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Any suggestions/advice? Or should I just accept this is the way it is and that it will just run it course to the end? My 85 YO mom who was place in a wonderful nursing home 15 months ago (she has mid stage dementia, chronic depression, obsessive/compulsive dissease, COPD, diabetes, chronic anemia and is incapable of most ADLs/IADLs) but can walk a few steps with a walker but only has good use of one arm). She refuses to socialize at all at the home. The home has many activities each day. She won't even get out of bed to sit in the recliner in her room, much less try to do any walking down the hallway.


The nurses, aids, social worker, the geriatric psychiatrist on staff, her geriatrician have all tried everything for 15 months now. My mom, literally lies in bed 24/7, blinds closed, lights in the room off, every meal is taken in her bed (she refuses to go to the dining hall), she often refuses showers when offered, and the TV just blares at top volume 24/7 (she is 80% deaf and refused hearing aids for last decade). She has a private room, so this TV on all the time is allowed.


Her care team does not force things, not that they could force anything (not criticizing them), I know they have tried. She lashes out at me, so I have had to stop calling/visiting. It is impossible anyways as the TV is so loud it is impossible to be in her room much less talk or hear her when I did call. Yes, she is on 2 different Rx meds for chronic depression (depression has been an issue all her life, but it is so much worse now with a "overlay of moderate dementia".) She never did therapy, was in denial for decades about her mental health problems.


I do not feel much guilt at this point, more just empathy (sad) for where this has all ended up for her. I am an only child, no siblings to share or fight over what to do. And my father passed away when I was a kid. My mom has been widowed since she was 35, never remarried. Would be great if she did socialize or do anything to improve her situation, but that after 15 months it obviously is not going to happen. I guess I just have to accept this as it is and things will just run their course until the end.


I am sure others have had to deal with something similar. Any advice or suggestions? Sadly, I am just not able to visit or call her now as I cannot take it, cannot stand to see or experience this utter craziness. I did care for her in my own home for years before this nursing home placement and even in my house it was similar, her "living out of her bed" and refusal to do much of anything.

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Accept it as it is.

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Reply to Countrymouse
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It sounds as if she is doing exactly what she wants. Nothing... (except letting the TV blare). If she doesn't want to get out of bed, walk, socialize, nobody can make her...not you and no, not even the health professionals who plan her care. (She may be able to get some passive physical therapy in bed, but again, if she resists, it is her right to do so.) Hopefully she is getting good skin care to prevent bedsores.The medications may be helping her mood, but they seemingly are doing little else.

Sorry, I have NO helpful advice.
But there is nothing unusual about this. My grandmother, existed this way for months, maybe years (I was a youngster so don't recall how long.) She had good nursing care. There was no TV and she did precisely nothing. Stayed in bed. Ate only cereal with cream. Lived in her own world. She couldn't converse much (probably had Alzheimers, but it was not known then.). Eventually she died, peacefully, in her sleep. Expectations were different then. People accepted this behavior from the very elderly and were thankful if elders were not in pain.
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Reply to Dosmo13
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Sohenc: Imho, apparently your mother's depression medications are NOT working. Some other medication should be tried since her chronic depression and the lack of interest in much of anything is a large factor in her well being.
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Reply to Llamalover47
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Im so sorry I really do fill the pain. My mom is 92 in board n care. Has the workers at the facility tried to involve other resident females to go visit her in her room. Meaning some one resident with higher cognitive function. They can try at a time that would be a comfortable time for your mom maybe the two can eat lunch together but while watching TV or a special movie. I know my mom likes the old 50 60 shows. Instead of directly talking to uour mom they can sit side by side so she doesn't feel confronted and in time after consistent visits she may open up and from ther maybe she'll go out of her room but with baby steps. It's kind like the reading program alot of humane society do for kids. They sit outside the enclosures and sit not directly at the animal but to the side and read. It's give confidence to the child ,no judgment, and the dog cat feels the attention that does have a positive impact.. maybe the dog is shy, so he'll get used to people and become less shy allowing the dog to open up,which leads to further positives.
Please don't get me wrong I'm not comparing . We all humane animals have emotions and if you look outside the box for solutions there's more ways to help a situation. I pray this helps,but keep trying even if uour not directly hands on. I wouldn't be able to sit with the guilt of stopping trying. Please reach out to me if you want. I know what your going thru YOUR NOT ALONÈ.
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Reply to bsimonson
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PeggySue2020 Jan 25, 2022
Higher-functioning residents willing to volunteer is such a great idea. They become friends, friends go out, and usually you meet more friends that way.

The OP herself should schedule visits around dining and the activity calendar. Tell her that you were so looking forward to seeing the dining room or going to the party that you're going to go look at that yourself if she stays in her room and then do that. The next visit's conversations were about how fun you thought it was.
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So sorry your mother has chosen this lifestyle. Since it is very ingrained - seems like years - you have very little chance of this changing. Unless she is forced to eat in the dining hall or forced to watch television is a common room, I do not see her changing her way of life.
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Reply to Taarna
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First of all, if she does not want to socialize, I doubt you can force her - it just won't work. Just let her be. As to the t.v., I would immediately remove the t.v. from her room - such loud volume is horrible and surely annoys others. Get her a Samsung Smart t.v. and use the word captions that appear on the screen when t.v. is watched. It is wonderful if one is deaf. And if she is abusive and nasty to you, for heavens sake - stay clear of her. You do not deserve that treatment. And remember this - what people sow is what they reap. She is what she is and she is not going to change - but ge t worse.
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Reply to Riley2166
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I am so sad fore you. This is SO hard on You as an only child. It’s hard on anyone else experiencing this. I feel that you did the best she could do and now you need to take care of yourself so your health will remain intact. I wish you the best of everything. I’m wondering if maybe it’s time for hospice to step in. Good luck to you and I’m praying for you it’s not easy.💜
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Reply to Katefalc
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In life, not everything has a happy solution.
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Reply to TChamp
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My husband has vascular dementia/Alzheimer’s. They are both sad brain diseases that rob them of their memories as well as ability to make sound decisions and unable to problem solve. They may want to do things but the brain controls all. My husband will cry because he wants to do something but can’t and gets so frustrated. Please speak to the neurologist and find out where they are at in the disease as it may answer many questions. Then read all you can on these two horrible diseases and pray for patience and that you never suffer from those diseases. I have seen an active, social, larger than life husband, father, grandfather, uncle turn into a person who wants to but can’t do things. Give them much love and understanding in this hell they are in. It is all we can do as they are not responsible for this deterioration of their brain controlling them.
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Reply to LMarrero
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If your mom has never been a happy go lucky kind of person who chooses to rise above it all and make the most of her day.....she definitely is not going to do it after being placed in a nursing home at the age of 85.

I do believe that music soothes the soul. If you can muster up a visit, tell her you would like to play some music while you're there. Crank up some classical or jazz or country...whatever she would appreciate. We'll call this music therapy!
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Reply to Jamesj
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First, my sympathy for your situation. My mom is 100 years old and for the last 8 years it has been my same role of trying to make my mom comfortable, safe, clean and “happy”.

my only suggestion is to get a Bluetooth speaker for her TV set so that the speaker can be placed near her head so she can better hear. If it is an older TV set, there are inexpensive converters that can go into the audio output and transmit the signal to a separate Bluetooth speaker.
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Reply to GAinPA
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I totally feel for you as I’m in a similar situation although my mother is still at home with carers she won’t do anything other than sit in front of the tv all day doesn’t want to socialise go to little clubs or visit anyone she has dementia sits with the tv blaring and I feel for her neighbours for my own sanity as she is unbearable and tells lies I have stopped visiting other than to get her shopping as I was getting stressed out and not being able to do my job properly think of yourself now get on with your life I really hope there is a pill out when I get to that age as I never want to be a burden to anyone and it’s the family who suffer like yourself I am on my own but had to cut ties as I was visiting every day but only do the shopping on a Saturday now and it’s so much better for my health take care
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Reply to Taylorb1
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My mother is in a memory unit and has some of the same issues. She’s quit eating, except protein drinks, stays in bed, sometimes with the TV on and sometimes chooses to have it off and then she just lays in bed doing nothing. She doesn’t want to socialize. We still have a good relationship and I call daily to talk with her. I live in another state and visit for a few days each month. It’s very hard to watch someone you care about go into this kind of decline. It sounds like you’ve done all you can. My brother told me once, when I was telling him how difficult it was to watch our mother live this way, that what we perceive as a miserable existence, may not be seen the same way by our loved one. She’s framing everything from a totally different perspective, especially with dementia coming into play. It still hurts my heart, though. There may not be a solution if so many things have been tried in your mother’s case. If she enjoys seeing you, maybe you could visit some but not as often as before. You have to do what brings you peace and what you believe is best for your mother. This is a difficult stage of our relationships with our parents. You’re a good daughter. ❤️
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Reply to Lov2teach
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My mom is 85 and loves her bed. She also responds to visits and skin care (my term for showers and lotions). However, I cannot be with her all the time to ensure she gets to meals, etc. She skips meals because she likes to eat in her apartment/room. I think I found out why she likes eating in….she eats with her fingers. Operating the fork and knife is difficult for her and with the Blink Camera (which I call a speaker), I noticed that she eats with her fingers or puts her oatmeal on her raisin toast and then eats it. Eye opener! So, since she can refuse help from the staff when they offer and I pay extra for that service!, so I hired a personal care aide (turns out there were other residents who had aids and I was able to get 2 of them). So now I have mom get her breakfast and lunch in her apartment and at 2 p.m. an aide comes in and showers and washes her hair 3 times a week putting on lotions and walking her for strength training so she doesn’t get bed sores (my words to her). And she is escorted to dinner in the dining hall (I have the staff cut up her food before she gets it and she is eating more. The other aide is responsible for her chair exercises of picking up her legs and moving her arms for flexibility and strength and lotions on her skin (without a shower) and also walks her to the dining hall for dinner. Mom doesn't respond to going to activities but when the aides take her on the walk and there is an activity, they just happen to be there to check it out. What has definitely changed for my mom is the personal interactions with the aides. She is an introvert and having them there from 2-6 daily has stimulated her to actually interact. I did give each person a history of my mom so they know where she lived, how many children, her career and her former interests. This has helped them to talk to her and bond with her. The amazing part is that in a month, mom has actually gotten up to go to breakfast and lunch on her own. Her doctor told me that her sleeping all day does not produce good quality sleep and because she is up now, her sleep at night is so much better. She sometimes doesn’t get up at all or only once. I have blink cameras that I look at in the morning so see if/when she gets up. Mom goes to bed about 6 p.m. and gets a pill about 7:30 p.m. and another one at 5 a.m. full disclosure: I was there for the introduction of each of the aides and I told mom this was needed because of her skin care and her doctor’s orders for movement to prevent breakdown of her skin which when it starts to break down, it will not stop and it will be very painful. I asked mom to please do this for me because I want the best for her. I also told her she doesn’t have to do anything, the ladies will do the showering, scrubbing and lotions and dressing. I read that sometimes people with dementia doesn’t remember how to do the steps of self care. This has lifted a huge weight off me since now I know that mom is getting her meals, her exercise, her socialization, and she has more energy. I cared for mom in her home and she lived in her bed or her recliner. The Assisted Living has finally become a better place for her but it was a learning curve to get her the type of care she responds to. Her being able to say no to the AL staff has now been taken away because these aides do not have those rules and mom also promised me to let them care for her. Our interactions are better now, I drop in on Alexa show and I tell her about her facebook friends, what is going on in the weather, going over old memories of her life and old tv shows. It is a lonely life with no collaboration but I am grateful for this break through. The aides are experienced and patient and respectful. Mom is getting treated like a princess and she loves it….more than her bed! (At least while they are there with her!)
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Reply to Tandemfun4us
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bundleofjoy Jan 25, 2022
amazing :).
amazing the results you managed to get.
and amazing all the love, care and attention you give your mother.

hug!! :) :)
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While my father isn't in a facility yet, he too is mid stage. But, his undying stubbornness refuses to leave his house of 60+ years. His wife (my Mom) of 60+ years lives with my sister.

I know the feeling of sadness of when I drop him home and watching him walk into the house knowing he's all alone. But, like you I lost every attempt to move him to AL facility. Do I stop being sad, no, but learned to worry about what I CAN control and let go what I CAN NOT.
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Reply to bozowing
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You have a good attitude, please never feel guilty.

My daughter worked in rehab/nursing facilities for 20 years. She explained to me that when entering a Nursing facility you are considered a resident not a patient. The State considers this your home and as such you have rights. One right is to not be forced to do something you don't want to and this includes those suffering from Dementia. Yes, like Willy said, there is a routine and most do well with it. But! you cannot force someone to get out of bed, get dressed and out to breakfast. You can't force them to shower or eat. Its their home and they have to be able to have the same freedoms they would have in their own home. You can coax you can't force. Its considered abuse.

If in 15 months your Mom has not shown an interest in socializing, then don't force it. Especially if she didn't socialize before.
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Reply to JoAnn29
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If that was meant to be a dig it fell flat, I'm very happy to live in a country founded on the principles of peace, order and good government.
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Reply to cwillie
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There is nothing you or anyone else can do. It's like the old saying,
'you can lead a horse to water but you can't make him drink'.
Your mother is waiting to die. That's why she remains in bed all day with the blinds closed. When she was with you in your home, she expected to be waited upon hand and foot from her bed. Many elders do this because they believe that if their family basically lives like slaves that they stay in control of the situation and will not get placed in a nursing home.
Your mother like so many other elders when they're placed think the nursing home is the end of the line and they are just waiting to die. They're not wrong. Your mother does not want to take part in activities or even get out of bed because she refuses to allow herself to become acclimated to life in the nursing home.
Is it still possible for your mother to be taken out? Like for a drive? Does the nursing home have an outdoor area where you can visit with her? Sometimes it helps an elder acclimate to their new living arrangements if they know that they will get taken out once a week. Or even that they can visit with loved ones outside and away from the other residents and staff.
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Reply to BurntCaregiver
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Hi Sohenc,
You're right, with her dementia, deafness, and depression it's unlikely that she's going to all of a sudden change her behaviors and engage with her surroundings. As you noted, she already had those behaviors living with you. The dementia alone makes it so a person loses their ability to do more than one or two step tasks, and apathy increases. It sounds like she's incapable of more, and this is what works for her with where she is right now.
It's hard seeing. What would your mom have wanted for herself if she knew she'd be in this state? Is it time for hospice?
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Reply to ElizabethY
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You have just described my 86-yr old MIL. We had to transition her into AL (for short-term memory impairment and now mild dementia) and then eventually after a minor fall, she went through rehab and just refused to participate. We and the facility tried every incentive known to get her to do PT. Eventually she had to go into LTC where she COULD get up and out of bed but just refused. She wouldn't go eat in the dining room, she wouldn't participate in any of the activities or events. She's in an excellent facility with a private room on Medicaid, yet wouldn't get out of bed. This went on for about 2 years and then, we think because of her memory problem, starting being willing to get out (at this point she is now a 2-person assist) and eats with the others, goes to chapel, events, activities, has been to a field trip to a llama farm and even went out on the facility pontoon fishing. It feels utterly miraculous to us. Before she entered the NH she was on Zoloft and still gets meds for depression but she's super healthy otherwise. I often feel mournful that she allowed herself to lose her mobility, but oh well...we tried everything.

Your mom is a lot sicker, but there may still be hope. She may eventually forget her passive aggressive protest of not getting out of bed and having people fret and orbit around her. I would let that topic drop. You're not responsible for her happiness and you can't control anyone but yourself. I would work with admin and staff to continue to offer help and opportunities to get out of bed. Do they have visiting musicians and pets? This was helpful and uplifting to my MIL. May you gain hope and peace in your heart!
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Reply to Geaton777
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Sohenc Jan 24, 2022
Thx for all of these responses. Sadly my mom's NH has had a huge omicron outbreak so no, none are allowed to leave the facility except to go out outside on the grounds but it is too cold for that now. No visiting musicians nor pets at this time. Because of COVID, they have not allowed any of the residents to venture out (to go to lunch, shopping, just a drive, etc. in almost 2 years) as there are both state and fed rules with various limits the NH has to comply with. And because omicron now, just to visit one has to have a negative PCR test 72 hours before visiting in person. I assume this new rule will end once the positive rate drops down in our area and at her nursing home as fully 1/3 of the residents are positive and every day I get a call informing me of "another case." They had 5 cases 3 weeks ago and now they have 46 cases. The NH has a 98% vaccinated rate, 89% boosted but then these are fail elderly with various other conditions. COVID has made all of this so much harder. I feel bad for the staff as they too are getting infected. Our state rules require any residents who is COVID-positive to be isolated. Thankfully, my mom is in a private room or they would have had to move her; but many other residents in double rooms have to be moved/separated so the staff is run ragged trying to test, treat/care for those sick now and to move residents to new spaces within the NH as folks become positive. A total HOT MESS. I had to advise my 81 YO uncle who visits my mom (his only living sibling now) weekly to not go until this outbreak tamps down. Yes he is vaccinated, but at 81 with diabetes, very obese and with heart issues why risk it?

Some times I am just numb with all of this. Thx again for all the messages of support, advice.
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It seems to me that people in some American nursing homes have way more autonomy than is good for them. In my mom's facility everyone got up, got dressed and had meals in the dining room unless they were seriously ill or actively dying, all other activities were optional.
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Reply to cwillie
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Geaton777 Jan 23, 2022
cwillie, yes we Americans cherish our personal freedom. That's why we said tah-tah to King George in the first place. That's why we don't like intrusive government mandates into our own health decisions. Freedom isn't free, it comes with risk and sacrifice. And we are also free to make our own mistakes and live with the consequences as well.
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