Kirk from Connecticut
Ours is a little more joyous story than most. When we first received the diagnosis of Cindy's early onset Alzheimer's we created a bucket list. The most important item was to hike the Pacific Crest Trail in 2014, a long time goal of a person known as the "Expedition Woman" among our long distance hiking buddies. Our daughter Charissa joined us on that hike, indeed, she is the reason I am sending this, as a late contribution to your "Kindness to Caregivers" initiative. She gave up six months of her life, taking a leave of absence from both work and her Masters program, to help me help her Mom fulfill her dream. We used her car as a support vehicle and took turns between us accompanying Cindy on the trail. I know this is now too late, but my daughter deserves recognition.
My goal as a caregiver has been to maintain the highest quality of life and happiness for Cindy until she passes away. I maintain a blog, called Humanity Hiker, that shares our inspirational journey while providing tips for caregiving and maintaining brain health. Fortunately, this goal has been easy with Cindy. We took care of my Mom with Alzheimer's for the first five years of our marriage. She was melancholy. We took care of my father-in-law for a few months. He was hostile. Cindy has maintained her warm and kind essence throughout this journey together, which is now nearing the end with her advanced condition.
Achieving this goal calls for creativity at times. With Cindy's ability to walk ever declining, I acquired a pedicab this pass summer that enabled us to spend more times outdoors in our beautiful, pastoral town, while also providing me much needed, health maintaining, exercise. This also has made us the "talk of the town" and increased our social interactions, so important for quality of life and happiness.
Most of my stress comes not from the actual caregiving of my beloved wife, but from the financial predicament caused by living on a fixed Social Security disability income in order to be a full time caregiver. I'm connected to Connecticut's DSS, CCCI and other agencies, but hurdles get in the way from taking full advantage of virtually every program to which I've been introduced. For example, Caregiver Homes has a wonderful program for reimbursing live-in primary caregivers, in order to keep patients in their homes, but as a spouse I don't qualify.
I find that following my own advice on brain health: eating healthy, vigorous exercise, active learning, etc. (see my Humanity Hiker web site) helps to manage my stress and maintain the pursuits of beauty, kindness and joy with Cindy that always has guided our long journeys together. May this continue until she passes away, here at home, here with loved ones.