My name is Nancy. I live in Florida with my husband Larry who has a rare progressive neuro-degenerative disease called Multiple System Atrophy. I am his caregiver, or carepartner. The photo below was taken at an open air concert at Selby Gardens in Sarasota, June of 2018.
The photo below was taken on Cape Cod in March of 2010, two years before his first diagnosis.
We have been married for 22 years. We both have children from previous marriages.
There's Cody, Larry's son, who is married to Erin and they have a daughter Aria who is four years old. They live on Cape Cod in Massachusetts, where we used to live.
There's Krista, my daughter, who is married to Sam, and has a son Theo who is a year and a half. They live in Sausalito, on a houseboat.
There's Trevor, my son, who is unmarried and in a PhD program at the University of Washington. He lives in Seattle.
Larry was a builder. He had his own company building custom homes, although over the years he did speculative construction and commercial construction. He was a big, strong, on-the-job leader, active in the local Builder's Association - president at one point. He is known to friends and family as generous, funny, and incredibly easy going. Also very romantic. My female friends all wanted to have him give lessons to their husbands. He played baseball, basketball and football in high school, basketball in college, then community softball in his twenties. He loved the water and had a boat, and also enjoyed the mountains and skiing.
I've had many careers. First as an elementary teacher, which wasn't the best choice as I really don't like kids (except my own.) I moved into real estate sales, opening my own office, then into banking. I was recruited into non-profit leadership, as CEO of the Gestalt International Study Center, where I had studied leadership. There I learned a lot about holding two opposites at the same time (polarities like joy and despair) and about being present in the moment. I also studied coaching.
As my caregiving responsibilities increased I stepped away from the CEO role and formed a leadership consulting and coaching practice, with clients from Alaska to South Africa. With a more flexible schedule I was able to improve my golf game and my skiing. We bought a house in New Hampshire on a mountain looking at Mt. Washington.
We moved to Florida almost three years ago and life has been pretty complicated since then. The perfect house we bought turned out to have mold and need extensive, expensive unplanned renovation. Larry's symptoms dramatically worsened. My trips to clients were punctuated with calls from neighbors that Larry had fallen walking the dog. I turned my focus to developing a local clientelle. I was the networking queen, pushing myself harder and harder until I broke a bone in my foot and was on crutches for three months, unable to drive.
Around the same time we were realizing that Larry's disease was going to progress far faster than we expected. He was already needing more attention. I was on the couch, in a cast, with a lot of time to muse about choices. I decided to "retire." Not a good financial decision, but a good emotional one. I wanted to spend time with him while he still had time. Do whatever we could, while he could.
We've gotten more comfortable with living in Florida. Made a lot of wonderful friends who are amazing in the support they offer us. Our northern friends are visiting more often. Our kids offer great support by phone, FaceTime and with frequent visits.
We make the best of the life we have.