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Small rant here. I get frustrated with my LO. Every visit is pleasant, but it invariably turns into the "I'm getting out of here," conversation. She has been bedfast for 11 months, has resisted therapies when she had them, insists that she can walk and take care of herself, and wants the staff to leave her alone. I tell her they are helping her, and she believes she doesn't need help. How do we get her to understand that she needs to be there? Why does she tell us she can walk and get around when everyone else knows that is not happening?


I appreciate the feisty spirit that helps her get through, but I want to walk away every time she turns the conversation to leaving (FYI: she lived with us for 3 months before a couple of medical events made it so that we could not care for her on our own.) Thanks for your advice and encouragement!

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You don't mention any Dementia in your profile. If there is some, then this is your problem. You can't reason with a Dementia mind. They have no idea of their limitations. They don't see themselves as old.

If she is "with it" then be honest. You will never be able to leave until you show you can do things on your own. You have to do the work.
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CaringinVA Nov 2022
I do think there is some dementia at play here. I see it manifesting a bit when we have conversations. She is talking about getting a dog and traveling with family, things not congruent with her current condition. Thank you for the reminder, JoAnn.
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You do not mention dementia but you do mention Stroke.
It is very possible that the portion of her brain that was/is effected by the stroke is the portion that is causing her to not "connect" her "reality" with fact.
Don't argue with her. Not gonna do any good other than leave her, you, your husband and BIL frustrated and angry.
When she starts talking about leaving or walking or anything else that is not going to be possible tell her that it is up to the doctors to determine what is next.
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CaringinVA Nov 2022
Thank you Grandma1954. We may have to incorporate that reply into our conversations. Although, she is a retired nurse, and she may have some things to say about the doctors having a say in the next course of action for her! :)
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This appears to be typical dementia behavior. She has little idea of her present situation. She wants to go "home," and that's what dementia patients say in a variety of ways. She tells you she can walk and get around because she's confabulating, i.e., making things up because her brain can't realize the truth, or the truth doesn't fit with her imagined reality, or she knows she should say something and comes up with anything that will fit into the situation. My mother was carrying on a perfectly normal Thanksgiving table conversation about pets when she said that her cat had kittens in the washing machine, and the Chinese people had put them there. The cat had kittens in our washing machine when I was a child, and I'd hosted Chinese people in my home as an adult about 35 years later, and somehow she pieced the things together as pet conversation. Be prepared for your mom to keep doing this sort of thing; realize she is no longer rational or able to comprehend her life now. Try cutting the visits shorter and leaving before she gets to wanting to go home. You can't fix this, and fortunately she's in a place where they can take care of her.
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CaringinVA Nov 2022
thank you, Fawnby! And that is a wild pet conversation, for sure lol. It's funny because she never says "home", just "out of here". She knows that she can't live at her house and that she would need to live with us or with my BIL. And the visits won't be shorter, unfortunately, because we come from 2 hours away. Its just sad to witness.
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I'm dealing with something similar with my mom. She fell and broke her hip, had surgery and was admitted to a SNF two months ago. She does PT, OT, all the T's but they called yesterday and said she "plateaued". She is also basically bed bound, and needs help for everything. She is not walking and can use a wheelchair but must be lifted into the chair or bed. Keep in mind that two weeks ago she collapsed and had to the go to the hospital for a couple of days (still no real answer as to why that happened). She was returned to the SNF to continue "rehab". So when they called yesterday to let us know she had "plateaued" that means that they have to move her on because they can't bill for her any more. She feels like she's making progress, albeit little bits, while they disagree. Now we have six days to find and fund an assisted living stay when what she really needs is to continue with skilled nursing and rehab. But whatever the notes on the SNF's records say is law. I feel like they're trying to wash their hands of her and she's only been there two months.
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CaringinVA Nov 2022
I'm so sorry that you are having to deal with this and such a short time to make a decision. I agree that she definitely needs skilled nursing & rehab. Hope that you find the next steps that will help her.
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CaringinVA,

This is truly typical dementia behavior and there is very little that you can do in terms of efforts to promote her realization of the facts, her brain is broken. Just listen and when this talk starts up, redirect her attention to something in the room, change topics, refocus her attention on anything other than what she thinks she can, but realistically cannot do.

She's safely ensconced in a SNF and will eventually phase through this aspect of her dementia. No point in correcting or trying to get her to realize what her brain is unable to process. It's difficult, but you'll learn what works to redirect her and hopefully, be able to enjoy your visits without having to cut them short.

If she's enjoyed magazines, reading or any other sedentary activity, provide her with materials to read. Do what you can to enrich her now very limited life.

There are many in this forum who are very familiar with dementia and by searching around and reading posts, you can learn a lot to help you cope. best to you.
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CaringinVA Nov 2022
Thank you Luta65 for the helpful suggestions, much appreciated.
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What would happen if you said “great! Now all you have to do is prove it to the doctors so let’s walk to the family room and have dinner”. Don’t argue it with her let her know that if she is able to walk around and care for herself here with the staff there for safety they will soon graduate her to walking around on her own and caring for her hygiene without help and then the doctors will be fine with her leaving. But until she is independent they aren’t going to feel she’s safe enough anywhere else. You all love her and want her safe so your listening to the doctors.

Now if you think she would then try to do these things and injure herself then maybe tweak what you say but still let her try to do these things on her own, if she will so she can see for herself that she has new limitations. It doesn’t mean she will admit them to you but she might stop talking about leaving so much.
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CaringinVA Nov 2022
Thank you Lymie61. I will keep that in mind.
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OP I’m a bit surprised by your reply to Shindler that you ‘agree that she definitely needs skilled nursing & rehab’. If she has had rehab for two months and has plateaued, aren’t they justified in saying that it can’t be funded longer?

I posted a couple of days ago about exercises you can do in bed to increase muscle strength, under the label ‘Exercises for the Sluggish’. It’s interesting to me that the only replies have been from carers saying they don’t exercise any more. We are keener on our LOs exercising than we are ourselves!
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CaringinVA Nov 2022
Hi MargaretMcken. I was stating that my LO needs to be in a SNF facility, which she has been for almost a year.
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Well when physical therapist sees you walking without help…you can use that encouragement to her
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Don’t participate in merry-go-round conversations, those that go over and over the same topics yet go nowhere. It’s frustrating for all and accomplishes nothing. Smile and nod when she brings it up, then change the subject to something else. If she won’t move on to another topic end the visit.
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CaringinVA Nov 2022
Yeah, I try to opt out of those conversations. However, since she isn't my mom, I try to give room for my hubby to handle those convos in the way that works for him and for her. We have an understanding that I am free to slide out of the room for fresh air and a reset if things get to be a bit much.
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Caring, I know you won't cut the visits short because you travel a long ways to see her.

So, is it possible to get her in the wheelchair and do things within the facility?

My granny could no longer walk but, we would take her for "walks" in the gardens and down hallways, then share a coke, more walking, just pointing out pretty pictures, lovely flowers, whatever kept her in the moment. We would play catch with a plush stuffed animal, which would have us all in stitches, including granny.

If she starts the conversation you could excuse yourself and go take a break and let things reset. Bring a special treat and leave it in the car for this very time.

My dad would talk about doing things that he was never gonna be able to do again, I think it gave him hope and helped him not be discouraged. I learned to just make noises of agreement, you know, mmhhmm, oh okay, that's cool, I hear ya, things like that.

You know that she isn't going to wake up tomorrow able to walk around but, she may need to keep that hope, just to wake up tomorrow.

Best of luck learning to roll with the punches that our elderly parents provide.
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CaringinVA Nov 2022
Thanks so much for the thoughtful suggestions, Isthisrealyreal! I like the one for the special treat for myself when I step out to reset. She is not really interested in taking a wheelchair ride (understandably so, since it would take at least 2 people to help her in and out of the bed) or doing anything at the facility. She also doesn't want photos put up. She is just laser focused on getting out of there. Its hard. Thanks for your encouraging words!
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I am dealing with that problem now. My wife wants to do all these things. Take a shower use the bathroom etc. The only problem is she can not walk or stand. I will help her for what ever she wants but I know her limitations but I let her find out on her own anyway. One problem is she is becoming weaker in her core and even sitting up for more than an hour can be a challenge. Just getting her to the doctor will wipe her out for a day or two. I give her encouragement to keep her positive but I know the reality
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This journey is not a fun or easy one. Hugs.

Had a similar situation w/my mom who had a host of medical issues and after a two-week hospital stay, was sent to "rehab" for IV antibiotics, antifungals, PT and OT. Similar in that she "plateaued" about 2 months into her rehab stay. But the infections thankfully cleared and that then gave them the opportunity to do the dementia work up (the docs wanted to make sure there were no latent infection issues and/or issues with the antibiotics/anti-fungals that might have contributed to her decline in cognition. And as I expected, the full blow dementia diagnosis came back.

She was permanently moved to the long term care nursing unit at the same facility and has been there now 2 years. To this day, she cannot understand her condition and there is a term for that "anosognosia" more on this here: https://www.agingcare.com/articles/anosognosia-dementia-patients-cant-recognize-impairment-210090.htm

It may be an aspect of what you are dealing with. Perhaps a full dementia work up would be in order? But as others have said, trying to convince someone whose brain may be unable to process things to actually understand, there is not much one can do. Redirection helps, keeping visits short helps, having a plan for the meetings (like take an ipad w/pictures of grandkids, dogs, flowers, pretty pictures to keep them visually occupied, distracted or focused on the pictures), have an exit strategy for each visit.

Till this day, my mom says "they do nothing for her" at the nursing home and that "she takes care of herself" and "should be able to leave." Of course the reality is that she can barely walk and they have to help her dress and she is showered in a shower room. And all other things: meal prep., cleaning, laundry is all done for her. Even opening a can of soda requires an aide to help and food has to be cut up, but she can still manage to feed herself. In her mind, she does it all. I suspect that is part of the coping process or "confabulation" as others have called it. In her mind's eye she is 60, healthy and can walk miles. Good for her.

She used to love to go to casinos, not an option now. But a cousin bought her a small tablet with a slot machine app (just push a button and it spins just like a slot machine). We programed it so this is the only thing it does to not confuse her. And if the three spinning things line up as a winner, it rings and lights up just like in the casino slot machine. Mom will push the button on the "slot machine" over and over for hours. She LOVES it and probably thinks she is winning millions at the casino.

A friend with a mother in a similar situation, loads her ipad with a 10 or 15 min (shorter is better) "TOUR" of some place interesting and they "go on trips together." Her mother used to travel the world. She and her mom watch the video of some fab place and mom thinks they went there. It makes her happy, but none of it is real of course.

The letting go of our reality and just accepting theirs is hard. But our brains can still handle processing our reality as well as theirs to know which is real and which is perhaps more fantasy. Their brains sadly are stuck only being able to process their reality at this point in their life no matter how jumbled up it may be.

Good luck with this. And do what you and your husband can for self-care. Take time outs or time off, maybe not visit as often if that helps keep your strength up.
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CaringinVA Dec 2022
So helpful! thank you for sharing.
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You do not argue.
I've heard this 'I want to get out of here... I want to go home' more times than space here allows.
WHAT I DO:
1. I acknowledge what friend (Jer) says "Great. You can walk!" (he can't).
2. Now we'll need to get an MD to document your physical (or other word) condition before you can leave. THIS IS the next step".

This ends the conversation. Or. well...
I also tell him (depends on specifics of your LO... loved one ?
1. You've had a stroke (he had two). It takes a long time to recover from a stroke.
2. You need to be patient with yourself.
3. Keeping yourself calm will support you to heal.

I feel the important aspect of these conversations / dialogue:
1. Understand the person is overwhelmed / anxious / fearful - try to address the underlying issues / feelings.
2. DO ACKNOWLEDGE what they say - they want and need to be heard. This is important.
3. Stay in the moment as much as possible. Or bring back the interaction to 'in the moment' as a distraction.
4. I also reinforce to my friend (of 20+ years) that "I am here for you; we are going through this together and I won't let you down." This may not work for you at this time ... the goal / intention is to confirm that YOU ARE NOT ALONE. I am here for you."

Gena
Touch Matters
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CaringinVA Jan 2023
Thank you Gena for your insights.
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Go ahead, walk away.............the episode will repeat itself over and over; if you stay, then you're volunteering your time.
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CaringinVA: As your mother in law suffered a stroke, she may lack the capacity to comprehend what appears to be her new reality. The fact that she has been bed bound for almost a year may make it especially difficult for her to get moving as her muscles may have no doubt atrophied, e.g. "getting out of here" doesn't exist.
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Just nod and smile, you're not going to convince her of anything, so stop trying.
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Say, "Perhaps this is not a good time for us to visit.", then sign out and leave to return another time. However, no mention of dementia or other mental condition in your profile. With dementia, no reasoning is possible, so please do not argue with that disease.

I had my late mom's mental and physical ill problems, so my family hired an ombusdman for assistance.

Never was guilty for one second.
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You can validate her emotions without validating that she is going home. For example:

I get what you're saying, I'd want to go home too.
It makes sense that you're feeling like going home.
I can see it makes you happy when you think of going home.
I remember that you were always such a good cook/decorator/whatever at home.
I can see how much you really want to go home.
We all wish you could go home.
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CaringinVA Dec 2022
Thank you for this!
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My Mother did the 'out of here' talk too. Was *venting* not *planning*.

Knows what she wants. Not always if that is possible, how to process the information, prepare, plan etc.

Stroke = brain changes.

I do as others have said;
Hear the emotion.
Be empathetic.
Agree it would be nice to "whatever is top thought of the day."
Link onto something positive &/or specific eg how is your sitting, speech, walking coming along?

*You cannot reason with unreasonable people*.

I always took that to mean unruly, bossy, bombastic types of people - but now I also think of people (through no fault of their own) have lost some reasoning power. Eg those with brain injuries - stroke survivors, ABI, MCI, dementia.
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CaringinVA Jan 2023
Very helpful perspective, Beatty. Thank you so much.
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