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My mom is 83 and currently on week 6 in a rehab and nursing home following a stroke. She has made progress, but it is very unlikely that she will ever be able to live independently again. (She lived alone prior to the stroke.) She is not demented, is fully grounded in reality, EXCEPT when it comes to her physical limitations. She insists she'll be fine once she gets home and refuses to have an aide. No matter how many times anyone (me, relatives, PT, SW, etc) tries to get through to her, she says that's ridiculous. It's getting worse and worse. Yesterday she told me she is miserable and feels like she's in prison. I totally understand, but what can I do? She often blames me for keeping her there.

At the family meeting two weeks ago, they said they were extending her rehab until the 28th of this month and will keep extending it as long as she continues to progress. Well, the 28th is coming up soon and my mom is determined to leave then, which is not going to happen. I don't even want to attend the next meeting because she's going to be so upset. I'm her only child, so I can't really let someone go in my place.

I know this is a common situation and I feel awful, just awful, every time I leave her there, knowing how miserable she is. Even if she was open to home care (which she isn't), that's not an option for now because she needs two people to transfer her.

I'm not even sure it's good for either one of us for me to visit, since all we do is go around and around and around.

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Thanks all. Oddly enough, when she had a complete eye exam about a month ago (after the stroke), the dr said she had perfect vision! And she did tracking and putting things off to one side, etc. So it's mysterious. Anyway, I'll see what I can do.
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I see your concern about your mom's vision. The nice thing, I'm sure you know, is that with either the Paperwhite or the Fire, she would be easily able to change the font size and also the style if she finds it helpful to read easier. My mom loved that feature because, for example, paperback books are often small and they have print that is too small for her to read easily even though she has a correct vision Rx. (She can no longer hold a heavy hard-cover book due to severe osteoarthritis in her hands and wrists.)
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I agree. Sometimes, when the person says they don't want to do something that they used to like or they will do it later, only they don't. It's not due to lack of interest or desire, but their ability is gone. I used to be curious as to why my cousi stopped watching her favorite tv shows. It was actually, because she was no longer able to follow the plot. She stopped reading, because she could not process the words and because a lost of initiation to do things on her own.

Of course, discuss it with her doctors, but unless her doctor is well versed in these type of symptoms, he may not be as equipped to pick up on it. I would seek the advice of an expert. I would also spend time observing and asking questions so you can see how she is really functioning, not just what she says, but what you can observe from her abilities.
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Xina, if your mother wants to read, the fact that one arm isn't working won't stop her for long. There may be other issues at play right now...attention, tracking, comprehension. Follow her lead wi this. Maybe borrow a tablet and see if she's interested.
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That's clever!

I made some small temporary headway by helping my mother to place her forefinger on whatever she wanted to read. But seeing as she had also lost initiation, she wasn't able to do that unaided either.

You can end up feeling like John Cleese trying to communicate with the wonderful Joan Sanderson in Fawlty Towers. You get one problem out of the way but it only reveals the next.
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Xina, have to agree with CM that the stroke has effected "something " about her vision that may be affecting her reading ability. Her vision, grossly may be fine, but other aspects such as tracking are interfering.

I had a friend whose stepfather finally realized that his post stroke reading prob7was being able to know where the end of the line of text was. We were able to figure out that a postit at the edge of the page was all the signal his brain needed.
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It's the stroke, Xina. You get a neurological problem called 'sensory deficit' or 'sensory inattention' (these aren't exactly the same thing but they seem pretty much intertwined as far as I can tell). It's to do with the way the brain processes input from the eyes via the optic nerve - I am very much at the limit of my understanding, here - and very roughly all of the data that was previously being handled by the part of her brain that has been damaged and/or cut off by the stroke is not getting through. So whole fields of vision are just absent, and the person isn't aware that they're absent. She's not seeing a blank, or any distortions, it's just not there at all.

She can see things on the right, so she moves the paper over to that side. But actually that isn't going to make any difference to what her brain sees, it just feels as though it ought to - like when you're looking at a screen, and you feel as though if you could stick your head inside it you'd be able to see round the corner, even though you know of course you couldn't because the image isn't there.

Try this experiment with a good, clear analogue clock face. Put it where she can see the whole clock and ask her to tell you the time. If both hands are on the right she shouldn't struggle, but if it's - say - a quarter to three or a quarter past nine you might get all kinds of variations on the theme as her brain tries to work out where both hands are. I found that if I put my finger on the visible clock hand, and then asked mother to track my finger over to the other clock hand, she would sometimes then be able to see it and she'd give the correct time promptly. Very weird! Also not really important enough to her dwindling quality of life to make it worth the effort for her, so I didn't pursue it.

If your mother continues to make progress you might find her vision improves, too. I wouldn't discuss this too precisely with her, though, because it might not; and thinking she's going partially blind is not going to cheer her up!
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I was hoping to get a device that allowed her to watch Netflix in addition to reading books. I have to give it some thought. The other thing is that, even though the eye doctor at the NH checked her out and said she has perfect vision, the OT says she has trouble tracking. I have noticed that she can read, but she kind of maneuvers the paper toward her right eye. Ack--I don't know! It all feels so complicated.
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A Kindle Paperwhite is easier to use as a book and I suspect that it would be lighter too. You can buy a case for it that turns into a stand so that your mom could prop it in her lap if she has a hard time holding it. Just a thought. The Kindle Fire is more complicated and may be a hard device for her to start with if she is not already familiar with computers. If the Fire becomes too challenging for her to use, she may just give up and refuse it. Also, many libraries have lots of Kindle books available for free to download for a period of time, just like a real book.
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I have literally gone through this identical scenario twice, once with my mother-in-law and another time with my mother.

Both of them would say "get me home and I will be ok" when they could not get out of bed without two people lifting them. You say your mother still has all of her cognitive abilities but I suspect she may have the beginnings of dementia.One epiphany I had was that I had to view my mom/mil as a child. Children don't always possess the necessary decision-making skills to know what's best for them so adults have to step in. It's the same for your mother. Buy her a Kindle or Ipad even if she says she doesn't want it. Arrange for her to go to a NH even though she says she is going home. I remember getting so frustrated at my mil that I said "Ok, right now, if you can raise up and get out of bed and walk on your own you can go home". Of course she could barely lift her head let alone get up. That hushed her for awhile, but in the end the decision had to be made for her to go to a NH as going home was not an option. I am so sorry you are going through this, OP, as I know how bad it makes you feel to see your mother so sad and in decline.
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I've decided I'm going to buy her a Kindle Fire or Samsung tablet. All she needs is Netflix (which she's never used, but would love so many options of movies and shows) and books. I figure it's not too hard to learn to use those. She is very, very computer illiterate, but she has to do something to pass the time. I've looked into the book holders, and even bought one, but they are awkward and not that easy to use. She's not into audiobooks either.
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Xina google "adaptive book holder" and you'll find some different kinds of book holders designed for someone with the use of just one hand/arm. Roberts book holder is one kind. Get her reading again - it's a great way to put yourself in another place in time and place.
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Does she like audiobooks, Xina? You can get some really, really good recordings of things like John le Carré, Agatha Christie, all sorts. I'm a keen bookworm too, but all the same it's nice sometimes to shut your eyes and listen to a rattling good story.
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Thanks, Churchmouse. I went and of course that's all she talked about when she wasn't making desperate and futile attempts to get out of bed herself. Sigh. It's really tough to go from completely independent to completely dependent overnight. She said she was so jealous that I could just walk out of there. I'm worried that she is going to get increasingly depressed and that being there is actually affecting her cognitive abilities. She absolutely will not consider antidepressants, and they won't change the situation anyway. She did have a psych consult, btw, and did not see a need for them for now. She also chooses not to watch TV or do anything that would stimulate her mind. She loves to read, but can't hold a book since her left hand is useless. She is resistant to an iPad, but I may force one on her.
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Xina, if you feel bad not visiting her and you were planning to go today anyway, then for heaven's sake go!

The guidelines for and against visiting are:

DO go if

You want to
You have time
You are not carrying any infectious diseases
You are not vulnerable to any infectious diseases that might have broken out in the rehab facility
You have not been asked to co-operate with any kind of no contact/settling policy

DO NOT go if

You have other, more pressing engagements
The staff have proposed leaving your mother to their care to assist settling in
There is some other good reason not to go, including above all that...
You don't want to.

The purpose of visiting your mother is not to have a rational conversation with her about when she is going home, or not today anyway. It is to see her, to offer her your company and love, and to satisfy yourself that she is fine and doesn't need anything.

I wouldn't take the duffel bag, mind. You'll only end up packing and unpacking it every time you go. Say "d'oh! Silly me! I'll bring it next time, remind me..."
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Please call the facility sicisl worker and ask about getting that psych evaluation.
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I was going to visit her today, but now I'm wondering if it even makes sense to do that. She's already called me four times to tell me to bring a duffle bag so we can pack up her clothes and stuff. She seems to believe the reason for my visit is to take her home today. This is so draining! I feel bad not visiting her.
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Xina, in your shoes, i would not be the one bringing up the subject of "not going home". If SHE raises the issue, develop a list of stock phrases...we'll talk to the doctor about that, the therapists are so pleased with your progress, mom, hmmm, need to get strong here right now, lets concentrate on the task at hand, which is therapy.

As someone wisely pointed out previously, the more you emphasize it, the more she's going to fight you.
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Thanks, everyone. I know I've posted about the same frustrations here many times, but I need to vent and get a reality check every do often. Just spoke with my mom. She did her usual savant-like remembering of a million recent things that even I don't remember. Then I said something about how she's not going home anytime soon. She called me back 3 times and asked me what I said about not going home soon. I said, "Why don't you remember what I said??" To which she replied, " I don't know. I'm worried that something's wrong with my memory."

: ((

Poor thing. This is so hard. I dread the thought of my daughters posting on this site when I'm old and compromised. We live too long. It's not fair to anyone.
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Xinabess, the ray of light in your situation is that your mother has capacity, and she is in a formal care setting. Those two things together mean that the issue of when she is discharged and where to are NOT your decision. You are not keeping her locked up, this is not up to you.

For the next week at least, don't cross the bridge. Come discharge day, if the clinical advice is to defer again, repeat as often as necessary that it is *great* that she is making progress in rehab and vital that she doesn't give up on it. That gives you more time in hand.

With that time, you devolve to her care team all responsibility for discussing with her how she is going to cope at home. Again: not your decision. They have to do the explaining and the planning, not you.

Now, it seems probable that the "I'm fine to go home, this is all rubbish, what are you talking about" arguing is all talk. What happens when she makes the attempts to get out of her wheelchair and can't? Have you tried saying nothing and waiting for her to comment? You could prompt her with "so what happens now?"

She would be entitled to rant and rave about being disabled by the stroke. She must be angry about it, who wouldn't be? I wonder if this is her method of ranting and raving. Ask her what her plan for managing is. Don't argue, if she says she can manage. Just say she'll need to show the discharge team that it's so, and let her come to her own conclusions.

Not your decision, remember. It's a clinical decision about rehab, and it's for her to make a practical plan with her advisers when the time comes for her to be discharged. And when she's thrashed out one that everyone agrees will work, you'll back her up.
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I agree about the evaluation. Mental decline may not just be about memory. Often it's poor judgment or delusions. My cousin was completely convinced that she could stay alone in her home with neighbors checking on her. But, in reality, she was not able to to cook, bathe, take medications, operate a tv remote, pay bills, or even know what day it was. There was no convincing her. Thankfully, the doctor was able to convince her she needed therapy, so REHAB, which is what we called Assisted Living is where she went to live.
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Okay, if she's not been a total narcissist your whole life, then i dont recommend the hardball approach. I could never do that to my mom either. You only use that when the person is trying to manipulate you.

It really does sound like the stroke has affected mom's ability to reason. So, in part, a little therapeutic fibbing ( the doctors need you to stay here until you're stronger approch) might buy you some time. Have the psych eval. Is she on antidepressants? Where my mom did rehab, they started her on them right away, so by the time she she was transferred from acute to subacute, they'd already started to kick in.

This is not an easy road. Overnight, you've become the adult who is driving the bus. It's a sudden reversal of roles that takes some getting used to.
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So, talk to the social worker at the rehab facility about a psych evaluation.

My mother's vascular dementia, post stroke, did not reveal itself for several weeks. It was only when she started telling us that staff was demanding money, that the aide was having sex in her bathroom and that she was being required to manage her meds alone ( she said this to me with the RN who had just given her afternoon meds sitting right there). When i asked what she meant, she pointed at her water pitcher and gave me a "significant" look.

My mother also knows eveyone and follows the news avidly. Delusions come in many forms. Talk to the SW.
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Denial has always been her coping mechanism. Maybe she does have a form of dementia, I don't know. It's very confusing because she's 100 percent on the ball--remembers every nurse and aide's name and where they live, come from, knows what my kids did yesterday and are planning tomorrow, etc. But she simply cannot absorb or accept the state of her health and her inability to take care of herself. It's extremely disturbing. I tell her "OK, get up and go home, then. I'm not stopping you. Go on, the elevator's right there." And then she tries to get our of the chair but can't, but she still refuses to admit she's disabled. All the professionals there explain the realities to her, but she's insists none of it is true.

I don't think I can bring myself to walk away and threaten her! That would be too cruel. But it is going to be a long tough road if I'm going to have to keep her "locked up" as she puts it.
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You say she doesn't have dementia. Well.

Dementia comes in many flavors. What is common the many of the dementias is the inability to reason. It sounds like that's where mom is right now. Oh, she'll pass a mini mental status exam, but she clearly no longer understands the reality of her situation. It's very sad.

There are a couple of ways to handle this. One is to let the rehab docs,, therapist and social worker tell her that they are not legally allowed to discharge her into an environment that is demonstably unsafe. You can empathize with her and be on her side, but your hands are tied because of all the regulations.

Another is to play hardball. If she's been unreasonable all her life ( which might mean she's got a personality disorder) tell her you are walking away and will let the state take guardianship. She'll end up wherever there is a bed. Or, she can cooperate with you and help pick the place she's going to live.

I'm sure others will have more creative ideas.
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I'm confused that you say she is fully grounded in reality, but she insists on going home alone when she needs two people in order to transfer. That sounds to me like she is not dealing with reality. Has she had a mental evaluation?

Do you know how she was operating in her home before the stroke? She may not realize what she can and can't do due to the stroke, if she is only able to transfer with the help of two people. I think I'd try to explain that the doctor has ordered this and if she ignores it, I'd try to figure out why.

I would think that there would be an assessment of her needs before she is released from rehab, to ensure that she can function at home or wherever she plans to go. If there is no one at her home to assist her, then she can't go home.

I'm sure you'll get some more responses with some suggestions. I hope some of them help.
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