How to tell mom she needs to stay in nursing home permanently?

First of all, happy to hear that your brother and SIL are helping out with visits. BUT, him saying "Because I'm the health care proxy and POA, my brother says I have to make a decision about her staying permanently." is rather a cop-out.

You have the authority to make final decisions and sign paperwork, but responsible family members *SHOULD* work together and make a joint decision. That said, you can only try - make the effort to see if you can reason with him, but if one or two attempts are rebuffed, then you go with what you think is best.

Due to logistics, only YB and I are designated POAs, OB was left out as he was not here to sign the paperwork at the time they were done and we didn't revisit them later. I am actually glad he isn't, because during his last trip here 2 years ago to help with the condo clean out and "visit" mom (one time and refused to go again!) he revealed that his true colors from childhood remain - he is physically/verbally/emotionally abusive and is not welcome anywhere near me again!

Although only the two of us are POAs, at the time we had to make decisions about mom, and where she would live (we tried bringing aides in, she refused to let them in after 2 months and that was only 1hr/day, mainly shooting the breeze as she didn't need any real help at that point), I wanted input from both of them. No one wants to make these decisions, but even worse is to have one or more decline to contribute, but then turn it around later and throw it in your face that it is YOUR fault! I had an ex do this - we had joint legal custody, so we should make joint decisions, but he would just say I am with them more, so I know better - later he would try to hold that against me and lie, saying I didn't consult him!!! That was before any kind of email, etc, so regular mail was the only option. CYA.

So, if possible, try to get his input. Perhaps word it in a way that indicates you are struggling with the decision and would appreciate his input. One or two tries and if he refuses, then note it and move on. If/when he throws you under the bus later, remind him that you consulted with him and he refused to cooperate (maybe make at least one request via email, so it is documented.)

That out of the way, I agree with the majority here about not addressing dementia with your mother. 1) she won't agree, 2) she will get angry about it and/or 3) she won't remember the discussion. Dementia lies to the person who has it. Too often in their mind they are many years younger and just fine thank you. Despite having AL in her plans, our mother was adamant she was fine, independent and could cook. She had no real physical limitations at that time, but short term memory was shot and her ability to manage finances, understand something as simple as a W2 or to follow a recipe were history. She still lived alone, so some failings were not as obvious right away. Having installed some cameras helped. Taking the car away required taking her shopping, so it wasn't long before I could see she was not cooking, couldn't remember where she put supplies like TP, plastic wrap, paper towels, etc.

The best you can do with her is push the responsibility back on the medical team (doctor, rehab, etc), encourage her to work hard towards her goal of "going home", and then try to change the subject. Not as easy while we can't be physically in the place to distract, but do try! Use words like soon, later, etc, no exact time frames, even when pushing the doc/rehab scenario.

One thing I am glad I didn't do was participate in the actual move - I had my brothers do it. Not sure if it was that or just somewhere in there she knew better, but she only pestered YB about going back to the condo, not me. After 9 mo, she forgot the condo and would ask about her mother and the house she lived in previously (gone 40 and 26+ years, respectively!)

I wrote a response yesterday but thought I should follow up with what happened after that. I got a call from Mom about 5:30 last night. She never calls as she doesn't know how to use the phone or remember my number. She was extremely upset, crying and trying to explain why she had to "get out of there". She couldn't explain it, didn't really know why she was as upset as she was and thought she had dialed the phone to call me (the nurse later told me she called for her). I tried to calm her down by asking some questions about what was going on that caused her to feel like that. My brothers and I had a video chat earlier in the day that was great! I was at a loss what to say to her. She finally got so upset with me for not understanding, she hung up on me. Wow. I immediately called the nurse's station and they said that she had just gotten up from a nap and had asked them to call me. She hadn't acted upset with them so they had no idea what was happening. Of course, I immediately jumped to "Is it a UTI?" or something else. I told my brothers and one of them called right after dinner. He said she seemed OK although upset with how she treated me but he got her laughing.

I'm sharing this because, once again, just when things seem to be going in the right direction, the dementia kicks in and you can be right back to square one. I never know what to expect and that is so stressful. But, I also know that things will probably be different again today - hopefully for the better!

I am going through the same thing now. My Mother had her second stroke at the end of January. The hospital recommended she got to a rehab because her left side was paralyzed. made some improvements but her PT said she was lazy and didn't work hard enough. They informed in their appendand she needed 24 hour care.

I struggled with what to but decided on assistant living facility. I dicussed it with her and her case worker discussed it with her. She has currently been there a month and is still getting better, but she want to come home and always asked when she can come home. she does not understand about the virus she is not sure where she lives and thinks she is 11 years younger then what she is. She dementia and I stuggle everyday should U bring her home. I feel so guilty about this and second guess myself every time I see her.

I feel I made the correct decision she like the place she is at, and has lots of things and friend to keep her busy. if she came she would site by herself most of the day or just lay in the bed. I believe she is much better off where she is and is getting better can then she would with us, but she does not understand that.

These conversations are never easy. Some, who have NO intention of actually helping, will tell you that you should shoulder all of the responsibility yourself. You owe them nothing. I had some pretty good luck in that, for my Dad, I printed "signs' - put in plastic page keepers. As simply as possible, what was happening or, going to happen. I left them in his room. Typically, it was the first thing he wanted to discuss. It helped.

Yes, this is so familiar and so hard to deal with! My Mom went through a similar set of medical problems including two falls. She also doesn't realize she has dementia and felt she was OK at home. The last time she fell and was in the hospital, then rehab, my brothers and I decided it was best that she stay in the NH. She would have eyes on her most all the time and a nurse or aide would be around if she needed help. I always felt terrible every time she said she was going home "tomorrow" so I finally started responding, "Really? The doctors haven't told me that yet" and then changed the subject. Most of the time that works. But, it has gotten better now that she has made friends and there's always activity going on to keep her occupied. She even, on occasion, will refer to her room as "home" now which is a relief!

I'm sorry you have to make the decision on your own, that must be very hard. But you obviously want to do what you feel is best for your Mom and your decision is made out of love for her. Don't allow guilt to take over, it's not warranted or healthy for you.

Dementia means exactly that: living in only the moment in comfort. Familiar belongings?..to distract Mom? Sorry to hear about her conditions and hope she will feel better soon.

Your mother is in the NH for a reason. You cannot and should not hang onto guilt, else it eats you up and you faint and fall ill. Prayers and big hugs sent to you.

Since you have already decided that your Mom should stay in the NH permanently, you do not need to tell her the truth. When I placed my Mother in the NH she also cried to go home. I told her she could go home when she gets completely well. For now, she needed to stay in the NH because they have 24/7 Doctor and Nurse to take care of her. If she complains that she is not getting rehab therapy just tell it will resume after a recess, and there will group therapy with other patients in the building. Be creative and make it easier on yourself and your Mom. (You can always bring her home later, if you decide.)

If the facility social worker is not equipped to help you deal with you and your mothers mental health issues. Get a referral from your Dr. for you to see a psychologist. He will help you with your needs and help you "how to relate" to your mother. You can be there for her "dependency needs" but the facility provides her physical needs. You need to have "peace" in doing what you and your mother needs.

With dementia, you have to balance your answers somewhere between honesty and what will give your parent less stress. I like the answer of setting parameters such as "when you can walk; stand on your own". It's honest and encourages them to work on rehab, assuming they are going through rehab after a fall. The doctors and rehab staff told us my father belonged in memory care after his fall, so when he went "home", he went directly to a new apartment that we had set up for him with some of his belongings. He never really understood that it was his new home, although we told him it was. He thought it was another step in rehab. Then he never mentioned it again. We remained active in his life, encouraged visitors and decorated the place on holidays and continued to take him out to eat and go places, all of which is difficult to do these days. I know he would not have understood the virus and all the current restrictions to provide for his safety. He didn't particularly like group eating but I encouraged it. Had the TV on too much. I was hoping for a better activities program but tried to make up the difference ourselves so he wouldn't get sedentary and bored, which he eventually did. But there was someone checking on him every hour in case he needed help using the bathroom or to clean him up if he didn't make it. They were generally cheerful and kind to him. I knew he was eating a more balanced diet on a regular basis. When we couldn't get to church, the pastor brought the service to them. It was a great relief for me to be able to go about my business and sleep through the night without worrying about him laying on the ground, unable to summon medical help or answering alerts in the middle of the night. I couldn't lift him by myself and he was tired of going to the hospital. NH wasn't a perfect solution but he wasn't alone and fearful. Once in awhile, he would ask me why he couldn't figure some things out and I would tell him he had dementia, which makes it harder. He would scoff at me and say he didn't and I would leave it at that. He was very surprised to hear he was 90 years old and I would just say, "Well, you're as old as you feel and you must not feel 90." Cheerful and light made him happy. And his comfortable old bed.

I told my mom that she can come home from the NH when she gets better.

I remember my dad asking my if he had to stay in AL. I shook my head yes and it killed him. It still haunts me.

I struggled with how to do this many times. What I discovered is that with dementia they don’t remember what you told them. I tried telling my Mom a couple times. Each time was a struggle and a lot of begging to come home and a tear filled departure. Now I just tell her when she gets better and can walk and stand on her own that she can go home. I don’t even discuss that we sold her house. When she asks for a certain item I do my best to find it & bring it to her or tell her if I can’t locate it. That has put an end to the tear filled begging to go home. This way it is in her court. I hope that she’ll at least try to stand and walk some for the aids to keep her strength up. I have gotten to the point that I don’t take her out at all. Just to hard to do.

Others have mentioned this, so I will chime in on this small digression from the main point: if you promised your mother that you would never put her in a nursing home/rest home/whatever she feared, do NOT worry about it.
1) The mother to whom you made that promise is not the same person you are now concerned about, she was worried but still competent to make a decision then, she is no longer competent to know her needs.
2) You are not the same person who made the promise, you have been changed through maturation and through a greater understanding of her current needs.
3) The facility she now needs probably bears little resemblance to the one she feared decades ago. The thing she feared was probably a poorly staffed storage facility for unwanted elders waiting to die and ignored by their families. That was a stereotype many years ago that was not completely true in its time and is not completely true now. Depending on finances, you are taking care to place her in the best place for her, you will not forget her, and you will continue to care for her, whether she understands that or not.

My own mother made that plea back in the '60's based on misinformation but she has admitted in later years that her request was not right or fair. Although she still wants to remain in her own home and does not realize that she really is not able to care for herself adequately, she does acknowledge that the time may come when she will need more care. My sisters and I have told her that she will need to have residential care if she can no longer clean herself or dress herself, if she can no longer get herself from her bed to her chair, or if she can no longer get herself from her chair into our cars. She agrees--for now. My sisters and I are all in or near our 70's and cannot assist her in those things. If the time comes when those conditions come about and we will need to pressure her to accept residential care, that old promise will hold no weight.

It is sufficiently difficult to watch your mother's condition deteriorate until she bears little resemblance to the powerhouse of your youth. It is unkind to yourself to shoulder guilt about an old promise that neither of you really understood. Taking care of yourself is the best gift you can give to your own children.

Feeling guilty is normal. You can not make decisions based on how it makes you feel, it should be based on what is the best solution for the one you love. She is lost in time and it is extremely scary for her. The best thing is to tell her she will be going home in a few weeks. Then bring home to her. Furniture, pictures, clothes, blankets nitnaks, and anything that will remind her of home. Set up the NH room like her room at home. and when she askes to go home tell her in a few weeks, and repeat. When she get to her NH. Tell her you brought home to her. And that you will always be near to her. Give plenty of hugs and kisses when you can. If you still have to use a window , make signs with kisses and hugs, hearts and I Love Yous!

I was about to say almost exactly what Matrylepete just said. Reasoning and explanations are irrelevant. Deal with the present moment. Telling her she has Dementia would be meaningless. If she is progressing with hip rehab, praise her for doing a good job.

Do you have NH placement arranged yet? When she is discharged from Rehab, help her move to her "new room."

You and your brother and your SIL are doing an amazing job of visiting. Continuing to be your mother's 24/7 caretaker is too much. Accept that you cannot manage that level of care and continue to make the best placement arrangements you can..

First off, a person with dementia is not a person you should try to reason with. Their thought process, due to how their brain is functioning now, is not where it allows or should be expected to think the same as before. Do not try to explain things to her and get her to understand. And I would not even tell her she has dementia. With this disease, it is best that you say only what needs to be said. Like, "The doctor said" followed by this is what is needed now. Keep it simple.
Just know in your heart, you are doing the very best for her.

Believe me, they always want to go home, even if at home.

So...since she refused outside help and you're the sole care giver STOP feeling guilty! My sister and I are in the same boat as you but there's2of us and at times it's more than we can handle. You could simply explain that because she refused outside help, this is where it has gotten her and now with her injury it is now impossible for her to be home. Do not let her put it back on you because SHE WILL!
Make your decision and if anyone objects, ask them if they would like to be her caregiver permanently and with no help, then when they say no, simply say I rest my case and go on doing what you need to do with your life. Each time you visit mom, she will repeat that she wants to go home. Repeat that again because she refused help this is what happened and nothing can be done. Do NOT take her home...even for a visit or the cycle starts again. Enjoy your free time to live your life. You can still go visit mom. This is on her.

You must realize - she has dementia. There is no way on earth she will comprehend or understand what is going on. It is useless to tell her and explain. In this situation, the best you can do is "distract" leading her to think it is temporary and that you need respite because YOU are ill and are having problems. Defer the actual facts. Change the subject. Even if they could understand, they do not want to know or hear that so do not tell them. People like this will always refuse help sooner or later if it is not their child, etc. Yo have to face the fact that it is what it is, she is where she has to be. This is YOUR time to live and take care of your own physical issues - you can't do the impossible without harming yourself. You have to be strong - you must now take care of yourself first. Perhaps some medication may make her less upset so talk to the doctors. This is just a horrible part of life but there is no other way.

“Mom, we need to move forward, and make plans for your ongoing care.”

Write it down and rehearse it.

Wait for the opening, take a deep breath, release.....and say it with conviction you have made the first step in planning your future.

I have a 100 year old mother at home and i am currently going through the same thing. I made a decision that I can’t keep her home safely as her dementia is progressing rapidly. I am her POA, and although I do have outside aides to help me, she calls out for me and I am always there. When she is in a nursing home I won’t be there to console her when she cries. That being said, it is not safe for me to keep her home. I have to have back surgery in the midst of all of this. I try to tell her that we are moving, but I don’t think she understands. Even if I can’t get her to understand, I am moving forward to implement the nursing home solution.

What is helping me with the decision is this: My mom is on a journey to leave this world. I think she knows it. As she moves into a nursing home, although I will visit every day, there will be a separation. Eventually she will get used to it and she will continue on her journey.
I don’t want her to leave her home. But, as I discern my decision, I realize that keeping her home will serve only to fulfill my need to see her rather than her need to go on her journey. It’s hard, and I spend much time crying, but it is the right thing to do for HER. It’s all about her journey, not my needs.
You are doing the right thing.

I struggled with this placement also..I feel your pain. My mom 6 weeks later is still packing up weekly for her “move home”. She has dementia and on the rare occasion knows she needs to be where she is. She will tell me “I need nursing home care”.. Luckily my mom told me at Easter {pre memory care placement} when the time is right I should place her and not listen to her pleas to leave. She has Lewy Body dementia and she gets fairly clear at times. Covid Lockdown is destroying her quality of life. She would be ok if I could visit frequently, take her out for rides etc. Sadly we have no options but to ride this out.

Allow the NH to help do this or maybe even the social worker.....

My dad was also in rehab following a fractured femur and hip. He would not cooperate with PT enough to be able to walk again, therefore he was wheelchair bound. He also had dementia. The rehab where your mom is should be having a care conference with you and any other family before discharge. Your mom can attend too. Sometimes this is good because they hear it from them and not you as to what the next steps are in her care. We chose not to have my dad attend because of his dementia. Anyway, the PT, OT, ST, Nurses etc and facility doctor should attend and make the recommendation of her care continuing in long term care if that’s appropriate. I asked the facility doctor to go with me to tell my dad that he needed more care and would have to move. He was very agreeable because I don’t think he grasped what it meant at the time. I was amazed but then he became different when he realized he was moved permanently. You have every right to do otherwise, but if this is recommended, I would go with it and not take her in to your home. It will not be easy to have to explain to her So perhaps have the doctor do it. Put on a thick skin as you go through this and lose the guilt. Dad was accusatory and angry towards me as it was all my fault. But I knew that was the level of care he needed. This is the hardest part, I totally understand what you are facing.

Yes, I agree. You are seeing her too often and that is making her focus on getting out. She only needs to hear from someone once a day. Or less; it might make you feel less guilty but why would you feel guilty? She is unable to stay in her house; that is not your fault. She has dementia and cannot understand what is happening around her; also not your fault. They always want to go home; not possible. You do have the right to consider yourself and your needs; you should not feel guilty about that. Just keep putting her off and don't tell her the truth; she cannot understand it anyway. I agree with leolonnie1, tell her doctor said she has to stay for now. I assume that the rehab facility has a nursing home bed for her to transition to?

I'd tell her it's doctor's orders that she stay in skilled nursing, that she's had too many health issues at home so it's no longer an option to stay there; it's too dangerous. If and when her doctor says it's okay to go home, only THEN can such a thing be considered. And only tell her that if necessary. Otherwise, she's in Skilled Nursing, per doctor's orders. Period

I'd avoid the 'dementia' discussion entirely. My mother has moderate dementia and lives in Memory Care. To hear her tell it, however, there's nothing wrong with her at all. It's all the OTHERS who are stupid morons and belong there, not her. She's always ALWAYS had a strong need to feel 'better than' so I let her keep her delusions of grandeur. Sometimes she will ask me to come pick her up and get her out of there, since she 'doesn't belong' in such a place, but I tell her that she IS exactly where she belongs: In an environment where everyone cares beautifully for her and she has attention 24/7, which she would get nowhere else. If she presses the subject, I tell her the only other alternative is Skilled Nursing (she was there for rehab last year and actually liked it BETTER than she does the ALF she's at now). Little does she know that she's running out of money for private pay and will need to go to Skilled Nursing next year ANYWAY.........I just avoid that topic entirely.

Wishing you the best of luck with a sticky situation.

It isn’t necessary to tell her or ask her or talk to her about anything but her present care and moving into the future.

You made a good decision for her based on HER needs AND YOURS.

It is very common for an elderly relative to plead to “go home”, and that period of adjustment is torment for both the resident and the caregiver, but you have to convince yourself that her safety and care are more important than what she says or how what she says make you feel.

Your brother is wimping out on you, so you can comfortably ignore his input. Guilt is a waste of your valuable energy. You know what needs to be done, and why.

Hope this is the hardest thing you ever have to do, because if you can acknowledge this as such, you can move forward in the peace of knowing that you’ve accomplished something you’d never thought you’d have to do.

By the way, at one week, She actually may be seeing too much of you and your brother right now. See what happens if you alternate days. She needs to begin to learn to trust her staff.

All hopes for a successful adjustment for all of you.

How about answering with something that’s truthful but not so dreaded and final? Like.... Let’s see how things are going at the end of the Summer, which will turn into... Let’s see how things are going and what the Dr says after Thanksgiving....after the Holidays....and put a sparkle in your eye (it’s probably already there through the tears).
I found that my Mom took her demeanor and attitude from the way I presented, and my tone of voice. I’m so sorry that you’re having to go through this, and that you’re having to reverse roles with your adult parent. It’s so unfair!!!

My advice would also be not to tell her she's staying permanently. Find a way to divert the conversation and continue to do so. Trying to have a family meeting to explain this to her could just backfire on you and upset her terribly or it's even very possible she won't remember the conversation. I'm sure she does not know she's got dementia- -I've been told that most who have it do not know they have it (which is why it gets so dangerous for them). I've also been told that some nursing home residents keep asking to go home for 20+ years and we need to remember that it can be hard to hear that question over and over, but the facts don't lie in terms of the care she needs and will continue to need. The elder frequently does not understand exactly how much care they need and therefore they don't understand the ramifications of providing that care to them. My interaction with nursing homes over many decades has taught me over and over that many, many residents believe that THEY themselves could walk out the door tomorrow and live on their own but the other residents are the ones who need to be there. Behind every NH resident there is a long story as to why they are there - it's just that elder may not acknowledge or remember much of that story. In some cases, elder does not even know or understand all that was done on their behalf prior to NH placement.

Please take care of your own health. I don’t mean that lightly, your mother needs you to be healthy for her so you can be a good advocate for her in her new setting. Put aside the guilt, you’re doing the best you can for her by providing a safe place where she can receive care around the clock by people properly trained to do so. As for telling her it’s permanent, I hope you’ll never go down that road. It’ll be a no win conversation. Change the subject, make it about her doctor's orders, whatever you need to say to move forward and not have a endless looping conversation where you’ll both feel unsatisfied and sad. I wish you the best

Sad all around