Leonard and Kathryn Romney Interviewed October 29, 2010
I became a caregiver in August 2009 for my wife, Kathryn. After a series of tests Kathryn was diagnosed with early-stage Alzheimer’s disease. Kathryn and I have always taken care of each other. I’m not a caregiver because Kathryn has this disease. I’m a caregiver because I’m her husband.
We’re lucky. We’re both still healthy and active. Kathryn’s progression has been slow over the years. And while I’ve had to take on more responsibilities, she’s still able to do many things on her own--like being an active runner.
Her condition is still in the early stages, but I am worried about the future. I feel stressed sometimes when I read about the path this disease is going to take us. In order to prepare for the future we have taken several steps. First, we are building relationships with friends we have met through a local support group and by Kathryn’s being an Alzheimer’s Association Early-Stage Advisor. Second we have also talked with our children about what happens to mom if I pass away first. Next, we have also looked at our finances and made arrangements for long-term care.
A big frustration I have is dealing with my own shortcomings as a caregiver. For example, I can lose my patience when she asks about our schedule many times during the day. What that means to me is that I haven’t accepted what this disease is all about. So sometimes I struggle to handle this disease in a kind and gentle manner.
Something that has helped me personally is being a part of a support group we created. The support group is made up of four couples, in which each wife has Alzheimer’s and each husband is the caregiver. We meet once a month with all of us together, and then we break up into two groups. The husbands talk about caregiving challenges and the wives talk about their experiences with the disease. Additional support comes from our friends who have been caregivers to their parents with Alzheimer’s. They are willing to help out and give me a much needed break. In fact, a friend recently has been helping Kathryn learn how to use a sewing machine. When Kathryn became frustrated, her friend said, “I’m on your team.” And that’s what we have, a wonderful “team” of people supporting us through this disease.
The job has gotten easier as I’ve gained experience, but I have gained a greater understanding of my role and what it means to take care of someone with Alzheimer’s disease.
If I could share one piece of advice to others it would be talk about it with others who can help refer you to resources and be part of your support team. Also, be open. Don’t hide behind the disease.