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Tagged: advice, caregiving, Parkinson's Disease, resources
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Advice for caregivers?
Posted by Ally on May 25, 2021 at 8:39 pmWho do you turn to for advice or guidance when you feel stuck? What are some of your favourite online or real-life resources (e.g., books!) for caregivers? What is one piece of advice someone told you about caregiving that has really helped you over time?
Marie replied 3 years, 3 months ago 4 Members · 7 Replies -
7 Replies
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I recently attended (via Zoom) a series of programs from the Parkinson Foundation for caregivers. The Mindful Mondays were especially helpful – learning brief meditation practices. Check them out at Parkinson.org/Summit. They were held in May 2021 (this month).
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Thank you for sharing this resource, Pam, I’m sure others will find it helpful, too!
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Well today is a perfectly good example of how covid has impacted me as a caregiver.. I generally getaway with my sister for a long weekend. No trip last year.. ? and now I am in a rut of not hardly ever leaving the house. So I am in a bad headspace. I took a nap and had seriously weird dreams that were so real, I told my husband it’s time to commit me. I have not been getting enough sleep due to our aging dog, and my husbands pain and night terrors. Oh and insomnia! What I do is read… thank god I have been able to read again. For the first six month of lockdown, I could not read a thing. That was torture for me. Candy crush.. and word play. And then I some nights put in my ear buds and play my sleep play set. I did a sleep meditation or spa sounds, and I feel my heart racing. Back to music.
I am fortunate that I have a strong network of friends and family who are available for me to vent to at any time. I also belong to this forum, and several others for support.
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Thank you for sharing, Marie. I’m sorry this last year has been so difficult. Does it look like you may be able to getaway for a bit any time soon – even somewhere local like a hotel a town over for a couple of nights might help?
I also had trouble sleeping during the first 6-8 months of the pandemic and I would listen to the same audiobook until I fell asleep. I still haven’t actually read it but I’ve listened to it many times. The author’s voice was soothing and distracted me from my anxious thoughts.
As for leaving the house – I often find fresh air and moving my body – even if it’s only for 10-20 minutes – helps my mood tremendously! Do you have time in your day for a quick outdoor walk?
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Hello Ally,
I am hoping for a getaway with my sister.. but I worry about going, our senior dog is continually getting on his nerves.and. but in the same breath he would be devastated if she were to pass, and I am the caretaker of the dog. So his annoyance annoys me. My son is here, and he is a great help. So I do have help in that way.. so a two day getaway should not be an issue. We do NOTHING as a couple anymore, not even out to lunch, it’s all very sad. I have been getting out to do a small walk with the dog around this time of day. She does her business. And comes home. And I will sit outside with her in the backyard, but in the warmer weather she doesn’t want to be out long, and then when the big bugs make their appearance from their 17 year nap, I am not going I am not going out side at all!
I have tried an audio book also, the reading person had such a soothing voice, I was out quickly. How do people run or walk with them.. accident waiting to happen!
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I do want to give an update, we are having a somewhat better august. We did enjoy two family events, the celebration of my nieces graduation from college and my sons birthday, as we did not celebrate last year due to covid. My husband himself has seen work friends for lunch, and I have gone out with a friend who move to Florida and came home to visit, took my mom to a local casino, (we had not gone in more than a year and a half, that is her thing not mine I’m the driver, and she buys me lunch!), so before we lockdown again, we are getting in a lot this august!!! ❤️
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The best piece of advice for me wasn’t caregiver-specific. It’s from Ken Keyes’s Handbook To Higher Consciousness, a quick protocol he called The Instant Consciousness Doubler: “Experience whatever the other person says or does as if you had said or done it yourself.” The ego’s natural function of self-justification takes over and creates an avenue for empathy—instead of its usual divisive ‘Me right, you wrong’ function.
So, I experience an instance of dementia, demanding behavior, or whininess as if I had done it myself. Why do I feel (not think!) I am behaving that way? Maybe because everything is confusing, I’m in pain, I can’t explain what the problem is, it’s day after day after day of this, etc., etc… In no time at all this approach can take me from frustration to “Well, yeah, of course, I get it.”
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