Insights from the Well Spouse Association President
Caring Today: What's your goal?
Richard Anderson: Our mission is to offer peer support to husbands, wives or partners of people with a chronic illness or disability. We're unique in that we do that for people no matter the illness or disability.
CT: What support do you offer?
RA: We started out with local area support groups and face-to-face meetings. Now, if you become a member [annual dues: $25], we provide our quarterly newsletter, Mainstay. We have a growing Internet presence at wellspouse.org, where members can read postings on our forum and participate in the bulletin-board format. We also have respite weekend events and a national conference. This year, it's October 17 to 19 in Skokie, Illinois.
CT: When did you get involved?
RA: In 2000. At the time, my first wife was still alive. We were married for 31 years. But a few years after we got married, she got scleroderma. There were frequent periods of illness and hospitalization. So I was a spousal caregiver for years, which is the norm. People are committed to and love their spouse. They want to do everything they can to help and to hopefully overcome the illness. And it gets harder and harder. I did it for 29 years, until she died in 2004.
CT: What was the easiest aspect of caregiving for you each day?
RA: For me, going to work was almost a salvation. It wasn't like I was in hell while at home. I was often very busy doing caregiving stuff. It was always a rush in the morning. I'd get up, make breakfast, tidy up, feed the cat, etc. I guess the easy part was just the normal day-to-day routine.
CT: When caring for your wife, how did you care for yourself?
RA: For a long time I didn't realize I needed to do anything. That happens to a lot of people”you just keep going. There came a point when I did burn out for a while. I simply wasn't thinking of my own needs.
CT: Were there many caregiver organizations for you when your wife first became ill?
RA: No, I involved myself in support groups that were there for her. No doubt, they're a help to the patient, but it's not possible to talk about how the illness is really affecting you, the caregiver, without indirectly or directly threatening the spouse.
CT: What's your caregiver advice?
RA: Talk to others. Learn to ask for help. Concentrate on the day-to-day. Once you start thinking about what's going to happen in the future or what things were like in the past, [the present] can look worse. [It's like you're] living as if it were four o'clock in the morning and you just woke up from a deep sleep and you're worrying and worrying and you can't get back to sleep.