Love and laughter main ingredients in care partnership
April 9, 2018
Hello, my name is Lily Reedy and I am a care partner. Together with my husband, I co-direct the Carson City Parkinson's Awareness and Advocacy group, and we are both Davis Phinney Foundation ambassadors.
My Person with Parkinson's (PWP) is my husband. Brian has been symptomatic for the past 10 years and diagnosed for seven years. Parkinson's is a wild journey, but in so many ways it has deepened our love and understanding for each other.
Whether it's PD, MS, an aging relative, Alzheimer's or whatever the case may be, caring duties never end. PD wasn't a stranger to us when Brian was diagnosed. My grandmother and his uncle both had Parkinson's, but honestly we had no real understanding of the disease until it entered our lives.
Brian was diagnosed at the age of 47. We quickly learned that tremor was only a part of what we would be dealing with. Fatigue, painful spasms, facial blindness, lack of ability to multi task, were just a few of the initial symptoms that led him to an early retirement.
Parkinson's has proven to be an ever evolving ride, with ups and downs and unimaginable twists and turns. Along the way he lost confidence in his math skills, so I took over our finances. When sudden fatigue became a safety issue, I took over as the designated driver. At doctor's appointments, I became his notetaker, advocate and scheduler.
These early days were filled with questions. I spent hours on hours researching and seeking answers. The more I learned, the less I feared.
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Knowledge is power. If you use the internet for your research, though, please be careful to stick with reputable sources. There is a ton of information out there and some of it is not worth your time. Be selective. I will give research options at the end of this column.
One of the most important lessons I've learned is how PD affects my PWP's view of himself. He fights daily to retain the life and abilities he feels slipping away. In the past, he has described his day as if he is walking on Swiss cheese; sometimes he just falls into a hole.
Our roles as spouses/care partners change, as well as our responsibilities, as the disease progresses. I've noticed our relationship has required more patience and calm once Parkinson's was added to the mix. Making the call that a decision he's made is unsafe or in bad judgment is a responsibility I take seriously. As you can imagine, this could be a very frustrating and infuriating to Brian. What I've learned is that a kind tone of voice goes a long way. This doesn't mean my opinion or stance on an issue is subdued or diluted; it just means the delivery of the message is voiced with kindness.
As care partners, we truly need to try and understand how important, tangible and measurable accomplishments are to the person with PD. On the same token, they need to agree to certain safety parameters. I do my best to be understanding and to respect the freedom he needs to keep pushing forward.
Parkinson's disease is very much a disease of loss … from the initial loss of dopamine to the potential loss of the ability to care for oneself. As care partners, we must be very careful not to accelerate these losses by stepping in to help them with something they are capable of doing, given the time. It takes a conscious effort on my part to assist only when needed.
Communication is crucial. Be fearless and shameless and kind in your dialogue with each other. Work on remaining a team with you PWP and with those you get support from.
Please remember to do things that make you happy. As care partners, we feel there is little time or energy to take care of ourselves, even though we know we should. As we get older, there are added responsibilities for aging family, grandchildren and other family health issues. It's easy for any of us to feel weighted down by added responsibilities, especially when we add on the expectations we put on ourselves.
We need to make self-care a priority by taking time to exercise, eat healthfully and make sure things that make you happy are part of your to-do list. Claim time to read a couple of chapters of a book, or plan a breakfast out with friends. When I do something nice for myself, I feel recharged and enjoy a brighter perspective. As Brian likes to joke, "happy wife, happy life."
And remember to keep laughter handy in your care partner tool kit. Laughter is PD's kryptonite. When you most need a victory and things seem overwhelming, find a way to laugh or focus on something good, no matter how hard it is to switch gears. Laughter pushes the reset button, enabling stress to lessen and moods to become lighter.
Lastly, I recently started a coffee and conversations group for care partners. It's a time to talk to others who are in the same boat. We listen, support, encourage each other and, of course, laugh! It's always a good reminder to know we're not alone because when you're in the middle of the tough times, it often feels like you are.
Please check out these links for some awesome free information: http://www.davisphinneyfoundation.org (order a free comprehensive resource manual on how to Live Well with Parkinson's; available in hard copy or digitally); http://www.Parkinson.org/books (order a free Aware and Care kit, a copy of Caring and Coping and more; Spanish language resources are also available here).
Lily Reedy lives in Carson City with her husband, Brian, for whom she's a care partner as he adjusts to life with Parkinson's disease.