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Topic Struggling with apathy, inertia, etc. Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2017.10.12 15:02
I don't know what caregivers do when their loved one just wants to sit all the time. What do you do? I can get my husband to eat, in his recliner thanks to this amazing swivel/adjustable table I bought him, but getting him to do anything else at all is becoming harder and harder. If I bring him his guitar, he will strum once or twice and then let the guitar fall from his lap onto the floor-so sad as this is a lovely instrument and he played so beautifully. I recently had it restrung and tuned, in a special way so it would be easier for him to play, but he simply isn't interested. Or maybe the cognitive issues make it too hard?

I am having to physically not only help him get from one place to another, but tell him what body part to move and put where, and many times he does not seem able to understand that. I frequently have to tell him how to walk, "get off your toes....take one big step...take another big step with your other foot...." and very slowly as he can only process one step in the instructions at a time.

This is so heartbreaking to watch. And I can't keep this up as I have hurt my back and shoulder. I hired help for a few hours a day one day a week to take my husband out of the house to a Parkinson's exercise class (and boy does he fight going, tells me he can't, he's too tired, it won't do any good, hasn't done any good, etc.), but I make him go. As soon as they get back, my husband collapses into his lift chair and falls asleep for hours. I hate to wake him so I let him sleep.

We recently had a doctor appointment and the neuro tested my husband's strength. He said my husband has the strength to be able to do a lot of things, and many on his own...but he won't. Is it the cognitive issues that keep him from doing things, which I would totally understand, but then what do I do about that?

Does anyone have any suggestions for dealing with this? I try suggesting all kinds of things to do but he simply doesn't want to do anything, not even sit outside in our beautiful yard (and I would wheel him out there-he wouldn't even have to walk!)

Thanks for any input, lfac

By makrivah On 2017.10.12 23:08
I am interested in the replies. My husband is also apathetic and inactive.

By VioletV On 2017.10.13 13:33
In my case, this is what I learned about apathy after several discussions with my pwp husband.

In my experience, the reality of apathy is that he really is content not doing things. It is so challenging to him, mentally and physically, to try things, and so discouraging to recognize how little he can do of things where he was once expert, that it is really ok with him to sit quietly, listen to music, doze, eat when it's time, and just "chill." Now, my interest is to have him doing something and not just sitting. But I have come to realize that that's for me, not for him.

A couple of examples of how I learned this:
One.
For the past 3 to 4 months, while he was still at home, I was able to get him to sit with me at the piano. I put a very simple book of easy piano pieces in front of a man who played as a skilled amateur classical pianist. With some difficulty he played the top line of the right hand music while I played the alto line. One finger. One note. with lots of mistakes (I can read music, but don't really play.) He enjoyed doing it because we were doing something at the same level of skill-his really really diminished, me struggling to remember the sharps and flats. But he told me that pleasure was in doing something together -- not in the playing.

Two.
Three weeks ago, at his new assisted living, there was a sailing outing--to be a passenger on a small boat, not dissimilar from the boats he sailed from age 12 to age 75 or so. We went, we rode. It was VERY hard for him to get into the boat, and he was fairly anxious about it. He was physically uncomfortable the whole time, and disconcerted to recognize how incapacitated he has become. It wasn't fun, and he asked that we go back to the dock after about 20 minutes. He told me he does not want to do that again. I won't ask him to.

The reality of the apathy is not just the not-doing, but the not-wanting-to-do. Boring. Sad. But it is me that is troubled by it. Not him.

Also, motivation is not there. So rather than asking him to want to do something. I would just say "I'm going to wheel you outside, because I'd like to have you there while I garden." and then just do it. Problem is in this situation I am not getting a break, he is not entertaining himself without me.

So, unless the thing is good for him (getting out of the house, exercise, seeing the doctor, eating) or good for me (his going to group to give me a break), I would tend not to press him to do something.

My .02.

VV

By lurkingforacure On 2017.10.13 16:04
Thank you Violet, that makes a lot of sense. I guess in a way that by not doing things, our loved one is protecting themselves from seeing how much the PD has progressed. I get that.

Just today I "made" my husband go to his PD exercise class. It is not just for exercise, but for socialization, something he needs very much (or does he? maybe I am thinking he does but he really doesn't...). It also gives some structure to his day, as he will have to shower (he would go looking and smelling like a hobo), get dressed into clean presentable clothes with socks and shoes, etc. After I got kids to school, I ran home and got my husband ready, and took him to class. I ran a short errand and then returned early so that I would be there when class finished.

I watched, in shock, as my husband sat in his chair and was unable to follow the simple arm movements demonstrated by the instructor and being following by everyone else. He simply could not do it. They weren't even using weights for these arm movements.

To make matters worse, another PWP in the class came up to me after class was over and whispered that the 5 pound weight my husband had me select for him was way too much, and that next time I needed to get him a lighter one, because he "was really struggling with it." I felt horrible.

I am really questioning whether I should make him go to exercise class. Why make him go do something he doesn't want to? When everyone around him is better at it, and he sees that and it probably is making him anxious and sad?

It's not a break for me to have him go on Fridays, either. I have to rearrange all my work so that I can take the day to get him dressed and there on time, and then he wants lunch somewhere special afterwards (which is fine, he deserves it!), and then it's back home for him and as soon as I get him settled it's time for school carpool. The whole day is devoted to getting him to this exercise class and back and I'm wondering if I should just let it go and stop trying to make him do things that are "good" for him.

I really appreciate your post, Violet. It helps me see things from my husband's perspective.

By VioletV On 2017.10.13 23:15
https://www.ncbi.nlm.nih.gov/pubmed/25895932

What I have learned is that the apathy comes from changes in "the frontal subcortical systems such as the anterior cingulate-mesial frontal cortex that are thought to be involved in apathy". The person himself/herself is not troubled by the apathy since the part of the brain that generates feelings of interest and motivation are numbed. So they can't find interest.
And here is a posting about apathy that I made from about a year ago.

These researchers say that this makes it important to distinguish depression from Parkinson's apathy. And anti-depressants won't really help.

The authors also say: "Patients themselves generally do not complain of apathy because, by definition, they do not care and are comfortable not engaging in many activities," she wrote. "It is likely that the patients themselves may not have strong feelings about whether or not a medication is indicated to motivate them."

All of which does not count for a hill of beans when it comes to being the other half of a Parkinson's couple. But since our partners don't care, because they can't care, I think we have to treat this as a symptom that is not changeable with current medications or interventions (to my knowledge). I have made my own peace with doing things on my own -- simple ones like going for a walk, bigger ones like visiting friends and even occasional long ones like taking a 4 day mini-vacation. Our marriage as a marriage is just gone. And I hate that.

By Daisy On 2017.10.14 06:54
Dear Lurking,

I haven't posted in a long while due to a computer glitch but have been reading all the posts. This one in particular caught my eye.

Last year, like you I was getting particularly worried about DH's lack of activity and got myself into such a state that I had convinced myself I wasn't doing enough to help him socialise with others and work his brain and that was all contributing to his mental decline. So I sought out a parkinsons choir. Bingo!! he would be able to sing, which he loved and mix with other people and their carers and being OFF wouldn't be a problem.

Not so, after a month we stopped going, he couldn't sing, couldn't read the words, couldn't talk or make conversation, couldn't do any of the voice exercises and each week we went, I both became more and more disillusioned. He didn't seem to notice that he wasn't actively involved but I was shocked that even much older and more physcially infirm PWP were able to follow the instructions.
Btw, Dh used to front a band.

It brought into focus for me just how different people are affected, as prior to that we would not have a lot of direct contact with PWP as we do not attend any support groups.

I wondered is it apathy or is it that the ability to do things has gone. Of is it a combination of both?

Hugs to all

By Daisy On 2017.10.14 07:19
Dear Violet,

Very interesting article.

Have you found whether there is any correlation on whether people with Dementia in PD are more affected by apathy that those with PD alone. Maybe some of our members who have PD could let us know how they are affected?

Regards,

Daisy

By lurkingforacure On 2017.10.17 19:47
I'll add that as much as my husband just wants to sit all day, it seems like his mind is not at all "sitting". Rather, he concocts these elaborate and intricate fantasies that he wants to discuss with me ad nauseum. It can be pretty stressful for him as he worries and gets anxious. The other day I was wiping up some ketchup he spilled, and he became visibly upset and told me I could not clean it up, because "it contains vital and confidential information and we don't have a backup."

Today as soon as we got home from after school activities, he told me I needed to "stop all those transactions that are going through on that credit card". Which credit card? Which transactions? He names a bank we aren't customers of, and can't tell me which transactions. I get frustrated but then realize it's better for everyone to just go with it, so I tell him there aren't any transactions we need to worry about. He insists we need to cancel "that credit card" and wants to call the bank right away (they're closed). Sigh.

So, as much as he is physically very inactive, mentally I think there is a lot going on in his mind....but it's delusional/hallucination. It's so strange, how he wants to just sit around, but I know his mind is going a mile a minute (in his reality) because of the things he says. Has anyone else noticed this in their loved one?


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