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Coming Out and Pushing Back Against Alzheimer's, Part Two

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the happy couple, BA [Before Alzheimer's]
(Image by Reisman family collection)
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Welcome back for the conclusion of my interview with Elaine S. Reisman. Elaine's husband Bernie suffered from Alzheimer's Disease for the last sixteen years of his life. 

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Before we broke, we were going to talk about how Alzheimer's affected your life as a couple, Elaine. What can you tell us?

ESR: We continued to have an active social life, entertaining and having lots of company for dinners and visiting. Old friends invited us out but it was more difficult for friends who knew us before the dementia. This was not the man they knew. So, it was easier to socialize with new friends whom we met through support group and day care, because they knew him as he was at that time. 

We also still took some trips, even venturing overseas as we were accustomed to doing; however, Bernie's constant questioning sometimes became annoying.  I covered for him as much as possible, but then would explain (out of his hearing) that he had Alzheimer's.

JB: In what other ways did the illness impact your lives? 

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ESR: Although we continued to travel, the trips were stressful for me. But I was glad that we could still do them as we enjoyed traveling.

The problem with traveling was that if he had to go to the men's room, I had to wait outside  and hope that all was well.  Once, while I was sitting with our luggage,  Bernie came out and headed in the wrong direction. I had to abandon our luggage and run after him.  I wondered then whether it was really worth it to travel.

One day, we were in downtown Boston waiting for the T.  When the train arrived, I thought Bernie was with me, but he had evidently gotten onto a car by himself.  Before I knew it, the train was moving on.  I quickly went to the dispatcher who radioed ahead and arranged for someone to take him off the train until I could get on the next one.  When I caught up with him, he was sitting and having a great conversation with the two agents who were sitting with him.  No need to mention how I felt! 

Probably the most difficult challenge occurred when Bernie had to stop driving. 

JB: Tell us more about this, please.

ESR: When it became clear that he should no longer be driving, that was a BIG one.  He was assessed and, because he still seemed OK, he was told that he could still drive short distances.  That truly posed a problem.  Fortunately, one of our two cars conked out, so I could concoct lots of excuses.  "We have to go on the highway and you know the doctor told you not to drive on the highway"  and other such ruses.   One day, he was very insistent so I got the doctor on the phone to convince him.  From then on, I kept a written note from the doctor and pulled it out when he insisted on driving.  That seemed to satisfy him. 

Once someone can no longer drive, the burden on the caregiver is even greater.  I realized that I was delaying having Bernie tested because I knew that once he wasn't driving, that would further complicate my life. We supplemented with car services available in our area, but you can't minimize the psychological implications, particularly for men who are no longer in the driver's seat. Needing to stop driving means a loss of independence and control. Driving is macho! 

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As the challenges became greater, it was clear that the nature of my role was irrevocably shifting from wife to caregiver.

Which leads to the topic of intimacy.  

JB: I was wondering about that.

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Joan Brunwasser is a co-founder of Citizens for Election Reform (CER) which since 2005 existed for the sole purpose of raising the public awareness of the critical need for election reform. Our goal: to restore fair, accurate, transparent, secure elections where votes are cast in private and counted in public. Because the problems with electronic (computerized) voting systems include a lack of (more...)

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