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FairyLampLady Asked September 2010

What do you say to a dementia patient who demands to be taken home 6 months after being moved into a residential facility?

My 87-year-old mother-in-law was diagnosed with dementia and moved into a residential facility 6 months ago. She has refused to sleep in her bed because it would mean that she plans to stay there. Whenever family members visit she becomes upset and demands to be taken home. She believes her husband is waiting at home for her although she divorced him several months ago.
We decided to sell her condo and use the proceeds to pay for her care. We initially decided not to tell her that we were selling the condo because we thought it would "kill her" if she knew it had been sold. However, we are frustrated by her refusal to accept her new living arrangements after 6 months. We are also finding that her abusive behavior means that no one in the family wants to visit her anymore.
Would telling her the truth about the condo make her to stop demanding to be taken home? Or would it just give her something else to be angry about?

crystal1224 Nov 2012
@momlover - I read your comment and I think this is an excellent idea to write things down because when you leave the room they will pick it up and read it (hopefully) I just wanted to say I thought your suggestion is great! It gave me something to think about. Thank you!

abby33 Nov 2012
I have struggled with this same issue for the past 6 weeks (that's how long my mother has been in assisted living). She has vascular dementia/alzheimers but still has some lucid moments. I hated the fact that she thought if she just got better, she could go home. She woke up everyday thinking she would be released to go home. Yesterday, she was very alert, so I spent 2 hours talking to her about what was wrong with her and why she needed to stay in assisted living. She had no memory of how bad things were when she was living at home, alone. She didn't remember that she wanted to go home even when she was at home. It turns out that one of her major concerns is the cost of assisted living so we discussed that and I let her know that everything would be fine financially. Now she may not remember any of that conversation today, but it certainly made me feel a lot better. We even talked about her wishes regarding feeding tubes and life support. Although I was advised not to discuss her illness with her, I believe she has the right to know. Now when I have to tell her she can't go home, at least I know that at some point she was aware of the reasons.

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195Austin Nov 2012
That is a great idea to write down things for her to read when alone and mayve feeling scared-I had not heard of that before and it would probably work well for other-this is a great site for helping to share concerns and troubles but also things that can work.

momlover Nov 2012
My mom is pretty easy compared to your m-i-l so I say this with understanding that it may not work for her. I have a journal in her room and on three occassions I have written "short" notes letting her know a truth. I don't make an issue of it but just leave it where I know she will read it. Not perfect but it seems to help her. eg: Last week you had surgery on your leg for a wound. We brought you here because it was so severe the Doctor was concerned you could get an infection and possibly loose your leg. You are here to recuperate. God Blessed us as your wound is healing well.

jeannegibbs Apr 2012
I am sorry that drugs are not an option. I was going to suggest that her doctor might be able to provide some pharmaceutical help. This approach has been hugely helpful in living with my husband's dementia for 9 years.

It sounds like you are doing the "right" things.

Don't take her different treatment of you and the other caregiver personally. You each probably remind her of someone in her past.

maria125 Apr 2012
My patient is at home and I live in, but she never stops asking to go home. She does not recognise it as her home even though her beloved cat is right here, just keeps on stressing about her (deceased) animals being left to starve, and her (deceased) son lying ill and crying for her, He died when he was twenty. She has no family left, just a family friend who she rarely sees and who is ill at moment. She thinks I am keeping her prisoner. She hates the one relative who is alive and he cant visit so frankly its quite true that she is lonely. I take her out as much as possible in wheelchair but she complains and doesnt enjoy it most times. She never knows we've been out and starts crying to go out the minute we are back. Never knows when her friend has been. I work 24 hour shifts and she can get up as many as 4 times a night. Also she will accept the answers we give from the younger carer without any trouble but she argues the point with me continually. We use all the excuses everyone suggests but it doesn't seem to work any more.The further down the road of dementia she goes the more she wants to go to her none existent other home. It's now virtually impossible to distract her most of the time. She thinks her gran and mom are alive but when I agree she looks at me with suspicion as if she knows I'm lying. How can I make her happy in her own home? Drugs are not an option.

FairyLampLady Sep 2010
Unfortunately, her family physician retired and she refuses to listen to the doctors at the facility. She insists that she is well enough to go home and live with her husband. However, her husband moved out almost a year ago and moved in with one of his children. Their divorce was final 6 months ago and he has had no contact with her since then. She thinks they "remarried" and he is waiting for her to come home.

We understand her anger since it was not her decision to move into the facility. We tried for months to convince her to either get a LifeAlert, let someone stay with her, or move into assisted living, but she refused. Her fourth fall left her on the floor all night, unable to reach the telephone, and barely conscious when my brother-in-law arrived the next morning. It resulted in a week-long hospital stay, a month in rehab, a failed attempt at assisted living, another week in the hospital and finally the memory care unit. My husband described it as waiting for a train wreck to happen and being unable to stop it.

We appreciate your suggested "answers". We tried similar distractions a few months ago and encouraged her to get involved with the group activities. After some initial success, she reverted back to her old behaviors. She is determined that she is going home and spends most of her time sitting in her room waiting for someone to come pick her up.

We live 400 miles away and have been trying to visit monthly. However, the last visit ended with her being verbally abusive to my husband and he did not visit her again before we returned home. We appreciate all the suggestions we've received and we will keep trying to find some way to reach out to her while she still remembers who we are.

MiaMadre Sep 2010
FairyLampLady: you mentioned FOUR falls! Why not sit with her and her doctor and have HIM explain that she is there to help her recover! In early dementia stages she may be able to understand if someone in AUTHORITY tells her it is for her own good.

Trust me as her dementia worsens she will 'move past this' but I have seen all levels of dementia and if she is in the early stages, she may just be willing to listen to a DOCTOR, but not family.

Imagine yourself in her position. You are taken from your home, and don't know when (or if) you will return. With little else to think about, all you can think about is GOING HOME!

In the (distant) past I have been on amazing vacations to some of the most beautiful spots in the world, and couldn't WAIT to get back home! Most of us love to be at home. Hmmm.... easy to understand why most people would rather be at home, instead of a 'strange place'.

Now imagine being somewhere LESS than a vacation-like destination and wondering the same thing? If she is able to understand take the time to calmly explain the situation. Don't expect her to understand, and try (hard) not to upset her. Again having someone in authority (doctor/nurse, etc) will take the pressure off you and make them explain.

When family/friends visit be prepared. Have something else to do, magazine, crafts, snacks, etc and take her for a 'wheelchair ride' or a walk if she is able. If she starts to ask qeustions, Here are some 'answers' you can try. Be prepared, tell visitors what to expect, and have THEM be prepared.

Answers for the family to hand out:
MIL asks: "Are you here to take me home?"
family answer (with a smile): "We are waiting to hear from the doctor, have you seen him today? Let's have a snack, while we wait to hear from the doctor"

MIL asks: "Why can't I go home?"
family answer (again with a smile): "MIL/Grandmom, we want you to be feeling better before you leave here" Have you been doing your exercises with the therapist?" "Lets start on this puzzle/craft"

MIL: "I want to go home to my husband, he must be worried about me"
Family answer: "We JUST talked to husband /Dad/Grandpop" and he knows you are here, and wants you to feel better. He said he would call as SOON as he can"

Talk to a COUNSELOR there are the facility and have them help you with strategies that might help. Your MIL is not the first person to 'want to go home'. SURELY (and I say this with much hope) they have some strategies that will help her feel more at home there! If she is still having this much trouble after six months, I would be concerned about the level of correct interaction she IS getting from the staff.

On a lighter note: By the time my mother was at the 'facility' she was in the advanced stage of dementia and when she asked to go 'home' I would tell her she WAS at home, and her next question was: "Then WHEN are all these other people going to leave? I didn't invite them here!" LOLOLOL I had to hold back my laughter!

mention to her WITH her doctor present. Have HIM explain that her falls are a result of ....... (insert reason) and that (s)he wants your MIL to be safe. As they see IMPROVEMENT of her mobility, she (your MIL) will be reevaluated to see if she is able to go home.

FairyLampLady Sep 2010
My mother-in-law also has macular degeneration and early dementia and doctors recommended 24/7 care after her 4th fall in less than a year. Unfortunately, my mother-in-law is used to getting her way and she refused to accept it. After she was moved into assisted living, she went on a hunger strike and had to be hospitalized. We think she assumed that if she refused to eat, they would have to let her go home. Instead, she was moved to the memory unit. When a family member visits, she assumes they are there to take her home. When we try and explain that she needs to stay there, she becomes angry and says very hurtful things. We need to know if there is a way to help her move past this so family visits will be less stressful.

NancyH Sep 2010
When my mother-in-law was in the nursing home for rehab with a broken hip, she would constantly talk about going back home. All her doctors decided because of the dementia and terrible eyesight from macular degeneration, she could NEVER live alone again. We used to pussy foot around all the time and try to put her off the idea of going back home, but finally I had to just put it out there and tell her that she can NEVER go home again. She cried for a few days, but finally excepted it. Even now after 6 months in asst living, she still mentions that she sure would like to go home again, but she always adds that she knows she can't. Then again my m-i-l is pretty pliable and agreeable (most of the time). So maybe we got lucky.

IsabelCares Sep 2010
I agree with 195Austin. If she really is that adamant about wanting to be taken home, telling her about her condo sale will only make her dig in, and may make her paranoid about others stealing from her.

Only if you feel comfortable doing so, back off for a brief spell, then go see her. Do that a few times and see what happens, whether she is worse, or starting to re-direct her focus to things in the nursing home.

Does she have enough things she can enjoy during the day? Ask the staff whether she does the same with them and what they tell her when she asks.

anne123 Sep 2010
This sure sounds like a challenge all right. If I were you, I would talk to the administrators and nurses over at the facility where your MIL is and together come up with some solutions. There has to be a way to get your MIL to calm down. As someone else said here, dementia does change the rules and you need to be creative to care for the patient and "keep the peace" , so to speak. On the other hand, sometimes the peace just can't be kept and the loved one receiving care has to find out the truth. I really don't know whether you ought to tell your MIL you sold the condo. That would be a good question to ask a professional at her facility, and get his/her opinion. They should be aware of her behaviors and what is going on. Good luck with this.

FairyLampLady Sep 2010
We tried bringing items from home and she became very upset when she recognized them. She said that she was worried that her "favorite things" would be stolen and she wanted them left at home where they would be safe.

yearight Sep 2010
Depending on the extent of her dementia she could be quite comforted by having her own possesions around her. Are you able to bring say, a favorite chair or her own blanket for her bed?

195Austin Sep 2010
That is a hard question she may become more angery if she knew her condo was sold-I would just make brief visits so you know what is going on with her do you think changing her room would help maybe with another roomate she might do better does the facility have family meeting with the resident and the nurses and a social worker so you can discuss these problems -and get some help-it would be better for her if the family continues to visit for short periods of time-it takes some longer to adjust esp. if they like being in control good luck let me know how things are going you can always write on my wall and I will get back to you but be assured this is the best place for her.

MiaMadre Sep 2010
Telling her the 'truth' is only going to fuel the fire! When you are dealing with someone with dementia all the rules change. Where does she sleep? In a chair? In another bed?

Why not 'type' a letter to your MIL from your ex(FIL) asking her to be patient and make herself at HOME in the place she is at, until he can get there an visit. Add something 'creative' like the fact that he is away on business, and perhaps (if he is still alive) why not have HIM call her and ask her how she is doing.

This may seem deceitful, but it really isn't. She is not living in the same reality as 'we' are anymore, and her reality is very different now.

I still think family should visit, and bring things for her to do, or take her 'outside' or play 'bingo with her and try to get her involved in the activities at the facility.

How does the doctor/nursing staff say she is doing? If they are well versed in caring for dementia patients, they should be working with you on trying to get her acclimated.

How well is your family versed in Dementia issues and behaviors? There are many great books that can help you learn how to talk to individual with dementia. "Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease by Joanne Koenig Coste and Robert Butler" will get you and your family a good head-start in dealing with the challenges you will face.

Please take the time to make her feel comfortable in her new surroundings. God Bless.

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