By Karen Susman, communications consultant and Alzheimer’s caregiver
Twenty-seven years ago, I went to a dinner party attended by singles and/or recently divorced folks. This handsome guy came through the door. He laughed at my jokes and that was that. That was Tom. I don’t usually talk about Tom. Not because I’m hiding him or the fact that we’ve been dating all this time and don’t even live together, but just because talking about our relationship is too personal.
But, now I will. Because Tom has Alzheimer’s and I am his…I don’t know what to call me. I’m his caregiver, his friend, his voice, his advocate. Tom has no family in Colorado and his two brothers are far away.
Tom and I have had a lot of fun over the years. We’ve traveled. Shared music and movies, bike rides and hikes, Aspen and CBS Sunday Morning and doggies. He’s been there for me and I’ve been there for him through numerous surgeries, crises and other events that can happen to a long-term couple who start a relationship in mid-life. My family loves him and he loves them. I’ve been to Catholic mass and he’s been to Rosh Hashanah services. We’ve spoken together to municipal groups since Tom was a mayor. He’s always been a civic leader. He lobbied in Washington, D.C., to bring the light rail to Colorado. He has a wall chock full of plaques recognizing his community service. He practiced law. He was a constant student with a curious mind.
But now Tom has Alzheimer’s. I didn’t know much about Alzheimer’s until recently. A lot of people don’t know much about Alzheimer’s. There is stigma and fear. Everyone asks me if Tom knows who I am. Yes. He does. Maybe he won’t know me in five years. Maybe he won’t know me tomorrow.
Alzheimer’s is called the long goodbye. The person in my position gets to grieve daily as the loved one slips away in teeny bits and pieces. And yet, this morning, I joined him for chair jazzercise at his new assisted living digs. He’s been there for 10 days and making a fairly good adjustment.
Tom had lived in the same apartment for decades. I had to move him. This has been exhausting physically, mentally and emotionally for both of us. I haven’t always been the sweetest.
In my caregiver support group, everyone else is married. They look at me quizzically, wondering why I’ve taken this on when Tom and I are not married. Believe me, I’ve asked myself, “Why am I doing this? Why so devoted when I don’t have to be?” Then I got the answer.
My neighbor’s husband died recently. He had Alzheimer’s and it took a great toll on her. At his memorial service, she spoke to the gathering about their good times during their 44 years of marriage. Then she recounted that on the night he died, she said to him, “We kept our promises.” I thanked her for saying that and gave her a hug. She said to me, “You will keep your promises, too.” And, I am.