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CaringinVA Asked November 2022

The disconnect between what she wants to do and what she can actually do. Any advice?

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!

Isthisrealyreal Nov 2022
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.
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!
Daughterof1930 Nov 2022
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.
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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CaregiverL Nov 2022
Well when physical therapist sees you walking without help…you can use that encouragement to her

Fawnby Nov 2022
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.
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.
Sample Nov 2022
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

Sohenc Nov 2022
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.
CaringinVA Dec 2022
So helpful! thank you for sharing.
ZippyZee Nov 2022
Just nod and smile, you're not going to convince her of anything, so stop trying.

TouchMatters Nov 2022
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
CaringinVA Jan 2023
Thank you Gena for your insights.
ConnieCaretaker Nov 2022
Go ahead, walk away.............the episode will repeat itself over and over; if you stay, then you're volunteering your time.

Sataari Nov 2022
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.
CaringinVA Dec 2022
Thank you for this!
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