Everytime my brother or I visit mom in assisted living, she asks to come home.

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Mom is 85, has lived in her home for almost 55 years, and has always been very independent. Last year she was hospitalized with a pulmonary embolism and also treated for a detached retina. Now, she is generally in good physical health, but suffers from dementia -- long term memory is great but short term is getting progressively worse and occasionally suffers panic attacks.

I'm her single son and have been her primary caregiver for almost two years -- managing her finances, making sure she has and takes her medications, doing yard work, grocery shopping, bringing meals, taking her to doctor appointments, etc. (all the stuff caregivers are familiar with). I’m so burnt out emotionally, mentally, and physically that I don’t know how much longer I can keep this up. My older (divorced) brother helps out some, but I feel like it is all on me.

We brought up the idea of moving her to assisted living late last year, but she wanted NO PART OF IT, so we dropped it. She also does not want any outside caregivers coming into her house to assist her. Nevertheless, I knew the day would eventually come when she would need help, so I did a lot of planning over the past year in preparation for this event including evaluating different assisted living facilities, putting her name on a waiting list, getting her finances and estate planning in order (including Living Will, DPOA), etc, so we would be ready when the time came.

This past summer after a panic attack SHE brought up moving into assisted living and wanted us to make the move before winter arrived. She said she would not fight us on this issue and if she protested, we should ignore her and continue with the move. This was a HUGE day for all of us!!!

Over the past few weeks she would ask when she was moving into her new apartment and I would show her on a calendar. On moving day, she was ready and willing to go. She has been in her new apartment for less than a week and every time we visit, her first question is always “when am I going home?” She gets so very angry with us and so worked up that we have to get assistance to calm her down. She cannot take care of herself at home and we can no longer provide the care she needs (even though she does not think she needs any care).

My brother has taken a more active role in her care now that she is in assisted living, but I still feel emotionally, mentally, and physically spent. I’m not sure if or when mom will accept her new living arrangements or where I can turn to for support/help for her or me.

Any assistance is greatly appreciated -- thanks in advance!!!

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We helped our Mom move into ALF three weeks ago. While she was part of the decision making process initially - now that she is there and getting care , she wants to come home. She hates it and is raging angry with me. She has spent the last week looking for a lawyer and plans on taking me to court . I asked her what her plan is once she come back home ? She tells me she can take care of her self. I know how this will end up if that happens. Somehow My brother and I will be manipulated into going back "into the crazy circus" routine. This week has exhausted me and I am at a loss of what to do. Any suggestions ?
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SanityPlease, I'm so sorry for the loss of your mom. And so very sorry for the awful time you both went through in the time before she died. It's so hard to convince the person sometimes that they need to be somewhere that they can get good care--that it's just too much to try to do it at home.

My mother wasn't in the same condition as yours, but even she wasn't convinced that she needed more care. She would wear the same clothes for days, not bathe, stuff her Meals on Wheels in the freezer instead of eating them, Eventually MoW called me and said they couldn't deliver any more because there was no more room in the freezer. But in my mother's mind everything was fine and when I moved her, at first she accused me of tricking her so I could abandon her.

When you're trying to take care of her and trying to do the right thing and she's fighting you, it's very hard. You say you feel guilty for not getting her into a residence sooner, but I'm guessing you couldn't have done it any sooner.

I'm an only child, so there weren't any siblings to leave me high and dry, but I'd be really pissed off at my family for making me go through this all alone. I'm hoping you are taking care of yourself now. It's going to take you a while to recover from this ordeal. I agree that your mom is in a better place and she's not suffering anymore... but you are still suffering the aftereffects of years of stress. I hope you can find some counseling... just someone to listen and help you heal from all you've been through.
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My mom died of COPD this past Feb. While I miss my mom so much I do believe she is in a better place as this battle with COPD was heartbreaking to see. She was battling the breathing issues that go with this horrible disease for the past 10 years. A few years ago she got afib (an irregular fast heart beat) so this also slowed her down without the ability to care for herself. Then the home O2 came and the portable 02 as well. After a while even with the 02 just walking a few feet she was out of breath. For 4 years i spent 3 days a week or more with her and my job duties increased over the years. The last 2 years I was the shopper, cooker, housekeeper, gardener, companion, etc without out any help from family. I took care of all the bills as well. I was so angry at family for not helping out, still am I guess. I would get angry at my mom too not understanding why she would not take better care of herself as she had the money to do so. The last year my mom started hallucinating seeing rodents in her fireplace. Saying when she walked in her bedroom she was in my sister's room from 1976 and she died in 1977 of an auto accident (she was kinda aware this was clearly wrong re the room). She drank vodka every day so I was not clear if she had a drink or not and the vodka was affecting her mental status--? I didn't know really what was wrong but did pretty much blame it on the drinking and normal aging. Then the screaming started in the middle of the night, bloody murder type of scream, saying help me, help me over and over again. She did not know why or what she was scared of. When her copd was bad and i took her to the er she thought the medical staff were poisoning her and stealing her money. She did a 911 call in the hospital and said she had a bomb! This is when they transferred her to the psych ward. so after a week in the ward is when I realized she was without the vodka she was still hallucinating, seeing elephants and thinking she was at work, a job she had 30 years prior. We thought it was the effect of withdrawal but it never went away it only got worse as when those with dementia are in a strange place their symptoms worsen. I knew at this point I could no longer take care of her and started looking for an assisted living or? I wish I had lined one up 6 months ago as there are waiting lists and it does take time to find a good fit. Mom ended up in a nursing home due to her need for 24 hour care and the plan was to get her out of there as soon as possible until I lined something up. She was there for one month and worsened with her COPD and mental status/dementia. She was too sick for an assisted living and failed interviews from a few places I lined up when they went to go visit her in the ns. home. During my search I also had her house set up with a wheel chair ramp and rails, cleaned up, painted so a caregiver could stand to work there. But then she really kinda suddenly died. A week before she died I spent 4 hours in the ns home with her while she ate, did rehab etc. I never thought she would be dead in a week. I do have guilt that I should have taken her out sooner as her spirit and soul took a hit while in this ns. home (sorry to say but none of these home are great and some are down right awful). However I could not take care of her 24/7 and while I was lining up stuff she was gone. I, of course talked to my mom about going to an assisted living for the past 2 years, even visited a great one. She refused to go. I really think she wanted to live in her home as long as possible and she did do that. She was away from home 45 days and died so I say that she did it her way. This thought makes me feel good that she would say "I did it my way", she and Frank Sanatra.
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Burntoutson, your situation is like mine. I did my mother's yard work, medication, groceries...etc. DPOA, rev and irrev trust....
My mother too eventually accepted to move.. I have 3 brothers and I feel it is all me. I have one brother that went through this alzheimer's mother-in-law that offers a little insight. Once in AL: Yeah, there is a lot of yelling and screaming... A lot of arguments you can't win, even though all your answers are right. Most of the time it just makes it worse. In a lull, I try to mention something pleasant to redirect them, but, my mom is a little too smart. But, sometimes there is a bubble of pleasantry and even a hug on leaving... so hang tough. But, there are times when you have to walk away,
There are alz support grps.. guilt? Yeah there's lots of that, especially if you sell their stuff, car, and house. (if you don't, it drowns your finances) Also, you can't let them take over your life. My mother calls 7,8, 9 times a night just to rant, and yell. Sometimes you have to ignore the phone calls, trust me they won't remember doing anything the night before. Just remember, she is in a safe place and being fed. The mental aspect is secondary. My mother is now in Memory Center assisted living after an elopement incident (locked out in the middle of the night in a daze) (it becomes a legal issue 24/7 supv mandatory). But, at this level, they take care of everything, its secure, so lots of coded doors. Pretty life changing.
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EveOnMyOwn, my mom exhibits symptoms of Lewy Body dementia and her hallucinations started with seeing small children and animals around her apartment. She also saw "visions" of deceased family members. Now, I think she sees random people or things like cars or boats in her small room in the ALF. She also claims that she's traveled to certain places or events, but of course that's not true. I cannot imagine how she feels because she actually thinks these things are true.
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Geez..I wish we could edit... or maybe, I should just read more carefully before I hit "post." (headslap)
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NYC2015, funny you should mention hallucinations...I was just getting ready to post on that very topic. My I ask what type of hallucinations she's having?

I my mother's case, she says that there are millions of tiny bugs--she calls them "critters"--crawling on the top of her breasts. She says they're no bigger than the head of a pin and she can see them all moving as one mass all over her skin. Somehow or other, this is connected to some kind of melon she saw a few months ago. To hear her tell it, a man cut open a melon and it was full of millions of teeny-tiny critters all milling and swarming around and somehow these critters are now all over her breasts.

I can't make hide nor hair of it. I've looked at her skin--so have lots of other people--and there's nothing crawling around. She did have a fungal infection under her breasts ("athlete's boob"?) but now that is cleared up. Today she told one of the aides about the critters and the aide passed the info on to the nurse practitioner. I told the aide that it was hallucination, so we'll see what come of it.

A few months ago when she was still in California, I called her and she told me her mother and father were sitting on the sofa in her apartment and she was visiting with them. Both have been dead for decades. I didn't contradict her or give her a hard time, but I did call a neighbor and ask her to go over and check on her.

Can you share some of your mom's hallucination experiences?
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Burntoutson, I moved my mom from NYC to an assisted living facility in VA a little over a year ago. She still hasn't and probably will never accept her current living situation. She blames all of her confusion and dementia-related issues to living in her current place. I've come to accept that. I am also an only child and did what I thought was best for her (and me). Driving back and forth to NYC was taking a severe toll on me.

Now if she calls me because she's hallucinating, I know that at least she's safe and I can visit/check on her frequently. When she was still living in her co-op apartment in NYC, she would leave her apartment in the middle of the night because she was afraid of the hallucinations she was seeing! I am so thankful that her neighbors were very good people and nothing tragic happened to her.
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AmyGrace said: "But I know now there was nothing my sister and I could have done to make her happy, unless we had the ability to make her 30 years old again!"

I'm so sorry for the loss of your mom. In my case, even making her 30 again would not make her happy. She has been sad and depressed her whole (and my whole) life. I believe she was sexually abused as a very young girl and of course, back then, there was no help or recourse. She came from a big-- 10 children-- immigrant family (eastern Europe). She always felt insecure and inferior to others, and that's still true. If she were a little kid in school today, there would be all kinds of help and programs and special attention. But sometimes she reminds me of a little kitten left out in the rain, meowing for comfort but finding none. (Maybe that's why once I left home, I started taking in strays...)

Your comments have helped me enormously. Thank you so much.

I think I'll give myself permission not to go see her today.
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Eve, now that my mother has been gone 3 months, I've had time to think about the past 20 years. Dementia and aging is a terrible thing especially when the person has started out intellectually and socially challenged, which so many women of that generation were raised to be. (I say intellectually, not because Mom was dumb, but because she never did one thing to improve herself or her mind in her whole life) She only cared about her appearance to others, keeping house, and what her family was doing. That was all she knew, and it was her identity. Take away her "looks" as she aged, her "nest", and no one to care for, and she had no identity and a total lack of interest in anything else. So she complained because she couldn't adjust to a new life. I wish I had not been so angry sometimes, so frustrated with her self sabotage. I'm not sure that even if I was totally understanding of how she felt, I could have not felt stress over the things she did and said! But I know now there was nothing my sister and I could have done to make her happy, unless we had the ability to make her 30 years old again!
I guess all us children can take from this experience is that when we age, even if we have dementia, we should try to adjust, accept and make an effort to create a life and happiness when we have to move to AL!
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