My Mother Has Alzheimer’s: One Woman’s Story
By Kathleen Heins
Anita Gaillard, 59, of Carmel, Indiana, says that her mother’s journey with Alzheimer’s disease began some 12 years ago in subtle ways. During one family gathering some missing cornbread batter, destined for the refrigerator, was found in a cabinet amidst the pots and pans. As the disease progressed, family members noticed her mother turning to her husband to help her answer questions or fill in gaps in the conversations. Eventually her mother, now 88, could no longer do the simplest of tasks. “She stopped cooking, stopped doing laundry and slept a lot more,” recalls Gaillard.
The Alzheimer’s Association reports that an estimated 5.2 million Americans have Alzheimer’s disease. A type of dementia, the progressive brain disease causes problems with memory, thinking and behavior. Symptoms typically start off slowly and worsen over time. It can cause brain changes years, or even decades, before it’s diagnosed. Of the five million adults 65 and older who have the disease (it can occur earlier), two-thirds are women. The number of Americans with Alzheimer’s and other types of dementia is expected to triple by 2050.
As her mother’s condition progressed, Gaillard, who is married and works full-time as a public health worker, pitched in by helping to clean her parents’ home, taking her mom on errands and making meals. Gaillard and her husband considered other options for her parents, such as building an addition onto their own home or buying a new home with an in-law suite. Her father, a former banker now 89, nixed those plans deciding that he and his wife would enter a retirement facility. Her mother now lives in the facility’s memory care unit.
Today Gaillard’s mother has lost her language skills but tries to communicate in a jabber that is no longer comprehensible. It’s a language that her daughter has learned to translate. “I can tell by her tone if she is asking me a question or giving me a compliment if I am wearing a bright color,” she states. Now and then a word slips out; a gift from the person she was before the disease took its toll.
Wheelchair bound, her mother eats a diet of pureed food and can no longer feed herself; typical in the disease’s later stages. Much of her day is devoted to the staff assisting her with her basic needs. During the rest of the day, the once vivacious fifth grade teacher, Sunday school superintendent, and devoted mom — who never missed one of her children’s sporting events or getting the family to sit down to a home cooked meal each night — sits in the community area of her facility, engages minimally in some of the activities and naps.
Hip surgery and a subsequent hospitalization resulted in a rapid progression of the disease. That’s when her mother’s mobility became further compromised and conversation dwindled. While she could still talk, she often mistook Gaillard for her sister, Gaillard’s aunt. Otherwise strong and relatively healthy, it’s the changes that have occurred in her brain that have largely led to life as her mother now knows it.
Visits always start with a cheerful “Hi mom” says Gaillard. Her mom does not always make eye contact. “If I lean my cheek into her she will sometimes kiss me,” she states. Although Gaillard accepts her mom’s condition, she desperately misses the mother and friend she had before Alzheimer’s. “She was outgoing, delightful and fun to talk to,” she states. “I think we would have traveled together if she were well,” she adds wistfully. “She had great advice; a way of being objective which I grew to admire.” She also misses their many shopping excursions. “She had extraordinarily good taste so shopping with her was a blast; she had her own money so I was spoiled!”
Gaillard says she still gets flashes of her mom’s personality every now and then. “She smiles, she winks, but it’s very different than it was 10 years ago.” Sometimes her mom’s former self pays a visit. She recalls a recent glimpse when her dad accidently rolled over her mother’s foot with his motorized wheelchair. “She screamed and then looked at me, rolling her eyes,” recalls Gaillard.
To make some good out of a difficult situation, Gaillard has turned to volunteering for her local Alzheimer’s association. She feels that in addition to supporting other families, it’s important to speak for those who have lost their voice. She stresses the importance of continuing to talk to loved ones with the disease in the same way you did pre-diagnosis, no matter how far symptoms have progressed. “If I am pushing mom in her wheelchair and lean over and say ‘Lift your feet’ she will lift her feet,” she states emphatically. She laments the tendency that some have to treat adults with dementia as if they were children. “These are lives that were at one point very vibrant,” she states.
Once the diagnosis is given, Gaillard stresses that family members need to become experts about the disease. It’s only by educating yourself, she says, that you will be able to make the best decisions for your loved one’s care and well-being. It’s also vital to be knowledgeable about the disease’s progression (there are seven stages). “As things changed we weren’t devastated by it; we expected it,” she states.
Gaillard says she remains grateful that her dad had the foresight to enter the retirement community with her mom when they did. She recognizes that taking care of her mom every hour of the day would be more than she could handle emotionally and financially. “We’re spending every dime we make to have them live in a retirement community and my dad is almost out of money,” she states.
Although it’s difficult at times, Gaillard says she tries not to let her mother’s diagnosis overwhelm her life. “This disease can consume you,” she states. She acknowledges that she’s fortunate to have the help and support of her husband and two brothers and that her parents are able to live in a facility that provides around the clock care. To preserve her own well-being, she remains active with her church and sorority and enjoys reading and traveling. “I’m not afraid to travel but I’m more thoughtful of the number of nights I stay away,” she says. Despite her positive attitude and “can do” spirit, a trait she says she got from her mom, she still can’t help but worry. “I wonder a little too much about how it will be at the end,” she says.
Admittedly, her fear of one day receiving the same diagnosis also haunts her. “If I can’t remember a word I panic,” she says, “but I’m doing everything I can, based on the research and knowledge we have today, not to get the disease.” In the meantime, she does her best to “roll with it” day by day. After visiting her parents, she often hits the walking trails on the facility’s grounds before heading home; to unwind, reflect and learn to accept what she cannot change. Until there is a cure, she and her mom, and the millions of others affected by this disease, have no other choice.
For information and resources contact the Alzheimer’s Association at http://www.alz.org or (800)272-3900. Its information and referral service can also help you find a support group whether it be located locally or online.