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Mom has been in the hospital 4 times since January. Once for a mild heart attack, twice for hernia bowel obstruction, and most recently fractured hip from a fall. She's been in rehab for one week so far and wants to go home. She has dementia which has been steadily progressing. She doesn't understand why we can't come in to see her. We window visit twice per day and one video call. My brother and SIL also visit at least once per day. My problem is how do I tell her that she's going to be staying in the NH permanently after rehabbing is done? I feel horrible when she almost cries about coming home. I've been her sole caregiver through all of this since she refused outside help after a few weeks of visiting nurse, PT an OT. Because I'm the health care proxy and POA, my brother says I have to make a decision about her staying permanently. I feel so guilty even thinking about it and so anxious. I am 60 with my own health issues including a broken foot but I persevered through all of it to keep my mom home. I am so torn. She doesn't even realize that she has dementia so broaching the subject is tough. Any thoughts on what to say or not say is much apprectiated.

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tettwa, so many people on this forum have been in your shoes and understand the pain of this decision. It is ok to tell your mom a "therapeutic fib" that she can come home when the doctor says she can (because he/she won't be saying this actually). Just encourage her to keep doing the rehab which is good for her in any case.

You are not a bad person for making this decision. You need to take care of yourself first and foremost, or you won't be there for your mom! Her having both physical and cognitive issues, which will both intensify as time rolls on, means you will be tending to her 24/7 every single day and be completely overwhelmed as you will have no real life. Not many can do this, or want to. Please don't feel guilty -- I had to do it with my MIL, so I get it. May you gain peace in your heart as you adjust to this new arrangement.
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tettwa May 2020
Thank you for your insight.
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I am sorry to hear this and I went through this with my mother and the deeper her dementia got the worse it got. I ended up trying to divert the direction of the conversation or say a therapeutic fib like I will talk with the social worker or check with the doctor here. Earlier, I did have the social worker come and explain it to her, but she would soon forget that. I even would say things like, it's not up to me, it's up to the doctor to decide.

Basically, you can't reason with someone who has dementia and it gets worse over time.

It sounds like she's where she needs to be at this time of her life and her level of health. She would only get more difficult to care for at home even with your broken foot well.

I hope you did not promise to not place her in a nursing home when you were a little girl? That's not realistic for you don't really know what you are promising. If your mother asked you to promise, then that was not fair.

It may help to talk about your feelings of guilt with the NH social worker either on the phone or virtually if he or she can do that.

I don't think telling her she has dementia would help! She's either going to get upset and strongly deny it or forget that you told her.

You really can't tell someone with dementia what to do. You have to find ways to invite then to do what you want them to do. Like, mom how about I ask the social worker or doctor to talk with you about that? That's guiding without telling and she'll likely forget it anyway.

I wish you the best.
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tettwa May 2020
Thank you for your wisdom.
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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.
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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.
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tettwa May 2020
Thsnk you for your kind words.
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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
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tettwa May 2020
Thank you for that. I also am a daughter of 1930 mom.
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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!!!
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tettwa May 2020
Thank you for taking the time to give advice.
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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?
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tettwa May 2020
Yes they do have a bed. Thank you for the insight.
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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.
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tettwa May 2020
Thsnk you for the kind sentiment.
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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.
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tettwa May 2020
Thank you for enlightening me.
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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.
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