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People with Alzheimer's can exceed expectations

by Carol Bradley Bursack, Editor-in-Chief

It's human to have preconceived ideas before we meet someone with a specific disease. When we are to meet a person with Alzheimer's disease, most of us are ready for the worst. Will the person be half-conscious, slouched over in a chair, drooling and unable to respond to any question? Will the person we angry and abusive, perhaps thinking we are someone we are not? We could be faced with these awkward situations, but then again we may not. While considering all scenarios, it's best not to make up our mind about someone before we even meet.

As an author, columnist, blogger and speaker who spends a great deal of time talking about Alzheimer's disease, I should not be surprised by the differences between people with dementia. Over the span of two decades, I cared for seven people, four of whom had different dementias, so I should have "seen it all." However, I realize that I haven't seen it all, and never will. I was recently reminded of this truth.

I visited the home of a retired biology professor whose wife has Alzheimer's. The man, Bob, is 81. He's agile, quick of mind and extroverted. His wife, Jane, has stage five Alzheimer's, as measured by the seven point scale. When I arrived at their condominium building, Bob enthusiastically showed me all over their commons area. After my tour, we went to Bob and Jane's condo so I could meet Jane and we could all visit.

Bob had previously told me about the lock he had installed near the top of their door. He locks it by key whenever he leaves their apartment, even for a brief mail run. The lock is unobtrusive and too high up for Jane to notice. It performs well as security to keep Jane from wandering.

Bob unlocked the door. As we entered, he called out to Jane that we were coming, so as not to startle her. I'd heard so much about Jane and how Bob manages, with some in-home help and much support from family and friends, to care for her, that I was sure she would be nicely dressed and comfortable. She was.

However, this is when my preconceived ideas were blown away. It had been a cold, snowy drive from my home to theirs, and my hands, even though I'd worn gloves, were rather chilly. As I reached out to take Jane's hand in mine, I apologized for the coldness. She didn't skip a beat as she looked me in the eye and told me I was right, my hands were cold. She had an elfishness about her manner that was intelligent and appealing.

Bob showed me around their condo, explaining the history of many items they had picked up during their extensive travel as a retired couple. They also had many antiques. After this tour, we sat and visited, including Jane as much as possible. What I had imagined would be a difficult visit, with me trying to think of ways to interact with Jane, turned into a delightful time. Jane responded when I told her what a lovely home she had. She responded when Bob and I talked about her work as a teacher at a nursing school. She told Bob when she was uncomfortable, and he did what he could to help her.

With Alzheimer's disease life changes, but love does not

Their long history as a loving couple has not changed. To be sure, their life has changed dramatically. Jane can no longer put on the dinner parties she loved preparing for. She can no longer keep up with quick flowing conversation. She needs help with nearly all she does. But she is far from what many people, even those among us who have seen people in all stages of Alzheimer's, expect.

Jane is a great reminder that people with Alzheimer's, or any dementia, are as individual as any of us. They began as individuals and will end their lives that way. We need to acknowledge each individual and avoid judgment and preconceived ideas based on someone's disease.

I realized, upon meeting and interacting with Jane, that even those of us who are immersed in the field of elder care can slip into thinking in stereotypes. As I move into the future, I will try to keep Jane in the forefront of my mind as a reminder that there are surprises around every corner - even when it comes to stage five Alzheimer's.