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Mom had a stroke in 2016 which has limited her ability to do those things she use to do (cook, drive, work in her church ministry, etc.). My sister and I have been sharing the role in taking good care her … keeping her comfortable, exercising, visiting friends/family, helping her cook, crocheting and many other activities to ensure that she lives a fulfilled life. She has always expressed never wanting to go into a nursing home and my sister, brother and myself have always ensured her that we would take care of her. Within the last year, specifically, recent months, we notice what may be very early signs of dementia (disoriented when waking in the middle of the night, not recalling hearing aids being taken out, long pauses when given some instructions, etc.). 95% of the time she is alert, engaged, communicative, and exhibits good short-term and great long-term memory. A couple of times this month, she told my sister and me that she was feeling strange but could not explain it. Just this morning, she asked me if we could have a talk and proceeded to tell me that she thinks we need to start looking for a nursing home for. When asked why especially after we all have expressed to her time-n-time again that we would take care of her, she said that she just thought it was time.
I wasn’t sure how to take this because when she would express her fear of a nursing home, my sister would get emotional and give her emotional/dramatic responses saying “no, no, no mom” and she would be fine. Me being wired a different way would just let her talk and reassure her (without all of the emotions) that we love her and that she is safe in her children’s care.
Soooo, I am not sure if this is a phase of her condition or if she just really needs the emotional responses to make her feel better.
Please help because I don’t want to minimize her needs/request nor do I want to get on an emotional roller coaster if this is something that will continue to flip-flop.

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Promises about residential treatment and care should NEVER be asked for or granted by or on behalf of ANY LO.

NEVER

NEVER

NEVER.

Ok, now everyone knows where I stand on this issue.

Without using a crystal ball or fortune teller NO ONE EVER KNOWS how and/or how much physical/cognitive needs may change, and no one EVER KNOWS how difficult it is to manage the needs of an incontinent morbidly obese LO or an LO who becomes a chronic fall risk, and those are just a VERY FEW of the issues that can and DO occur.

Many caregivers take on the task without realizing (or accepting) the devastating consequences of dementia. And each of us, for both the sake of our LOs AND OURSELVES, MUST learn how people with dementia act, and talk, and relate to others.

Even the burden of just discussing the word ”promise” may cause overwhelming anxiety and regret to both the hapless LO AND the caregivers.

DON’T SAY IT.

Say “Mom, I love you so dearly. I want you to know that the decisions made on your behalf ass you get Oder will always be made with your needs in mind, and I will be there to make sure they are carried out”.

When you become a caregiver you have already entered into one of the most difficult and painful arrangements a human being can perform.

Take the best care possible of your LO, whether that means living where they’ve lived for years, hiring help, or researching and finding the very best residential setting you can find, but never make a promise. You will not deserve the consequences if/when you are unable to keep it.

My best thoughts to all presently in this painful situation. I am too.
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I'm new to this forum and I'm already impressed with how different situations are handled by the family and how so many feel guilt over the decisions we make for out loved one.

My husband has vascular dementia and has become very frustrated at his inability to verbally express his thoughts but still knows what is going on around him. I know he is angry and depressed that this has happened to him and he was spending his days either in his recliner or in bed. He no longer has any interest in watching television or anything else. He can no longer do any of the things he enjoyed doing.

He and I agreed that he would try a Memory Care facility for 30 to 60 days so he could enjoy interaction with others, activities, and outings. If he didn't like it, he could come home. Little did we know that the other residents in Memory Care are worse than him and his only socialization is with the aides who care for him since he does need assistance with bathing, toileting, and walking with his walker.

It has now been 30 days and he wants to come home. He said being in this facility is punishment for him having dementia. That was heart breaking to hear. He said the aide who cares for him during the day makes his life miserable. I think it is because she can be a bit domineering but she may only be doing her job. I've asked the director of the facility if another aide could be assigned to him but they are so short staffed and because it's a memory care unit, it may not be possible to switch aides from one resident to another.

I realize now that I can't take care of him if he comes home and when I tell him that, he says I'm going back on what we agreed to. He said he'll do whatever I want him to do and if it means he has to stay there, then he will but he's not happy. I am overcome with guilt. I'm trying to convince myself that this is our "new normal" and this is what happens when aging throws us a curve ball.

Before he thinks I have totally abandoned him, I'm searching for alternative solutions and trying to come up with an arrangement that will give both of us some quality of life. I'm thinking that maybe bringing him home for a few hours a couple of times a week may be workable.

I just had to share my thoughts.
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Take her up on it and help her find one. The kind of care that you’ve indicated she will need will totally exhaust all of you, upend your private lives, dominate your thoughts and communications and generally make life miserable for you and your siblings. She’s offered you a gift, and I hope you take it.
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You are very very lucky that your mom is not one of those 'fight to the end to stay home' kind of elders.

She seems to have a good head on her shoulders and this decision, should she CHOOSE to make it, will allay your 'guilt' and help her to feel more independent.

My mom rode it out at her apt at YB's..and really? We should have moved her to an AL 3 years ago. She would have not had to endure the gut wrenching BOREDOM of the covid lockdown that my brother enforced on her. She was a good sport, and finally, right towards the end, expressed that she was so tired and foggy all the time. I felt she had been like that for a couple of YEARS, but my 'voice' was not heard.

Mom was OK with a move to an AL, but YB wouldn't allow any talk of it. IDK why, I'll never understand him. Her last years were lonely, boring and she felt like a complete prisoner. (Which she was, for one solid year she did not leave her apartment. I thought it was awful, but she did only what YB allowed.)

If your mom looks at some AL's and finds one that meshes well with her personality and taste and wants to move--I'd encourage it! And as for long term care--she'll ease into higher levels of care as needed. Doing this move NOW will be 100xs easier than if you HAVE to move her after, say, a fall and a hospital stay.
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Geaton777 Oct 2022
Midkid58, yes, the boredom and loneliness can happen even when living with family. Unless the family caregiver is their entertainer as well, I don't think people consider that this can be a downside of in-home care.
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Why not research some good facilities that have a continuity of care (so she can start out in IL or AL and then as her needs increase -- and they WILL -- everything will be in place and all decisions made at a time when she will be least able to be in control of decisions.

What in-home caregivers sometimes don't realize is that their LO is actually lonely. A good facility will have daily activities, events and even field trips, as well as options for transportation for shopping, medical appointments, etc.

Helping her do the research now and making a choice gives her an important sense of control. She will also need to figure out what she can afford. She may need to talk to a Medicaid Planner. In the end, she doesn't have to go in right away. Often unprepared seniors have a cognitive or health crisis that causes their family to needlessly run around like their hair's on fire. Your Mom is lovingly and wisely sparing you of this. Please read on this forum the realities of caregiving so that you can avoid burnout. I wish your Mom all the best!
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Iamamazing Oct 2022
I was an ElderLaw Attorney for over 20 years before my first breast cancer diagnosis in 2006. Your compassion and practicality are spot on. I finally closed my practice at age 65 in 2013.

Your answers warm my heart,👍
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