Alzheimer's blog

Caregivers' best gift is to accept reality of dementia

By Angela Lunde March 8, 2011

Ann passed away last week. She was a vibrant woman who I had become very fond of. I first met Ann about four years ago when she and her husband, Wayne, joined Memory Club. Memory Club is a support and education program for persons in the early stages of dementia and their support partner. Ann always arrived with spunk, wearing colorful clothing and happy to be alongside her husband and part of the group.

Ann's disease continued to progress and although I saw less of her, Wayne remained a regular in our twice monthly caregiver support groups.

Wayne often said, as caregivers we either have patience or we need to acquire patience. Wayne believed he was one who would have to acquire it. As Wayne accepted this undertaking, he would frequently share his "lessons learned" with the group.

Most weeks, Ann would lose her eyeglasses and each time she would blame Wayne. Wayne would ask Ann to think back to where she might have left them. And sometimes (possibly with a little frustration in his voice), Wayne would remind her of where they should have been put. This encounter never went well. Eventually, Wayne learned that if he simply took responsibility for misplacing her glasses everything went much better. And in time, the glasses would eventually turn up.

About 8 months ago, Ann began packing to go "home" — no longer recognizing home as home. At first, Wayne would explain to Ann that she was home and her packing was unnecessary. This only made Ann angry. Wayne began to just allow Ann to pack. When she finished and was ready to leave for "home", Wayne would kindly suggest that they leave in the morning when they were both more rested. Ann usually liked this idea, being a little tired herself. During the night, Wayne would unpack Ann's belongings, anticipating the next day when they might repeat the same scenario. Wayne didn't mind.

And then there were times more recently when Ann would look at Wayne and say, "Where is Wayne?" In spite of the pain that Wayne must have felt when Ann no longer recognized him as her husband, he would assure Ann that Wayne was just fine and would be home soon.

You see, what Wayne learned over the years was that the most loving gift he could give his wife was a sense of ease. Telling Ann that she lost her glasses or that she didn't need to pack because she was at home, or that her husband was right there standing in front of her, didn't serve Ann at that stage of her disease. To the contrary, it would make her confused, angry and sometimes scared. Wayne learned that the best way to honor his wife was to accept her disease, which meant accepting her reality, and lovingly joining her there.

"Love is a great teacher."
- St. Augustine

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Mar. 08, 2011