Recent Research Confirms the Need for Parkinson’s Caregiver Support
Even solid partnerships aren't impervious to the challenges of Parkinson's
The definition of “caregiver” is different for everyone, depending on where they are in their lives. My husband, Mike, and I never defined him as a caregiver because I wasn’t struggling physically, despite my Parkinson’s disease. Struggling emotionally is a different story, and he’s been my rock and partner on this journey for nine years. He’s also had challenges, however, and they eluded me until now.
Why?
A Parkinson’s diagnosis immediately focuses on the person who has it and often overlooks the future caregiver. It shouldn’t, and resources are available for any stage. The national Parkinson’s Foundation recommends defining “caregiver” and what that means for both people in the partnership. It’s essential, and I wish we’d done it sooner.
Fortunately, efforts to understand the caregiver’s role are at the forefront of recent research. In a November press release, the pharmaceutical company Kyowa Kirin, the Davis Phinney Foundation, and the Parkinson & Movement Disorder Alliance announced the publication of a white paper titled “Burden and Benefit: Embracing the duality of the Parkinson’s caregiving experience,” which features findings from the 2022 Parkinson’s Care Partner Survey.
A total of 752 U.S. care partners of patients with Parkinson’s responded to the survey. Of those, 77% found the role of caregiving had strengthened their relationship, yet 81% said it was the hardest thing they’d ever done; 73% said their biggest challenge was watching their loved one’s symptoms worsen.
Mike and I discussed the survey, especially the challenge of watching your loved one as they try to regain some sense of normalcy after the diagnosis and later with symptom progression. It causes stress in a relationship and a marriage. Even the most solid partners are not impervious to the far-reaching effects of a life with Parkinson’s.
Protecting relationships
Relationships change because life changes. We refer to it as our “new normal,” even though there’s nothing normal about it. Life is messy. It takes a tremendous amount of effort to protect your relationship. Exploring the benefits of therapy and counseling, open communication, and good times may help.
The survey and white paper are treasure troves of information to help us understand the challenges our loved ones face. I encourage you to visit the website. Take the survey together and look for new surveys on other topics, such as the “off times” survey featured in Parkinson’s News Today. Participating provides valuable data for future research, and you may find your “aha!” moment.
For Mike and me, this all comes down to our wedding vows. They’ll continue to guide us, as they have for 31 years. However, we all can take some advice from Parkinson’s News Today columnist Dr. C, support our partners, and focus on the lives we’re building together.
Ultimately, it’s worth going through tough times to find the good in them, and in our case, our lives are good.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Comments
Mike
Lori,
Great article. My wife Fraya is my Care partner. She is the very best. We have been married for 30 years now. I was diagnosed 2.5 years ago. We met at an A.A meeting so we have struggled through many things. Parkinson’s is difficult but it is another challenge we deal with ‘‘One day at a time’. We have a Higher Power who has not left our side and never will. The disease is so much easier if you do not face it alone! Thanks for your insightful reminder Lori, Blessings, Mike
Lori DePorter
Thank you for sharing. With every battle, the scars make you stronger; if that's true, we should be invincible. I just thought of that - thanks for the inspiration. And yes, the journey is better together.
Blessings back at you!
Lori
SoJo
My husband neurologist diagnosed him as having Parkinson's, six months ago. His Internal medicine Doctor told him he does not have Parkinsons. I see the signs, tremors, slower movement and starry eyes. My husband gets mad at me and tells me he does not have Parkinson's. He is 73 and exercise and make an effort to keep moving. His neurologist put him on Ropinirole which helps the tremors. Is denial common? I don't see any progression since he's been on medication. I just feel by not acknowledging the disease we can't prepare for care in the future. I've started saving my money for the inevitable because everything I read says the disease will progress.
Lori DePorter
Sonja-
Reach out to the Community Liason at the hospital or the neurologist's office. They may be able to provide resources for you. Denial was part of the process with me - then acceptance and grief. Keep exercising and keep moving. You are a great advocate for your husband - hang in there!
Lori