Living Well with Parkinsons Disease

Dancing in the Rain: Lessons Learned on my Personal Journey with PD (more at Copyright 2013-20 Sheryl Jedlinski

Making the caregiving partnership work for you

By Sheryl Jedlinski

Parkinson’s disease moved in with my husband, Tony, and me 23 years into our marriage, about the same time our two sons went off to college. For the first five years, we hardly noticed its presence, but over time, Parkinson’s gradually invaded every aspect of our lives, creating an ever-changing “new normal” in which Tony, carries more and more of the load. At the same time, we fended off two occurrences of stage 4 endometrial cancer, enabling us to celebrate our 45th wedding anniversary last weekend. We are among the fortunate, as only one in four marriages touched by chronic illness survives.

Tony and I were just kids when we met in college. Brought together by a series of coincidences, we knew from the start that we were meant for each other. Everything was new and exciting; our possibilities limitless. Impatient to start our lives together, we married a few months before we graduated. I was 11 days shy of my 21st birthday, and Tony not much older. We promised each other 80 or 90 years, reflecting our “forever” love. We had no idea how the vagaries of life would test us.

From the day I was diagnosed, Tony and I tackled Parkinson’s and cancer together as a team, just as we do everything in our life. He is involved in everything from counting and organizing my pills every week to taking me to and from countless doctor appointments and exercise sessions. This partnership has allowed us to make chronic illness a unifying rather than a dividing force in our marriage. Still, there are times when anger, pain, and sadness get the best of us and we say hurtful things we don’t mean. That’s when we fall back on my grandmother’s sage advice never to go to bed angry.

Seeing how fragile life is has made us that much more grateful to have each other as spouses and best friends and taught us to make each other — not Parkinson’s — the focus of our life together. This means making time for eating out and seeing movies, playing games and listening to books, socializing with friends, taking day trips, and incorporating romance and intimacy into our daily life. Sharing “remember when” stories remind us of the qualities that first attracted each of us to the other and helps us see these same qualities are still there.

The more time we spend together, the more we learn about each other and the stronger our bond becomes. This was especially true all the hours Tony sat at my bedside while I had chemotherapy treatments. To keep us looking toward tomorrow and away from yesterday, conversation focused on all we had to look forward to, like spending time with our toddler granddaughter and watching her grow and change from week to week.

Tony feels helpless watching me struggle with Parkinson’s symptoms knowing all he can do is be there with me. He is frustrated that he can’t fix me like he can most everything else. Instead he is always on the lookout for ways to make life easier for me  including making our house more accessible to help me retain my mobility and independence for as long as possible. Making the carepartner arrangement work takes love, mutual devotion, and acceptance. No matter how many times Tony tells me he loves me, I worry that one day he won’t and that he may even resent me for being ill. Tony assures me, however, that this could never happen. He understands that chronic illness does not define the person, and that underneath it all he sees I am the same woman he fell in love with almost 50 years ago. “The time we spend together is a privilege, not a sacrifice,” he tells me. “You inspire me.”

We try to stay grounded in the present where good days still far outnumber the bad and we know what to expect. There is no going back to the way things were. We must accept what Parkinson’s has taken from us and build on what remains. Every milestone we pass is another gift, a time to make new memories. No one knows what tomorrow will bring, but I feel better knowing that whatever happens, Tony will be by my side as he’s always been from the day we met.

6 comments on “Making the caregiving partnership work for you

  1. Larry and Tem Williams
    December 4, 2019

    Absolutely awesome…we know both of you (for many years and through many a crisis)….you are both lucky to have found each other. The blog should be read by every married couple. Total truth and inspiration for the big (and not so big by comparison) challenges that face any married couple.
    Congrats on the anniversary….they each become more special. love, Larry and Tem

  2. jenny beutin
    December 4, 2019

    Ok that needed a box of Kleenex!💗


  3. Wanda Frederick
    December 4, 2019

    What a beautiful love letter to your wonderful husband—and the gift of a reminder to all of us to appreciate those in our lives who share our journey!

  4. Janet Wong
    December 4, 2019

    Tears are running down my cheeks. I am so touched by the beauty of your words and the power of the love that you and Tony share. 😘

  5. Roselyn Blau
    December 4, 2019

    Tony, you are a loving, devoted and caring husband. Sheryl, you are a brave fighter.
    Together you are an amazing couple. Happy 45th anniversary.
    Love, Roz and Joel

  6. parkinsonscare
    December 5, 2019

    There is a special bond, for sure. Thank you for your blog.

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This entry was posted on December 4, 2019 by in Cancer, Coping Strategies, Family Life.

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