Coping Advice for Family Caregivers

Martin Schreiber is a former Wisconsin governor, lieutenant governor and state senator. But he took on a different role as caregiver for his wife, Elaine, after she was diagnosed with Alzheimer's disease 13 years ago. He wrote about his struggles in My Two Elaines: Learning, Coping, and Surviving as an Alzheimer's Caregiver (Book Publishers Network, $17), with the book's net proceeds to be used to promote Alzheimer's caregiver support programs. In this lightly edited conversation, we talked with Schreiber, age 78, about the overlooked needs of caregivers.

You point out that it's often more challenging for men to take on the role of caregiver. Why do you think that's the case?

Men have terrible egos. And they think they can handle everything without any help. And so, as the caregiving progresses, and there's more need for outside support, the man refuses to ask for it, creating further types of anxiety. You're assuming roles that you never had before. Elaine would take care of the bills, all of the home care, and so forth. Now you are the one doing it. All of the sudden, simple matters become complex.

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Noting the health problems you suffered before you reached out for caregiving help, you urge other caregivers not to hesitate to seek support. What kind of toll did your wife's disease take on you?

My world became Elaine and taking care of her, and nothing else really seemed to matter. I cut out exercise and cut out being with other people. I gained 30 pounds. I couldn't breathe decently when I would go for a short walk. I didn't want to seem like a wimp because I couldn't handle the emotional strain. But the fact is, [that strain is] there. Friends pull you aside and say, "Wow, you look terrible." My wife is in assisted living now, and I see it in the faces of the other men there, the drawn-out look, the haggard look.

Can you explain the concept of your "two Elaines" and how it helped you to move forward?

I had to understand that there are two Elaines and that I had to let go of my first Elaine. The woman who once was is no more. I can never expect of this new woman any of the things I once did together with the first Elaine. But I wish I'd understood the benefits of letting go sooner. If we're at Christmastime, with the four children and their spouses and grandchildren, and Elaine asks who those people are, I don't have to worry about the pain of dealing with this because I already dealt with that when I let go of the first Elaine. There's now this new person whose life I want to enter. Elaine likes music, so we listen whenever we can. When I'm walking with Elaine, I sing, "I want to marry you," and she says, "that would make me so happy." As a caregiver, look for those areas of common interest. Elaine may not be aware I might be her husband. But she knows I'm a friend, and I'm someone special to her.

You used strategies such as therapeutic fibbing, which avoids directly challenging a partner's inaccurate memories. What other approaches worked for you?

Redirection is a critically important tool. She's got five coats on. She says she's cold. There is no way intellectually I can have her understand that five coats in summertime is going to be too much. So I agree she's cold, and I get her another coat. Then we begin to talk about what might be happening with one of the children, or what she might want to do that day, and we're not talking about the coat anymore. If you understand you can't argue with the disease, life is so much easier.

How do exhausted caregivers find the moments of joy you mention in your book?

You look for them. We were driving along the other day and listening to songs from the fifties. Elaine asks, "Do you love me? How long will you keep me?" I said, "Elaine, I will love you and take care of you and be with you for a billion years." She looked at me and said, "I don't think I could take you for that long a period of time," and we both laughed. Sometimes, the spark comes out again.