Local authors, new book reveals what life with Alzheimer's is really like
PITTSFIELD -- Marjorie Allen’s husband David died as a result of Alzheimer’s disease in 2009.
She was there with him through the difficult ordeal.
Now she has two friends, Susan Dublin and Patricia Kimmerly, who have been diagnosed with early-onset Alzheimer’s, and they are also experiencing the continuing stages of the disease’s development.
All three decided that people should know about how the disease looks from the inside -- how it feels to have the disease, and the hopes and feelings that go along with it.
So they wrote a book -- "A Look Inside Alzheimer’s: I Know Who I Am Today, But What About Tomorrow?" It will be published Tuesday by DemosHEALTH.
At 80, Allen is a former copy editor at the Berkshire Eagle, and currently works in the obituary department. At 54, Dublin is a registered nurse living in DeWitt, N.Y. Kimmerly has a master of science degree in traumatic brain injury rehabilitation and adult education.
Their symptoms have forced both Dublin and Kimmerly to leave their jobs, Allen said.
When she heard about her friends’ diagnoses, Allen said, "Having just gone through it with my husband, I knew what they were facing. We decided we wanted to let the public know what it’s like to be someone with Alzheimer’s. People don’t have an understanding of that."
On top of the difficulties they face in trying to communicate with others and in dealing with the social stigma of having Alzheimer’s, there also come the financial challenges, Allen said. Many can’t get long-term care insurance after such a diagnosis, and the cost of care and treatment is very high.
The combination of challenges results in a range of emotional reactions for victims and their families, including frustration, anger and depression.
And then there is the really hard fact they have to face -- nobody gets better from Alzheimer’s. It will take their lives from them.
"It is very frustrating to realize that somebody you love has this disease and there is nothing you can do about it," Allen said.
It is a very hard fact to deal with for victims and their loved ones. They need support from an array of sources both medical and emotional. But with that support, they can continue to struggle on through the course of the disease progression.
Among other effects, daily routines of the victims, and therefore their families, evolve during the course of the disease. Sleeping and eating habits change. Favorite pastimes evolve.
"The thing is," Allen said, "if you can keep coming up with a way to establish a routine that works for you, it’s OK."
Through this book, Allen hopes people will "realize how important this disease is, and if somebody gets it, they are dependent on society to help take care of them. More and more people are being diagnosed with Alzheimer’s, and they’ll have to be taken care of."
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