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Caregiving: Susan's Story

Tuesday January 26, 2016

I am a caretaker by nature and reveled in sharing life with Joe, my husband of 28 years, as well as being a mother to our 3 sons. We fought hard, enduring 8 miscarriages, but life was sweet in those early years. Joe was entrepreneur, an engaged father and husband and we had an abundance of friends and family. It seemed the more I poured out, in kind I was refreshed, energized and oh so fulfilled.

Then the hammer dropped; Joe was 49, the boys were 12, 4 and 3 years old when our lives changed drastically and we began our PD journey. We adjusted and readjusted for 13 years. Joe’s PD onset was rapid and within 2 years he found it impossible to maintain his career as a CFO, followed by the loss of the ability to drive safely. 

His loss of independence was the blow which ignited my desire to ‘be the best caregiver I could be’ - after all, he would have done the same for me. I cheered him on as he walked the boys to school, attended their sporting events and bravely fought to find meaning in the nightmare he was living. 

But it was only a matter of time before I found myself drained by the single parenting, the loneliness of ebbing companionship and concerns about the future. Even my part-time work was often stressful as I sometimes returned home to find him on the floor, having fallen and reticent to call for help. We were younger than the PD couples we knew and found support groups more depressing than encouraging. We knew only one other PD couple raising a teenage son and he was successfully holding off most effects of the disease through a strong commitment to regular and varied exercise.

Joe spent the final 6 years of his life here on earth in various foster care homes, which relieved me of physical caregiving, but brought on the mental torture that I had somehow let him down. I brought him home as often as possible until the final 2 years, and I visited him almost daily. 

I lived with the motto, ‘strength for today and bright hope for tomorrow,' but it wasn’t until several years later that I realized there were a number of things I wished I had done differently. 

Consider the following:

  1. Take downtime for yourself, give yourself permission to continue living…you will live on; considering your mental and physical health. Self-care often takes a back seat in the journey.
  2. Seek counseling as a gift to your children. Only later did I realize I was out of balance, shielding our 3 sons from our impending loss. Likewise, I missed out on some of their teen years, robotically trying to be both the best wife and mother, often placing time with their father before their needs.
  3. I would have assembled ‘Our Life Our Story’ for Joe earlier. Using photos and “remember when” type journal entries, this book validated him as an entrepreneur, husband and father. It reminded both of us that this was just one chapter in a life lived with meaning.

Undoubtedly, there were ‘angels’ who flew in and out of our lives during this time, angels who cheered, listened and encouraged us. They seemed to understand that pity and platitudes fall flat. It is because of the important part these angels played in my life, I have determined to stay involved, to use what I have learned in that chapter, to help others walk through similar situations with grace and confidence.

- Susan Laughlin

Susan is a retired accountant and mother of three. She volunteers for the Northwest Parkinson's Foundation as a PD Link volunteer and enjoys mentoring others who are struggling with caregiving/long-term illness. She lives in Oregon.

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