For caregivers of those living with Alzheimer’s, their loved one’s memory loss usually starts with small things, like forgetting how to use the coffee maker or the remote control. People with Alzheimer’s usually struggle to recall recent events and memories. However, as the disease progresses, those living with Alzheimer’s or other forms of dementia may forget familiar people, places, what year it is, or even where they live.
In a recent support group for caregivers, a wife shared a particularly difficult episode she had with her husband. While out walking near their home in Forest Hills, her husband had tried to board a city bus. When she intervened, her husband explained that he just wanted to go home—to Brooklyn, and the house he’d lived in as a child. In the support group, stories of coping with the confusion are common. Caregivers’ stories can be heart-wrenching.
An estimated 390,000 caregivers living in New York City care for someone with Alzheimer’s, or one of the other forms of dementia. Caregivers often make significant changes to their lives so they can cope with their loved one’s memory loss and keep their loved one safe. Often, caregivers have no one in their lives who truly understand the frustrating and tiring work of caring for someone with memory loss—even their family members may not understand the experience
“Caregiving is full of ups and downs,” said Sheila Williams, Program Director for the CARE NYC program at Sunnyside Community Services, “Often, it is a huge relief for caregivers to be able to share their experiences with others who are on the same journey.”
Support groups are one way for caregivers to stave off isolation. Biweekly, Vivian Morales of Sunnyside Community Services meets with a group of bilingual New Yorkers who share their experiences. Each member of the Spanish-speaking support group cares for someone with Alzheimer’s or another form of dementia.
“Many Latino caregivers are especially reluctant to join a support group. There is a belief among caregivers in the Latino community that family issues must remain private, dealt with in the home,” said Morales. “But for those that join the group they get the opportunity to socialize, educate themselves, and take time for self-care. The change in their lives is incredible and they are able to cope better with stressful life events.”
If you are caring for someone with Alzheimer’s or another form of dementia or memory loss, you can find support groups and services in your area by calling 877-577-9337 to reach the CARE NYC program. CARE NYC is a free service in all five boroughs.