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Life Arts

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

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 Going to support group helped a lot.  When he started going, it was clear that he still was somewhat with it and he took on the role of greeting the other participants.  Often, members of the caregivers group would tell me that Bernie helped their spouse to enter the group.  One time, the director of a daycare came to speak with us and several of our members suggested that Bernie might be able to volunteer in a day care.  The director was great, called Bernie and asked him to volunteer.

For almost a year, he conducted (unofficial) groups at the daycare center.  He was able to think of topics that might interest them; i.e. their past careers, ageing issues, favorite activity,etc.  A staff member was present, but he thought he was going to work.  Often, the daycare staff would also ask him to help orient a new person coming to the center.  Amazingly,  he still maintained his  professional and social skills.


the Reisman 18, Puerto Rico, December 1997
(image by Reisman family collection)

JB: How did you go about designing tasks and activities  to accommodate Bernie's needs?

ESR:  Tep, a very dear former student was eager to be helpful and volunteered to pick Bernie up at day care each Monday.  They took a walk or went swimming or gardened.  I arranged for the gardening by calling the local garden group that tends the flowers at the library.  They gave him a plot which he worked on by himself and then with Tep's help.   When it became clear that additional help was needed, I hired companions, some of whom were terrific.  They loved Bernie because he was willing to do things, had a good sense of humor and expressed his appreciation to them.  Some even took him to their homes and one brought her young daughter who loved to color with him and play toss games. I contacted some of the local social work programs and found a student who was interested in coming to take him for walks. 

We had a helper who sat with him and encouraged him to talk about his life. She put it on the computer as he talked.  Recalling childhood memories proved satisfying and stimulating and helped to keep him focused in a way that other activities did not. 

One summer, I arranged for him to play tennis with the kids in a local tennis camp.  He was a top tennis player and even when he was older could beat the college kids.  So, playing with the young campers was a good activity for him.  Unfortunately, the head of the camp, who thought it was a good idea, really did not know how to integrate him into the program and Bernie sensed that he was not really accepted.  The head counselor tried to make it more pleasant for Bernie, but after a while, Bernie didn't want to go anymore because he felt they were just having him sit around.

At home, we played cards--any way that he wanted.  That means we would start out with a game and then it pretty much became just putting cards down in turn.  Toss games were a little more successful.  He also enjoyed drawing with the daughter of one of the companions.  Cutting up paper (I told him it needed shredding), pasting labels on old envelopes occupied him sometimes.  As I mentioned, Bernie loved baseball, so I tried baseball videos but he soon lost interest unless someone was sitting with him.  We often walked to a neighborhood restaurant or to the local movie.  Sometimes I had to persuade him to stay in the movie.

To vary the eating routine, in nice weather I packed a meal and we went to the local park  to eat.  He seemed to be able to focus longer when we were by the river watching the ducks.  In bad weather, we made a fire in the fireplace and ate in front of it.  For a while that worked well, but then he was insistent about tending the fire and he no longer was safe. Once, he attempted to move the logs around with his bare hands rather than the poker.  So, we had to stop making fires. 

For several years, our sons Eric and Joel took Bernie to Florida to Spring Training.  Day excursions with other family members and friends (without me) were tremendously helpful. Our children arranged times to occupy him as well and the out-of-towners came in periodically. This, along with day care, were tremendously helpful to me so that I could have some social life.  As his need for more care became apparent, I hired help for a few hours a day.  Then, we had overnight help a few nights  a week.  I didn't like that and he said to me that he liked it better when it was the two of us.

JB: I imagine your social life changed, too, Elaine. Let's take a break now and talk about that when we return for the conclusion of our interview. Readers, I hope you'll join us.

***

Part Two of my interview with Elaine

Osher Lifelong Learning Institute ( BOLLI ) | Brandeis University

Elaine sent me Mark Effron's piece on his father's Alzheimer's:   For Micah's Birthday, His Grandfather's Blessing [NYT, 1/24/14]   Effron is vice president and news director at WPIX-TV in New York and a former executive at MSNBC and New York Public Radio. He is also, coincidentally, married to Bernie's second cousin, Anne. Elaine says:  " This article reflects much of what we experienced."

My reminiscing about Bernie: Cultivating Memories While Gardening 6/15/2009

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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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Thanks Joan"..great article.  Since I have de... by Burl Hall on Tuesday, Feb 11, 2014 at 11:53:38 AM
Great! That's the reason that Elaine decided to op... by Joan Brunwasser on Tuesday, Feb 11, 2014 at 12:13:33 PM
These kinds of stories are emotional, sometimes he... by Sorgfelt on Thursday, Feb 13, 2014 at 9:55:21 AM
And now, here is another one: Turmeric Produces ... by Sorgfelt on Thursday, Feb 13, 2014 at 10:12:06 AM