What to say when my mom won't talk about anything but going home?
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.
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.
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.
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.
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.
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.
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.
: ((
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.
As someone wisely pointed out previously, the more you emphasize it, the more she's going to fight you.
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..."
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.
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!
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.
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.
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.