Caregiving

This isn’t a rant or poor me.

What I deal with as care giver is, like everyone, juggling care, personal wellbeing, household chores, and extended family obligations. My husband is 84, I’m 81.

One of the few activities I try to do daily is muscle massage for my husband. He did the “big” at the “Big and Loud” program which taught me a lot about the effects of Parkinson’s. The muscle massage is just an extension. It seems to help his mobility.

Even though we have, fortunately, 2 hours a week of cleaning help, I feel like my husband takes a back seat to all the busy stuff, like grocery shopping, laundry, house repairs and maintenance, correspondence…..it goes on and on.

A few days a week, before getting my husband up, I either walk or go to the Y to spin (on a bike), weekly band practice, and an occasional bridge game.

This is the problem: any time when either I or a visitor isn’t directly interacting with him, he sleeps. I’m at a loss as to finding something that will engage him. He even goes to sleep watching golf or baseball. He had been an active golfer, gardener, woodworker, reader none of which he can do as the results of the big P. He can’t focus long enough for books on tape or movies. Needless to say, he is takes a low dose antidepressant. ANY SUGGESTIONS?!

This web site is helpful as is the local support group…..he won’t go but I find it inspiring to see people actually making the best in spite of Parkinson’s.

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Comments

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  • Dylpup
    3 months ago

    I think you’re doing a great job and the suggestions in the previous post are very helpful. I have one suggestion from an episode of noticeable lethargy that my husband experienced. Turned out he decided not to take his Requip ER (extended release)–felt it wasn’t doing anything. The PD specialist told him to get back on it and within a few weeks he was back to his old self. I’ve only heard of using Requip this way once at a PD conference.
    The odd part is that the first PD med he ever took was Requip (not ER) and it put him to sleep. He was working at the time and couldn’t stay awake. So now the med is keeping him energized–how does that figure? A potential downside is impulsive/compulsive behavior and it does make him impulsive, but it’s better than camping out on the sofa.
    My PD experience has been a little different. We are both 71. He’s been diagnosed with PD for 14 years. He’s been lucky over those years: the meds work well for him and his PD has progressed slowly in spite of his doing little to manage it.
    In the last year or so things have changed. His gait has deteriorated, doesn’t stand upright, has poor balance, speech is slurred, communication with me and friends is lessening, has difficulty with dual tasking, and beginning to talk about being fatigued. He’s spending more of his day watching TV.
    I’m a physical therapist and attend PD trainings and do a fair amount of reading. I can see that his lack of disease management is catching up with him and that he needs to do the things he should have been doing all these years. Or it could be that the disease is worsening. Either way it needs to be addressed.
    He’s always been active around the house (fix it kind of guy), but he’s never been interested in fitness activities. The one physical activity he enjoys is skiing. I think those days are finally over but he doesn’t agree. Exercise is just not in his DNA. I’ve made exercise programs and schedules and he’s gone to specialized PD exercise programs but nothing sticks. He used to attend boxing but he said it was monotonous. There are other lifestyle issues that he needs to address but I’ll leave this message to exercise.
    I feel like I am watching him deteriorate which is moving me toward being a caregiver sooner than necessary. I’m angry.
    I feel I can be a caregiver but he needs to do his part to be proactive with his disease. My empathy tank is running low lately. I’m also not prepared for the changes in his personality over the last year.
    I’ve attended a great caregiver class called Caregiver Stress-Busting. It covers all the self care tips you’re already doing. I need to go back and review the materials. Thanks for the chance to put my situation in writing. It helps.

  • angela.robb moderator
    3 months ago

    Hello nortonvivian- Thank you so much for your post. It is great that you make self-care a priority! That’s so hard to do for most caregivers.

    As you may know, some folks with Parkinson’s can have trouble with initiating/starting new things, anxiety and decision making. As I’ve learned from other caregivers, these challenges can make it hard for those with Parkinson’s to keep themselves interested in activities. When you add some apathy and/or depression to the situation, that can make things even more challenging.

    You may want to have a conversation with your hubby about adding more activities to his calendar. Maybe even do some of these activities with him. I have found that sometimes if the caregiver get involved first in an activity, the person with Parkinson’s may join in later once they see the enjoyment the caregiver is having. Taking an example from your post, keep going to the support group even if your husband doesn’t want to go. If you enjoy the meeting, keep going!

    The last thought I have is you may want to mention the sleepiness at the next primary doctor, neurologist, or psychologist appointment. Maybe you and your husband can decide how to mention this. It is worth a mention to make sure there isn’t something else going on. Always best to have a professional opinion to rule out anything else.

    I hope this info helps. I also hope other caregivers chime in with their experiences! Since no two caregivers have e same experiences, hearing multiple approaches can be best!

    Angela
    ParkinsonDisease.net Community Team Member and PD Caregiver

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