Alzheimer's Recasts Parenting Demands for Caretakers
In 2013, Kelly Landini had already been through the emotional wringer. Her father had recently passed after a battle with pancreatic cancer. But instead of a break after several years of watching her dad suffer, life had other plans.
“Toward the end of my father’s illness, I recognized that something was wrong with my mother,” said Landini, who lives in Shrewsbury. “I had hoped it was stress of being his primary caregiver for four years as he battled pancreatic cancer. It didn’t take long for me to recognize it was more than that as she became easily confused, forgetful. She was unable to manage money, stopped cooking and her appearance changed.”
Eventually Landini’s mother, Ginger, was diagnosed with Alzheimer’s and the full commitment of serving as her mother’s primary caretaker began.
But Landini also had someone else to care for with many needs: her young daughter Ava, who was just entering Kindergarten when her mother’s health began to decline.
“It is an incredibly difficult balancing act to juggle caring for my young daughter and my mother at the same time while working full time,” said Landini. “I have left my daughter with friends or dragged her to hospitals more than I probably should. There have been times when I just wasn’t as present as I should be, or I was short tempered or distracted. There is only so much you can give to your child, parents and work while keeping the house together and bills paid.”
September is World Alzheimer’s Month, an international campaign by Alzheimer’s Disease International (ADI) every year to raise awareness and challenge the stigma that surrounds dementia. According to the Alzheimer’s Association, 5.7 million Americans are living with Alzheimer’s and that number is projected to rise to nearly 14 million by 2050. Every 65 seconds, someone in the U.S. develops Alzheimer’s, and more than 16 million Americans, like Landini, provide an estimated 18.4 billion hours of unpaid care for people with Alzheimer’s or other dementias.
“It’s a progressive disease that can last a long time, anywhere from three to 20 years,” said Nicole McGurin, Director of Family Services for the Alzheimer’s Association of Massachusetts and New Hampshire. “It’s very unpredictable, and as the disease progresses, patients need 24-7 supervision. To have to meet that need and also meet the needs of a child of a certain age is very difficult. It’s so hard to balance the needs of a child with the needs of someone with Alzheimer’s.”
Alzheimer’s is life’s ultimate interruption, according to Deborah Lynn, a Massachusetts author from Wayland with a published memoir about caring for her mother after her Alzheimer’s diagnosis. The book, On Angels’ Wings, A Journey Through Alzheimer’s with My Mother, chronicles her almost 18 years of caretaking under the trying circumstances Alzheimer’s delivers.
No one is planning for Alzheimer’s, said Lynn, and adjusting to the reality of life when caring for a loved one with the disease requires a rethinking and refocus of priorities. For caregivers of young children, life is already unpredictable enough.
“Assemble a team,” said Lynn. “Caretaking is not done alone and no one can manage this on their own. It is a totally draining disease. Get educated and get a team together.”
While Lynn’s own children were adults when her mother was diagnosed, she often brought her granddaughter to visit her mother, and had to explain to her that dementia could make visits challenging.
“I would explain that grandmother is not always here with us. You might want to be gentle. She might not remember and know who you are. But it doesn’t mean she doesn’t love you. Give her that beautiful bright smile.”
Like Lynn, McGurin suggests caretakers seek support immediately.
“Don’t try to do this alone,” she said. “Reach out for help from other family and friends and the community. Tell them specifically what you need. Don’t wait for people to offer help. Often with Alzheimer’s, people want to help but don’t know how. They need to be given a task.”
And take care of yourself, adds McGurin.
“You can’t take of an aging parent with Alzheimer’s and a child, too, if you don’t take care of yourself first.”
Landini said in her circumstances, support is sometimes hard to come by and care outside of immediate family is expensive. Communities and first responders still lack a depth of understanding about Alzheimer’s.
The disease has dealt a devastating blow to her life, her family, and her daughter’s childhood as her daughter has watched her grandmother change in ways that are both confusing and upsetting because of the disease. But Landini says she still tries to find the positive in the situation where she can.
“My daughter’s level of compassion for seniors and dementia patients astounds me,” said Landini. “She is a natural with them and will do just about anything to bring a smile to their face, especially a person sitting alone or looking sad. I believe she has learned empathy, compassion and respect for her elders. These are valuable life lessons and I am a proud mother.”
Landini and others who are hoping for a cure for Alzheimer’s will walk in the 2018 Worcester County Walk to End Alzheimer’s on September 23rd. Similar events are being held around the country this month. For more information on Alzheimer’s, or if you need advice about caretaking, visit www.alz.org.