by Debra Feldman
My husband, Samuel, was diagnosed with Progressive Supranuclear Palsy in the summer of 2003 at the age of 49. Thatwas the beginning of a family journey into the unknown, or what my son referred to as, “our new normal.” As a family, we sought to thrive – not just survive.
Sam was an attorney, avid golfer, devoted husband and a wonderful father. After diagnosis, he was forced to give up his career and the ability to play golf, but his role as a husband and father remained intact. We have two sons and at the time of Sam’s diagnosis, Joshua was 15 and Jonathan was 13. Our roles as parents gradually changed, but our boys continued to seek out their father’s advice throughout his illness. If the boys came to me to share their sadness, I made sure that Sam was included. I always felt that his life – a central part of our family – did not need to end until it was taken.
After my husband was diagnosed, I never dwelled on the thought of his eventual death. Instead, I concentrated on how I could enhance his quality of life. Sam lived at home for two years after his diagnosis before moving into a nursing home. Every weekend for those first two years, we had company over to the house because it became harder for Sam to get out. We hosted dinner parties, dessert parties, and movie nights. These events preserved our connection to the outside world. I never wanted the illness to define Sam’s life, so we adjusted our home life to suit his changing needs.
I later invited a hospice team into our home to evaluate Sam. I understood that hospice care equated to comfort, and Sam’s quality of life was of utmost importance. I could plan the parties, but I needed assistance from hospice to keep him safe. As I kept planning our social calendar, hospice would work to adjust Sam’s care. The hospice team was such a wonderful gift to our family. After Sam’s passing, it was hard to imagine that, just a few years earlier, these wonderful people were strangers to us. The team always had the answers to questions I sometimes did not even know to ask.
In my quest to make beautiful memories out of a difficult situation, I decided to create our own special version of Thanksgiving. One year, we decided on an Asian-themed Thanksgiving. We replaced turkey with Peking duck, and mashed potatoes with fried rice. I brought in Japanese, Chinese, Thai and Vietnamese food for everyone. The only rule to this festive holiday gathering was that participants had to attend wearing pajamas or sweat clothing, allowing Sam to fit in with the guests and feel comfortable. I know this was the right decision because our two sons, now age 20 and 22, still talk about that particular holiday, when we all gave our own thanks.
After two years of living at home with us, we were encouraged to move Sam into a hospice setting. It was not an easy decision, but ultimately it was the safest choice for Sam. The night before he moved in to the nursing home, a handful of good friends went into his room and decorated the walls with family photographs and mementos everywhere – one could only walk into the room and smile. I had received permission to continue throwing themed parties at the center and did so. One particular party was an island-themed party, so Sam would feel as if he was away on vacation.
My husband Sam passed away on June 12, 2007 – I miss my best friend so much. Joshua is now in his first year of Law School at Quinnipiac University and Jonathan is a junior at Brown University. Early in Sam’s illness, we made the decision to embrace and enjoy life as a family and this turned out to be the right choice for us.