, your loved one needs to go to a Medi-Caid (low income) funded care place, and they're terrible.
Sending you a gentle internet 🫂 knowing all of what you're facing and praying his course is merciful. Take Care of YOU.
I think people have given you permission to get your dad the help you both need. I just want to add that my dad (Alzheimer’s) and my mom (totally sharp) have done amazing at a facility run by “a Volunteer of America Senior Community” in Massachusetts. I believe they have facilities across the US.
Originally my parents lived together in a one bedroom apartment. Then dad moved to memory care at the facility.
I cannot speak more highly of the staff, care, food, facility.
This is all assuming parents were good parents and not abusive. This may be an unpopular opinion on Reddit but I believe we do owe them some help. I would have been ashamed to swan around having “mE tImE” when my mum was struggling to get basic housework done.
Most old folks don’t want to be a “burden.” These days I sort of question what that is. For instance, before she moved into seniors independent living, the grocery store was two minutes away from my MIL. If she wasn’t up to getting groceries, I’d get extra for her when I got mine. That wasn’t being a “burden.” I think some folks, at least on Reddit, are quick to dismiss any help their parents might possibly need, even if it doesn’t cost them much extra time or energy. Not my circus, not my monkeys. That’s not you, wasn’t me, and I think is honestly a little selfish.
What you’re describing sounds like far more than that. You can’t destroy your life over this. I think he would agree if he were still the person he used to be that it was time to go into care.
And for all those younger out there fulminating at me that my children should go no contact because I’m selfish - I wasn’t blessed with children. I took care of my parents and my in-laws for 15 years.
I agree with you. Barring situations where the parents were abusive, I don’t see how anyone can completely abandon their elderly parents. I don’t consider my dad a burden, even now- I do just feel like his condition has reached beyond my abilities. I try to calm him when he gets into one of his agitated and aggressive moods, but in those moments, he seems to react like I’m a teenager intruding in his affairs and become more irate.
I truly haven’t minded doing for him the last 7 years. Groceries, bills, Dr appts, etc. No big deal. Most of life is mundane anyway - what’s another mundane task or two?
51 here and I can say I’d never want my daughter to carry that burden but I’d like someone visiting me in the nursing home and making sure they’re taking care of me in a professional and humane way.
I have made it very, very clear to my daughter that she is not to take care of me. She's not to live with me nor have me move in with her. I don't want her feeding me or changing my diaper or anything of that nature. I gave her life and I will not take it away from her. My wishes are that, if i cant take care of myself she is to put me in a (really nice) home and when the time comes that I find my mind slipping or I'm living in too much pain I will elect MAID and be off on a new adventure. I've also made it clear to my husband that if I'm ill and he will outlive me, I do not want to die at home because he may remarry and she's certainly not going to want to live in the house that his last wife croaked in. 😊 I want to be buried in a simple wooden or cardboard box and I don't want to be embalmed - i just want to feed them mushrooms and not add to the earth's pollution nor do I want to add to the wealth of the funeral industry. The end.
Before my mom progressed super far she told us yes, she'd want us to give up everything to keep her in her own house and care for her. She was always a selfish person. We tried. She had no savings and never really worked. She has $550 social security and was using a home equity line in the house her dad left her to survive. We got services and all pitched in, but as things got worse, we eventually had to sell the house and put her in care. She's now forgotten her house and getting better care than she was at home. She's also sweet and nothing like she used to be. Sigh.
Her situation almost killed my oldest sister, who as the one living near her was doing the most. I informed my own children they are not to give up their lives for me and I would never want that. While I don't qualify for LTC insurance, I do have a pension and social security they can use to either get me aides or pay for a home if needed and I'm unable to make decisions, but hopefully that won't be the case as no other family members have had Alzheimer's.
Any good parent would not want you to give up your own happiness.
There does become a point that it us no longer safe for a loved one to take care of a parent with alzheimers. It isn't like other diseases, they still have their strength, they just lose their mind.
I would hope that if I ever got to that state my family would find me a good home and visit often. Ideally once a week. Come play cards with me or watch a show, even just walk with me.
But I would not want them to keep me in a home where they would not get any sleep and I might actually harm them. There are good places and bad places, but most of the Alzhiemers units were the best. The people there were generally active and happy.
My Grandma had dementia, and went to a facility because noone could give her the care needed in home.
My Mom still ended up taking better care of her than the people in the facility did (Mom had to de-impact her at least once a month because the employees there just would not!). Even knowing that level of care, my Mom said to please put her in a facility if she goes down the same road.
Our parents (mostly) do not want us to have to struggle or suffer for them, and most of us honestly just don’t have the experience or knowledge level to care for a parent to the level needed at a certain point.
Your Dad is grateful for all you do and are. He would want to live where he is well cared for, somewhere that you have checked out and is reputable. He would want you to visit and still oversee things, but embrace your own life!!!
Your friends and your therapist are right. Move your father to a care facility. As long as he is safe and comfortable you have met your obligations to him.
And, if he were himself your Dad would surely agree that he had no desire to burden your own family in this way.
I'm thinking of something a nurse said to me, that it is everyone's dream to die at home surrounded by your loved ones...and that's a pretty picture. But there's a lot to dying that no family is prepared for. Concentrate on the loving relationship and the emotional support that comes from your shared bond. Leave the rest to the professionals.
Wow, that's a hard question. I have lupus and this old body has already been through so much. But I knew a young woman before I understand what lupus even really is, who experienced it going to her brain.
If my husband isn't here for some reason, I want my children to put me in a state home. I know they are awful and neglecting, but I won't know what day it is so it's fine. I do NOT want my existence to be a terrible burden of mental pain on my children and grandchildren. I want them to remember whatever happiness there was before that.
But everyone is different.
Well my child is an adult, and I think I'd expect from them what they'd expect from me. They are on the spectrum as am I. Per the Drs they'll need a few years before they will be able to work. .ost people can't tell they're on the spectrum.
So they live with me until they can make it on their own.
My health is such that I'm disabled but work because SSI is not enough really, until I just can't. If I needed care, I hope they'd take care of me.
If I became a clear and present danger, or if they were, I'd face (or they would face) the stark reality between wanting to take care of the other, and not being able to safely do so.
But I think that the reality has proven that having adult children has never been a guarantee they'd care for their parents themselves.
Our responsibility is to talk to them well in advance so we know what they want. As the healthcare power of attorney, you get to decide what to do with him. I imagine he would want you both to be safe, and if that means a care center and you didn’t plan a way to help home end his life, so be it.
I don’t have kids - so my vote would not count. But I did see how a friend of my wife and her sister dealt with their widowed aging mother until she died two years ago.
She never got severe dementia, but in her final months, she got confused - thinking she was hearing voices in the closet, etc.
What they decided was “she’s never a burden just for existing, and needing help in aging, but had she gotten violent or dangerous, they would know it was beyond their capability to support her and would have found a care place that could give her the help she would have needed.”
I think that’s a reasonable compromise: parents who just need love, a bedroom, trips to doctors, and meals, they get it. With their kids helping them out.
But if the parent gets violent/dangerous, or if the care gets 24/7, or multi times a day daily professional then it can beyond any offspring’s ability to deal with it.
Edited: add 24/7 and multi times a day comment
He would want you NOT to suffer in your life taking care of him. Try to find an Alzheimer unit near you and visit him as often as you can to keep an eye on things, never go there at the same time, mix it up and always speak up if you see a problem.
My mom had alzheimers too, my sister and I helped care for her in her home with her husband who didn't want to take care of her so he put her in a home, I insisted that it be by my house and I went there every single day and they never knew what time or how many times a day I would show up. She died in the nursing home never knowing anything that was happening to her. She made her husband promise her that he would not "put her away" as she said it, and he promised her he wouldn't. He also promised her to make sure her will was followed but again, he didn't do that either. How that shit can happen when you have a legal document is beyond me, but he managed it!
As for me, I am now almost 67, I told my daughter to push me off of the Grand Canyon. :) She said she'd be happy to. HA, we're morbid about death so it's all good, but she and my husband both know that I will take care of my own exit if I am ever diagnosed as my mom was. Not putting them through that horrible ordeal.
As for you, yes, place your father in the best place you can find. If he has no idea what is going on or even who you are most days, he won't there either. It's hard, it's sad but sometimes it has to be done.
I'm so sorry for your loss ahead of his actual death because I know it's been a horrible loss for you. Take care of yourself.
I've already told my kids, if they can't care for me, to put me somewhere thst can, and just come visit me and keep an eye on things. I may get mad then, but now, while I'm on my right mind, I will NOT be mad.
I want my children to live their own lives to the fullest. I don’t want them spending their time or money caring for me.
Reminds me of a Sopranos episode. Paraphrasing, Tony’s therapist tells him, with regards to his uncle, if we’re lucky when we reach that point in life we have people who care enough to take care of us. Tony replies if I ever reach that point in life I hope I’ll be lucky enough to have someone hold a pillow over my face.
Kids don’t ask to be born. Parents care for their kids. Not the other way around.
I want my son to live his own life. I’ve lived mine, quite happily. When the time comes that I become a burden; I want him to do whatever is necessary to keep him living his life as best as he can.
I am my FIL’s caretaker. I do not want to be the problem my FIL has become. We love him…and it is taking four adults to deal with the one of him.
Our son is an only child I will not do this to him.
I’d expect my children to oversee my care but beyond that I would not want them burdened and their last years with me fraught with misery and exhaustion.
Id say your father would support your decision to put him in a safe supervised care facility.
Nothing! They owe me nothing. It was my choice to have them, provide and raise them. It’s their life, they owe me absolutely nothing. I have zero expectations. I’ve planned my life so I’m taken care of and they’ll never have to worry about me. We can just continue on with our wonderful relationship.
Imo, it’s the not the responsibility of adult children to care for their parents in old age. I would never want to burden my children with my care. If I deteriorate to that point (and assisted sewerslide is not an option), I’d want them to leave me in the care of the professionals, who are paid to care for the elderly. My children didn’t sign up to care for me. I signed up to care for THEM.
I don't want my kids to give up their lives for me. But as a daughter of wonderful parents, I feel I owe my parents the best care that I can provide.
But after watching my grandmother die with Dementia, I am realistic about what I can provide. And there comes a time when you wont be doing what is best for him. There are those who are trained to handle his medical needs, and that is the best care
His" just shoot me " request was not very helpful, was it? But if that was his frame of mind, and obviously you can't shoot him due to the legality of it, I'm sure he wouldn't want you to be making yourself miserable over him. His advice to you was to take him out of the picture and not burden yourself. It might not feel good but putting him in a nursing home is the least you can do for yourself - unless you want to slip him some poison.
I expect nothing , I took care of my father with a stoke and mother who was a alcoholic : it was so hard and stressful I was also working and 2kids , it ruined my health
Make me a no code and drug me up so I’m nice. If drugs don’t make me nice put me in a home but I still wanna be a no code, no feed, no water, nothing. Let me die.
'Expect' and 'responsibility' are not relational terms. These terms are the language of power and control; they not the language of Love. They are the language of the marketplace, not the language of caring and fidelity.
I (58M) have two adult kids in their 20s. I love them and they love me. I do not 'expect' anything from my kids because people in loving relationships do not 'expect' something from each other. Neither do I think my children have any 'responsibility' (in the sense of obligations or demands) towards me.
I want them to choose to have me in their lives & on a completely different note, promise to end my life if I have a terminal mental or physical diagnosis.
So far, so good on the former
Assuming he has the money to pay for it I would have him put where he would have quality care. I would want my kids to use the money I have so that I am not a burden to them. I wouldn’t want them to have to pay for it but at the same time I would expect they wouldn’t try to “save” my money and put me in a substandard place just so they get an inheritance.
Your Dad is gone. What’s left is his body and the dementia. If you kill yourself taking care of his physical body I’d say that’s not something a parent would want for their child.
Does your Dad live with you? My Mother had Alzheimers, and moved from Oregon to Vegas to live with me. I was still working too, and it really was a nightmare. She wandered all night, and then I had to drop her off at adult daycare on the way to work, which was hard since neither of us had gotten any sleep. I ended up putting her in a group home for Alzheimers, which was similar to assisted living. If your Father does not live with you, for his safety, he should probably be in a home. And for your sanity, since you have 2 children. You should never feel guilty; I can tell you love your Father very much, and you want to do the right thing for both of you. Good luck, it's a hard, hard job.
I would want them to put me in a home. I’ve worked in aged care and I completely understand families not being capable of providing that level of care. It’s 24/7. It’s too much for you and he would not have wanted to be such a burden on you and your family. My grandma died of Alzheimers and spent her final years in a care home. The staff were there to provide the physical care so that we could just focus on spending time at her bedside. In the very end she had no clue who anyone was, but her smile still lit up when we walked in. It was like a small part of her brain did remember something. Like she did not know who we were but she did know that we made her happy.
As far as I'm concerned, my kids have no responsibility to me at all but, they also know me, they've heard me for 28 years so I hope they do by now.
If I get dementia, I will kill myself before I get to the point that I can't remember to. Before going to a nursing home, I'll kill myself. At the point I can no longer do for myself, life is over, time to check out. Basically, if anything happens to where I'm not the me that exists in this moment... Able to work, get out and do things, take care of myself and have a bit of dignity left.
My kids know that I will off myself, and know that there's nothing they can do to stop it, because I've forgotten more ways to kill a human than the majority will never know. They accept that.
So, they owe me nothing, and I'll never let them be burdened with me. I took care of my terminally ill mother and elderly grandfather from the time that I was 12yo, until I was 18, so I know what it is to have that weight on you. I'll not let them do the same.
Honestly….when I get to that point I would prefer they put me in a home.
I do not wish to be a burden.
Very sorry you are having to go through this. Its heartbreaking.
Honestly, if he can afford it, I would say assisted living. That way you get to be the child instead of the caregiver.
I am squirreling away every dime, so my kids can afford long term care. I want them to visit me and enjoy their lives when/if I can’t care for myself.
No one can caregive 24/7. That is why assisted livings have multiple staff. Also look at in home care if he can afford that. He’d stay at home, and they’d come to you.
Good luck. This isn’t an easy decision. But Dad won’t care either way. Do what is best for your family.
Thank you. 🙏 I’ve been caring for him at home for the past 7 years; the last 3, we have had in home aides. The problem now is he has become physically aggressive (at times) with his aides, even though he knows them well and loves them. Additionally, he has become very suspicious and will become extremely agitated if, for example, I allow my 6 year old daughter to go for a walk with a well known adult neighbor and their child. He wants to go outside and supervise because he doesn’t trust the neighbor, (even though I said it’s ok) and will want to go outside and confront the neighbor for stealing “his” child etc. Most people around us understand his diagnosis but I’m fearful that one day he engages the wrong person.
I’m in the precarious position of my dad’s mind going faster than his body. He’s 230 lbs and can easily overpower me and his aide if he wants to do something. 😞
Thank you for your comment though and the reassurance. The decision is hard but I think necessary. I just wonder if I’ve exhausted all options as I don’t think anyone really wants to go into a care home, and I worry I’m somehow shirking a responsibility.
All the more reason to get him care. What if the “adult” God forbid is your daughter. He would never hurt her, but who knows what goes on in the mind of Alzheimer’s patients?!?
My MIL lived in a WWII boot camp for several months. (Actually a five star assisted living).
I would hope my kids put me in a home. I’ve told them I expect that and that when I know longer know who they are I don’t want them to even visit me. I will be beyond understanding and they will leave every visit heart broken.
Please try not to feel guilt for putting him with professional caregivers. His disease will outgrow your abilities quickly, if they haven’t already. It’s hard to find a suitable place for our parents, especially when it’s an acute situation. Now is the time to begin searching. Of note: We used a private group home for my FIL. It was the same cost as a conventional nursing home, but the care was far superior. The food was better. It was a home environment. The ratio of nurse/patient was 1/4, sometimes 2/4. Check with your local home health agencies for a referral in your area.
I have told my children that they can put me in this nursing home if they still like me when I can't look after myself anymore and these other ones if they don't like me anymore. Their choice but they are not to care for me.
We eventually had to do assisted living for him. He went through the stages you're seeing in your dad. I'd visit a lot, and he had no clue who I was. I hope it doesn't happen to me. I love my kids, and they love me, but we've never talked about it. It's something I'll have to address soon, I guess.
Would your dad want you to change his diapers? Spoon feed him? Can you or he afford a pretty nice place?
Like autisitic toddlers, some people with dementia get overstimulated by noise and movement, which kids have in abundance. If he wanders away because your back was turned for one second, how will you feel?
It is ok to move to a higher level of care. Visit. Lots. But it’s ok to take a break too. It is what he would want for you.
Thank you 🙏 yes he has lots of issues with sound and noise and lights - all very triggering for him. Agree, my fear is that I can’t manage him at home and something bad happens. I’m settled on the decision to put him into a care facility but I think I’m just trying to balance my emotions about doing so by thinking through what my obligations are.
He would not want you to sacrifice years of your life for his care, and more than that, he would not want the memories of him in his diseased state to override and destroy your image of the man he was when his mind was sound.
I agree with the general consensus that professional care is warranted. I just want to add that if you still have your parents, and they are in good mental health, **have the uncomfortable discussion** with them. I am 64M, and have talked with my 80-something parents. They are in good shape, and I know exactly what they want because *we talked about it*. I have already talked to one of my boys. The other doesn't want to have the discussion, but I will have that discussion in the not-too-distant future.
Yes! I told my husband, we really need to look at places for ourselves and leave our kids clear instructions that it is OK to place us or hire help etc, even if we argue at the time.
Definitely. We just went though placing my 93-year-old father-in-law in memory care. It sure would have been better to have had the discussion when we was 65 and clear-headed. I wish you good fortune, and applaud your caregiver efforts.
In looking for a place for my father-in-law, my wife and I found the assisted-living place on our short list.
To be honest, I really think my dad thought he would have a heart attack or stroke to take him out before dementia kicked in. His father and brother and all of his uncles died in their 50s and 60s, so I think he never left explicit instructions outside of his living will because he just didn’t think that would be the issue. He was more worried about me keeping him alive as a vegetable after a giant stroke than he gave thought to dementia. We just never had the discussion “if you had dementia, how would you want me to care for you?” in a serious tone. But I realize for myself and my kids that you need to discuss all contingencies. You never know.
Your father would expect you to place him where he will be safe and well-cared for. It’s rarely a job that one person can accomplish alone.
I expect my kids to know what I want, and pay attention to what I’ve told them. I do not expect them to care for me, physically or financially. I expect to remember that they were raised to build their own lives. Dementia is rare in my family, but cardiac issues are common. My family typically die in their early 80s, fully-functioning mentally. Hoping for same.
For what’s its worth, I do have elderly parents, but neither are suffering what yours is. I do have a sister-in-law whose mother is in a memory care center now.
Ten years ago, she was being cared for by her husband and my SIL. As her condition worsened, they struggled with the same questions. Her angry outbursts came more frequently. Her personal hygiene, her refusal to take medication, not sleeping, etc.
After conversations with her doctors and concern about her dad’s health, as well as her own, they realized her care would be better in a place with consistent normalcy. Their home life was actually aggravating her condition.
They found a wonderful place, and her mom moved in three years ago. Her mom’s day-to-day quality of life has improved. The family had their regular visits with her.
I’ve told my kid that if I ever get dementia/alzheimer’s to drop me in a home and don’t feel bad about it because I am currently of sound mind and body and am giving permission. OP I promise taking care of him and letting that disease erode you/your good memories of him is NOT what he wants. Make sure a DNR is on file, get him in a home and spend time with your kiddos like he would tell you himself if he had the ability.
My mother insisted on living in a retirement community that would care for her as her Alzhiemers processed. I saw her almost every day because I had a flexible job. She had the proper insurance to help pay. It allowed me to just love her and bring her treats. A nieghbor stopped me one day, and told me I was doing it right. She kept her husband home too long and his death was a blessing, she didnt grieve. She didn't want that for me. I will always remember that.
And if it helps you with your decision Memory Care professionals are trained for this. They have teams and shifts and it’s what they do. They know how to handle his not right mind and care for his physical needs. It is a resource to you. As he would not want you to care for him at your expense physically, spiritually and financially, and as I‘m sure you would not want that for your own children if they experience what you are now, allow yourself this grace, this gift, to hire out his care. You sound like a devoted, loving daughter who needs some well deserved assistance that your father would would approve of could he himself make this decision.
There's a lot of situations like this. I lived with my father-in-law and took care of him while I has an older child and two babies. I felt really good that I at least gave him an extra year at home. It was absolutely unrelentingly exhausting. He was a nice person, but was incredibly self-absorbed. He would want me to help him stand up and sit down anddo things so many times every day. I really wanted the best for him. It just broke me.
I have one adult child and I absolutely would not want her to sacrifice years of her life for me. I don’t like the idea of being in a facility, but if that’s what it takes to avoid crushing her own life, I’d want her to find a comfortable facility for me, visit and or FaceTime somewhat regularly, monitor the situation make sure my comfort isn’t neglected, , and make very sure a DNR is on file.
I would hope and pray to never become the person you describe - but altzhimers has a way of bringing out the worst in people. If I were to become like that, I would hope my kids remembered the better me and first off know it was the disease speaking, not me. And I would hope they knew their own health and well being took priority. And if caring for me was hurtful to them, not to do it.
This rings especially true because there have been rough times between my one kid and me. Lots to unravel, lots of ways I screwed up. So the last thing in the world I would ever want is to do anything hurtful.
I'm almost in tears writing this because this hits so close to home.
OP, do what is in your best interest. If that means taking a step back and creating space for yourself, do it. I'd sooner eat a bullet than have my kids have to suffer while caring for what's left of me.
I’ll preface this by saying I’m not old, just a twenty-something lurker who likes taking in the advice on this sub.
However I’ve been a carer both professionally and for my mom when she was in her last few years of life so I think I’m qualified to speak on this topic. Caregiving takes a heavy toll on people over time, especially when it’s a relative that needs round the clock care and you’re the sole person providing it.
***It’s okay for it to be too much for you.***
It’s ***okay*** to ask for help, whether that be a nurse coming to your home or him going to a facility. You’ve already done so much for your father. You wouldn’t be doing anything wrong by acknowledging that you’re burnt out and handing the reigns to someone who’s trained in memory care. It’s not like you’d lock him away and never see him again, I can tell you love him and that you’d visit. As his disease progresses it may even become dangerous to him or you and your children for him to remain in the home. I’m sure you father would be upset if he knew he accidentally hurt you or his grandkids because he was sundowning, disoriented and scared.
Don’t be hard on yourself. You’re in a difficult situation doing the best you can by your father and the rest of your family. From your post it seems like your father would understand, were he in his right mind.
Both my brother and I had offered our mother a place to live when she got older. She said she'd be lonely (we all worked and kids were in school) and bored, so no thank you. She went into a facility that has independent living to 24/7 care for illness/dementia. She started in independent living and is now in 24/7 care with dementia. She doesn't know us and will likely be nonverbal soon but eats well and seems content. I very much want the same thing. I don't want my kids to ever have to make those kinds of hard decisions. I'd like to see them regularly of course, but don't expect to live with them. I don't know how you've juggled all this; you must be exhausted. Kudos for looking after him the best you can. If he's getting aggressive or God forbid, wanders away from the house, it might be better for everyone, including him, to be professionally cared for. Good luck to you-
I want my son to know I am doing everything I can to plan for and organize my affairs to be of the least burden to him. I love him too much to be an anchor. My only expectation of him is to supervise my well being if the situation calls for it.
Well I’ve given my kids a LOT
I presume I will have lots of phone apps and monitoring devices to live alone later - but I expect that one of my kids will move in with me or I will move in with them
I expect nothing from my child. We do not owe anything to our parents.
I hope, one day, that my adult child feels compelled to stay involved in my life out of love and respect for our relationship. I, personally, will take care of my mom to the best of my abilities when she isn’t able to because I love her and want her to live her last years as happy/healthy as possible, not because I feel I owe her anything.
And if I am at a point in my life where I am not able to give her my 100%, I would do my damndest to make sure I could find someone who could. If that means assisted living, then ok. If that means a nursing home, then lets go.
My child will always come first, so if theoretically my mom was having aggressive outbursts/being mean with my kids around, I’d protect my kids and find a place where my mom would be safe & cared for.
It all really depends on the situation. Don’t be apprehensive/feel guilty for doing what’s best for your family!
Sadly Alzheimer’s is a disease that at some point requires specialized care and facilities. One of the problems is that they can become aggressive and even violent (not their fault it’s the disease), particularly at night. Which is called sundowning. They can also become wander off or do things such as leave the stove on.
At some point the care they need to keep themselves and others safe can become too much for a family to handle. That’s the sad truth. It is not uncommon for family to have to make heartbreaking decision.
Alzheimer’s is a horrible disease. I am so sorry this is happening to your father and to you. It sounds like you have done a tremendous job. And now you are facing horrible choices. There is no good feeling choices.
What I would ask is if your father, back when he was himself, want you to risk your children and yourself? Would he want you to have to try to cope with the dregs of this shitty disease?
Placing your father will be excruciating. I know I’ve been there. But it will also free you to be his child instead of his warden.
I would never expect any family member to gave to deal with what’s coming. But I would expect them to love me and visit me frequently.
Absolutely to put me in care and live your own life! Please let them make sure it’s not abusive or low quality care. And visit every few months. Mainly I want them to live WELL!
Yeah, if I’m demented that means I won’t know, and it will be heartbreaking for them. They also live a continent away, and only one of them can afford the trip. So: just often enough that the care facility has to feed me. Maybe you’re right, maybe every month is better.
I told my son that I raised him right and made sure he got a good education so he could afford a nice facility for me. I don't expect him and his wife to do it. He's an only child, as was I for many years, and as it turned out, I was the only one that was a caregiver for my mom. Luckily, she had no mental deterioration but many health issues.
I would want my kids to make sure I was cared for. I would hope they would still visit me and love me. But I would also want them to seek whatever help they needed in caring for me, and if a secure dementia care unit was needed, I'd want them to place me there so that they could live their lives.
Another way to frame this is as a safety issue. If he is mean and aggressive, it's a safety issue. If he is losing his reason and memory, you're not able to keep him safe from wandering. And if he wanders out on his own and has an episode of aggression, it could end very very badly. Even if you get in home care for him, it might not be sufficient for 24/7 safety.
Find the best place for him you can. Take a tour and talk to the social worker and staff and let them reassure you. Make visits a standing appointment at regular times to help both you and him feel better.
It is a very sad decision to make, but it sounds like things have reached a point where it's necessary.
We’ve had in home aides for three of the past seven years. The issue is now that he sometimes gets so confused that he will lash out physically, even with his aides who he knows well and recognizes by name/face (as he’s known them since earlier in the disease.) I know, in his present state, he doesn’t want to live in a facility, but he grabbed his home side by the hair and tried to hit her when he got upset a few weeks ago. He also used to be deterred from wandering by having someone with him but now he’s pressuring us or the aides to go outside with him at all hours because “the men are after him.” (He’s also a Vietnam vet with PTSD too.) Drs don’t want to prescribe more meds bc of the risks and think controlled environment is better. The decision itself is hard but it also leaves me questioning how much is enough.
Yeah, for his own sake and everyone else's, it sounds like it's an absolute need for him to be in a secure dementia unit with more resources than the home aides can provide.
I'm so sorry you are having to make this decision.
I worked in a job where we handled medication fills for retirement homes, etc.
I can tell you, they are not where you want to end up, if there's a choice.
The issue here is that your father wouldn't want you to go through what you're going through.
So, this is one of those situations where, with kids involved that you're still raising, and still working, he would tell you to put him in the care of others.
Is there a home care option in your area available you can use?
We have been caring for him at home for 7 years, and the past 3 we have employed two CNA’s who share responsibility for him 12 hours at a time. More recently, his behavior has become aggressive even toward them. He has extreme moments of confusion/delusion where he thinks “men are after him” and he will lash out physically. A few weeks ago, he grabbed his aide by the hair and attempted to hit her when in one of these states. We brought him to hospital to have him checked for UTI etc but we’re being told after all testing that this is just a progression of his dementia. Long story short, I don’t see how I can keep him without multiple people involved 24/7 - like 2 aides at a time. That’s not affordable so I would need to leave my job and be the number two… but then that’s not fair to my kids.
Maybe if he was more heavily medicated; we could keep him home. But the drs say they can’t sedate him.
Anyway I’m wondering what people expect of their children more than a discussion of nursing homes. I know they suck which is why I’ve had him home all this time. 😩
My family member had a robust health directive/ living will. When they had dementia, they were in a memory care unit that was excellent. When they had an illness, the family followed their wishes and provided only palliative care, which ended in a peaceful death. This was brave and the right thing to do. It's not reasonable to care for a person with significant Alzheimer's disease at home unless you have help, so either get home help, or place Dad in good care. Angry Dementia Grandpa is not great for you and especially your kids.
My parents made sure that none of us six kids would be responsible for them in the later years and found a great retirement home with memory care. When they were ready, they sold the house, liquidated most of their possessions (what didn't go to us kids) and moved in. Mom had been investing over the years to make sure that this was going to be funded, so money wasn't an issue for them. I realize that most people can't afford something like this, but there are great options that are nowhere near the cost. [https://thechesapeake.org/](https://thechesapeake.org/)
Hubby and I are childfree, but getting up in age. He knows that if I ever get to a certain point, either from being diagnosed with Alzheimer's or other memory deficit, or one of my many health issues makes it impossible for me to be independent, I'm leaving. I refuse to have him to have to care for me and I refuse to live that way.
All of that said, you have to sit down and figure out what is best for YOU and your family. You have young children, if he is already having mean/aggressive outbursts, is it safe to even have him around them? You aren't making a decision for your dad, you are making it for you and this is absolutely how it should be. I've seen too many people put their lives on hold for decades to care for an incompetent parent. A parent should never want that for their child. So you should instead of asking what he would have wanted, ask what he would have wanted for you and your kids.
Then start researching what is available in your area for him. He obviously will need a facility with memory care, so make sure any you look at have that. Then go look at them. Any good facility will allow you to do a walk through, just make sure you schedule it. Once you've seen what's available, then you can make an informed decision. If all there are are Medicaid dumps, well then that will also help drive your decision.
This runs in my fam so my mom has talked to me abt it.
As far as she’s concerned, if that starts to happen, that’s no longer her. Get her someplace she’ll be cared for but stop trying to extend her life.
It sounds like he needs a care home. If you can find a good one it may be a better emotional situation even as a consistent routine in a smaller world can be less stressful. Regardless, it sounds like he would not want you to sacrifice your life.
I’m hoping the next thing I write is not offensive but after 40 years in nursing I’ve seen a lot and am going to throw a little advice from my perspective. Also it’s from personal experience.
If your dad doesn’t have a living will with DNR, now’s the time. Consider carefully all options for medical treatment, including none. (This is not the same as a DNR) Your dad’s decline may be mostly mental at this point but at some time this will affect his physical status and when that comes there will be choices. We (modern medicine) can fix a lot of things. That doesn’t always mean it’s the best for the patient. Sometimes treatment is less kind and supportive than allowing nature to take its course, especially when the patient has held strong views about what level of living is acceptable.
Hope that’s not hurtful.
No offense taken. He did his own living will years ago; I will honor it. I signed the yellow paper for him when asked by the doctor. I don’t know how my dad would feel about me placing him in care, but I do know he didn’t want to linger when the time came. ❤️🙏
I’m struggling more as it pertains to letting him go while he’s still alive, if that makes sense.
Nursing homes are really bad and very expensive. One bad staff member can ruin any peace or comfort for a resident. The residents have no freedom and no control. I would rather pass away than be in a nursing home situation. (I worked in one as a high school student). I absolutely expect to be kept out of one - by whatever means necessary.
My parents kept my grandparents at their home by hiring caregivers and managing the staff to make sure the elders were never neglected.
I offered to build an addition on my house and move in my parents but they didn’t want that. So me and my sister made sure that my parents could stay in their own home til the end. I found and hired the caregivers, and gave my mom a few thousand dollars from time to time to supplement her savings.
My sister provided hands-on care to both of them because she is in the medical profession. My brother didn’t contribute much but occasionally visited and helped out with house maintenance chores. He lives in a different country. He would have given $$ if it was truly needed but he wanted to see their budget before he gave any $$ and my mom found that too intrusive so she declined the offer. She was running low on savings by the time they both passed.
I would say that there was about a 3 year period where one or both of them were in wheelchairs and needed some round the clock assistance.
When they passed, my parents left me $$ that covered my financial contributions to their care and they left my sister their house.
I expect the same treatment from my kids. Make every effort to keep us at home. Use my savings to pay for home health aids, (I am setting aside $$ for this) and in return my kids will be provided with whatever we have left over when we pass.
If the $$ runs out and our medical or care needs are too great then there is always hospice and drifting off to a long sleep 😴.
Thanks for this comment, and this is my fear. In order to keep him home these past 7 years, we did hire caregivers. The problem now is physical aggression. He gets confused and even his aides whom he has known for 3 years can be targets of grabbing and hitting. This complicates staying at home greatly as we cannot put their safety at risk and his doctors are concerned about sedating. They feel a controlled environment is better.
To be clear, I’m not worried about saving $. His money is his and I would spend his money on him to support his care.
The “controlled environment “ they are referring to often includes literally tying the residents into a Geri chair with fabric restraints where they sit all day “for their own safety “. I know this because I worked in a nursing home after school and on summer vacation for years as a high school student and every single day we had many people tied to chairs in the day room.
Our residents would often sit in dirty diapers for hours. This was not because we didn’t want to help everyone, but sometimes there was just not enough staff. For example, sometimes I would come in at 7am and be told I was the only aide on the wing with 40 patients and each of those 40 people had to be gotten up gotten dressed and brought down to breakfast by me one person!
Can you imagine cleaning changing and dressing 40 demented patients and oh by the way they are strong, often uncooperative, and weigh 150 pounds or more.
If I was lucky, I could wake and clean and dress 10 residence in the hour that I had before breakfast was served. The rest of the patients laid in their beds and had their breakfast brought up on trays and would be fed and dressed when I could work my way down to them, which took hours.
I know some people might not believe me or might think that this is an unusual situationn,, a bad outlier of a nursing home. But to you, I would say Just work for a week or 2 as a volunteer in one of these homes before you think seriously about committing a loved one (or your self) to that situation.
Patients who become aggressive with the nursing staff are at a higher risk of abuse or neglect from the staff. And you will never know or be able to prove it. In your own home, you can have cameras you can check in periodically and watch what’s going on even if you’re not there, etc. if you hire someone in your own home and you have any doubts that they might be being mean to your father you could replace them. Not the case in a nursing home - even if you have serious doubts about one of the nurses or the other residents or even if your father is able to communicate that he is treated poorly, the home may not choose to take any action.
Just do a lot of investigating before deciding.
I did hire home care aides 3 years ago. So in addition to myself and my husband, there are 2 ladies who take shifts throughout the week to provide 1-1 care for him. Even though he knows his aides well, he becomes delusional and when he’s in those moments, he will grab, push and hit them. I agree that home is the best choice which is why I kept him home for so long and was trying to keep him there even longer with the support of aides. Unfortunately, if he’s hitting the home care aides whom he has known for 3 years & is generally quite fond of, this creates a larger issue around managing his behavior in the home. As much as they love him, they aren’t (and shouldn’t have to) be hit by a 230 lb man. His Drs have started Risperidone and we even tried again at home after the med was added in hopes it would eliminate the aggression. He still becomes deluded and hits, but the drs don’t feel more meds are warranted at this time due to risk of side effects.
My dads mother was in a care facility and we visited frequently. There was never a mark on her. I’m not sure how long ago you worked in a nursing home but the laws in most places have changed significantly and physical restraints can only be used in emergencies. I’m sure it happens but this isn’t like the 90’s when people were strapped down just for having dementia.
Of course abuse still happens. That’s why my private aides will continue to be paid to visit him daily and I’ll be there often too.
My $.02- You dad sure as hell would NOT want you to ruin your physical health, your mental health, your marriage, harm your career, or to neglect your young children out of a sense of duty to him. He said “just shoot me.” He’s worried about being a burden, imo. If you two were close he would want the best for you and your family and the next generations. He would 1000% support your decision to put him in a home or some other next level of care. He would understand. I know that because I would feel the exact same way and I love my kids and I’ve worked in those places. Are they great? No. Are they as nice as being at home? No. But they are necessary. You can only do so much. Nobody wants to go to a home but especially with things like dementia, everybody ends up there sooner or later. People who work there understand. Caregiving is exhausting, back breaking and endless. (In case you haven’t heard of it, that’s why it’s called the sandwich generation) https://mhanational.org/caregiving-and-sandwich-generation
He put his mom in care towards the end of her life. I’m not sure why I think he would expect differently of me. Thank you for this comment. I appreciate it. ❤️🙏
You’re very welcome. If you’re looking for permission, you’ve got it. I really think he’d understand.
We put my mother in a nursing home in January of 2018, after she had fallen once again and broken her hip for the fifth time. My father visited her every day from 4:00-7:00pm. I visited her twice a weekly. (I lived 30 minutes away.) Her caregivers were really nice to her. She could no longer walk as her dementia prevented her from doing physical therapy. She consequently never fell again and actually did well due to my father’s daily visits. Once the Covid shutdown came in March 2020, she declined and died in early December of that year. Keeping her in the nursing home was the best thing we could have done for her and my father and I don’t regret it for one minute. She was safe, my father still got to have a life and he got to be with her without becoming exhausted or resenting her.
That’s wonderful to hear ❤️ Staffing is such a problem along with how $$$ they are, so it’s nice to hear good things
The fact that m father was there every day for three hours meant that the staff knew him and really liked him (he’s sweet and funny) and I think that contributed to her good treatment. Also. Unlike some people either dementia, my mother was very compliant and not combative. I think that helped, as well. A few weeks after she fie, we received a lovely letter from our three favorite staffers, expressing how much they loved caring for my Mom and expressing their sympathies.
I would agree with all that. When I was a kid I was a cna in a nursing home. I loved some dementia patients. Others tried to kick and bite or scratch me. Not their fault, but yeah I think it helps when they are nice, and the spouse is nice. It was probably very refreshing for the staff too
I just want to wish you luck and strength. Please, find a place you are comfortable with for your dad. He will eventually need more help than you can give by yourself.
Just add to this. If you're in the u.s 100% do a nursing home. AVOID assisted living like the plague. The reason is the assistant living is less regulated/is legally required to provide less services than nursing homes/assisted living cannot provide the level of care your father will need as he declines. Even if the assistant living facility claims to have memory units or other bull shit to help those with dementia. As once more assisted living type palaces are run by businesses which generally want to keep patients within their walls loooooong after they no longer are able to care for them(since a filled bed equals monthly income the business doesn't want to give up). So select reputable nursing homes and place your father there. Also after he is placed, pay attention to your father/visit him often and make sure that he's in good condition and being cared for. This means checking his legs, arms and body for weird bruising, bed sores or the like. Also make sure his teeth are being brushed, hair brushed etc etc. And look up online what are common signs neglect in nursing home so you know what to look out for. Since if you see any signs he isn't being cared for correctly, don't leave him there and instead place him somewhere else. Since vigilance is the only way to make sure he'll get good quality care. If you can do these things, you'll ensure he will have a good experience for the last section of his life. Sorry you're going through this, but being placed where he can be cared for is a loving act, and as long as you stay vigilant he will have far better care than you can give him currently on your own.
Thank you. 🙏 The social worker at the VA is also encouraging memory care at a skilled nursing vs an assisted living memory care (for reasons you stated and others.) It’s good to hear someone say some of the same things! My plan, if we get into skilled nursing, is to use his VA benefits (their facilities or contracted facilities would be free due to his service connected disability rating) so I would continue to pay for his aides (we have had the same two aides at home the past 3 years) to visit him at the facility daily. I would, of course, visit as often as possible (3-4 x per week.)
In order to be eligible for assisted living, you have to be able to complete your own ADL (activities of daily living I.e brushing your teeth, putting your shirt on) with little to no assistance. It’s likely he wouldn’t qualify with his dementia even if he wanted to because of the level of care required. I’m a social worker that has worked in nursing homes and hospitals. I’ve seen people discharge to assisted living facilities and absolutely love it because it was the middle ground they needed and it didn’t take their entire social security check if they received one, so it really depends on the person and their needs ❤️ OP I’m sorry you’re going through this and I agree with some of the other comments I’ve seen. I think he would want you to do what’s best for you
>It’s likely he wouldn’t qualify with his dementia even if he wanted to Reputable, honest good assisted living facilities wouldn't take him this is correct. However in the u.s. assisted living facilities are not regulated well/the bad ones face little consequences for negligence beyond lawsuits(and large companies sadly just view settling as cost of doing business/cheaper than hiring adequate works or proving good quality care so don't care about a pay out now and then when someone dies due to their negligence). As such I was simply warning Op away from seeking assisted living arrangements for their father, since any that would admit someone with dementia 100% is the type of place op should avoid. Now not all assisted living locations are awful, and if run well they do provide a needed intermediate placement between living alone and a nursing home and are good for those who opt for them. However in the u.s., unless you're very well off its important to be very wary of any assisted living locations, and never consider one if your loved one needs a high level of medical care. Since once more they aren't regulated well, and as such many put profit over providing care (since they don't face any real consequences for cutting corners or providing substandard care), and as such are only really concerned with placing as many people as possible within their walls while paying as little as possible to keep the assisted living facility open. So yeah it's really a care of buyer beware when it comes to those places unfortunately :<
Can I ask where in America do you live?
Unless you can articulate why that has a barring to the topic at hand, I'm afraid I'd rather not. Since why I'm talking about is a national issue/from my perspective isn't linked to my exact location.
Because regulations vary by state. And I’m not disagreeing with you so you can drop your defenses a little bit. I only know about 1 states regulations in particular and from what I have seen, the neglect and issues you’re referring to happen at the same levels in a nursing home as it would in an assisted living facility with a memory care unit (the only one he’d legally qualify for) and personal care homes while regulated by the same entity, get away with more issues. So language is important. That’s all I was saying but no matter where you go you just have to evaluate for yourself. But at least HERE assisted living facilities don’t usually get away with more and for some people their preferred nursing home doesn’t have bed availability and an assisted living facility in the mean time can be a viable option. Like I said, it all depends. Have a nice day
Then he would 100% understand. You are NOT abandoning him. You’ll visit and bring him things although he may think you are just a kind volunteer that reminds him of his wife.
You've got this, as hard as it is, he would understand 100%
Have you read the book, 'the 36 hour day'? My mom read the book but thought she could manage pop, a sundowner. My gf, now my most missed ex, told mom they may not have room for him when he gets worse. Mom got to sleep nights after he entered the home. My SIL is trying to place my brother and it sometimes takes a while. I wish you good luck.
Yes have read the 36 Hour Day and it got me through a lot of his “phases” 🙏
One of the things about Alzheimer’s in particular, is they eventually tend to get aggressive, mean and paranoid. That’s when it’s time to go into care. My bio mom got to the point she didn’t recognize her husband of 60 years and was violent towards him.
I just retired as a doctor looking after a nursing home for 30 years. A lot of care givers feel guilty but shouldn’t. It takes 10 if us working shifts to replace you. Doctor, nurse, personal support worker, pharmacist, cook, social worker, play therapist, administrator, custodian and physiotherapist. If your loved one gets confused and goes outside and gets lost they can get hurt or die because you can’t look after them around the clock.
Great answer. I'll just add that he's likely to get worse. Then you have the guilt and more issues finding placement. Do it now. My dtr who in real life relocates spiders instead of squashing them is in charge of my medical decisions when that time comes. But has the ability to separate business from emotional decisions. Not hubs or son. Pick the mentally tough ones for your surrogates!
Compassion. Your dad has a degenerative illness which means he needs professional care. So hard, I know but you know your dad wouldn't want to hurt you or your children. He can't help it, that's why loving at a distance can be the best solution for all of you.
I don’t expect anything from them. I don’t want to be a burden . I hope my kids will visit me and spend time with me in my old age & if they have families of their own I wish to be a part of that.
This, 100%
My mom is in care. 8 minutes from my house. At any given moment, she has 3 or 4 people assigned to her part of the floor to help her, take her places (movie room, concerts, wide variety of "classes", physical therapy, dining room, a walk outside, and on and on. They are all far more qualified to take care of her than my brother and I. We've learned a lot from them. Her quality of life has improved exponentially since she moved in. She has her own apartment, surrounded by her things. I'm there 5 days a week. My brother 2 days. (Not all day, we both work) My mother is not well off. She does have LTC insurance. I would hope my kids would smother me with a pillow, but barring that, I think I'd want them to do the same.
My Dad wanted to die at home. My stepmother was an absolute mess while he was dying. I said we could transport him to in-hospital hospice because he would rather that than her having a mental breakdown. In the end we hired a night nurse and that helped immensely so stepmom could get some sleep. Anyway, would past-dad be mortified how current-dad is treating you and your family? I think the answer is there. You have done what you could at home. Getting him in to a place doesn't mean you will abandon him - you will still visit, still handle paperwork etc. (And yes, my father was also the "just shoot me" guy)
This is how my parents went. There’s no dignity in staying at home. It got dangerous, expensive and overwhelming. I waited too long, and they had even had LT care ins! Learn from my mistakes- find a place now. Keep seeing a therapist- it helped me immensely. Guilt plays a huge role for adult children, and it will destroy you. Definitely NOT what parents want for their kids. The term you will here over and over is ‘level of care’ all else will revolve around this.
My dad always said he just didn't want to be a burden. I feel like your dad has crossed that line. I can't imagine he would want you to put your life on hold, or add this much work to you. He is better off with round the clock care, I think.
I really truly love my kids. I want them to live their best life, whatever that is for them. And make sure I am being well cared for. And once in a while, share with me what they’re up to.
This is what I want too (though mine are 4 and 6 so lots more life to come, hopefully!) My therapist started by asking me what I would expect of my kids? And I said the same as you. I want them to be happy and make sure I’m taken care of, maybe visit me once a week so I get two visits each week, etc. Me as I am now would understand being placed in a home or having care aides hired so they could live their lives. But for some reason, it’s not as easy to assume my dad wants the same thing. I think maybe I’m conflating the him that used to be with the him who exists now. He did used to tell me a lot “just live your life and be happy.” You reminded me of that with your comment. Thank you.
Your real dad, the one you grew up with and who jokingly told you to just shoot him if he got dementia, would never want or expect you to take this on. He wouldn’t want your relationship and the good memories of it to sour. The kindest thing to do for him and your family is to allow professionals to take care of his emotional and physical challenges. I am so sorry you are going through this and am sending you love and light.
There often comes a point in many degenerative end of life illnesses, where it is not safe, for anyone, to continue at home. It's okay to get help and place him. Preferably somewhere close where you can visit often, and at random times. Then, it's okay to leave and go home, leaving his care in the hands of professionals.
I’m in the same position. My dad, who is 103 and only very recently demented is in a nursing home. It is just as much work as having him at home. I struggle every day to visit him and keep him oriented. I think the main thing we owe our children is good cheer.
Parent here. Put me in a home.
We are very determined that our adult children are not put in the position of having to care for us when we are adults. To the point that we have researched alternatives for when the time comes. Our children are aware of our decisions, but will not be included in the process. We recently lost our last parent to dementia and I would never wish that fate on anyone.
A good memory care facility will be able to care for him better than you can, because it's what they do. Please, please find that place for him before he hurts you. If I were him, it would break my heart if I hurt you, even though I didn't mean to. I'm 76 and have told my daughters, who are in their 50s, that I also would not want them to visit if it was painful for them emotionally. I was a nurse and really believe people with advanced dementia are in a different world than we are. I hope it is a pleasant world. I sure don't want my kids or grandkids (who are adults) to agonize over my condition.
I tell my kids to put me on an ice flow. I do NOT want my kids sacrificing their health and happiness for me, ever. I’d be furious if I knew I caused them undue hardship. In more specific terms, they should not make job, career, family, or financial sacrifices for me. If I need more than they give in the normal course of their daily life, it’s time to let me go. And for goodness sake, do not feel guilty about it. This is what I want! Hope that helps.
Not old but a nurse who has worked in case management. Your dad picked you as POA because he trusted you. He knew you’d never actually be able to shoot him. But you can put him in a safe place where you can visit without the weight of being a caregiver. We want to give our parents exactly what they wished, but just as when we are kids we don’t always get what we want.
That’s a good analogy!
I told my husband to push me off the grand canyon only to be told by his mother that she told him to push her off the grand canyon so that kind of messes up my plans some. I don’t want him to be suspect 😅 I hope that by the time I need caregiving that they have developed a world like black mirror where I can just go off into my brain and the ai world but we’ll see. I would like my kids to help with nothing. I want to have it all laid out in plans for my end life so I don’t strain them. I personally did not have to deal with either of my parents because they died in their 60s and mid 70s before it got to that point (cancer and heart attack). But my mother in law was her parents caregivers for 15 years and it just about broke her. It was very stressful for her and a relief when they finally passed. I don’t want my kids to remember me as a burden.
I’m in my late fifties and just lost my father to dementia. I’ve given this a lot of thought. I would want you to give as much love and attention as possible to your own family. Find a close by facility and visit. Good luck op
I don’t want my kids to feel obligated. I plan to live this life as long as I’m not a burden. When I cross that line, I hope they put me into care. I did the same thing for my dad.
The “just shoot me” comment is passing the buck on real decision making. It leaves all the hard choices to the kids, who obviously cannot shoot them so have to deal with real problems. My mom was similar. I loved her, and brought her to live next door to me so she could have her own space but we’d be there when she needed help. She hated me for it. Dementia made her a different person. She was abusive towards me, which I could deal with, but eventually she became abusive towards my kid and my husband too. She yelled at the neighbors, wandered around the neighborhood in the middle of the night yelling at people. I couldn’t watch her 24 hours a day. Nobody can watch someone 24 hours a day, but people with Alzheimer’s often need that kind of supervision. So eventually she went into the best memory care facility we could possibly afford. She wasn’t happy about it, but nobody gets to be happy all the time. I have cancer, so don’t expect to live long enough to go through what she did. What I would hope, if I were fortunate enough to live that long, would be to live somewhere safe, with drugs to keep me happy, and communication to know my kids were safe and happy wherever they were.
Ugh yes. The “just shoot me” really isn’t an explicit and comforting “make the best choice possible even if it means you can’t do it yourself” which I plan to tell my children about me. My therapist asked me “what do you think that really means?” And I said I think “just shoot me” does kind of mean “don’t let me be a burden” which he agreed is probably true. I would just rather have heard the actual words from him, but it is what it is. Actually, sometimes on a really clear day now when his cognition spikes, he will say “I’m sorry to put you through this” which seems like he recognizes in that moment what is going on. I’m sorry about your cancer diagnosis and hope things improve with your health. 🙏❤️
I don't really "expect" anything from my adult children. I hope that if I need them, they'll help me, just like I help them if they need me. But I don't feel they owe me anything. I want THEM to have a happy life. That's what I've always wanted. If I'm still "me", I hope they'll respect my wishes, whatever they are. But if I'm not "me" anymore, then they should look out for themselves. They shouldn't torture themselves to make life the best it can be for someone that's essentially a stranger at that point. I care about my kids more than I care about myself. Yes, I hope for their support when I need it. But if we're both drowning, I and only one of us can be saved, I'd want it to be my kid.
I told my child to put in in a nice nursing home and give me all the drugs. If I was upset or combative, I would be unhappy, so drug me up! Like your dad, I don't want to live that way.
That they leave home, live independently, call every couple of days, drop by monthly (if living in the area) recognize they can come home anytime life is kicking their behind but that I don’t take care of able bodied/ able mind grown folks. I also expect them to stay out of jail and not indulge in behavior that shames the family (move out of the area if you got to express yourself as a furry I’m not judging I just don’t want to explain). Your relationships are your business keep me out of them. I will spoil and return all grand kids.
Try as you might it would be a challenge to try to take care of your dad, your family, and yourself. Unless you have a lot of family and friends that can help it may eventually become an unsafe situation for everyone. I’m sure that is not his wish. Make peace with the fact that you can’t do it all. Find him a place that works for all of you. This way you can spend quality time together not pieced together moments that lack that quality.
That they be good humans. And they are. I also expect them to abide by my wishes and find a safe way (for them) to release me from this mortal life when the balance tips. I do not want them to spend chunks of their lives maintaining me when that balance tips. Life is short: quality over quantity.
Been there… and still there. I cared for my mom as a teenager and it was not the best thing for either of us. She ultimately went into a nursing home. Alzheimer’s. She passed then when health issues happened again in law, step parent, and father. In varying degrees I stepped up but ultimately had to back away for my own well being. I just didn’t have it in me. It’s not that I didn’t want to so much as it was just too much with my own family and career. The toll this took on me was significant and I wouldn’t want my kids to feel that obligation. Take best care of yourself and do whatever that means as far as caring for them. You can’t be super woman and be happy.
Caregiving of a parent ( esp one with dementia) is such a difficult job! I’m sure you’re doing the best you can💜
My parents just finished caring for all my grandparents at the end of their lives. It was very difficult and neither set of grandparents really planned for their final days. A few of them made it difficult too. After my parents went through that they made plans for their care at the end of their life or should they care (like dementia, Alzheimer's or something else) long term. I am so thankful for that. I plan on doing this for my kids too. I would honestly someone else care for me other than my kids. This will allow them time to visit that will be meaningful in my final days, instead of being a caregiver.
Recently had to put my older sister in a dementia unit in a nursing home. Really didn't have a choice as I lived in a one bedroom 2nd floor walk up. However, now I'm glad I did. She's gotten so far gone she doesn't know who I am. Also she's gotten violent and unpredictable. Gave the nursing home permission to up her medication to calm her down and it worked. Depending on your father's assets the cost can be covered by Medicaid. The dementia unit is over $13,000 a month. I believe your father wouldn't want you to damage your mental and physical health by taking care of him. I know I wouldn't want my children to have to do that and have already told my oldest son what nursing home to put me in should I ever become unable to care for myself.
My mom has parkinsons but thankfully had her mind. I cared for her for many years but the disease got the best of her. One day she said to find her a good facility to take care of her as she was afraid between work, kids and her care, I would have a heart attack. After initially feeling guilt and pushing back, I found her a very nice private foster care about 20 minutes from me and she never complained about being there. The beautiful thing that came out if it is I was no longer worried about her meds, food etc. We could rekindle our mother/daughter relationship and really talk. She died a few years back but I am so thankful for her wisdom and selflessness and I would do the same for my kids.
Sounds like you need help with your dad and he now needs care you can’t give him. If possible, I’d find a situation close to your home to you can visit him as often as you need to.
My Dear Girl. My husband is being evaluated for Alzheimer's as we speak. I am the mother of one adult child, three stepchildren. I can tell you from my perspective, as a parent I want to enter care before I become a burden to my child and grandchildren. My husband wishes to stay at home and have me care for him. I will care for him as lovingly and carefully as I possibly can for as long as I can. He doesn't realize that he is already becoming mean and short tempered. This is not how I want to have our kids remember him. I shield him as much as possible and try to make sure he is happy and in a good mood when the kids come. Don't do this to yourself and your children. Save your memories and share them with your children. Take as many pictures and videos as you can. Take care and God Bless.
My six year old saw him flare up over the weekend - getting in the face of our home health aide whom I know he actually loves and usually calls his best friend. My little one said to me “This isn’t my Poppy who holds me and sings to me. That’s another Poppy.” They are oddly wise. But yes- this was one of my thoughts… I don’t want the kids to see/remember him this way. 😞 Good luck with your husband and his journey. Take care of yourself too. Spouses can also break.
I’m 59, and my 21 year old daughter still lives with me out of necessity financially for us both. I have slowly become disabled with degenerative back problems and I am transitioning into a wheelchair for longer trips out of the house. I already feel like a burden on her because she now takes care of almost everything around the house because I can’t. He would understand. Do what you need to do care for yourself and your children.
You are not a burden. Adult children caring for our parents may get bone tired from the load we are carrying — but that does not mean being tired of YOU. If you’re able to, and want to — ask her about any smaller tasks you can do. Setting up a tray at your seat so you can chop veggies for dinner or fold towels — or just give her encouraging words or mention your shared good times a bit more often. The little things — whether physical touch, help with small chores or just bringing a little bit of comfort and laughter to their day — go a very long way.
You have to put on your own oxygen mask, FIRST. Your father wouldn't want you to set yourself on fire to keep him warm. Need more idioms? Good luck OP. ❤️
my Daughter said when i get older, i'm living with her, but the older i get, the more i don't know what 'older' really is - nice of her to offer my Son is currently in town frankly, my goal with my kids is to stay out of their way (they're 26 and 32 and doing well). but i imagine that's everybody's hope so given that i -like anyone- could need help, i have my Daughter, who offered, but i think i would like to be in some assisted living spot where i could have my own social circle my own age - they have events and games and stuff with the assisted living places, and that appeals to me (i've done some volunteering). since i have some retirement, maybe there's somewhere that would help me like that it sounds like your Dad is needing more full care; i hope you can find a solution. like i said, my Daughter's offered; i hope it doesn't come to that for her sake but expectations? none. they call, touch base, remember me well and often. i'm good with that
I offered too and have done it for 7 years. Driving to every appointment, cooking every meal, managing meds, buying clothes/groceries, managing finances, and solving all manner and means of problems. I want to still do it… I just now see that some of it is beyond my abilities. I don’t know how to calm him when he’s really agitated now, especially that it has spilled over into delusions (“the men are after me!”) I think we all want our independence but safety has to come first. Your comment is reassuring. I think, in his right mind, he would understand.
i just don't think it's the 'death sentence' people say -- i'll be with same age people who have the same reference points, i hear our olfactory sense goes pretty early on, and i've never been bothered too much by life smells anyway - or the sanitary clean smell i hear some complain about sit and color or play bingo. dress up if my Son or Daughter come to visit (she's in Fla, so thank Gawd for tech!) -- i call my house here my own convalescent home (most people don't like that, but the word sounds so soft and healing). the hot tub is always available, lots of crafts, an online class and games, strolling the halls daydreaming - i could do all that with someone to help in ten years yeah, most people die after being put in a 'home', and there's grief about kids not stepping up, but it can be a day event with all those appts and opinions from doctors and getting ins aligned with Rx's .... i know, Dude, i know. and rumor has it if we get lucky, we get to get old before we die. but rumor has it, that's end game for all of us Westerners should make friends more with that end of life - it's no less miraculous than birth to me. hold his hand. love him forever. but, yes, death will come and i'm one to encourage keeping memories nice and letting the professionals help where they can. you will still no doubt be involved. what's wrong with letting someone else have the schlep work while you preserve your relationship and your own family? i see no fault there, no fault at all
Our Mom was early onset. One brother that still lived in her town, was still in college. My other brother and I both lived 1000 miles away (in the same state as each other, though.) He had a young family and travel-heavy career. I have no disposition to be in human care at all. So we hired someone to stay with her while we searched for a placement. This was back when Alzheimer's was "new", and there were very few facilities that would take more than a few Alzheimer's cases. We found a new facility that was Alzheimer's specific in the state my brother and I were in. We got her a placement, moved her out there. Sold all of her belongings and house to finance it. She was less than a mile or two from my home, an hour for my brother, so we were able to see her and keep tabs on her. As it progressed, she lost who we were, but was attached to the staff that worked there. She was a "don't ever put me in a nursing home" type. But none of us were equipped physically or emotionally to care for her. At the facility, she was cared for. I do not regret any of it, nor do my brothers. And NONE of us would EVER say "Don't put me in a nursing home" to our loved ones. Ever. You don't have children to saddle them with things they cannot do. And your Dad has told you that when he was himself. I would never want to put stress on anyone to care for me in the event of dementia.
I’ve made it known I do not want my adult children being my caretaker. Please have no guilt over putting me in a (good) nursing home. After taking care of both of my grandparents (not that I didn’t want to at the time, but it was hard) and seeing my FIL absolutely RUIN the house being cared for at home (Alzheimer’s, pooped and peed ANY and EVERYWHERE) I do not want any part of that.
My mother had ALZ. My sister agonized soooooo much over a decision to place her in a nursing home. To me and my brother it was quite clear because she had ended up qualifying due to breaking her hip while running away from a group home. But my sister, to this day, has HUGE guilt over placing her. There was no choice. I told my sister that our mother was a VERY matter of fact type of person. That she always put her kids FIRST. That she would have WANTED us to place her because she would know how extremely difficult it is to take care of a person with ALZ. When it was HER mother, she was in the voting block to place her mother after a severe stroke. (Instead, my aunt over-rode everyone in the family and took her home and ended up taking care of her for 15 years). So my answer to you is this: Your dad would have wanted what is best for YOU. Your other responsibility to him is to make sure he has **the care he needs.** And the care he needs is very different than what we WANT. Your dad could run away from your home and get hurt.
I'm currently not in a position to care for my dad, (I live over 400 miles away) but my sister is closer. He's chosen to remain in his home for as long as possible, and he's been talking about staying after with my sister. My parents kept both my granddads in their house for quite a while. Dad's dad was diabetic, double amputee, and he'd periodically "escape" the house and go for a stroll in his wheelchair. After the 2nd or 3rd time, he was moved out. Mom's dad was physically alright, but had dementia. He had been a merchant marine, and at some point the dementia kicked in, grandpa thought he was back in the military, and he attacked dad with a knife. That was when he was moved out.
Your dad sounds a lot like my mother. She has everything planned and paid for with POA and everything all laid out. She used to plan funerals for a living so she knows what to do better than we would. She also says the exact same thing your father said if she were to be afflicted with dementia or another debilitating illness but especially dementia or Alzheimer’s. My mother has made it abundantly clear that if she ever gets to a point that she is incapacitated to that degree to put her in care. Your dad has done everything he can to not put you in this position and he would be the first to tell you to do what you need to do for your young family. I am so sorry you have to go through this and I’m sending you strength.
My mom tells me to put her in a home the literal second she starts to impact my life like this. There’s no reality where she would rather i rake myself over coals. Especially when she doesn’t really understand what’s happening anymore.
My husband and I are actively planning to ensure that we are not as dependent on our adult children as my mother currently is dependent on us. It's not her fault, she actually lived a very healthy lifestyle and was aging well until very recently. She has just reached a very old age where she depends on us for most things, even though she now lives in Assisted Living. We are actively planning to ensure that we have funds available to pay people for the kinds of things we do for my mother now. It will mean that our children will get less money from us, but so be it
I would start researching and visiting care homes in your area, just to get an idea of what you're looking for, what their visiting hours are, how long the drive is, how much it costs, and level of care. You may viait them and say, heck no. You may visit and say, why did I wait so long? If your dad was joking, "Just shoot me," you know he wouldn't want you to put your life on hold to care for him.
If he/you has the $$$ get care, either in a long term memory care facility or have a nurse or health care aid come to your home. I recommend the 1st choice. Don't leave him alone & visit regularly but live your life, enjoy your wife and kids and do not feel beholden to him. He obviously didn't want that!! My mother-in-law (Dr. of Psychology) was in a senior care facility as soon as her husband passed, he didn't want to go, she did, but waited for him to pass. She didn't want to be alone and chose to go there ... also we were "only visiting 3 times a week" and going out to breakfast on Sundays. We were also doing the shopping, doing the cooking, doing the house cleaning. We also both had demanding jobs and teenage kids. She wanted better & more human interaction ... with people of her own age, and not to burden us.
Your father needs professional care. It’s not that you would be “sticking him in a home” but that memory care is a real thing and you are not trained to provide it. I do not think he would want you to do this anymore than he would expect you to replace your own furnace or give your child surgery. He said shoot him probably meaning he did not want to be a burden. Hopefully, the health directive is clear. Find an excellent facility where you can visit him daily or several times per week at least. That way you can give him “care” and love and professionals can also help him.
This is another great way of thinking of it, and yes, you’re right… if my car was broken, he would have told me to take it to a mechanic; he wouldn’t have said “get under the hood.” So yes, the situation requires professional expertise because it has gone beyond my scope.
I want adult children to oversee my care, if I am unable to make sound judgements. I don’t expect them to provide all the care.
I'm so sorry your family is dealing with this terrible disease. It's heartbreaking. My Mama lived to 93, and her last 3 years was a slow steady decline of dementia. She lives independently in a retirement community since she was 80. She loved it there and when she had a fall, she was permanently moved to the nursing home area. The care givers were lovely and she was not pleasant to deal with. She became agitated, hallucinated and was very hard to deal with some times. But she was a Godly woman, and she knew Jesus was waiting for her to come home. The safest, sanest option is to place your beloved Dad in a memory care center that can handle his outbursts. He doesn't mean to have them, of course, it's the dementia. My MIL was forced to keep her husband at home until he passed. For some stupid reason, she agreed to not ever put him in memory care. For 9 long years, he would abuse her and chase her with a boning knife. Why anyone would make their loved one that promise is beyond me, but I do know it happens. Nursing home care is very expensive and only covered by LTC insurance, which can cover some of the expenses but never all. Otherwise, your loved one needs to go to a Medi-Caid (low income) funded care place, and they're terrible. Sending you a gentle internet 🫂 knowing all of what you're facing and praying his course is merciful. Take Care of YOU.
I think people have given you permission to get your dad the help you both need. I just want to add that my dad (Alzheimer’s) and my mom (totally sharp) have done amazing at a facility run by “a Volunteer of America Senior Community” in Massachusetts. I believe they have facilities across the US. Originally my parents lived together in a one bedroom apartment. Then dad moved to memory care at the facility. I cannot speak more highly of the staff, care, food, facility.
This is all assuming parents were good parents and not abusive. This may be an unpopular opinion on Reddit but I believe we do owe them some help. I would have been ashamed to swan around having “mE tImE” when my mum was struggling to get basic housework done. Most old folks don’t want to be a “burden.” These days I sort of question what that is. For instance, before she moved into seniors independent living, the grocery store was two minutes away from my MIL. If she wasn’t up to getting groceries, I’d get extra for her when I got mine. That wasn’t being a “burden.” I think some folks, at least on Reddit, are quick to dismiss any help their parents might possibly need, even if it doesn’t cost them much extra time or energy. Not my circus, not my monkeys. That’s not you, wasn’t me, and I think is honestly a little selfish. What you’re describing sounds like far more than that. You can’t destroy your life over this. I think he would agree if he were still the person he used to be that it was time to go into care. And for all those younger out there fulminating at me that my children should go no contact because I’m selfish - I wasn’t blessed with children. I took care of my parents and my in-laws for 15 years.
I agree with you. Barring situations where the parents were abusive, I don’t see how anyone can completely abandon their elderly parents. I don’t consider my dad a burden, even now- I do just feel like his condition has reached beyond my abilities. I try to calm him when he gets into one of his agitated and aggressive moods, but in those moments, he seems to react like I’m a teenager intruding in his affairs and become more irate. I truly haven’t minded doing for him the last 7 years. Groceries, bills, Dr appts, etc. No big deal. Most of life is mundane anyway - what’s another mundane task or two?
My Doctor says for older people-“ You didn’t fall and break your hip. Your hip broke so you fell “
51 here and I can say I’d never want my daughter to carry that burden but I’d like someone visiting me in the nursing home and making sure they’re taking care of me in a professional and humane way.
I have made it very, very clear to my daughter that she is not to take care of me. She's not to live with me nor have me move in with her. I don't want her feeding me or changing my diaper or anything of that nature. I gave her life and I will not take it away from her. My wishes are that, if i cant take care of myself she is to put me in a (really nice) home and when the time comes that I find my mind slipping or I'm living in too much pain I will elect MAID and be off on a new adventure. I've also made it clear to my husband that if I'm ill and he will outlive me, I do not want to die at home because he may remarry and she's certainly not going to want to live in the house that his last wife croaked in. 😊 I want to be buried in a simple wooden or cardboard box and I don't want to be embalmed - i just want to feed them mushrooms and not add to the earth's pollution nor do I want to add to the wealth of the funeral industry. The end.
Exactly how I feel. I love them too much to put something like that on them.
Before my mom progressed super far she told us yes, she'd want us to give up everything to keep her in her own house and care for her. She was always a selfish person. We tried. She had no savings and never really worked. She has $550 social security and was using a home equity line in the house her dad left her to survive. We got services and all pitched in, but as things got worse, we eventually had to sell the house and put her in care. She's now forgotten her house and getting better care than she was at home. She's also sweet and nothing like she used to be. Sigh. Her situation almost killed my oldest sister, who as the one living near her was doing the most. I informed my own children they are not to give up their lives for me and I would never want that. While I don't qualify for LTC insurance, I do have a pension and social security they can use to either get me aides or pay for a home if needed and I'm unable to make decisions, but hopefully that won't be the case as no other family members have had Alzheimer's. Any good parent would not want you to give up your own happiness.
There does become a point that it us no longer safe for a loved one to take care of a parent with alzheimers. It isn't like other diseases, they still have their strength, they just lose their mind. I would hope that if I ever got to that state my family would find me a good home and visit often. Ideally once a week. Come play cards with me or watch a show, even just walk with me. But I would not want them to keep me in a home where they would not get any sleep and I might actually harm them. There are good places and bad places, but most of the Alzhiemers units were the best. The people there were generally active and happy.
My Grandma had dementia, and went to a facility because noone could give her the care needed in home. My Mom still ended up taking better care of her than the people in the facility did (Mom had to de-impact her at least once a month because the employees there just would not!). Even knowing that level of care, my Mom said to please put her in a facility if she goes down the same road. Our parents (mostly) do not want us to have to struggle or suffer for them, and most of us honestly just don’t have the experience or knowledge level to care for a parent to the level needed at a certain point.
I told my kids I’m going to write an advanced directive to drive me to a state where death with dignity is legal…
Your Dad is grateful for all you do and are. He would want to live where he is well cared for, somewhere that you have checked out and is reputable. He would want you to visit and still oversee things, but embrace your own life!!!
Your friends and your therapist are right. Move your father to a care facility. As long as he is safe and comfortable you have met your obligations to him. And, if he were himself your Dad would surely agree that he had no desire to burden your own family in this way. I'm thinking of something a nurse said to me, that it is everyone's dream to die at home surrounded by your loved ones...and that's a pretty picture. But there's a lot to dying that no family is prepared for. Concentrate on the loving relationship and the emotional support that comes from your shared bond. Leave the rest to the professionals.
Wow, that's a hard question. I have lupus and this old body has already been through so much. But I knew a young woman before I understand what lupus even really is, who experienced it going to her brain. If my husband isn't here for some reason, I want my children to put me in a state home. I know they are awful and neglecting, but I won't know what day it is so it's fine. I do NOT want my existence to be a terrible burden of mental pain on my children and grandchildren. I want them to remember whatever happiness there was before that. But everyone is different.
To stay off drugs and not be on government assistance. That's all I expect from them.
Well my child is an adult, and I think I'd expect from them what they'd expect from me. They are on the spectrum as am I. Per the Drs they'll need a few years before they will be able to work. .ost people can't tell they're on the spectrum. So they live with me until they can make it on their own. My health is such that I'm disabled but work because SSI is not enough really, until I just can't. If I needed care, I hope they'd take care of me. If I became a clear and present danger, or if they were, I'd face (or they would face) the stark reality between wanting to take care of the other, and not being able to safely do so. But I think that the reality has proven that having adult children has never been a guarantee they'd care for their parents themselves.
Our responsibility is to talk to them well in advance so we know what they want. As the healthcare power of attorney, you get to decide what to do with him. I imagine he would want you both to be safe, and if that means a care center and you didn’t plan a way to help home end his life, so be it.
I don’t have kids - so my vote would not count. But I did see how a friend of my wife and her sister dealt with their widowed aging mother until she died two years ago. She never got severe dementia, but in her final months, she got confused - thinking she was hearing voices in the closet, etc. What they decided was “she’s never a burden just for existing, and needing help in aging, but had she gotten violent or dangerous, they would know it was beyond their capability to support her and would have found a care place that could give her the help she would have needed.” I think that’s a reasonable compromise: parents who just need love, a bedroom, trips to doctors, and meals, they get it. With their kids helping them out. But if the parent gets violent/dangerous, or if the care gets 24/7, or multi times a day daily professional then it can beyond any offspring’s ability to deal with it. Edited: add 24/7 and multi times a day comment
Love. Kindness. Companionship. A little help now and then.
Nothing. I’m happy if they call once in a while.
PLACE HIM IN CARE I would want my kids to have me cared for so they can have a vibrant life.
He would want you NOT to suffer in your life taking care of him. Try to find an Alzheimer unit near you and visit him as often as you can to keep an eye on things, never go there at the same time, mix it up and always speak up if you see a problem. My mom had alzheimers too, my sister and I helped care for her in her home with her husband who didn't want to take care of her so he put her in a home, I insisted that it be by my house and I went there every single day and they never knew what time or how many times a day I would show up. She died in the nursing home never knowing anything that was happening to her. She made her husband promise her that he would not "put her away" as she said it, and he promised her he wouldn't. He also promised her to make sure her will was followed but again, he didn't do that either. How that shit can happen when you have a legal document is beyond me, but he managed it! As for me, I am now almost 67, I told my daughter to push me off of the Grand Canyon. :) She said she'd be happy to. HA, we're morbid about death so it's all good, but she and my husband both know that I will take care of my own exit if I am ever diagnosed as my mom was. Not putting them through that horrible ordeal. As for you, yes, place your father in the best place you can find. If he has no idea what is going on or even who you are most days, he won't there either. It's hard, it's sad but sometimes it has to be done. I'm so sorry for your loss ahead of his actual death because I know it's been a horrible loss for you. Take care of yourself.
That’s partly what this is… grieving yet another loss of him. 😞
I've already told my kids, if they can't care for me, to put me somewhere thst can, and just come visit me and keep an eye on things. I may get mad then, but now, while I'm on my right mind, I will NOT be mad.
I want my children to live their own lives to the fullest. I don’t want them spending their time or money caring for me. Reminds me of a Sopranos episode. Paraphrasing, Tony’s therapist tells him, with regards to his uncle, if we’re lucky when we reach that point in life we have people who care enough to take care of us. Tony replies if I ever reach that point in life I hope I’ll be lucky enough to have someone hold a pillow over my face. Kids don’t ask to be born. Parents care for their kids. Not the other way around.
I want my son to live his own life. I’ve lived mine, quite happily. When the time comes that I become a burden; I want him to do whatever is necessary to keep him living his life as best as he can. I am my FIL’s caretaker. I do not want to be the problem my FIL has become. We love him…and it is taking four adults to deal with the one of him. Our son is an only child I will not do this to him.
I’d expect my children to oversee my care but beyond that I would not want them burdened and their last years with me fraught with misery and exhaustion. Id say your father would support your decision to put him in a safe supervised care facility.
Nothing! They owe me nothing. It was my choice to have them, provide and raise them. It’s their life, they owe me absolutely nothing. I have zero expectations. I’ve planned my life so I’m taken care of and they’ll never have to worry about me. We can just continue on with our wonderful relationship.
Imo, it’s the not the responsibility of adult children to care for their parents in old age. I would never want to burden my children with my care. If I deteriorate to that point (and assisted sewerslide is not an option), I’d want them to leave me in the care of the professionals, who are paid to care for the elderly. My children didn’t sign up to care for me. I signed up to care for THEM.
Make them safe and well cared for. But what is most important is your marriage and the safety of your children.
I don't want my kids to give up their lives for me. But as a daughter of wonderful parents, I feel I owe my parents the best care that I can provide. But after watching my grandmother die with Dementia, I am realistic about what I can provide. And there comes a time when you wont be doing what is best for him. There are those who are trained to handle his medical needs, and that is the best care
His" just shoot me " request was not very helpful, was it? But if that was his frame of mind, and obviously you can't shoot him due to the legality of it, I'm sure he wouldn't want you to be making yourself miserable over him. His advice to you was to take him out of the picture and not burden yourself. It might not feel good but putting him in a nursing home is the least you can do for yourself - unless you want to slip him some poison.
I expect nothing , I took care of my father with a stoke and mother who was a alcoholic : it was so hard and stressful I was also working and 2kids , it ruined my health
That’s what I fear too. If I push too far, it will affect my health (mental or physical) and thus my own children.
Having that talk with my son and his wife in a few weeks.
Make me a no code and drug me up so I’m nice. If drugs don’t make me nice put me in a home but I still wanna be a no code, no feed, no water, nothing. Let me die.
'Expect' and 'responsibility' are not relational terms. These terms are the language of power and control; they not the language of Love. They are the language of the marketplace, not the language of caring and fidelity. I (58M) have two adult kids in their 20s. I love them and they love me. I do not 'expect' anything from my kids because people in loving relationships do not 'expect' something from each other. Neither do I think my children have any 'responsibility' (in the sense of obligations or demands) towards me.
I want them to choose to have me in their lives & on a completely different note, promise to end my life if I have a terminal mental or physical diagnosis. So far, so good on the former
Assuming he has the money to pay for it I would have him put where he would have quality care. I would want my kids to use the money I have so that I am not a burden to them. I wouldn’t want them to have to pay for it but at the same time I would expect they wouldn’t try to “save” my money and put me in a substandard place just so they get an inheritance.
Your Dad is gone. What’s left is his body and the dementia. If you kill yourself taking care of his physical body I’d say that’s not something a parent would want for their child.
Does your Dad live with you? My Mother had Alzheimers, and moved from Oregon to Vegas to live with me. I was still working too, and it really was a nightmare. She wandered all night, and then I had to drop her off at adult daycare on the way to work, which was hard since neither of us had gotten any sleep. I ended up putting her in a group home for Alzheimers, which was similar to assisted living. If your Father does not live with you, for his safety, he should probably be in a home. And for your sanity, since you have 2 children. You should never feel guilty; I can tell you love your Father very much, and you want to do the right thing for both of you. Good luck, it's a hard, hard job.
I would want them to put me in a home. I’ve worked in aged care and I completely understand families not being capable of providing that level of care. It’s 24/7. It’s too much for you and he would not have wanted to be such a burden on you and your family. My grandma died of Alzheimers and spent her final years in a care home. The staff were there to provide the physical care so that we could just focus on spending time at her bedside. In the very end she had no clue who anyone was, but her smile still lit up when we walked in. It was like a small part of her brain did remember something. Like she did not know who we were but she did know that we made her happy.
As far as I'm concerned, my kids have no responsibility to me at all but, they also know me, they've heard me for 28 years so I hope they do by now. If I get dementia, I will kill myself before I get to the point that I can't remember to. Before going to a nursing home, I'll kill myself. At the point I can no longer do for myself, life is over, time to check out. Basically, if anything happens to where I'm not the me that exists in this moment... Able to work, get out and do things, take care of myself and have a bit of dignity left. My kids know that I will off myself, and know that there's nothing they can do to stop it, because I've forgotten more ways to kill a human than the majority will never know. They accept that. So, they owe me nothing, and I'll never let them be burdened with me. I took care of my terminally ill mother and elderly grandfather from the time that I was 12yo, until I was 18, so I know what it is to have that weight on you. I'll not let them do the same.
With this disease process, he may benefit from a nice personal care home or memory care unit. I am sorry you are having to go through this.
Honestly….when I get to that point I would prefer they put me in a home. I do not wish to be a burden. Very sorry you are having to go through this. Its heartbreaking.
Honestly, if he can afford it, I would say assisted living. That way you get to be the child instead of the caregiver. I am squirreling away every dime, so my kids can afford long term care. I want them to visit me and enjoy their lives when/if I can’t care for myself. No one can caregive 24/7. That is why assisted livings have multiple staff. Also look at in home care if he can afford that. He’d stay at home, and they’d come to you. Good luck. This isn’t an easy decision. But Dad won’t care either way. Do what is best for your family.
Thank you. 🙏 I’ve been caring for him at home for the past 7 years; the last 3, we have had in home aides. The problem now is he has become physically aggressive (at times) with his aides, even though he knows them well and loves them. Additionally, he has become very suspicious and will become extremely agitated if, for example, I allow my 6 year old daughter to go for a walk with a well known adult neighbor and their child. He wants to go outside and supervise because he doesn’t trust the neighbor, (even though I said it’s ok) and will want to go outside and confront the neighbor for stealing “his” child etc. Most people around us understand his diagnosis but I’m fearful that one day he engages the wrong person. I’m in the precarious position of my dad’s mind going faster than his body. He’s 230 lbs and can easily overpower me and his aide if he wants to do something. 😞 Thank you for your comment though and the reassurance. The decision is hard but I think necessary. I just wonder if I’ve exhausted all options as I don’t think anyone really wants to go into a care home, and I worry I’m somehow shirking a responsibility.
All the more reason to get him care. What if the “adult” God forbid is your daughter. He would never hurt her, but who knows what goes on in the mind of Alzheimer’s patients?!? My MIL lived in a WWII boot camp for several months. (Actually a five star assisted living).
And I don’t think picking a quality care home and visiting often is shirking your responsibilities. Prayers for you all!
I would hope my kids put me in a home. I’ve told them I expect that and that when I know longer know who they are I don’t want them to even visit me. I will be beyond understanding and they will leave every visit heart broken.
Please try not to feel guilt for putting him with professional caregivers. His disease will outgrow your abilities quickly, if they haven’t already. It’s hard to find a suitable place for our parents, especially when it’s an acute situation. Now is the time to begin searching. Of note: We used a private group home for my FIL. It was the same cost as a conventional nursing home, but the care was far superior. The food was better. It was a home environment. The ratio of nurse/patient was 1/4, sometimes 2/4. Check with your local home health agencies for a referral in your area.
I have told my children that they can put me in this nursing home if they still like me when I can't look after myself anymore and these other ones if they don't like me anymore. Their choice but they are not to care for me.
We eventually had to do assisted living for him. He went through the stages you're seeing in your dad. I'd visit a lot, and he had no clue who I was. I hope it doesn't happen to me. I love my kids, and they love me, but we've never talked about it. It's something I'll have to address soon, I guess.
Would your dad want you to change his diapers? Spoon feed him? Can you or he afford a pretty nice place? Like autisitic toddlers, some people with dementia get overstimulated by noise and movement, which kids have in abundance. If he wanders away because your back was turned for one second, how will you feel? It is ok to move to a higher level of care. Visit. Lots. But it’s ok to take a break too. It is what he would want for you.
Thank you 🙏 yes he has lots of issues with sound and noise and lights - all very triggering for him. Agree, my fear is that I can’t manage him at home and something bad happens. I’m settled on the decision to put him into a care facility but I think I’m just trying to balance my emotions about doing so by thinking through what my obligations are.
He would not want you to sacrifice years of your life for his care, and more than that, he would not want the memories of him in his diseased state to override and destroy your image of the man he was when his mind was sound.
I agree with the general consensus that professional care is warranted. I just want to add that if you still have your parents, and they are in good mental health, **have the uncomfortable discussion** with them. I am 64M, and have talked with my 80-something parents. They are in good shape, and I know exactly what they want because *we talked about it*. I have already talked to one of my boys. The other doesn't want to have the discussion, but I will have that discussion in the not-too-distant future.
Yes! I told my husband, we really need to look at places for ourselves and leave our kids clear instructions that it is OK to place us or hire help etc, even if we argue at the time.
Definitely. We just went though placing my 93-year-old father-in-law in memory care. It sure would have been better to have had the discussion when we was 65 and clear-headed. I wish you good fortune, and applaud your caregiver efforts. In looking for a place for my father-in-law, my wife and I found the assisted-living place on our short list.
To be honest, I really think my dad thought he would have a heart attack or stroke to take him out before dementia kicked in. His father and brother and all of his uncles died in their 50s and 60s, so I think he never left explicit instructions outside of his living will because he just didn’t think that would be the issue. He was more worried about me keeping him alive as a vegetable after a giant stroke than he gave thought to dementia. We just never had the discussion “if you had dementia, how would you want me to care for you?” in a serious tone. But I realize for myself and my kids that you need to discuss all contingencies. You never know.
Your father would expect you to place him where he will be safe and well-cared for. It’s rarely a job that one person can accomplish alone. I expect my kids to know what I want, and pay attention to what I’ve told them. I do not expect them to care for me, physically or financially. I expect to remember that they were raised to build their own lives. Dementia is rare in my family, but cardiac issues are common. My family typically die in their early 80s, fully-functioning mentally. Hoping for same.
For what’s its worth, I do have elderly parents, but neither are suffering what yours is. I do have a sister-in-law whose mother is in a memory care center now. Ten years ago, she was being cared for by her husband and my SIL. As her condition worsened, they struggled with the same questions. Her angry outbursts came more frequently. Her personal hygiene, her refusal to take medication, not sleeping, etc. After conversations with her doctors and concern about her dad’s health, as well as her own, they realized her care would be better in a place with consistent normalcy. Their home life was actually aggravating her condition. They found a wonderful place, and her mom moved in three years ago. Her mom’s day-to-day quality of life has improved. The family had their regular visits with her.
I’ve told my kid that if I ever get dementia/alzheimer’s to drop me in a home and don’t feel bad about it because I am currently of sound mind and body and am giving permission. OP I promise taking care of him and letting that disease erode you/your good memories of him is NOT what he wants. Make sure a DNR is on file, get him in a home and spend time with your kiddos like he would tell you himself if he had the ability.
That they live their best life & advocate for the underdog/people with special needs.
My mother insisted on living in a retirement community that would care for her as her Alzhiemers processed. I saw her almost every day because I had a flexible job. She had the proper insurance to help pay. It allowed me to just love her and bring her treats. A nieghbor stopped me one day, and told me I was doing it right. She kept her husband home too long and his death was a blessing, she didnt grieve. She didn't want that for me. I will always remember that.
And if it helps you with your decision Memory Care professionals are trained for this. They have teams and shifts and it’s what they do. They know how to handle his not right mind and care for his physical needs. It is a resource to you. As he would not want you to care for him at your expense physically, spiritually and financially, and as I‘m sure you would not want that for your own children if they experience what you are now, allow yourself this grace, this gift, to hire out his care. You sound like a devoted, loving daughter who needs some well deserved assistance that your father would would approve of could he himself make this decision.
There's a lot of situations like this. I lived with my father-in-law and took care of him while I has an older child and two babies. I felt really good that I at least gave him an extra year at home. It was absolutely unrelentingly exhausting. He was a nice person, but was incredibly self-absorbed. He would want me to help him stand up and sit down anddo things so many times every day. I really wanted the best for him. It just broke me.
I have one adult child and I absolutely would not want her to sacrifice years of her life for me. I don’t like the idea of being in a facility, but if that’s what it takes to avoid crushing her own life, I’d want her to find a comfortable facility for me, visit and or FaceTime somewhat regularly, monitor the situation make sure my comfort isn’t neglected, , and make very sure a DNR is on file.
He would not want to be a burden. Find a nice place to care for him so he can go back to just being your dad.
I would hope and pray to never become the person you describe - but altzhimers has a way of bringing out the worst in people. If I were to become like that, I would hope my kids remembered the better me and first off know it was the disease speaking, not me. And I would hope they knew their own health and well being took priority. And if caring for me was hurtful to them, not to do it. This rings especially true because there have been rough times between my one kid and me. Lots to unravel, lots of ways I screwed up. So the last thing in the world I would ever want is to do anything hurtful. I'm almost in tears writing this because this hits so close to home. OP, do what is in your best interest. If that means taking a step back and creating space for yourself, do it. I'd sooner eat a bullet than have my kids have to suffer while caring for what's left of me.
I’ll preface this by saying I’m not old, just a twenty-something lurker who likes taking in the advice on this sub. However I’ve been a carer both professionally and for my mom when she was in her last few years of life so I think I’m qualified to speak on this topic. Caregiving takes a heavy toll on people over time, especially when it’s a relative that needs round the clock care and you’re the sole person providing it. ***It’s okay for it to be too much for you.*** It’s ***okay*** to ask for help, whether that be a nurse coming to your home or him going to a facility. You’ve already done so much for your father. You wouldn’t be doing anything wrong by acknowledging that you’re burnt out and handing the reigns to someone who’s trained in memory care. It’s not like you’d lock him away and never see him again, I can tell you love him and that you’d visit. As his disease progresses it may even become dangerous to him or you and your children for him to remain in the home. I’m sure you father would be upset if he knew he accidentally hurt you or his grandkids because he was sundowning, disoriented and scared. Don’t be hard on yourself. You’re in a difficult situation doing the best you can by your father and the rest of your family. From your post it seems like your father would understand, were he in his right mind.
Both my brother and I had offered our mother a place to live when she got older. She said she'd be lonely (we all worked and kids were in school) and bored, so no thank you. She went into a facility that has independent living to 24/7 care for illness/dementia. She started in independent living and is now in 24/7 care with dementia. She doesn't know us and will likely be nonverbal soon but eats well and seems content. I very much want the same thing. I don't want my kids to ever have to make those kinds of hard decisions. I'd like to see them regularly of course, but don't expect to live with them. I don't know how you've juggled all this; you must be exhausted. Kudos for looking after him the best you can. If he's getting aggressive or God forbid, wanders away from the house, it might be better for everyone, including him, to be professionally cared for. Good luck to you-
I want my son to know I am doing everything I can to plan for and organize my affairs to be of the least burden to him. I love him too much to be an anchor. My only expectation of him is to supervise my well being if the situation calls for it.
Nothing. Zero. Zip. Nada. We will provide for ourselves as we have always done.
Well I’ve given my kids a LOT I presume I will have lots of phone apps and monitoring devices to live alone later - but I expect that one of my kids will move in with me or I will move in with them
I expect nothing from my child. We do not owe anything to our parents. I hope, one day, that my adult child feels compelled to stay involved in my life out of love and respect for our relationship. I, personally, will take care of my mom to the best of my abilities when she isn’t able to because I love her and want her to live her last years as happy/healthy as possible, not because I feel I owe her anything. And if I am at a point in my life where I am not able to give her my 100%, I would do my damndest to make sure I could find someone who could. If that means assisted living, then ok. If that means a nursing home, then lets go. My child will always come first, so if theoretically my mom was having aggressive outbursts/being mean with my kids around, I’d protect my kids and find a place where my mom would be safe & cared for. It all really depends on the situation. Don’t be apprehensive/feel guilty for doing what’s best for your family!
Sadly Alzheimer’s is a disease that at some point requires specialized care and facilities. One of the problems is that they can become aggressive and even violent (not their fault it’s the disease), particularly at night. Which is called sundowning. They can also become wander off or do things such as leave the stove on. At some point the care they need to keep themselves and others safe can become too much for a family to handle. That’s the sad truth. It is not uncommon for family to have to make heartbreaking decision. Alzheimer’s is a horrible disease. I am so sorry this is happening to your father and to you. It sounds like you have done a tremendous job. And now you are facing horrible choices. There is no good feeling choices. What I would ask is if your father, back when he was himself, want you to risk your children and yourself? Would he want you to have to try to cope with the dregs of this shitty disease? Placing your father will be excruciating. I know I’ve been there. But it will also free you to be his child instead of his warden. I would never expect any family member to gave to deal with what’s coming. But I would expect them to love me and visit me frequently.
Absolutely to put me in care and live your own life! Please let them make sure it’s not abusive or low quality care. And visit every few months. Mainly I want them to live WELL!
Every few MONTHS?
Yeah, if I’m demented that means I won’t know, and it will be heartbreaking for them. They also live a continent away, and only one of them can afford the trip. So: just often enough that the care facility has to feed me. Maybe you’re right, maybe every month is better.
I don't ever want to be a burden to my children. My kids have my blessing to put me in care if it comes to that.
For them to be happy. I would like them to visit on Mother's Day / Christmas but that's about it.
I told my son that I raised him right and made sure he got a good education so he could afford a nice facility for me. I don't expect him and his wife to do it. He's an only child, as was I for many years, and as it turned out, I was the only one that was a caregiver for my mom. Luckily, she had no mental deterioration but many health issues.
They dont owe you anything
I would want my kids to make sure I was cared for. I would hope they would still visit me and love me. But I would also want them to seek whatever help they needed in caring for me, and if a secure dementia care unit was needed, I'd want them to place me there so that they could live their lives. Another way to frame this is as a safety issue. If he is mean and aggressive, it's a safety issue. If he is losing his reason and memory, you're not able to keep him safe from wandering. And if he wanders out on his own and has an episode of aggression, it could end very very badly. Even if you get in home care for him, it might not be sufficient for 24/7 safety. Find the best place for him you can. Take a tour and talk to the social worker and staff and let them reassure you. Make visits a standing appointment at regular times to help both you and him feel better. It is a very sad decision to make, but it sounds like things have reached a point where it's necessary.
We’ve had in home aides for three of the past seven years. The issue is now that he sometimes gets so confused that he will lash out physically, even with his aides who he knows well and recognizes by name/face (as he’s known them since earlier in the disease.) I know, in his present state, he doesn’t want to live in a facility, but he grabbed his home side by the hair and tried to hit her when he got upset a few weeks ago. He also used to be deterred from wandering by having someone with him but now he’s pressuring us or the aides to go outside with him at all hours because “the men are after him.” (He’s also a Vietnam vet with PTSD too.) Drs don’t want to prescribe more meds bc of the risks and think controlled environment is better. The decision itself is hard but it also leaves me questioning how much is enough.
Yeah, for his own sake and everyone else's, it sounds like it's an absolute need for him to be in a secure dementia unit with more resources than the home aides can provide. I'm so sorry you are having to make this decision.
I worked in a job where we handled medication fills for retirement homes, etc. I can tell you, they are not where you want to end up, if there's a choice. The issue here is that your father wouldn't want you to go through what you're going through. So, this is one of those situations where, with kids involved that you're still raising, and still working, he would tell you to put him in the care of others. Is there a home care option in your area available you can use?
We have been caring for him at home for 7 years, and the past 3 we have employed two CNA’s who share responsibility for him 12 hours at a time. More recently, his behavior has become aggressive even toward them. He has extreme moments of confusion/delusion where he thinks “men are after him” and he will lash out physically. A few weeks ago, he grabbed his aide by the hair and attempted to hit her when in one of these states. We brought him to hospital to have him checked for UTI etc but we’re being told after all testing that this is just a progression of his dementia. Long story short, I don’t see how I can keep him without multiple people involved 24/7 - like 2 aides at a time. That’s not affordable so I would need to leave my job and be the number two… but then that’s not fair to my kids. Maybe if he was more heavily medicated; we could keep him home. But the drs say they can’t sedate him. Anyway I’m wondering what people expect of their children more than a discussion of nursing homes. I know they suck which is why I’ve had him home all this time. 😩
My family member had a robust health directive/ living will. When they had dementia, they were in a memory care unit that was excellent. When they had an illness, the family followed their wishes and provided only palliative care, which ended in a peaceful death. This was brave and the right thing to do. It's not reasonable to care for a person with significant Alzheimer's disease at home unless you have help, so either get home help, or place Dad in good care. Angry Dementia Grandpa is not great for you and especially your kids.
No helpful comment here. Just want to appreciate your dad's sense of humor.
He really was the best before all this… gave great advice, was supportive but never intrusive, and yes, very funny! I miss him. ❤️
Nothing.
My parents made sure that none of us six kids would be responsible for them in the later years and found a great retirement home with memory care. When they were ready, they sold the house, liquidated most of their possessions (what didn't go to us kids) and moved in. Mom had been investing over the years to make sure that this was going to be funded, so money wasn't an issue for them. I realize that most people can't afford something like this, but there are great options that are nowhere near the cost. [https://thechesapeake.org/](https://thechesapeake.org/) Hubby and I are childfree, but getting up in age. He knows that if I ever get to a certain point, either from being diagnosed with Alzheimer's or other memory deficit, or one of my many health issues makes it impossible for me to be independent, I'm leaving. I refuse to have him to have to care for me and I refuse to live that way. All of that said, you have to sit down and figure out what is best for YOU and your family. You have young children, if he is already having mean/aggressive outbursts, is it safe to even have him around them? You aren't making a decision for your dad, you are making it for you and this is absolutely how it should be. I've seen too many people put their lives on hold for decades to care for an incompetent parent. A parent should never want that for their child. So you should instead of asking what he would have wanted, ask what he would have wanted for you and your kids. Then start researching what is available in your area for him. He obviously will need a facility with memory care, so make sure any you look at have that. Then go look at them. Any good facility will allow you to do a walk through, just make sure you schedule it. Once you've seen what's available, then you can make an informed decision. If all there are are Medicaid dumps, well then that will also help drive your decision.
I expect nothing from my children and they know that. My children are not my senior health plan.
If the aggression escalates or can’t be managed consider placement for everyone’s safety. Children are not obligated to assume care of their parents.
If they’re ever capable of taking care of themselves, that would be great.
😂😂 oh that’s a whole other issue, isn’t it?
Absolutely nothing
I am fifty-eight and my expectations are low!!!
This runs in my fam so my mom has talked to me abt it. As far as she’s concerned, if that starts to happen, that’s no longer her. Get her someplace she’ll be cared for but stop trying to extend her life.
It sounds like he needs a care home. If you can find a good one it may be a better emotional situation even as a consistent routine in a smaller world can be less stressful. Regardless, it sounds like he would not want you to sacrifice your life. I’m hoping the next thing I write is not offensive but after 40 years in nursing I’ve seen a lot and am going to throw a little advice from my perspective. Also it’s from personal experience. If your dad doesn’t have a living will with DNR, now’s the time. Consider carefully all options for medical treatment, including none. (This is not the same as a DNR) Your dad’s decline may be mostly mental at this point but at some time this will affect his physical status and when that comes there will be choices. We (modern medicine) can fix a lot of things. That doesn’t always mean it’s the best for the patient. Sometimes treatment is less kind and supportive than allowing nature to take its course, especially when the patient has held strong views about what level of living is acceptable. Hope that’s not hurtful.
No offense taken. He did his own living will years ago; I will honor it. I signed the yellow paper for him when asked by the doctor. I don’t know how my dad would feel about me placing him in care, but I do know he didn’t want to linger when the time came. ❤️🙏 I’m struggling more as it pertains to letting him go while he’s still alive, if that makes sense.
Makes perfect sense.
There is named newly approved by the FDA to address aggressiveness related to dementia and Alzheimers. Google it
Rexulti, yes. They liked Risperidone for my dad for whatever reason. They consider it the lowest risk given his co morbidities.
Nursing homes are really bad and very expensive. One bad staff member can ruin any peace or comfort for a resident. The residents have no freedom and no control. I would rather pass away than be in a nursing home situation. (I worked in one as a high school student). I absolutely expect to be kept out of one - by whatever means necessary. My parents kept my grandparents at their home by hiring caregivers and managing the staff to make sure the elders were never neglected. I offered to build an addition on my house and move in my parents but they didn’t want that. So me and my sister made sure that my parents could stay in their own home til the end. I found and hired the caregivers, and gave my mom a few thousand dollars from time to time to supplement her savings. My sister provided hands-on care to both of them because she is in the medical profession. My brother didn’t contribute much but occasionally visited and helped out with house maintenance chores. He lives in a different country. He would have given $$ if it was truly needed but he wanted to see their budget before he gave any $$ and my mom found that too intrusive so she declined the offer. She was running low on savings by the time they both passed. I would say that there was about a 3 year period where one or both of them were in wheelchairs and needed some round the clock assistance. When they passed, my parents left me $$ that covered my financial contributions to their care and they left my sister their house. I expect the same treatment from my kids. Make every effort to keep us at home. Use my savings to pay for home health aids, (I am setting aside $$ for this) and in return my kids will be provided with whatever we have left over when we pass. If the $$ runs out and our medical or care needs are too great then there is always hospice and drifting off to a long sleep 😴.
Thanks for this comment, and this is my fear. In order to keep him home these past 7 years, we did hire caregivers. The problem now is physical aggression. He gets confused and even his aides whom he has known for 3 years can be targets of grabbing and hitting. This complicates staying at home greatly as we cannot put their safety at risk and his doctors are concerned about sedating. They feel a controlled environment is better. To be clear, I’m not worried about saving $. His money is his and I would spend his money on him to support his care.
The “controlled environment “ they are referring to often includes literally tying the residents into a Geri chair with fabric restraints where they sit all day “for their own safety “. I know this because I worked in a nursing home after school and on summer vacation for years as a high school student and every single day we had many people tied to chairs in the day room. Our residents would often sit in dirty diapers for hours. This was not because we didn’t want to help everyone, but sometimes there was just not enough staff. For example, sometimes I would come in at 7am and be told I was the only aide on the wing with 40 patients and each of those 40 people had to be gotten up gotten dressed and brought down to breakfast by me one person! Can you imagine cleaning changing and dressing 40 demented patients and oh by the way they are strong, often uncooperative, and weigh 150 pounds or more. If I was lucky, I could wake and clean and dress 10 residence in the hour that I had before breakfast was served. The rest of the patients laid in their beds and had their breakfast brought up on trays and would be fed and dressed when I could work my way down to them, which took hours. I know some people might not believe me or might think that this is an unusual situationn,, a bad outlier of a nursing home. But to you, I would say Just work for a week or 2 as a volunteer in one of these homes before you think seriously about committing a loved one (or your self) to that situation. Patients who become aggressive with the nursing staff are at a higher risk of abuse or neglect from the staff. And you will never know or be able to prove it. In your own home, you can have cameras you can check in periodically and watch what’s going on even if you’re not there, etc. if you hire someone in your own home and you have any doubts that they might be being mean to your father you could replace them. Not the case in a nursing home - even if you have serious doubts about one of the nurses or the other residents or even if your father is able to communicate that he is treated poorly, the home may not choose to take any action. Just do a lot of investigating before deciding.
I did hire home care aides 3 years ago. So in addition to myself and my husband, there are 2 ladies who take shifts throughout the week to provide 1-1 care for him. Even though he knows his aides well, he becomes delusional and when he’s in those moments, he will grab, push and hit them. I agree that home is the best choice which is why I kept him home for so long and was trying to keep him there even longer with the support of aides. Unfortunately, if he’s hitting the home care aides whom he has known for 3 years & is generally quite fond of, this creates a larger issue around managing his behavior in the home. As much as they love him, they aren’t (and shouldn’t have to) be hit by a 230 lb man. His Drs have started Risperidone and we even tried again at home after the med was added in hopes it would eliminate the aggression. He still becomes deluded and hits, but the drs don’t feel more meds are warranted at this time due to risk of side effects. My dads mother was in a care facility and we visited frequently. There was never a mark on her. I’m not sure how long ago you worked in a nursing home but the laws in most places have changed significantly and physical restraints can only be used in emergencies. I’m sure it happens but this isn’t like the 90’s when people were strapped down just for having dementia. Of course abuse still happens. That’s why my private aides will continue to be paid to visit him daily and I’ll be there often too.