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Caregiving
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- Coping with Memory Loss
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- Creating a Daily Routine
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- Health and Wellbeing of the Caregiver
- Home Safety Adjustments
- Mental Exercises
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- Talking to Children about Alzheimer's
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- Telling Someone They Have Alzheimer's
- Transition to Assisted Living
- Transition to Nursing Home
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Q: How do we get mom to accept moving to assisted living? Mom was diagnosed with Dementia/Alzheimer's about 2 years ago.
I am so sorry that you have to deal with this.
I'd talk with her doctor about how she's fighting this move to AL. He or she has probably seen this before and may have some tips, or even may be able to help with a temorary medication that can calm your mom. She's likely afraid of change and since all of you who love her want this change, she's decided that you are against her. Unfortunately, this isn't uncommon.
If you have an Alzheimer's organization in your community, they may have a social worker who can come to the house and talk with her. Sometimes, someone outside of the family can help.
Between the doctor and an Alzheimer's social worker, maybe you can at least get her moved. Don't expect her to "like" it at first - but if you get her moved, she may settle down.
Good luck to you. This may be the hardest thing you've had to do.
Carol
Hi Deb,
I'm not a medical person, so I can only give you my personal view. She may at first refuse to bathe, etc. I doubt that she'd refuse to eat anything, though she may be difficult about it.
I'd talk with the pastor, a social worker and anyone else you can think of that is not family, and see if they can help. Many times an outsider will not seem as threatening as the family that is "putting them away." They can, I hope, get through to her, that she needs to be safe, and that she'll have lots of choices.
Make her threats known to the pastor and social worker and anyone else you work with. She likely won't do anything to harm herself, but you want to make sure everyone is aware of her threats, anyway.
My heart breaks for you. You are doing the right thing, even though it's so painful.
Blessings,
Carol
Also be prepared that if the AL doesn't work, she would have to go home. If she really gets violent or mad, she needs to go home. The other alternative is to give her some kind of antipsychotic drugs to calm her down but it may be too early.
Find a way for her to like the AL. Give her a tour, let the director talk to her, and make her see the daily activity...
I meant to say that most ALs don't have guest room. Some fancy ones may have.
In a way you cannot force her, so you may also want to wait a little bit, but you need to have home care full-time or 24/7.
Regards,
Nina
I'd like to thank everyone who has responded to my question for all the support and input you've shared. It's comforting to know that others have been caught in this same storm and either have or are working through it.
I spoke to mom's pastor today, whom she has always been very close to. He said that he had noticed that she hadn't been attending functions, and said that he had heard through the grapevine that mom was going through some changes. He's very kind, and has had experience helping others as well as his own family through this ordeal. He is going to call her next week to check on her, and tell her that he'd like to come over for a cup of coffee and a visit. Hopefully he'll be able to get her to open up to him so that he can talk to her about the upcoming move.
I'm hoping that as time goes by she'll be able to process what her pastor says to her, and that at some point she'll give up this fight and try to adapt. I'm going to put a call in to her doctor as well to get some advice from him. It's very likely he'll want to have me give her something to help keep her calmer at the time of the move.
Several of you have said that keeping her at home would be better. I'd move her in with me, but even then I'd have to have caregivers here with her during the day. It still wouldn't solve the problem of her being isolated from everyone except a caregiver all day. There aren't any adult day cares near by, and on many levels I think that would be harder for her than AL. At least at AL there's a sense of community, and she'll have her own apartment and her things around her when she needs or wants some alone time. I also know that as hard as I'd try to manage keeping her happy in the evenings, and getting up at night with her if necessary, it would have a big impact on my ability to carry on with my own life and responsibilites. My husband is very supportive and loves mom very much, but it would be a strain on him as well. I worry about his health, as he's had a heart attack during the past year, and also has a hard time sleeping these days.
We'll see how things go over the next few weeks. I'm thinking that right now the best thing to do is to not keep bringing it up and getting her all upset. When the time comes to start getting her things ready and such I'll try to handle things very calmly with her, and give her the chance to help decide what she really would like to have with her. By that time she'll either participate in getting ready or she won't. If she continues to rant and carry on, I'll bring her to my house and have her caregiver stay here with her while I pack her things. Once she's out of the house and staying at my house, I don't think it would be a good idea to let her go back to her house at all. Seeing things all packed up, or seeing movers there may be way too much for her to handle.
I'll let you know how things are going as the time gets closer. Thanks again for all your prayers and support.
Deb
To be honest, Mom will never accept the move to AL. What you need to do is distract her or come up with some excuses like this move is temporary and etc. Eventually she will forget about the move. Of course she has to get used to the new AL as well. You would need to be with her in the new place for a few weeks to help her to get adapted. The other issue is that she may need to move to memory unit or skilled-care nursing home one day if she gets sicker and lives a long time. A move for her would be difficult so you will need to reduce the times of moving. However, sometimes a move is necessary. You need to balance it out.
You can also ask a professional to talk to her about it. Sometimes the director/salesperson of the AL can be persuasive and is a good person to talk to Mom about it. You don't really want to be frank with Mom - you should not tell her she has Alzheimer's and so she has to move and etc. Come up with some nice story and move her to the new place. Distract her with nice acitivities or good food in the new AL.
We waited for a long while until my late FIL forgot about his own house and moved him. We moved him to a memory unit/AL when he was in late moderate/early severe stage.
Good luck,
NC
Thanks so much for your reply. We realize that the need for a memory care unit will be necessary at some point. The AL we have chosen has a wonderful memory care unit, so when the time does come she will move directly to that wing of the building. At this point Mom isn't so far along that telling her the move is temporary or making something isn't likely to fly with her. She still is relatively functional when it comes to her daily living skills like bathing, dressing, eating and socializing. If she can accept this move, she'd benefit a great deal from the general environment, the routine, and the activities if she gives it a chance. We know she's frightened by the change, and sees the move as something that will cause her to die. She really believes it's a nursing home like her sister was in. She doesn't understand that when her sister went to the nursing home she was already in the late stages of the disease. What do you think the actual chance of her going to the AL and refusing to bath, dress, take her meds, or participate in activites really is? You mentioned my staying with her at first. Is that something that is done often?
I appreciate your time and input. Thanks again.
Deb,
I was saying to see her everyday, not to "live" there. Most AL may not have a guess room. My late FIL's didn't have any. You just need to visit her often in the first few weeks.
The other thing that is funny is that, the demented person acts very differently in front of strangers or new caregivers/professionals. Say, my late FIL would not go along with my husband, but he would be nice to the caregivers who helped him in the mermory unit. He acted differently at home and in the memory unit. Partly because he thought he was working in the memory unit... If the caregiver or nurse is very nice to Mom in the AL, Mom may have to accept it politely. Rarely Mom would be very mad at them helping her unless she is in late stage. On the surface, Mom would want to keep some polite face in the new place. Not a guarantee, but it is a good try. Another example, if you bring Mom to a new doctor, she may not like what you have done, but she will be very polite to the new doctor.
Since it is so complicated, we waited until late stage when my late FIL went to the hospital a lot. One way to do it is to wait, but it is expensive for home care 24/7.
Also, we waited for the good memory unit for 9 months (on a waiting list.) If it is a good AL that requires a long waiting list, you should try it.
Maybe someone in the AL can persuade her that there are some benefits in the AL. Take her to see the AL for a tour first. They don't have to lie to her but they can tell her what is the advantage of the AL.
Good luck,
Nina
Hello, Deb. You *are* having a rough patch. Your mother is grieving. Perhaps like mine (diagnosed in 2009 and at about stage 5), she really wants to die. My mother, who lives with us, will often say "I don't know why I'm still here. I really don't want to be here any more" (her way of saying she wishes she would die).
We moved my mother into our home when it was clear she could no longer live alone. She could not be trusted to take care of herself - food, meds, etc - and my sister who lived in her area did not wish to take on the responsibility of her care. I work full time but, to some extent, can make my own hours. Of her four daughters, I was the one interested in taking care of her, so she moved here in 2009 permanently. (She had been living with us for about 11 months of 2008, as well.)
When we first started hiring caregivers, it was just to cover the days when I was off at work. We now have coverage from 9-5 every day of the week, and I just this morning asked for 9-8 coverage for M-Th. This still is cost-feasible, given the cost of AL quarters in our area. It also assures me some control over the care workers who come and go in the home. Having caregivers here means a total lack of privacy for us, and it also means we try to snuff the upsets we feel about things until we are private (by ourselves).
We are at the stage where my mother forgets the toileting routine, and though she wears depends, she still has issues arise that she could not handle on her own overnight. So I keep a baby monitor in her room and go down to her in the middle of the night, when I hear her get up from bed. (If you are a heavy sleeper, they do make mats for the bed or the floor near the bed, so you could hear when she gets up; I happen to be a light sleeper.)
We miss our privacy. I miss feeling like I have only my own household burdens, not my mother's too. I am not a young person, and I miss feeling like I can go out for dinner, have friends over, whatever, whenever I please.
But I also have the reward of knowing my mother's caregivers rather intimately, seeing how carefully they care for her, and knowing my mother feels safe here and about as happy as she could be. The tradeoffs are significant. But, speaking for myself, I know I will know, when she passes, that I did my very best, 99% of the time, to help her out of this world with dignity. That feeling is sort of priceless.
When we moved my mother here, her friends were still around and doing things. We live *hours* away from her home, so it was a total move for her. I was able to get her to a church she liked (though we can go no longer, due to her anxiety about incontinence), and we can go outside when the weather is nice. I have bought for her (and do with her) some games and puzzles offered by the Alzheimer's Store (online). The caregivers make her life as pleasant as possible. Within a year of her moving here, her friends all died. She was spared the constant attendance at funerals, and thus she has good living memories of them. The truth is, however, she has little memory of those days left. And she no longer remembers the one woman (who was never a close friend) who keeps sending her cards.
For us, bringing my mother into my home has, in the longest run, been a good thing to do. If your work and household life is such that you might consider this, perhaps offering your mother a choice might make her more amenable to thinking about AL. We might eventually go the direction of AL, if I can no longer keep up the overnight visits with my mother to help her toilet or make sure she is not wandering (she does not, thus far, seem to be a wanderer). But my hope is that this will be her last residence.
I know you were seeking answers as to how to get your mother moved. The short version of my suggestion is this: think seriously about taking her in as a stopgap; give her a choice.
And know that whatever she said to you is dementia and grief talking. She is not the mother who raised you. She is an elder striving as best she can for a dignified departure. If you can make yourself - I know it's hard - stop thinking of the woman before you as your mother, it will become easier to accept the occasional abuses cast your way.
What a loving daughter you are to seek out support here and suggestions. You are doing your best.
All good wishes to you,
CJ
Deb,
I also want to say that personal care/home care is still more personal. If Mom goes to the AL or memory unit or nursing home, the elelments are not up to you to manage and it will be other people's management style. The family won't be able to get it "customized". Both home care and AL are too expensive. Home care full-time has its benefits. Mom stays home and remembers the familiar stuff. You can control the caregivers in a way by telling them what to cook and what to do. You can stay home with her overnight and etc. There are day-care center for the elderly so you can bring her there for daily acitivities.
Also the doctor's recommendation doesn't mean you have to get an AL. A doctor is not a caregiver and has no idea about daily care. Home care knows more about it. My late FIL's specialist did say that we should get a "controlled environment". This could mean it is AL or home care. As long as you can help Mom and take care of her 24/7, home care has its great benefits.
Regards,
Nina
Nina and CJ, thanks for much for your support. This is such a tough topic. Deb, we are with you in spirit. Blessings to you and please let us know how things go.
Carol
Hello again, Deb. I have been thinking more about your upset with the way your mother has handled your attention to her wellbeing, and I thought if you hadn't learned the method of "validate, reassure, redirect" that is typically suggested when trying to deal with a frightened Alzheimer's person, then you might benefit from learning how to use this method of interaction with your mother. The Alzheimer's Federation of America team has made a nice description of this method in answer to another question found on the site here:
http://www.healthcentral.com/alzheimers/c/question/600922/157848
I don't know whether their answer will come up directly or whether you will need to scroll down to find it.
Best wishes,
CJ
Hi, Deb,
I think you have gotten some fantastic advice. I also dealt with a similar situation with my mother. She was furious about going into the nursing home, which was necessary because of both her Alzheimer's and her chronic obstructive pulmonary disease. She definitely threw some tantrums. I learned to be very calm and to not play into her tantrums. If she told me to get her out, I said I couldn't do that because her doctor had ordered it. I told her I would call the doctor, then go out of her eyesight and only pretend that I had called. I then would come up with what I justified as a "white lie" - that the doctor was with another patient, but would call me back. That seemed to calm her down. I knew she was in the right place so I didn't feel like I was doing something bad. (It also made me realize how far Mom had slid because she could always catch me in a lie. At this point, though, she had no idea).
I had to repeat this several times, but eventually she calmed down. Eventually, she forgot other places and at one point, started thinking she was staying at the hotel. So once you get past the hurdles of the transition, things should calm down.
However, one other note - you do not want to make it a habit of moving her often as her Alzheimer's progresses. In my experiences, moving -- even from room to room in one facility -- can cause someone with Alzheimer's to deteriorate both mentally and physically. Therefore, plan long-term about where you want her. She needs to maintain the stability of one location. Therefore, if you feel she ultimately needs to be closer to you, I'd encourage you to make that move now, even if it means her friends won't be able to see her.
Take care and keep us posted!
Dorian
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Thanks so much for your comment. You mentioned having a social worker talk to her. I think that may be a good idea. I have a friend that has know Mom for many years, and she suggested that I call her pastor. Mom has been very active in her church, the senior group, and the ladies guild for a long time, up until about 7 months ago. She is very close to the head pastor. I'm thinking that a call to him might also help.
It breaks my heart to see her so upset by this. I know in my heart that she probably didn't mean all the hateful things she said to me the other day. She actually told me that she never wanted to see me again, and that she hoped my brother and I would burn in hell for what we're doing to her. Her daytime caregiver told me that she cried and cried the rest of the day after I left. I haven't seen or talked to mom since that day.
She sees her doctor as the enemy as well. He has tried to talk to her about AL and she justs tells him that she doens't want to hear anything he has to say.
I realize how frightened she must be. I also know that she sees the AL as a nursing home, where we're going to put her to die. Her sister did have to go to a nursing home, and the last time mom saw her she was there, didn't know who mom was, and was at the point where she simply sat there and starred ahead. She never had someone to look after her at home (my cousin was her POA, and just didn't do anything to help her), and she fell down the steps and broke her arm and pelvis. Her bones healed, but she declined to the point where we saw her within a matter of a couple months. What's so sad is that before she fell, she probably was only slightly worse than mom is right now.
In your professional opinion do you think she really will make good on her threats to not bath, dress, eat, or talk to anyone? I understand that the first weeks/months could be difficult for her, but is likely that she'll simply resist to the point where she do that, or try to harm herself in some way? I scared me to death.