Book offers ‘care and support’ for families
Susan DeWitt Wilder is hoping a new book, “Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementia,” can help people manage.
The book, published earlier this year, contains 101 essays on dealing with the disease, including one written by Wilder, a Scarborough resident who works as a planner for the Southern Maine Agency on Aging.
A dozen years ago, Wilder’s mother, Joyce DeWitt, now 80, was diagnosed with Alzheimer’s.
According to Angela Timashenka Geiger, chief strategy officer for the Alzheimer’s Association, at least 44 million people across the world have Alzheimer’s or dementia. That number, she noted, could increase to 115 million by 2050.
“As the baby boomer generation ages, Alzheimer’s will continue to escalate, threatening families, communities, and nations with economic, physical and emotional devastation,” she wrote in the book’s introduction. “That’s why it’s so important that this collection of stories exists — so that while we press forward with care and support for affected families, and strive to advance research that will one day lead to a cure, we’re sharing information, compassion and advice with one another. We’re speaking up about the realities of Alzheimer’s, and together, we’re breaking through the stigmas that exist.”
Wilder said the book is meant to inspire. All royalties from the book, she added, benefit the Alzheimer’s Association.
“It is not supposed to be a sad thing. A lot of it is bittersweet because of the subject matter. The title is “Living with Alzheimer’s & Other Dementias.” You are still the person you were. You lost a great deal. You have this different facet of your personality and it is up to others around you to change and deal with that.”
An example of that could be seen with Wilder’s father, Jim, who, with his wife’s Alzheimer’s, had to take over the role of caregiving and cook, a role that he was not accustomed to. In her essay, Wilder writes he took pride in this new role.
The essay, which was an excerpt of a longer essay Wilder wrote a few years ago in Southern Maine Agency on Aging’s newsletter, was “written to acknowledge my father and the way he stepped up and became a wonderful caregiver for my mother.”
The essay, titled “My Mother’s Kitchen” also notes how Wilder and her four sisters have recreated her mother’s kitchen because “cooking was such an important part of her life. My sisters and I cook as well. All of us like to cook.”
In the essay, Wilder said she used to call her mom for recipes or advice, both in and outside the kitchen. With the progression of the Alzhiemer’s, that has been lost. Recreating the kitchen, Wilder said, helps her remember those memories.
“It is making the strange familiar. It allows me to hold on to pieces of her that were being lost,” Wilder said.
After years of living in their own home in New Hampshire, Joyce and Jim DeWitt moved to Scarborough to be closer to Wilder and her husband, Paul Austin. After Jim died in May 2013, Wilder moved her mother to the Monarch Center, assisted living facility in Saco. She said advanced planning is important with a parent or loved one with Alzheimer’s, so when a spot in a memory care facility opens up, a quick decision can be made if the facility is a fit or not.
“I couldn’t have done this without my husband. He helped care for my father, so I could care for my mother,” Wilder said.
Alzheimer’s, Wilder said, can be difficult to deal with for both the individual and his or her family and friends.
“There is an ever-increasing number of people who are going to be diagnosed with Alzheimer’s. We need to change the way our society accepts and embraces them and supports them, not only for those with Alzheimer’s, but the caregivers, who are emotionally, physically and economically exhausted by the job they are doing,” Wilder said.
Because Alzheimer’s affects a person’s ability to remember things that many of us take for granted, Wilder said it is important to embrace what is not lost, rather than to get caught up with what has.
“For me it is a real gift for me to go and sing with her because I did that as a child. I treasure the time we can sit down at the piano together because there are many things she can’t do with me, like have a cohesive conversation or remember the names of her grandchildren. I cherish the things we still can do together,” Wilder said of her mother, whom she visits once or twice a week.
Wilder said at first she and her sisters and father were in denial that her mother, a nurse who ran a day center for adults with memory loss, had Alzheimer’s.
“The day I knew something was wrong was when I heard she couldn’t find her way out of the cellar,” Wilder said. “She was down there doing laundry and she couldn’t find her way out of the cellar. She eventually did, but that convinced me this was very serious and we had to pay attention. A family’s response is often to deny symptoms at first.”
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