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!
19 Answers
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First
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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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.
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
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.