For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in

Topic "I don't want to" Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2015.11.19 14:03
We have gotten a referral for the "Big" physical therapy and today as I am talking to the therapist on the phone to set it up, my husband is frantically gesturing and scribbling on a piece of paper. I get off the phone, and he informs me that he doesn't want to do the therapy. And, he declares, there are other things he can do that he thinks will be more beneficial (he doesn't say what those are, and he's not a doctor, by the way). And then the final blow: that he isn't going to do it.

So now I am angry. He won't do the PT his neurologist is recommending. He won't do any of the Tai Chi DVDs I bought (years ago-he has never done one of them. Ever.) I print out articles explaining how great Tai Chi is for PD, and even read them to him. But he never does them. He tells me he will do them if I do them with him.

Problem, though: that is simply one more thing for me to do, and I just can't. In between running our household (did I mention he never so much as empties a wastebasket or brings in the mail, much less sort through it), feeding our kids, taking them to activities, helping with homework, mountains of laundry and dishes and dirt, maybe I get to shower maybe I don't, paying all the bills and on and on, I simply do not have time, or energy, to do anything else. Did I mention that I also work? It's ridiculous. I can't believe I haven't had a stroke yet.

It is very hard to be compassionate about his PD when he refuses to do what he has been told will help him. To make matters worse, by telling me that he will do Tai Chi if I do it with him, he is making his failure to do it my fault, and that is not fair. I am so frustrated I don't know what to do. When he falls again, it is going to be very hard for me to keep my mouth shut and refrain from saying something like "Tai Chi may have prevented that" or "That Big Therapy may have helped keep that from happening".

I know I can't make him go to the therapy, and I don't want to be a tattletale and run to his doctor to let him know he is refusing to do the therapy. But honestly, it is very hard to handle everything when your PWP refuses to do one of the few things that might actually help him. Oh, and I am supposed to pack up the entire family and drive us all several hundred miles for a Thanksgiving reunion next week. I would love to just stay home by myself and get some peace and quiet and catch up on my work.

So crap, what can you do but vent. Thanks for letting me.

By VioletV On 2015.11.19 15:45
Oh lurking, Wow.

This situation is untenable. Your PWP may be suffering from the apathy that is associated with PD, maybe not.But he is clearly behaving in ways that are just plain unloving to you and your children.

In my work in social services we often talk about tough love and natural consequences. That doesn't mean withholding compassion, but it does mean letting the consequences that follow on a person's actions to occur. And pointing them out, compassionately, but realistically can be part of it. For example "Yes. You've fallen. I know that the BIG exercises and Tai Chi help with balance. I wonder if you'd like to do things that might keep these falls from happening."
As in "no. I do not have time to do Tai Chi with you. But I will take our kids to xxx to make sure YOU have time to do it."

Matter of fact, not blaming, but not coddling either.


By exhausted wife On 2015.11.19 20:37

By sesrohseinop On 2015.11.19 21:56
Wow lurking, I feel for you. I am sure most of us have simular problems. I know that won't make you feel any better. I used to tell my good friend that I don't have a husband, I have a boarder who doesn't feel he is responsible for anything. My friend reminded me that if he was no longer around that I would still be responsible for everything. So what ever I can't do myself I ask for help from others or hire someone.

By carman96 On 2015.11.19 23:01
Sorry, it must be really hard to have kids at home, work, and deal with all the crap that goes with Parkinson's.
I'm not sure if I would stay in
your situation. You can't make someone do something they don't want to do.
But I have stayed with my husband because I do love him and he needs 24/7 supervision. It's very exhausting. It's up to me to do everything. Any activity has to be initiated by me.
Hope things get better for you.

By VioletV On 2015.11.20 10:53
I had another thought about your situation (as I was awake in the middle of the night...long familiar story).

You might do well to get your Power of Attorney documents established now. If he falls and has a head injury so that he is no longer competent you will need to be able to access funds. You might even give him a dose of reality by explaining that since he does fall you need to have this in place to protect your children and your home (and you too). I know that I got all of those documents in place just in time.

Maybe this isn't a good idea, but it's what came to my midnight mind.


By lurkingforacure On 2015.11.21 13:02
Thanks everyone for your advice, and support. It helps so much just knowing others understand.

I think at the heart of our situation is that my husband has never really accepted his diagnosis or, perhaps, the point to which it has progressed. I try to understand how hard it must be to have been in control of everything in your life before PD, and now you can't even control your own arm. That sucks, and I try to keep that in mind always.

But as I was listening to him tell me that he was not going to do this therapy that might help him (and can't hurt him), I was taken back to many years ago to when I bought him that first PD DVD. He simply wouldn't watch it, so after several weeks of nagging, I put it in the player and had him sit down with me. He watched it all of two minutes, then abruptly stood up and said "I'm never going to be like that" and left the room. I think we're still stuck in that emotional place, and am not sure how to get out of it. When he told me he wasn't going to do the therapy, he sounded just like he did all those years ago when he told me he was "never going to be like that". It was a like deja vu: same situation, just different words. (and selfishly, I have to admit I felt like he had thrown cold water in my face, as my efforts to help him are summarily rejected without so much as a "thank you, but....")

The harder he tries to pretend PD isn't there, the more impossible that becomes as the symptoms relentlessly progress. It's a wicked and cruel place and I don't know how to help him.

We are now sulking and pouting around the house and everyone in our family is miserable. I don't know which is worse-keeping my mouth shut and letting him choose to continue to decline by ignoring a therapy that would most likely help him, or keep asking him to do it. His doctor noted a marked decline at our last visit, so I am scared and feel a sense of urgency for him to keep the function that he has as long as he can. And if his doctor says that doing this Big therapy will help, then we really need to do it, period.

Having said that, I'm open to being wrong:) Has anyone here done the Big therapy and it did NOT help? There is no sense in my nagging him to do this therapy if it isn't likely to benefit him. Thank you all.

By LOHENGR1N On 2015.11.21 13:51
Lurking, you can't make him do it. He has to want to do them. As for the big, I myself haven't done that. However we had a speaker at our support group who has conducted these. She said they have found out that it usually lasts 3 years. Then the benefits are gone. He has to decide if the effort is worth the results to him personally. I know this sounds callous, becausethe whole family is effected but he doesn't see this and to point out articles and DVD's don't help, you see them as if he does them he'll be better and he sees it as she has no idea what it takes just to get through the day without this added us less stuff just to please her. (I could be wrong but I think it is pretty close to the situation). All this said there might be hope. I haven't read the article but on the fox foundations home page there is a article about a study stating that more movement during the day in our activities of just living may be of more benefit than strenuous exercises. There might be something you can "sneak" in during the day without notifying him? If you show him the article he's likely to dismiss it. Hope this helps weaken the wall and he gets a bit more active. This disease sucks figuratively and literally, it will suck the life and will out of us. Right now we can't stop it or its progression. But we can fight its draining of our will to live life the best we can and not sit on the sidelines watching life go by. Hope this helps. Take care, best of luck and hang in there

By jcoff012 On 2015.11.21 16:36
Carl has had a great deal of success with BIG. He thoroughly enjoyed it and still does the exercises daily. He also walks, rides a bike, does Tai Chi, and right now is redesigning our fireplace and tearing down the wall bookcases! He keeps busy all the time! He often sleeps sitting up, is in a great dal of pain at night, etc.

I give his neurologist credit for emphasizing staying active. Carl likes the challenge!

I have to say, though, that I do understand your husband's lack of energy. I have a list of things to do for my current health problems, but there are a few that I do not do, and should. It is, for me, a matter of lack of motivation...and, I have to say, I HATE when Carl asks me EVERY morning what my numbers are...even before he says good morning! I feel my hairs on the back of my neck on end...I am NOT "my numbers". I am still, maybe it is the same for PWP?

All I can say is PD for a caregiver is rough, but we are not the ones with the disease, so all we can do is suggest...and, for YOUR sanity, please try to not be disappointed in your husband's handling of his disease. He would listen if his mind would let him...sadly, I think all of us have a hard time understanding the workings of a disease that robs our PWP of normalcy. It leaves us with someone we often do not recognize...but, we love.

Al is right, you cannot make him do anything, and you are tearing yourself apart trying.

By VioletV On 2015.11.21 16:53
I'm going to share our experience with the LSVT Big program, and exercise in general, with some important caveats.

My PWP husband (81y/o, PDx20 years) had the LSVT Big training about 3 years ago, with a couple of refreshers at about 10 month intervals. About the same time we acquired a Theracycle.

Today, while his cognition is clearly failing, his physical strength and balance are quite impressive. His gait is not a PD gait unless he is very tired. He has regained facial expression. His balance is such that he can trip over a dog toy (the bane of our existence) and keep walking. He can even see the dog's bowl out of place (after her meals she moves it into the middle of the dining room in an Oliver-Twist style "may I have some more?" plea). He does this: step -step-step-kick-step-step. In other words, he is able to kick the bowl out of the way and maintain his stride. And before the exercise program we used a gait belt any time he set foot out of the house-because of the fear of falling/lack of balance.

he was, as a young man, a champion runner at University. As an older man (until about 10 years ago) he rode horses, did hunter-jumping, sailed small boats etc. He has enormous discipline and exercises EVERY day. I wake up every morning to the sound of him riding the cycle. He rides the Theracycle 35 minutes at day warming up and then riding 15mph. He does BIG exercises and a simple weight routine every day. He only misses if we are out of town.

What this says to me is that the benefit of BIG was to guide a highly motivated and disciplined person into exercises that in combination have been of great benefit. But from everything I read (and from what our OT tells us) people typically don't continue doing BIG, and the benefit fades.

You can't make him do them, you can't add motivation. Perhaps anti-depressant meds? Perhaps the clarity of not protecting him from consequences that he might be working hard to avoid anyway. BUT. A couple of months ago I saw some articles recently, and posted about them in this forum, that described how PD profoundly reduces a person's ability to think about consequences and to see alternate paths linked to alternate behaviors. PD itself may be stopping him from being able to see (if I do x differently, y will result, and y is better).

If I had my professional hat on, I might encourage you to think about any small -- even very tiny -- thing that goes well. And to say, not with enormous praise, but with matter-of-fact clarity and warmth "Honey, I like it when you helped our son pick up the toy he dropped." Simple identification of simple successes MAY cue him in a way that urging and exhortation does not.

It is just a miserable thing, this PD. And we the caregivers find our selves seeking again and again for some one (or many) thing that will make a real difference.

Just my .02 (longwinded, but still only .02 worth).


By VioletV On 2015.11.21 17:05
And here is a quote from the article on counterfactual reasoning and PD:

"If patients suffer counterfactual impairment they are less likely to be able to handle social conversations fluently, to formulate plans easily, or to compare alternative outcomes imaginatively, and so forth. The inefficiency in “running mental simulations” will have an impact on fundamental social skills, resulting ultimately in less flexibility and greater withdrawal from social interactions.

"The counterfactual impairment may also undermine the ability to self monitor, and thus patients do not realise that their communication skills (their ability to stay on topic, to take appropriate turns in a conversation, to provide enough information in a conversation, and so on) need adjustment. Because these kinds of daily social interaction influence the quality of life for the patient, it will be important for future studies to explore the contribution of the counterfactual deficit to daily social interactions with others.

"Effective coping with a chronic disorder such as Parkinson’s disease requires that the patient be able to build up social networks and contacts, not undermine them."

By umajane On 2015.11.22 00:15
Lurking, I wish I could help you get some rest..I can not even begin to imagine how tired and busy you are... My husband has never been a super motivated person... He did the BIG series for awhile and then got lazy again. I even had his trainer come along and learn the exercises so she could do them with him at home.
I can not make him do them..He is however doing Pilates once a week and seems to enjoy that...maybe it's because the instructor is so much fun and caring.
In his case it is the dementia that's getting him down now.
I am so busy cooking, shopping and trying to leave town for the holidays but he is clueless. He doesn't want to be this way it's this rotten disease. It is so sad for all of us.

© · Published by jAess Media · Privacy Policy & Terms of Use
Sponsorship Assistance for this website and Forum has been provided by
by people like you