Tips to take care of yourself and your loved one
Without question, caregiving is important and challenging work. It can be lonely, grueling and exhausting, yet most caregivers are steadfast in their determination to keep loved ones at home as long as possible. According to the Family Caregiver Alliance, about 15.7 million adults, 75 percent of whom are female, care for a family member who has Alzheimer’s or other dementia-related disease.
Becoming a caregiver is a significant adjustment and creativity, flexibility and support are critical tools to manage this new responsibility. Caregivers need to establish a program of self-care that includes a combination of outside resources and the help of family and friends. Many caregivers consider support groups as essential to their well-being for advice and companionship among others who share similar experiences and challenges.
Long Island Alzheimer’s Foundation (LIAF) in Westbury is a valuable resource for those affected by the disease, offering a variety of programs to benefit “participants”—those diagnosed with Alzheimer’s or dementia-related disease—and their caregivers.
The first thing Maria Nuzzolese learned as a caregiver was that she couldn’t do it alone.
“By nature, I’m capable and a doer, but no one is prepared for this,” she said. “The emotional and practical support I get from talking to other caregivers is invaluable.”
Grace Johnson, LMSW works extensively to assist caregivers at LIAF.
“While we generally rely on certainty and absolutes to help us feel safe, there’s no black and white with this disease. Caregivers must adopt a new level of expectation and acceptance with a disease whose manifestation evolves as it progresses,” she explained. “There may be long periods of stability, then steep declines. What worked yesterday may not work today and vice versa. You can’t get overly attached to strategies that worked in the past.”
“Find pleasure in the simple things, and in the moment,” suggested caregiver Patti Grieco. “I love the daylight through my windows and will take a few minutes over my coffee in the morning to look out the window and enjoy the outdoors, whether it’s a cardinal, trees or the sky. I don’t think about what else the day might bring.”
She adds, “If you have an aide, go out and do something for yourself; give yourself time to think. While taking one day at a time is a good coping mechanism, be sure to take the progression of the disease into consideration and plot your next steps.”
When defusing stressful situations, Johnson advised that when your loved one is making statements that aren’t true, don’t argue, as long as they’re safe.
“Think of it like playing make believe. It’s the most soothing, least frightening approach and better for everyone,” she said, adding that simple statements like “you’re OK” may be calming and reduce agitation. “A favorite snack, song or comfort item such as a doll, stuffed animal, book or baseball glove can also be soothing. Mirroring the person can also mitigate distress. If they’re pacing, for example, walk with them. If they’re sitting, place yourself at their eye level and speak slowly and clearly to them.”
It’s important, when possible, to not switch routines suddenly. Introduce a new caregiver slowly and don’t force or be insistent about a routine that’s not working. Try to maintain consistency in the day to day. Change of all kinds, including seasonal changes of daylight and time, can be problematic for people with dementia.
Adrienne Younggren creatively combines her husband’s care with her own activities. He colors at the kitchen table while she prepares dinner, they use the treadmill at the gym and she brings him along when she dines with a friend. They visit LIAF’s Memory Café together.
“You’ve got to use what you have while you have it,” she said. “I also use volunteers so that I can exercise, visit my children and take care of myself.”
Susan Matera keeps her husband occupied to alleviate boredom, which inevitably leads to agitation.
“We go to the store, watch a little league baseball game or visit the day program at LIAF,” she said. “We both enjoy getting out and the change of scene.”
Two years into caregiving, her need for help has increased so she brought in a respite worker to visit for two hours every other week.
“Get a loved one involved at LIAF or a similar program. I was nervous at first that he wouldn’t like it but he now goes three days a week. There is always a smiling face there for him,” said Matera. “I don’t know what I would do without LIAF.”
Tori Cohen is the executive director of the Long Island Alzheimer’s Foundation.