Jim Clark of Peterborough carefully feeds his mother dinner, coaxing her to eat small bites of soft food, and guiding a straw to her mouth and holding the cup steady as she drinks. It’s reminiscent of a parent feeding a child – a role reversal Clark has had to get used to as his mother has become more entrenched in the grip of her Alzheimer’s disease.
Clark has watched his mother, Jean Clark, fade over the years, losing memory, mobility, and eventually, the ability to care for herself in the most basic ways. Through it all, he and his wife have made the decision to keep her at home with them.
“If you told me ten years ago I would be helping her get dressed, helping her bathe or go to the toilet, I would have said it would never happen,” Clark said. “But I know she would do it for me. So, I’ll do it as long as I can. That’s the way she raised me.”
Clark is among a growing segment of the population: Children caring for their elderly parents.
About 15.7 million adults were providing family care for someone who has Alzheimer’s disease or other dementia in 2015, according to the Alzheimer’s Association.
And it’s a sizable undertaking.
In 2018, 16.3 million family members and friends provided 18.5 billion hours of unpaid care to their loved ones living with Alzheimer’s or another form of dementia.
“It takes a huge part of the day,” Clark, who also works full time at the Bennington Paper Mills.
Clark said he’s only able to keep his mother out of a full-time nursing care due to assistance from his wife, children, and the Monadnock Adult Care Center in Jaffrey, where his mother goes five days a week so Clark and his wife can work and earn an income.
It is becoming increasingly common for the center to serve adults with dementia who are being cared for either by a spouse or their children, said Chris Selmer, director of the Monadnock Adult Care Center. The center is there as a resource to give those caregivers a break, but also to provide them with connections to resources, and sometimes just advice, she said.
Ty Taylor, his wife Elise Taylor and his sister Nancy Hurd also use the Monadnock Adult Care Center once a week to provide care for their Ty and Nancy’s mother, Beryl Taylor, who also has Alzheimer’s.
“It’s a terrible disease,” Taylor said. “You feel so alone with it. There’s no cure. There’s no medicine for you to take. You just have it, and that’s it. You just have to go deal with it.”
Taylor and Hurd care for both their parents, and Hurd lives with them. Their father, Bob Taylor, is legally blind, and their mother began exhibiting signs of dementia about four years ago.
“She would have episodes where she would be in her house, but she didn’t think she was home, and would start asking to go home,” Taylor said. “It started to become more frequent.”
Since her diagnosis, Taylor said, she’s lost almost all ability to follow a conversation, and she doesn’t always recognize the people around her. She sometimes asks about speaking to her parents, who are no longer alive. Taylor said the only thing they can do with those requests is suggest to her that they will call them later or tomorrow – “Everything is ‘tomorrow,’” he said – as explaining to her over and over that they are gone is only upsetting for her, and she will not retain the information for more than a few moments.
“It’s stressful as it is, so everything you do is just trying to keep harmony,” said Elise Taylor.
Another family in the same situation has taken a similar track. Monique Fafard, 83, of New Ipswich, will tell you she’s independent. Quietly, behind the scenes, her children are working to allow her to keep that feeling.
“I still feel very capable of living on my own,” she said, in a recent interview at her son, Jim Fafard’s home in New Ipswich. “I feel very fortunate. My kids, they really watch over me.”
More so than she probably is aware of, Jim Fafard admitted. Her children have taken over paying her bills and shopping for her groceries and managing her appointments, and one of Monique’s grandsons lives with her. They prepare her food and ration it, because Monique will forget she’s already eaten or prepared something, and continuously make food. But Monique has managed to stay in her condo for now, without going into a nursing home or moving in with one of her children – two options she was absolutely against.
“She’ll tell you she’s independent. And we don’t see any value in telling her she’s really not,” Ann Fafard, Jim’s wife, said. “She believes she’s independent because she’s living alone, and that helps her retain some dignity in the situation.”
The stresses of these situations are enormous, families said.
Jim Fafard carries a reminder in his day planner, a list of coping strategies to remind him of the simple things – never argue, never reason, never shame, lecture or say ‘I told you already …’ or ‘You can’t …’
“It sounds simple, but it helps a lot,” Jim Fafard said.
There are many conversations with his mother that have become cyclical, Jim Fafard said. He and his wife received dozens of calls asking where her car was every time she went into the garage, until her family eventually renovated her garage, turning it into a covered porch.
“It’s out of sight, out of mind,” Ann Fafard said.
In many ways, Clark said, it’s like having to care for a child. His mother rarely speaks anymore, and that means he has to be hyper-aware of her at all times, especially as she’s become more fragile, and has had several injuries from falls.
“It takes a huge part of the day,” Clark said. “It’s a huge commitment, and it wears on you and it’s not easy. It’s definitely had an impact on my relationships. I have to catch myself to keep from yelling. And it makes me feel awful, because I know she can’t help it. It took me a long time to learn how not to get frustrated, and not to get mad.”
Part of the process, Clark said, is learning to navigate the resources available, so his family doesn’t have to do everything themselves.
For information on resources in your area for caregivers and seniors, contact ServiceLink Aging and Disability Resource Center in Keene at www.servicelink.nh.gov or 357-1922, NHCarePath at www.nhcarepath.dhhs.nh.gov, or the New Hampshire Bureau of Elderly and Adult Services at www.dhhs.nh.gov/dcbcs/beas or 271-7014.