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Caregivers and Care Partners

Self-care for Caregivers

  • By Angela Robb Moderator

    I recently had a discussion with a fellow PD caregiver about self-care. We discussed how hard it is for PD caregivers to find time to care for themselves. She had seen an article online talking about how important it was for caregivers to take time to care for themselves and immediately felt guilty. I assured her that it wasn’t meant to make her guilty but to provide a reminder how important self-care is. Sometimes, we need to be reminded the urgency of self-care.

    I’m fortunate that right now my husband can care for himself (23 years diagnosed with Young Onset PD) and isn’t a fall risk at home. I take our dog for a walk each day for a half-hour to an hour and 3 times a week I go for an hour of a bootcamp workout. My husband is very encouraging to me to continue my workouts! I’m very fortunate for this 🙂

    I thought this might make a good discussion topic. How do you care for yourself? What and when do you take time out? Do you make time for doctor appointments too? Do you have help to take this time away? How hard was it to get this started and continue? Please share your thoughts 🙂

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  • By Kelley

    This is a hard one for spousal caregivers, especially wives, and yes, they seem to get lost in guilt. It seems we fall prey to our PWP “only you can care for me” demands and we have to find ways to change that. I remind myself that my kids, when little, also could pitch quite a fit when they were left with a babysitter and I remind myself of how I dealt with them. I have learned that when I want a family member to drop him off for his exercise class he will not be happy and say he is not going Well, much as I would do with my young ones I speak in a soft voice and let him know, yes, he is going and they are taking him as it helps me also. This seems to take much of the stress out of that separation and I can get about 1 1/2 hour of alone time. I may eat lunch with a friend or just run errands that I would rather do without him. At the end of the day we are back together, he has forgotten my “abandonment” of him earlier in the day and I know at bedtime I will feel a little more accomplished in my day.

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    • By Chris H. Keymaster

      That’s so true, Kelley. Carving out time for yourself as a caregiver is very difficult. I’m so glad to hear that you’re able to take time to socialize and take care of necessary errands. If you’re up to it, we’d love to hear more about your story as a caregiver. You can actually go to this link to submit your story which could be featured on our website and weekly newsletter: https://parkinsonsdisease.net/stories/. Thanks for being part of the community! – Chris, ParkinsonsDisease.net Team Member

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  • By Marietah

    Uhm…….I am spick spanking new to this site……and today of all day I feel like throwing an Oscar winning tantrum.
    Hubby has been diagnosed with PD in 2012 had meds went for regular check-ups until one day in 2014 when he decided that the side affects of his meds were too much……he stopped with everything except his tranquilizers………and then in 2015 he was retrenched and we lost our medical aid. With all the stress that was part of this whole situation it was as if he stuck his head in the ground denying that he had any problems with PD
    Eventually he was able to get work again but very insignificant to what we were used to financially.

    About 6 months after he got work I was blessed with a job as well but we are still not able to afford doctors let alone any specialists

    Sorry one thing I forgot to mention was that we live in South Africa and from what I read we do not have as much support systems in place…….

    So about 8 months ago we were able to get into a state hospital where he can see a GP for nearly free. But they dont have the knowledge and insight to PD and its treatments.
    So as much as I love my dear hubby who is 64 years old I am at an all time low. He refuses to exercise or keep busy in any way……and he has this inexplicable fear about the calming meds that are supposed to help him sleep, because for the last 3 months he sleeps for avout 20 minutes and thats it. Then he is like a jack in a box all over the place, driven by naked fear.
    He is on antidepressants now and he got a new med last week that is also supposed to help him relax…..but to no avail…….its as if he is driven to be in control and cant operate if he is not.
    Now with that out of the way, I gave up everything I enjoyso that I can be there for him. He goes absolutely crazy if I go grocery shopping and take too long!
    Im a receptionist at a dental practice and to come home at night to take care of him has drained me totally. I dont know who I am anymore or what kind if hobbies I had or enjoyed. Weekends I must sit with him from morning to night, but he must never be alone! Heaven forbid…….my house is in shambles because I must sit with him and now that Im on leave during the holidays I am just too tired to do anything. And please note he can still look after himself. I have talked, pleaded, I’ve been cross……tried everything but I just cant get through to him…….

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  • By Angela Robb Moderator

    Hello marietah – so glad you found ParkinsonsDisease.net! I hope you find some support here on the website and in the Facebook group. I’m so sorry you and your husband are having to go through this. Yes, there are times for tantrums but I find that after I get those out, I need to dive into solutions. Although my husband hasn’t had this type of reaction with his Parkinson’s, my heart goes out to you.

    As I mention in my article, you’ve got to care for yourself. You need some support! Are there any professional counseling resources that you can reach out to at the state hospital? Any Parkinson’s specific foundations/support groups in your area? Either of this organizations might be able to give you the help you need. They may also be helpful in helping your husband find some resources for himself. It would be great if they can refer you to someone who knows about Parkinson’s. Since I’m not from South Africa, I don’t know how the system works.

    I did a quick search and found https://www.parkinsonssa.org/. As I said, I don’t know much about them but you may want to give them a call. Any resources you can find for yourself or your husband can make a big difference! Please know there are so many of us that can relate or lend support to you.

    I hope this helps!
    Angela
    PD Carepartner and ParkinsonsDisease.net community advocate

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