If my mom doesn't want assisted living, what should I do?

7 answers | Last updated: Oct 26, 2016
A fellow caregiver asked...

I have an 89 year old mother who suffered at least one stroke in the last 5 years, causing her to move to assisted living, occasional nursing home rehab, permanent nursing home, back to assisted living. During that time, she made one half-hearted attempt at suicide, perhaps as an attention-getting device.

She has issues with depression and anxiety, for which she is getting medication but not real treatment. She does not like discussions of psychological issues.

She is currently in assisted living, but has been told that she must call for transfers to the bathroom -- and she refuses to follow that rule. Almost every time she self-transfers, she falls. They have not yet kicked her out, but probably will, soon. Even when she returns to nursing care, she will probably self-transfer. I honestly don't know if her claims that "no one comes" when she calls for help are true, or if she forgets, or doesn't understand, or is rebelling against the rule. OR, is hoping that one good fall is the only way she has to end what she considers a miserable existence, OR she thinks it's the only way to get attention.

Any suggestions for getting her to stop self-transferring, other than restraining her? She could've really made a go of assisted living, if not for this (and a lack of interest in occupational therapy).


Expert Answers

Maria Basso Lipani writes a popular website on geriatric care topics, where she puts her expertise as a Licensed Clinical Social Worker to good use answering care planning questions. Maria is a graduate of Columbia University School of Social Work and is licensed in California and New York.

I don't have any suggestions for getting her to stop self-transferring, but I do have a suggestion for determining the best setting for her: ask her where she wants to be. You might be surprised by her response and it could save you a lot of unnecessary back and forth. Plus if you can gather this information from your mom it would be the first step in getting her to work with you to stay there.

That said, in reading your question it's not difficult to see why your mother might regard her existence as miserable - I'd be miserable and I think anyone would be bouncing from one setting to another having to rely on others for the most basic and private of tasks like toileting. While we'll never know her true motive for trying to do things on her own a part of me thinks she may do it because she really doesn't want to need the assistance and may not have accepted that she truly does.

Also, you're probably right about the assisted living getting fed up sooner rather than later and asking her to leave; she presents a huge liability by not following the rule. However, if you want to try once more to make this work I'd suggest finding out which attendant she has the best relationship with at the assisted living and asking if she can be the one to respond to her calls. I can promise you that your mother is more likely to call for the help of someone she likes rather than someone she doesn't.

Community Answers

Emk answered...

Just a follow-up, as I came here today for more advice. My mother loves to feel/act victimized and as we, her children, and her assisted living facility (who is REALLY trying to make this work, for her) make changes in her situation (the latest being moving her to a room closer to the attendant's desk, in hopes of providing faster responses to her needs WHILE keeping an eye on her for falling), she is trying to make us feel like we're "picking" on her and ruining her life. (That was a long sentence, sorry.) And we're just trying to keep her safe. She's in an expensive and VERY nice assisted living home.

Ms. Lipani suggests we ask her where she wants to be -- we don't have to, she volunteers it constantly, and it's to live with one of us. That is not physically or emotionally possible, and we've tried to make that clear to her as we try to get her to make the most of the reality of her life.

Emk answered...

Me again - this is a further QUESTION, not an answer.

Soon after my last post, she self-transferred, fell, and broke an ankle, spending her 90th birthday stuck in bed in the nursing home.

Back to assisted living after about a month, and she claims to be more cautious, but is still self-transferring. Her attitude is better, but it's almost like she's DEFIANT about moving herself, despite falls that should prove to her that it's not a good idea.

Lately, she claims that staff at her place is telling her, when she calls for assistance, that they think she can move herself, so she should go ahead. Management and nursing says that this would certainly NOT be the case -- that staff KNOWS that she needs to be helped. How do we know who is telling the truth? I know it's highly possible that someone there doesn't feel like being bothered with her, and so tells her to handle it herself, but I cannot prove it. I also know that it's highly possible that she CLAIMS to call for help but does not.



A fellow caregiver answered...

Hello, I take full time care of my Grandmother right now. She has Alzheimers. In answer to the last question....you would be suprised how much these sweet old women start lying and believing their own lies. I will see my Grandmother lie to cover up something she forgot. Most times they lie because they don't know and they don't want to admit they don't know and other times they lie because they are fed up with people telling them they are wrong.
This being said, I cannot say 100% that your Mother is lying about her care, but I would say it's more likely that she's lying, then the home. The only way to get a 100% answer is to bug the place or something. You could use one of those bears with a camera in it. It's one of those really hard decisions and judgements. I feel like if you have researched this place and really find that it's legit and good, then you should trust them. Not trusting the caregivers only makes their job so much harder. You should hear the lies and stories my Grandmother tells people that makes it out like I never do anything for her and basically ignore her. I've been judged because of what my Grandmother says, so I feel for those workers. I hope this helps. God bless you with your Mother. I know it is difficult. LIH (Love in Him)

A fellow caregiver answered...

I wish I could put as much love into this answer as the woman above me, but I am exhausted. Here is what I found to be true.Most even the nicest facilities have state regulations as to how many cna ,nurses and on and on is required.I know that there is a long wait to get help most the time. Then there is the dignity thing which I understand, not heartless just exhausted. I agree 98 percent withthe answer above me. I have stood on the outside of door ways and offices and well snooped and observed what goes on in the dinning area is a great place to see the care. We brought my mother to our home from another state and I know she doesnt want to keep going like this BUT I am only 30 percent happy go lucky here the rest is mom what do you need to do now and I also get the lost bewildered look and the whispering baby talk , but let a friend call or my husband ask a question or another sister and WOW she changes. So that is something to watch out for and then yeah I think we are getting played, maybe because she needs more positive stimulation. I tell my husband its hard lifting and all the manual stuff, up all night on and on.Then be miss chipper i my family knows I use to be even under pressure ........uhhhh not any more. The major weight gain and hair falling out and ghheee I have aged 10 years in 3. ITS the most difficult position to take on. I thought it was funny in a sense MOST of the women complained of the food served but ate it any way( even the cooking has been taken away from them) I never heard hte men complain. So your mom might act like she hates it there but when you arent around I bet they dont have as much problemns with her as she says she has. Routine is a biggie for the elderly.The issues even in assisted living or respit is IF and WHEN they do come back home.......it is easier for them to use a bed pan at those places. Standing becomes more difficult because they loose the ability.The frustration of waiting to go to the pot....they use chucks and diapers because most places are so under staffed ......so thats another issue.They are worse when they come out......Yep my mother is as quick thinking and can catch on to any thing anyone says......BUT when it comes to her helping me with transfers , exercise and really important things to keep her quality of life up .......nadda. I never thought I would get so frustrated/angry,distant, what ever you want to call it until now. I figured it out......I dont want to let go......I want her to work as hard with her caregiving as I have, the interest on and on. She will say I dont understanad why I cant stand its been almost three years......yes she does! If I stand backand wait for her to take the first move......she wont do it , or she will move her good leg up and down twice and say I have done them I moved them just now. Maaybe not enough but I did.You will drive yourself, her and every one around you nuts with all this. I have been there for my mother for 3 years now day and night even in the hospital...When we got her to her new home with us......This sounds like maybe a lot to do but it really isnt. When the helper comes do YOUR things then.I should have right then and there had in home care at least 25 hours a week. I should have had twice a week outside stimulation with others her own age. Once a week outtings with mom . One outting a week with the whole familly. This might be just to have coffee or cake..PLUS I should have taken time out for these things 4 hours one day a week just him (hubby)and I. Three hours a twice a week for myself.I forgot to live...........She needs to and so do you......

Crook answered...

My mom is 99, falls twice a week in assisted living, will walk without her walker every time, never remembers to put on her light, and insists on taking her own shower and dressing herself. Hence, the falls. Now they are asking me to move her which will break her heart. I will be there some day and there are worse things then landing in a hospital with a broken bone at her age. Like asking her to uproot again, share a small room and bathroom with someone else, get rid of more of her belongings-as if she's not confused enough. I'd take her home but my house has many stairs with no facilities where they need to be. If you don't fit I to that definition of (elderly) you are screwed- it's off to the nursing home and a wheelchair all day by the birds. Good for my mom for fighting to the last. She didn't want to live this long, she has lost her hearing and part of her speech, her friends and immediate relatives are long gone- so her last control is - dammit, just let me walk and if I fall so be it!! I just hope I find a place that will let her keep that small dignity.

Chatty kathy answered...

My mom is 84 and has always been a controlling person. She started with dementia about two years ago and she also has macular degeneration with very poor eyesight 20/600. I kept her at home as long as I could but it was a constant fight with the sitters, my cousin who lives with her and me. She is defiant and will not do what she is asked to do. She still thinks she can cook and drive and maintain a house. She attempted to walk to the grocery store and could not find her way back. I know what the lady above means about this caregiving takes a toll on the caregivers health. I did nothing but work and take care of my mom for two years and she was constantly telling me I was sorry and no good for not letting her do what she wanted to do. Several days ago I had to take her to the eye doctor and when I attempted to take her back to the nursing home she sucker punched me in the face and refused to get out of the car. She tells me everyday that she is well and ready to go home. I do everything I know to do to not take her hope away but I have gotten to the place that I hate to go see her because she ends up throwing a fit and crying when I leave. The facility she is in is wonderful. There are things to do everyday, church, bingo, senior choir, etc. but she has no interest in anything. The other residents try to talk with her and be kind but she says they are crazy and she will not have anything to do with them. I am at my wits end because I know she needs full time care and I cannot afford to have this at her home. The people that take care of her are so kind and anything I ask them to do for her.....they do. I have no family to help so it's all on me and I am not willing to give up my whole life to my mom. I love her dearly but she is and has always been a control freak. Help!