During the early years of Kate’s Alzheimer’s, I read an article that dealt with the value of caregivers having “a team.” The author meant a team of professionals, especially medical, legal, and financial. I’ve taken that seriously and extended that to a large percentage of the people I encounter every day. That includes all of our friends and acquaintances as well as servers in restaurants and strangers that offer gestures of kindness. Our team has grown significantly since we moved to a continuing-care retirement community a little over a year and a half ago. Both the residents and staff have played a vital role in our lives.
Although all of our family members live out of state, they, too, have played a key role on our team. Most of our contact involves email and phone calls, but they also visit us.
Initially, Kate didn’t want to tell anyone about her diagnosis. As time passed, I realized the value of knowing about her Alzheimer’s. The moment the doctor gave us the test results, the two of us began to make the most of whatever time remained for us. More than we had done previously, we began to focus on enjoying every minute together. It has paid great dividends and is still doing so twelve years later.
I wanted our children to have the same benefit, so I finally told them. I’ve never regretted it. Telling them was the catalyst that opened the door to something I had long believed was an important parental responsibility – to include children as partners in the last chapters of our lives. From that day to the present, I’ve kept them fully informed of the ups and downs we experience. They have responded in kind. They call frequently to see how we are doing, and their visits give them a personal glimpse of our lives. Had I not told them and kept them up to date, I would have missed out on having the most important members of my team.
I was prompted to comment on their contributions because both of our children paid us a recent visit. It was a particularly nice one. They have been here a number of times and are beginning to know other residents and staff. They have a much clearer appreciation of the benefits we receive here. They supported our move from the moment I mentioned that I was thinking about it. They are also happy and, perhaps, relieved that we live in a place that provides so much support. They don’t have to worry about us as much as they might have if we were still living in our home.
Most importantly, they enjoyed their time with Kate. They were here for several days which gave them an opportunity to observe her special moments and see some of the same qualities they recall from childhood.
We don’t know exactly what challenges lie ahead of us, but I am most appreciative of the support we have from our family. That is one more reason “Living with Alzheimer’s” has been easier for us than it is for many other couples, and I am very grateful.