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What advice would you give to a new Parkinson’s caregiver?
Starting out as a caregiver can feel overwhelming and confusing. Hearing from others who’ve walked the path can offer encouragement and guidance.
What advice would you give to someone just beginning their caregiving journey?
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5 Replies
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My friend’s mom got Parkinson’s, so she get how heavy it feels at first. Biggest thing—don’t skip your own breaks. She read these wellness tips https://betterme.world/articles/wellness-tips-for-employees/ meant for employees but they totally help caregivers too. Little daily self-care keeps you sane and patient. Trust me, balance matters.
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This is a great reminder, Kenneth. Thank you!
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My wife was diagnosed in 2011. She also has a long history of Crohn’s disease. I retired early to take care of her, and I don’t regret it at all. First and foremost, show a lot of love, compassion and patience. The symptoms sometimes accelerate – Cindy’s hand tremors have gotten worse in the last 2 years. Her short term memory is fading, and her body is stiffening.
Be sure to attend every neurologist appointment, listen and ask a lot of questions. Research the disease and learn how it progresses. Look at, and evaluate every medical solution, even supplements and devices that may not make sense to you. What works for some, won’t for others. And discuss all options with the person whom you are caring for. There are no magic bullets, no cure, yet.
It can get depressing seeing your loved one degrade like this. Lastly don’t forget yourself. Make time to get away, find a hobby, some quiet time, prayer or meditation can help. I play in a golf league, and it helps clear my mind. Caregiving can be consuming, if you let it. Hang in there and keep the faith.
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Thank you for sharing, Bill. Your experience will be helpful to others, I’m sure.
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Several thoughts:
1 — Don’t do anything for your partner he can do for himself. Wait for him to ask, and then, if you think he can do it, suggest a way he could do it for himself.
2 — Keep him moving. Take him on walks, go to the mall, go to the park, go to the gym, whatever you have to do, keep him moving. Do things for yourself and drag him along.
3 — Get him into an exercise program for people with PD. That is one place where he can be with people dealing with the same problem. Leave him there to fend for himself while you go out for a little restorative–a cup of coffee, a donut, whatever.
4 — Keep him healthy. Physical trauma, surgeries, bad illnesses (e.g. Covid) accelerate PD. You may not find a doctor who will say that, but it is my personal experience and confirmed by everyone else I have asked.
5 — Never think of your partner as a patient. He is a person confronting a battle he cannot win, but he fights on. He is a fighter. He is Sisyphus pushing his rock uphill. He is Odysseus, on a journey to a foreign land, not knowing what will turn up next, but pretty sure it won’t be good. He is a lone warrior fighting an unwinnable battle because it is the right thing to do, not because he has no choice.
6 — Do fun things together.
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