My husband was an athlete and an artist. Combine those innate abilities with an easy-going personality, and you get a pretty good picture of the kind of man he was. It was his manner and his abilities that gave us a great marriage, let him be adored by family and friends and helped him get through the greatest challenge of his life: living with Parkinson’s disease (PD).
Don was diagnosed in 2000 at age 70 after having difficulty walking. His balance was off and he didn’t swing his right arm anymore. His tennis game suffered and he gave up skiing. A neurologist put him on carbidopa/levodopa and we hoped for the best.
We had 12 good years after his diagnosis. I read books on Parkinson’s and gathered articles about people living well with the disease. I went to PD support groups. We tried to stay positive. I kept reminding him, “we will deal with whatever comes.”
After a car wreck when he fell asleep at the wheel, he stopped driving. But he continued to draw and paint in pastels, enjoyed going out to eat and played Scrabble with friends. I gave up my volunteer work and centered on him.
Some days he was lively, animated and active. But some days he was barely able to move and shuffled around like a thousand-year-old man. His voice softened and speech became difficult.
Although we had little hope for Don’s health to improve, our relationship with God did. I became active in a women’s Bible study group that became my support, church friends would visit Don and we gave thanks for all the love that surrounded us.
By 2015, he had more trouble walking and started using a hiking stick, then a cane and finally a walker. He couldn’t straighten his legs and had muscle spasms with pain at night. He had occasional hallucinations. He started sleeping in the recliner because it was too hard to get in and out of bed. Don never had a tremor, but had increasing rigidity in his limbs and in his facial expression.
As his legs continued to weaken, he started having serious falls. More than once we needed a neighbor or a fireman to help get him up off the floor. We got a wheelchair from Veterans Affairs, and they gave us a hospital bed and had a ramp installed. I was embarrassed to have our house starting to look like a nursing home, but Don was a good sport about it all.
As Don had more problems, I became more stressed. We hired a home health nurse to spend mornings at the house to help Don dress and shower. Having the support was a great help to me; it enabled me some freedom and took the pressure off being the full-time caregiver.
After Don spent a few days in the hospital with a bout with pneumonia, he was weak as a kitten. The social worker helped us find a rehab facility near our house, supposedly a temporary situation that would enable him to come back home once he regained some strength. Although he worked hard in rehab, (once an athlete, always an athlete), he did not improve. The days in the nursing home turned into months.
I knew he wanted to go home, but he rarely complained. In spite of his weakness, he enjoyed arts and crafts and asked for a sketch pad so he could draw. From his wheelchair, he played balloon volleyball. And together, we watched television or listened to music. We were blessed with many friends and family who came to visit or volunteer help. Our daughter moved back to town to give support.
Even under the watchful care of the nurses, Don took falls, sometimes out of the wheelchair, once out of bed. He started sleeping more and eating less. He lost more weight.
Towards the end, his breathing became more labored, he often choked on his food, and swallowing was difficult. We could tell he was failing and called in Hospice. For two months they came each day and worked easily with the nursing home staff to keep Don comfortable.
His “last best day” was just before he died. When I arrived during breakfast that morning, he was at the dining room table, trying to eat bacon and eggs. Later, he attempted a game of volleyball and smiled when a visiting musician sang our favorite song for us.
That night, as I did every evening, I asked him, “Have I told you lately that I love you?” Don whispered, “I love YOU.” Then he went into a deep sleep. By the next morning, vital signs indicated his body was shutting down and we gathered family to his bedside. There we stood silently, watching his little chest rise and fall. Then, suddenly, it did not.
It came to me how fragile we all are, just one breath away from Heaven.
I was sad that it was over, but grateful it was only a year that he was really incapacitated. I still mourn the loss of my best friend, the love of my life. But he was a role model for us, staying active, not complaining, making the most of each day. Loving life even to the end.