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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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This is my first post, and all I can say is wow! I'm an only child, but I feel that I've met my siblings here. I'm nodding constantly as I read these posts and I feel my grip on reality returning.

I moved my 91-year old mother from California into Assisted Living here in Texas a couple of weeks ago. For the last year I've had caregivers come into her apartment, and that was okay at first, but eventually, she wasn't eating her Meals on Wheels, not showering or changing her clothes, not taking her meds on time... and after a couple of falls and trips to the ER, it became clear to me that she couldn't live on her own any more. We talked about her moving to Texas, where she hasn't lived since 1974, and she agreed, but, as everyone has said, now that she's here and realized the move was permanent, I'm the villain.

According to her, I conspired with my father (who has been dead for 30 years) to abandon her here so he could run off with another woman, namely, her sister (who's been dead for four years). I knew and know that this was a huge move for her and a huge change, and I told her yesterday on the phone that if she wanted to be mad at me, I would understand, but I did what was best for her and I was sticking to it. Then I hung up the phone and cried.

What AmyGrace said describes my mother perfectly (Amy, are you sure we weren't separated at birth??):
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"My mom is bored too. She has NEVER had any interests except family, no hobbies, no reading, won't do puzzle, is socially inept and even in IL, which had lots of trips and activities, she didn't join in. She is bored with her own company and she is boring, has nothing to talk about because she does nothing, not interested in anything. Now with dementia, its worse but we have tried everything to get her interested and involved, so has the AL. You can't change a person, all you can do is refuse to take the blame for their unhappiness when there is nothing more you can do. Yes, it makes us sad to see Mom unhappy, and Zoloft helped (a little) but the bottom line is, she HAS to be in AL for her own safety, with professionals to be there 24/7."
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I know I just need to stick it out and taper off my visits. I need to give her room to assert her independence and not take her comments personally. She has mild dementia and doesn't remember things. Reading y'all's comments has helped me tremendously today!
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My mom is 70 worh advanced dementia and has been very aggresive toward my father and i and others so last Friday after a horrible incident we had a crisis intake to a memory care facility. I feel she is so young and i k iw its inly been anweek but she is begging to come hime. Luckily she does not have a ohone abd the staff say shes fine when we are not there. I justbworry we put her in too soon. She cant walk well because of a deteriating hip that they will not perform surgery on. I just feel so guilty. Shes so young cimpared to the others.
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Thanks everybody for the suggestions I will try them all. I do encourage Dad to pudh the alert button when im there but 9 times out of 10 he ignores me so I push it everytime knowing Moms gonna get mad. That doesnt bother me. In fact I push it all the time no matter who is there. If mom says sky is purple dad would agree and its gonna kill or hurt him. When Im not there or my brother dad gives her a shower takes her to bathroom and only calls staff if hes so out of breath hes scared ti help mom. Ive talked to the staff and theyre trying to help get mom and dad to go to the activities even pushing her down there. She will have no part of it fusses loudly to go back to room and wants zero interaction with other residents. Shes always been boss and loves being in control of everything and everybody and at AL she is not so thats why shes fighting back so hard. I only hope her anxiety meds get regulated soon or I think she will talk dad into going home and they would die there cause hes in bad shape too and she will run caregivers off. Never seen more stubborn pair in my life!
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We had the same problem, first in IL and then in AL. She would always complain and want to "have my own apartment". We told her to wait six months and see if she still feels that way and we would then talk about it.
Once your mother starts to make friends and gets into a routine with them and the activities, she will be better. Change is hard and she needs time to adjust.
In our case, Mom complained to us constantly, but it was just a habit and trying to "guilt us". In fact, the staff told me she had a good time, had friends, etc. It was an act she put on for the family. When she saw us, we reminded her of the past and wanted it back. But, in fact, when we weren't there she was fine - just like leaving a toddler at daycare - they stop crying the minutes you leave.
There were times I took Mom to lunch and when we went inside, she saw a friend and promptly walked off and left me standing there. Or I tell her I was coming for lunch, only to get there and see she was already in the snack bar eating with friends. She would hustle me out the door if it got close to the Friday cocktail hour or monthly birthday party.
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My heart goes out to you. We had a nearly identical situation with my Mom. She asked us to put her into a care facility, and then within her first week there, she was begging us to take her back home. It was absolutely heartbreaking and affects me to this day. I saw that one person recommended not visiting her for awhile to give her a chance to settle in. I think that sounds reasonable, but then again, everyone is different. Have you tried speaking with a counselor at the facility about it? They're always good to go to for advice. They've seen it all and been through it, and they know how to help.

One thing we did with my Mom that helped was to take things FROM the home into her new room. To try to make it feel more familiar. Family photos. Maybe even a piece of furniture if they'll allow you. And my Mom's spouse visited her every day, took her out for walks, to eat, to the park.

I hope this helps you in some way, and I wish you, your Mom, and your brother much love.
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Tiredone11, the ideal solution would be for Dad to push the button when Mom needs help, wouldn't it? Can you think of ways that could be encouraged?

It is hard to blame your dad for running out when there is someone else to be with Mom!

I hope that you and your brother ALWAYS push the button when you are there and Mom needs help. Even if it is something simple that you could do, get her used to having the staff help her.

The staff is probably right that visiting less frequently would be good. Even if it doesn't help your parents (I think it will) it should help you!

Can both parents go out to activities? If they don't enjoy the same things, could Dad go the daily news discussion and Mom go to Bingo and they go together to the live music show? This is the kind of thing the staff may be able to encourage if your parents know you are not coming that day.

It sounds cruel to say visit less, but that really may be a kindness. Try it!

I do feel sorry for your dad. I wonder if someone on the staff could persuade him that they could get into trouble with their insurance by letting an untrained resident help another resident Sometimes an excuse like that empowers them to say no. "I would help you, dear, but I'll get in trouble because of insurance rules. I'll press the button."

Talk with the Medical Director or Social Worker about other suggestions.

And remember, Dad may buy the tickets but you don't have to take that guilt trip!
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What advice do you all have when both parents in AL one can come and go as he pleases but has health issues causing him to be very weak and out of breath and my mother has several bad health issues and needs AL but insists on dad helping her and not the staff. He will not push call button to help her because she insists he can do it. She blames him for not taking her home and guilts him over and over and then he guilts me his daughter for not visiting more. I've been going to see them everyday now this week starting new routine of going every other day because they are so negative and she's angry all the time. The staff advised me to cut visits down so they will be more dependent on them and not me. It's not working now dads trying to make me feel bad for not coming more!! He runs off every time me or my brother goes to visit. So tired frustrated over this nightmare please help?
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Reference "coming home", read this article; too bad I didn't have it as a resource when my mom was going thru this (mom died 3 years ago with vascular dementia). http://oca.org/parish-ministry/senior/personhood-and-an-aging-mind-and-body
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Tired, go on your trip with a clear conscience; you've done as much as you were humanly able to do at home. Your mother now needs a higher level of care than you can provide. Have a safe trip.
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tired1933, enjoy your trip out of the country!
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looked at AL for Mom. Money an issue. Found decent place, decent price. I am an RN so have a good feel for facilities. Took her for a visit and she said no. then she had another fall, changed her mind. Signed her in. First day ok. Now, she is angry and told me to rot in hell. She was an emotionally abusive parent. I am leaving for an out of the country trip. have been taking care of her for 7 years. I understand she is angry about the loss of control. Threatening me that she will call police on me. Very bad day. My brothers won't have anything to do with her.
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thanks you for the article. It was magnificent and helped me see things in a new light-a true blessing.
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https://oca.org/parish-ministry/senior/personhood-and-an-aging-mind-and-body
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https://oca.org/parish-ministry/senior/personhood-and-an-aging-mind-and-body
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This article helped me greatly; wish I had it before mom died three years ago. Please take time to read it. https://oca.org/parish-ministry/senior/personhood-and-an-aging-mind-and-body
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This forum has realy helped me so much. I thank all of you! I was in the ER for 5 hours last night with her. She had a weird pain she never had before. I think she fell but is too afraid to tell them. So she checked out OK but it was so sad to see how much she is declining...but when the Percocet kicked in she was soooo happy. Boy it was like the good old days. I forgot how delightful she can be! and so funny! but that won't last forever...she can't take that all the time. It really was a happy pill. She didn't even mind going back to the ALF, But she called me this morning complaining and scared and HUNGRY. So I told her to pull her cord to get them and she had no idea what I was talking about. So I called the front desk and they took acre of it. I am grateful for the ALF and I know I have to leave her there-but that "forever" concept still makes me feel uneasy. So I say the same thing as others "I'm working on it"
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I have the sane sad situation. My mom has been in a nursing home for over 4 yrs. She has dementia but still knows enough to be sad, cry, and ask what she is supposed to do. My mom is sweet, very, very sweet and it makes it SO hard to leave her when I visit and she doesn't want me to leave. especially when she crys. She isolates and eats all meals in her room (Im glad they allow it because she would never socialize and eat with others). There is nothing more my sister and I can do except accept that she will only get worse. It's so very hard and I wonder if sadness is the only feeling I will ever have when I think of my mom. Nothing helps except acceptance.
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I have to let you know that this does get better! My mother doesn't border on narcissistic....She DEFINES it! I can tell you that I've been called every name in the book, accusations that could fill a phone book.....so much BS. She's been in ALF for nearly six months....it's better now. She tells me that she doesn't do anything but stay in her room and all the services are awful but the staff tell me she socializes, paints, exercises...is basically the belle of the ball. So, give it some time and her own human nature will have her interacting. Don't take her word either, check with the staff. Also, my mother calls and rips me up but doesn't remember doing it. She'll tell me we haven't spoken for months and it's been one day. She also demands things but unless she asks 4-5 times over two or so weeks....I just ignore the requests. She would have me running like a hamster in a wheel and then not even remember wanting that thing! It was beyond stressful! I completely ignore her requests to home or back to her town--just say "I'll work on that." She doesn't remember later on. Hang in there, you too will get through this!!
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Does the ALF have a social worker you can talk to? I am going through the same thing with my mom. I get a pit in my stomach because when I see her she verbally abuses me. She WANTS OUT. PERIOD. But she can't make it on her own. I sympathize with you. I fell burnt out too.I also think of her constantly....she is always on my mind. I feel like she is tethered to me in a weird way and I don't like it....I need to cut free and not feel guilty and so do you! Hope you can get some help. Don't let guilt rule you. You saved her life.
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debbie, I hear you! Maybe that is part of the aging and dementia - narcissism! Its all about them. My mom is bored too. She has NEVER had any interests except family, no hobbies, no reading, won't do puzzle, is socially inept and even in IL, which had lots of trips and activities, she didn't join in. She is bored with her own company and she is boring, has nothing to talk about because she does nothing, not interested in anything. Now with dementia, its worse but we have tried everything to get her interested and involved, so has the AL. You can't change a person, all you can do is refuse to take the blame for their unhappiness when there is nothing more you can do. Yes, it makes us sad to see Mom unhappy, and Zoloft helped (a little) but the bottom line is, she HAS to be in AL for her own safety, with professionals to be there 24/7. So we visit, bring her snacks, talk to her, etc, but that is all we can do. She has been unhappy for 40 years and we must remember that we cannot change her.
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