My mother is refusing to go into assisted living. How do we get her involved?

19 answers | Last updated: Mar 11, 2016
Maryanne asked...

My mom, who has dementia, is refusing to go into assisted living against the doctor's and our decision. We have tried to get her involved. How do we get her there when she refuses assisted living?


Expert Answers

Beth Spencer is a social worker in Ann Arbor, Michigan, with more than 25 years of experience with families who have a member with dementia. She is coauthor of Understanding Difficult Behaviors and Moving a Relative with Memory Loss: A Family Caregiver's Guide. She directs Silver Club, early-stage and adult day programs serving individuals with Alzheimer's and related illnesses.

Moving a relative with memory loss can be a very delicate operation as you are finding out. When someone has flat out refused, as your mother has, it becomes even more difficult. Reasoning does not usually work and ordering someone to move doesn't work either. Several things to consider:

  • Is there anyone whom your mother might listen to - a sibling, minister, or friend who could help her understand the need for this?
  • Can you do it gradually, perhaps taking her several hours at a time and staying with her? You would gradually expand the time and use some of it to fix up her room, go to activities, etc.
  • Can you bargain with her? This might involve asking her to try it for 6 weeks and then you will discuss it. If you do this, though, you have to be prepared to take her back home if she remembers it at the end of 6 weeks and doesn't want to stay.

Does she have to move now? Perhaps you need to wait a little longer if you can.

Look at it from your mom's point of view. No one wants to be forced to move out of their home. She may not see the need, probably does not understand that she is at risk. Is there a way to help her remain at home but make her safer? Is there anything that might entice her to move, anyway to make it more attractive to her?

 

A colleague and I have written a manual for families on just this topic with much more detail, Moving a Relative with Memory Loss: A Family Caregiver’s Guide.


Community Answers

Ruthielaine answered...

I'm sorry but this answer isn't helpful to me. I am in the same situation and we have tried everything - she won't even leave the house to go for a visit. Now I'm battling cancer myself and the stress of taking care of her is I believe killing me. This weekend she tried to hit me with her can when I brought up the subject again. I need a real solution. I'm fighting for my life here.


A fellow caregiver answered...

Ebw610 answered...

I agree with ruthielaine response....I could have written it myself. Everything ruthielaine is saying I am going through. I have stage 4 breast cancer, my mother refuses to go assistant living.......and is making the last days of my life miserable. It is not an easy task.....The last resort is she being forced to leave her home by some organization that feels she will be a danger to herself, which I am trying to avoid...


Keg runner answered...

I'm moving my mom into assissted living today - we have no choice but to blindside her - my brother is taking her to lunch while I move her furniture and belongings to the facility. She doesn't know it yet, but she will not be going home after lunch - the facility said if we just get her to the parking lot, they will take it from there - it's terribly sad and I hate doing it this way, but it is the only way it can be accomplished - the doctors are insisting she needs around the clock supervision - it is for her own safety. Know that we have been talking to her about this for some time - and now she gets violent if I mention it - she was in the hospital last week and her behavior was so far out that social workers got involved and now we really have to get her into the assissted living - I'm dreading this day, but she has left us with no choice but to blindside her - however; if she will allow it I plan on spending her first night with her and if she is too angry with me - we have arranged for her regular caregiver to stay the night (we had a daytime sitter for her). My only hope is that once she gets there and sees all the opportunites to socialize and play games she will calm down.


A fellow caregiver answered...

My husband and I are facing the same situation. My mom was released from her latest hospitalization to hospice with a projected 10 days to live. We brought her to our home and nursed her back physically to the point she will not be recertified for hospice. Her dementia, however, is worsening and she has fallen or been caught in mid fall daily for the last week. My husband has strained his back lifting her back up and we have told her he cannot help her up anymore. We are sending her to respite care at our chosen assisted living facility for several weeks; she thinks it's for walking therapy. She will have daily physical therapy to improve her balance and leg strength, hopefully. We are telling her that she cannot come home unless she can walk without falling, which we don't think she will be able to do. We are also hopeful she gets used to the place, makes some friends and decides to stay of her own free will.


Sjdel answered...

It was the hardest day of my life. I picked Mom up from the adult mental hospital, took her to lunch, then had to hide as four attendants physically lifted her up and carried her upright into the assisted living center. She has mad enough to call me every bad word in the book and tried to hit me with her cane. She would not share a kind word and stated she never wanted to see me again. I was no longer her daughter. I had to remind myself this was her disease talking and not my Mom. The next day she met me with are you here to take me home as she did everyday for 3 weeks. But she was glad to see me and we had a good lunch at the center. I now have her back home and it was nice not to have the constant responsibility for the 3 weeks. She was safe and had three good meals a day. Other ladies were there her age that she could talk to and enjoy passing the day. Now it is just me and the dog. I love her with all my heart but she can not remember where her tooth brush is or how to fix food or drink. She is sad that I have to help bathe her like a child but happy I can. I set out her clothes like she used to for me when I was little. I am disabled so things go slow but we are making it for now. I also had to move her 94 miles north to be near my brother. It is just the two of us children in the family and I needed help after caring for her alone the last 6 years.


Junearline answered...

We have 90 year old parents living in the same home for the last 60+ years. No central heat or air, steps to get into the home and and also inside to the TV room that was added years ago. Dad wants to move to independent or assited living but mom won't go. We are letting them muddle through and helping best we can but I'm afraid it will soon get to the point where one of them can no longer walk or take a fall that breaks a hip or leg. We hate to see them this way but they are of surprisingly sound mind for their age. It's still their decision.


A fellow caregiver answered...

Stop trying to make your family members do something they clearly don't want to do. If someone wants to be left alone to die in peace surrounded by things that comfort them, then let them. I've told my family that if they ever send me to a nursing home, I will make every attempt to break out and if I can't I'll starve myself to death just to escape and then haunt them for the rest of their lives. Leave the seniors alone. Realize you are trying to force a solution - not for their good, but for your OWN peace of mind - not theirs. Let go and let them live out the remainder of their lives the way they feel most comfortable.


Tammmy answered...

I think every situation is individual! We were not all meant to be care givers just as not everyone is meant to be a parent! If you are getting to a point that it is too much for you then the right thing to do is to have them go to Assisted Living if that is what they need to be safe! I would NEVER EVER make threats or say I would starve myself! SELFISH! We do not have children for the purpose of giving them the job to take care of us. We decided to have them not them deciding to have us! If they can and are willing to care...GREAT! If not...then get an apartment in Assisted Living and make the most of meeting new people and having new experiences! I can not believe how selfish people are to expect that their children give up their entire lives to nurse care them for years and years! If your parents can not make the decision or are too stubborn than it is sad but you have to do what you have to do! Stress kills and you have to protect yourself! Do what you can and visit them and love them....but it is not written that you have to change their diapers or lift them to love them! I will NEVER do this to my son! EVER! I love him too much!!!!!!


Szq answered...

I don't understand people who are so self centered and think that life is all about themselves At 90 you have lived a full life. Do you want to be a burden to whatever family you have?? My husband works from 9 - 9 He is an only child and his mother expects him to spend his day off taking care of her needs. She has been to the hospital many times due to falling and in a rehab afterward. The Dr said she needs to be in assisted living or nursing care. She also has Alzheimer's or Dementia. What can we do? I cannot believe this issue is not being addressed


A fellow caregiver answered...

Tonight we brought our neighbor to assisted living. We are her POA and have had the help of her estranged daughter, but despite all the promises and reassurances from the staff at the facility we failed to even get her inside. This is the 3rd facility we have tried. She was furious and immediately walked out and sat in the car. We tried for three hours, but at that point the staff said they didn't want her because she would just end up walking out again. I'm so frustrated and lost on what to do....it's midnight now and she is back home with most of her personal belongings sitting at the assisted living facility. She does not take her medicine (forgets, takes wrong dosage, doesn't want to take it), she has never cooked for her self (always eats out), but no longer has a car to do so. We have had someone come by the house, which worked for a while but now she doesn't open the door. Her home is filled with mice poop, her toilet is constantly running. Depending on the day, she'll walk across the street to our house 5-6 times a day or call angry and mad with various demented things (someone stole her tv, she lost her keys, etc) We care deeply, but we are not professional care givers. We've turned to professionals and feel completely let down. It is a constant worry, a constant battle, and fearful of her ever changing personality. What do we do next?! She refuses home care and she refuses assistant living, but left alone she becomes agitated and angry.


A fellow caregiver answered...

I opted to let her decide her fate. My Mom is 97, strong-willed, falls daily, hearing deficits, but able to live alone in a 3 bedroom house. She is unwilling to add a walker, or an in-home aid to assist her with daily chores. I am the only son and my Dad has departed years ago - I am at the end of my rope and gave it all up and said 'it is your life' - You have chosen to ignore my help, so you are on your own... Sad, but I have no regrets.


A fellow caregiver answered...

in some cases a "it's their life" approach makes sense. You have to remove yourself from the situation until (I assume) something happens where care is not optional? But in the case where a parent refuses help and lives in an apartment or townhouse or two family home leaves a stove on? or a cigarette burning? it's a matter of public safety no? Are there Adult service organizations that will intervene? I am worried because my step mother (who has no children and has alienated her family after decades of nastiness now has dementia and severe alcoholism. She is killing my dad! he seems too anxious to deal with idea of putting her in assisted living. It's easier to just get through the day. She is violent, angry, mean...If my father choses NOT to make the tough decisions and actions, that's his choice. I fully expect that he will die first. She can't drive or shop or cook or tend to finances or keep the home? I also worry that my sisters and I will have to do the "dirty work' my dad refuses to deal with now as she has no relatives who will step up? She has always been a horrible woman...hated us kids? I have told my dad (who responds 'let's hope she goes first') I will through him a wonderful wake and funeral, see him safely in the ground...and then fly several hundred miles to my home leaving her to her own devices. I assume she will jump in car w no license and drive 200 miles looking for a liquor store and eventually cops will pull her over? and some government adult protection will force her hands that we couldn't...and my dad refused to?


Figaro14 answered...

My sister and I spent over a year taking my mom around to (first) independent living and then AL facilities. She rejected all of them and insisted she was fine. She could no longer drive, cook for herself and she also refused the option of in-home care. It was extremely rough, but we finally picked an AL place ourselves that the best in the area, set it up without her knowledge and then just took her there. For one month we hired senior helpers to help her with the adjustment and listed to multiple screaming phone calls about how she was going to walk home, jump in the river, or just run away. And she adjusted. You would not allow a 3 year old to play in traffic because that's what they wanted. The same is true for someone suffering from dementia who can no longer make a logical choice for what is best for themselves. AL provides the care and companionship and socialization that no one can get in their home. Yes, its easier to leave them in their house, but I'm convinced its not better. BTW, it will take about 1 year for a total adjustment.


A fellow caregiver answered...

Let me be frank here. Unless you have been through the problem described in the original post you cannot possibly imagine what it is like to deal with a stubborn or unwilling parent. It is extremely irritating to hear people trot out platitudes and generic advice that you could get out of Reader's Digest or basic web searching although I understand people are trying to be helpful. It is particularly irritating when a doctor tells you these things. Their advice is generally worthless and they try to pawn you off onto social workers who are overworked to begin with. Doctors just want to get you out of the office as soon as possible. The medical system does not want to deal with these issues. So if you don't know about this from an experiential point of view then please don't start talking about what you don't know about - it's only insulting when you give basic advice that someone has probably heard like 50 times by the time you start talking. If you want to really help then do practical things like LISTEN or maybe buy your friend a much needed dinner or cup of coffee.

I'm fighting with my own Mother right now who refuses to go to assisted living when she desperately needs it. She is not with dementia - at least to as significant degree though she makes horrible decisions and continues to smoke and drink which led to a fall that in turn led to a 9 month stay in a nursing home. This has happened three times before (except her stays in a Nursing Home were much shorter previously). Despite medical advice she refuses to consider Assisted living and accuses me of attempting to rob her of her freedom. Her health worsens and she expects me to be there on a 24/7 basis to deal with her issues. There is some money for home health care but no where near what she needs to be safe. I did apply for assistance and that is forthcoming but my mother is impossible to deal with and unfortunately is very mean to the people who could help her the most. I hope I don't do to my children what my mother is doing to me. It is incredible how unrealistic she is being - not to mention how irresponsible by continuing to drink and smoke.


Sarahvil answered...

I found this Q & A helpful, from Marsha Kay Seff:

Q: My 95-year-old mother-in-law refuses to move to a safe and protective environment of assisted living. How do we get her placed when she is so stubborn? She also refuses help in the home. I need help as soon as possible. We have taken her to several places, but she still says no. A: Unless you have her declared incompetent (difficult and expensive), you can't force her to move. It sounds as if you could use some professional help. For free counseling agencies, check with your local area's Agency on Aging. Some mediation agencies help families for no cost. The truth is, sometimes you have to use some tough love: I love you, Mom, but I can no longer visit you when I'm so worried about you being unsafe alone in your home. And sometimes you need to go a step farther: Mom, I'm going to have to call Adult Protective Services or the district attorney, because you're unsafe in your house and need protection. Then, you could try fudging: Mom, if anything happens to you, I'm afraid I might be charged with neglect. The way I figure it, we all do what we have to do to keep our parents safe.

I hope you found this helpful. :-)


Galee answered...

We have guardianship of my 87 year old Mother in Law who is in the early/mid stages of alzheimers. She also has vision issues and although she can walk, her mobility is limited. We have been touring assisted living facilities and found the perfect one today. Again, she absolutely refuses to move. She's lived in her house for 5o years, nothing is wrong with her..'I'm sure everyone has heard the excuses. Now I will tell you the hard truth. The reason we have guardianship is because during one of what I fondly call her dementia moments, she signed a full, irrevokeable power of attorney over to a neighbor. Of course, she doesn't remember doing it and will tell you point blank she didn't do it. With that document he proceeded to move her assets around, obviously preparing to start using her money as his own. When I found out about what she had done, my husband got an attorney and was advised to seek guardianship. It's not that expensive and didn't take long to obtain. In our state, it does require a court hearing with a jury making the decision. It requires interviews with a psychologist and adult protective service social workers, as well as her doctor. The cost was around $1000, including our attorney, the court appointed attorney for her, filing fees, paying the psychologist who interviewed her for the court. So, now we have guardianship...now what? She still lives alone, is still very stubborn about staying off the steps (I nailed the door to the basement shut after another near miss with a fall), leaves the gas on, calls at 3am in a panic because someone is in the house (audible hallucinations). I live 45 minutes from her and can't be there in a flash. She's not eating properly, not taking her medications and refuses home care. I try to be there as often as I can, 2 or 3 days a week, but I am not in good health myself and it's very difficult for me to provide all the care she needs. She's in that house all alone most days and nights, depression is a problem that is making her dementia worse. Point blank, it's time for the help a good independent/assisted living facility can provide. Yes, we an force her to go but my husband doesn't want to do that and I don't blame him, it's his Mom. I am so stressed out over this..I provide her care but I really can't control this situation. I am also raising my grandson and he is my first responsibility. So, my question is this..yes, we can force her...so how do we do that? I can't tie her up and drag her there..so even with the right to do this, how do you do it?


Third daughter answered...

We, too, are facing these same problems, only with both of my parents.. My mother has dementia and my father has alzheimers.. They are seemingly doing okay on some days but for the most part, they are not. Last week they got lost in a near by town and had to be escorted home by police. Two weeks before that, my mother had the flu and was sitting in her own diareah and vomit when my daughter in law stopped in to check on them. These are just two recent situations.. The list goes on and on and on over the last 4 years.

We have hired my daughter in law to go there 2 times a week to check on them, visit with them, help them in any way she can (she's an LPN who works in an assisted living home).. She is wonderful with them, but she has a job and a life to live.. We can't expect her to be their daily. We are now hiring someone from one of the agency's for the elderly for the other 5 days, so they will have someone checking on them daily, but that's only for a couple of hours a day. What about the rest of the day? I live 4 hours away, one of my sisters lives 3 hours away, one lives 12 hours away and one lives 20 minutes away. A year ago, one of my sisters and I started visiting assisted living homes in both of our areas, found the one near me to be a beautiful facility which was also the most affordable. They were kind enough to move our parents up the list and offered them an independent apartment that was newly available (which they would treat gently as an assisted living apartment), we talked to our other sisters about this, everyone was on board, then we took our parents to visit and my dad just threw an absolutely hissy fit.. Instead of standing united and explaining to our parents why this had to happen, our two older sisters decided they would make it possible for them to stay in their home. By this I mean, they painted the bathroom pink and had the carpets/furniture professionally cleaned and new carpet laid in the bathroom.

The apartment was offered to the next person on the list and since then, our parents have just had one thing after another happening. My dad keeps turning on the stove to warm the house and has even burned paper inside of it like a fireplace. I've found burnt bills on top of the stove where he turned on burners while things were stacked on it.. We have now unplugged the stove, but he has had microwave popcorn catch on fire and I suspect may have heated up soup in the can once or twice, since the inside of the microwave is now black.. Their plumbing keeps backing up because they are flushing something down the toilet that shouldn't be flushed (we don't know what it is, only that this is a reaccuring problem). Plumbers have been called in repeatedly to snake the drains..Their fridge is packed to the gills with new food, old food, food that is supposed to be frozen but in the fridge instead.. They aren't bathing. Some may say, well, just get them in the tub.. Those would be the people who have never had to try to get their parents into a tub!!!!

I spent the night with them recently to see what their schedule is like. There house reeks because they had a cat peeing on everything. One of my sisters had to take her and have her put to sleep after months of trying to stop the problem.. But the house now reeks, from her, from the constant sewage backups, from them sitting in their waste, then sitting on the furniture.. In the morning, I just watched to see how they handled breakfast.. They had crunch and munch caramel popcorn on a plate with toast (which my dad routinely burns)..My dad fixes coffee every morning (using the same coffee grounds over and over again), and he had poured my mom's coffee into a sugar bowl while he had coffee in this little tea cup..Despite the carpets being cleaned, the furniture cleaned, nothing is getting rid of that smell because it's a reacurring problem. . It doesn't help that they keep the furnace set at 84 degrees. They also have fleas from spring to fall despite our doing everything to try and get rid of them. Their poor dog is allergic to them, my sister got him a prescription for flea meds, but they still persists. We can't take our dogs there when we visit, which means they have to stay home, so we can't stay too long (since we live 4 hours away). Usually I end up going by myself so my husband can stay home with the pets.

My dad stopped paying bills correctly a year ago. He was trying, but was usually paying one payment two or three times while not paying others at all.. It was also discovered they hadn't been filing income tax returns or taking out their mandatory payments from their IRA's. They had let their house and car insurance lasp. The insurance company told my sister that they tried repeatedly to contact our parents before cancelling their policy, but could not get a reply.

We have taken over helping them with that, setting them up with automatic payments, automatic withdrawels from their funds, etc.. Got the taxes caught up, but none of that is easy.. They still think they're on top of all of that and argue about anything that we try to do for them.

They used to be two of the most responsible, clean, put together people one would ever meet in life. This life they are now living is not even remotely similar to who they once were.

My family is at odds now, two of us wanting to place them somewhere safe, the other two insisting they should be able to stay at home.. We're scared of them getting so lost one day we won't find them, or worse, hurting someone else with their car. They have also gotten lost in Florida and Georgia, to which we had to go rescue them.... We're scared to death they'll just get in the car one day and head back to Florida, as they continually tell us they just got home from Florida.. But for every concern we have, our other two sisters agree these are huge concerns, but still, they think they should be left in their home..

My dad is wearing my mom's clothes half the time, my mom wears my dads clothes, including his underwear.. She wears jeans inside out and backwards.. She's on arecept, which is causing bouts of diareah.. I have had to help her change her jeans many times because there is dried diareah on them. Being so far away, and still working, this is absolutely horrible to just worry each and every day as to what is going on there right now. My husband and I talked about moving nearer to them as did my other sister and her husband, but honestly, we don't want to pull up roots to move back to that area.. We have jobs and homes of our own.. We both agree if we could move them to a facility near one of us, we will make daily trips to stop in and say hi, see how they're doing, take them on little adventures, but it would be so much better if they were living in a facility where there were eyes available at all times to make sure they are okay, not to mention getting three good meals a day, help with showering, dressing, housekeeping, etc..

People who make generic remarks stating we should leave the elderly alone and stop trying to move them to home for our peace of mind have obviously never lived this nightmare.. As someone else stated, you wouldn't let your toddler do things that they could get hurt from, why would we allow our parents to continue to do things that will hurt them?

My parents were hard working people who only added to society, never taking from it.. They are part of the greatest generation and it is absolutely heart breaking to see this happening to them. They look like homeless people most of the time. Thank God for angels in disguise who know them in the small town they live in, because they have been helped in more ways than I can count, but we know it's time.. We just have to move them somewhere safe before they really hurt themselves or someone else..

It is the hardest thing any of us have ever been through, and it's also completely shattered our family. My sisters and I will never have the same relationshp as before. There is now so much anger between us, it's like two of us against the other two.. This is a horrible disease and I just don't understand why there isn't more research to stop it, and why so many seniors are ending up with this condition? I pray it doesnt' happen to me or my husband, but if it does, I hope we never put our children through what my parents are putting us through.. I never want to be a burden to them, but in saying that, my parents don't want to be a burden to us, either.. They just want to live in the house they've lived in for 61 years and be independent.. They don't have a clue about all these things that have happened to them over the last 4 years because they can't remember any of it.... If they did, I believe they would understand why they need daily care... But to them, they are functioning fine..

Generic answers like take your parent to visit the home, or just keep talking to them about it until they accept it, get in home health care (which is too expensive for the average person), all the "easy" answers you read on line, aren't cutting it.. Those aren't answers that work..

The cost of assisted living homes are out of most people's league.. Who can afford $6000-$7000 a month for very long, and medicare and insurance won't touch any of it.. This is a real crisis and it needs to be addressed in realistic ways, not with these very generic "ideas" of how to help your parents..

I don't know what the answers are, but I sure hope something starts happening soon because our generation of care givers are having to handle these kind of problems blind folded. It's heartbreaking...