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How would you counsel someone facing similar circumstances?

I learned early on that everybody is different. The rate of loss of function is totally different [with different patients]. I tell people, "Don't try to predict." When Muriel was first diagnosed, my doctor gave me a medical journal article that said it was seven years average life span, from diagnosis to death. So I planned accordingly. Now I tell people, "Don't plan, don't try to project, or you'll just be continuously frustrated and startled. Just trust the Lord."

Of course, I read every bit of literature I can get on Alzheimer's, so I don't mean to go forward ignorantly. [But] everybody differs, so be careful about your predictions.

The greatest problem is unrealistic expectations. We naturally want to hold our loved ones to what they were. Whatever they were at the last stage, we try to hold them to that, instead of accepting them for what they are. When a caregiver tries to keep them where they were, this is dreadfully frustrating for the caregiver and for the one receiving the care. It just makes a hell on earth really.

I never went to a support group. I had enough of my own burdens without taking on everybody else's. Sometimes I have accepted an invitation to speak at one of these [groups.] A lot of angry people. They're angry at God for letting this happen—"Why me?" They're angry at the one they care for, and then they feel guilty about it because they can't explain why they're angry at them, but they are. And they're angry at themselves. Just terrible frustration. So I say, in acceptance there's peace.

I remember this one friend who told me that his wife was starting what he feared would be Alzheimer's. So I asked how the people at church felt, and he said, "Well, they don't know." I said, "How do your children feel about it?" He said, "I haven't told them."

I went to their home, and it was dreadful. She was in full agitation all the time. She pulled me aside and told me dreadful things that she imagined, made up. She was in a hallucinatory stage. And I watched him. He would say, "Honey, that's not an egg; that's a stone."

I said, "Man, just accept her as she is." He said, "I can't lie." I said, "I'm not asking you to lie, but when she says something outrageous, just say, 'Well, you feel strongly about that, don't you?' or something of that nature." He said, "I've lived for truth all my life." I said, "You're going to destroy yourself and her."

A few months later, I went back and [the home] was totally transformed. He said it nearly killed him, but he had accepted her. And she called me aside to tell me how she never experienced such love in her whole life.

My wife was never aware that she had Alzheimer's, but this woman was, and she said it's worth it.

Accept them as they are. Don't try to change them or hold them back to what they used to be.

What's next for you?

I don't try to project anything. I'm still getting it together. I found a wonderful quote from Mark Twain today that was a big help: "It is one of the mysteries of our nature that a man, all unprepared, can receive a thunder-stroke like that and live. There is but one reasonable explanation of it. The intellect is stunned by the shock, and but gropingly gathers the meaning of the words. The power to realize their full import is mercifully wanting. The mind has a dumb sense of vast loss—that is all. It will take mind and memory months, and possibly years, to gather together the details, and thus learn and know the whole extent of the loss."

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Also posted today

CT Classic: Living by Vows | As his wife suffered with Alzheimer's, Robertson McQuilkin said, "If I took care of her for 40 years, I would never be out of her debt."

CT Classic: Muriel's Blessing | Despite the toll of his wife's Alzheimer's, a husband marvels at the mystery of love.

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February 2004, Vol. 48, No. 2