JOAN’S WEEKEND BLOG – FEBRUARY 9/10, 2008 – ANOTHER READER TELLS HER STORY

Thanks to Tony having the courage to share his story (see below for Wednesday, February 6th), another reader and her AD husband have bravely agreed to reveal themselves and their struggles. This story is of particular interest because David, the spouse struggling with AD is able to express his feelings related to his battle with AD. Please read below for their story, that appeared in the Alzheimer's Association Newsletter of their local chapter:

DAVID AND MARY’S STORY
OF LIVING WITH AN 8 YEAR
OLD DAUGHTER AND
ALZHEIMER’S DISEASE
David is 53, and has early onset         
(sometimes called young onset),
early stage Alzheimer’s disease.
His wife Mary is 39. They are the
proud parents of Jeannine, who
is 8. David says that life before
Alzheimer’s was great. He says life
now that he has Alzheimer’s is still great. This is a story about how David wants to
make his life and the lives of his wife and young daughter, and even possibly our
whole community, better.
Talking with David about Alzheimer’s, David says he knew this would happen.
He reports that both his Mother and brother had Alzheimer’s disease, and inside,
he just knew this would happen. David’s short-term memory gives him quite a bit
of difficulty, and he has given up driving. He says that the forgetting is tough, the
change in lifestyle is tougher, and he has had to retire from his work as a chef.
David credits the quick use of medication for his general well-being, and feels that
everyone should at least consider using Alzheimer’s medications while they are
very early in the disease.
Mary is developing her own tactics for living with a spouse who has Alzheimer’s
and she is very anxious to start up a network of other young spouses, 55 and
younger, to get together and share resources.
As for their young daughter, Jeannine, David and Mary are concerned about how
this impacts her. David’s short-term memory loss and difficulty thinking can make
some pretty normal communication problems between children and grownups
even worse. Jeannine will get angry sometimes when David repeats himself or
forgets when he told her something. In general, Mary says Jeannine handles it
really well. The Alzheimer’s Association is bringing a children’s education program
to Jeanine’s school, so that her friends can have a better understanding of
Alzheimer’s.
“It is not horrible. You are alive, and with the drugs, you can live a long time. I can
still run around, I am physically fit, but I can get tired, too,” says David.
David is ready to raise awareness of young onset Alzheimer’s disease or other
dementias. He urges others to make contact with the Alzheimer’s Association
so that he can begin to build a network of friends who are living with dementia.
Fundraising, awareness building, talking with local politicians, and social events
for people with young onset Alzheimer’s are of particular interest to David, who is
looking for the right way to spend his time now that he is retired. “People should
know about it, and they need to know that they can have a good life”.
For information on how you can join together with David on a project as a person
with young onset, or to work with Mary as a young spouse, call the Alzheimer’s
Association, and ask to speak with a member of the program staff. If you are interested
in participating in a group for young families, please call Leilani Pelletier 716- 626-0600.

Feedback to joan@thealzheimerspouse.com 

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IMPORTANT EOAD (EARLY ONSET ALZHEIMER'S DISEASE) ANNOUNCEMENT – WEDNESDAY, FEBRUARY 6, 2008

Tony, one of our regular readers and Message Board contributor, bravely opened up his life to a reporter in his town, because he thought that spreading the word about the terrible toll EOAD takes on families was more important than protecting his privacy. To all of you who are struggling with EOAD (Early Onset Alzheimer’s Disease) and the unusual problems it brings with it – working full time; raising children; trying to help those children navigate the treacherous AD waters; losing a soul mate so early in life – I urge you to read these two articles.

We have many readers who are in the same position as Tony – in the prime of life, when AD descended and enveloped his entire family in a dark, never-ending cloud. It is Tony’s wish that everyone in the Alzheimer’s Community LISTEN to his pleas for awareness and provide help for the younger AD sufferers and their caregivers. Caregiver support groups for younger spouses, Day Care for younger patients, and support groups to help the children deal with their emotional issues are desperately needed. Meet Tony and read his story:

CLICK HERE FOR THE CURRENT STORY.

CLICK HERE FOR THE PREVIOUS YEAR'S STORY.

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