They meet in a room with a penthouse view. Manhattan’s jagged skyline magnificently backdrops the Bronx’s expansive green spaces. It’s a beautiful setting and serves as a periodic haven where overtaxed caregivers can talk about the effects of a relentless disease.
It’s there, on the top floor of Montefiore Medical Center’s Children’s Hospital, that the New York City Chapter of the Alzheimer’s Association holds a support group meeting for caregivers of Alzheimer’s patients.
The meetings, especially in such a beautiful setting, provide a welcoming outlet where caregivers can share their experiences, many of which are colored by frustration and pain.
Alzheimer’s disease is the most common form of dementia, according to the Alzheimer’s Association. Some four million Americans have Alzheimer’s and 100,000 die annually from the disease, the association reports, adding that one in three Americans will see the effects of the disease through an older relative.
Alzheimer’s mainly affects the neurological system and reveals itself through memory loss, behavioral changes, and loss of cognitive functions.
Medications can help with memory loss, but there is no cure for the disease. Caregivers for Alzheimer’s patients, many of whom are close relatives to their charges, must deal with the decline and then death.
Mark Goodwin, a social worker at Montefiore’s Sickle Cell Center, has volunteered his spare time to facilitate the caregiver support group for the past three years.
The group is “an open and safe place” where people can empathize and listen to each other, Goodwin says. They know “somebody else is in the same situation. They can cry. They can laugh.”
Goodwin says a handful of people consistently attend the Alzheimer’s support group meetings at Montefiore. Several others come from time to time. “If a few people show up and talk about what’s on their mind, to me, that meets the goal,” he says.
Twice a month, the group gathers and its participants simply talk to each other. There is no fixed schedule or particular topic. Every now and then, there are guest speakers.
As Alzheimer’s progresses through the early, middle, and late stages, it can be extremely exhausting for caregivers as well as family members and other loved ones, Goodwin says. Very often, he says, caregivers are under so much pressure that it can result in stress and interfere with other parts of their lives.
“So many people have the frustrations on their mind and have no one to talk to,” Goodwin says. “The support group is a way to alleviate some of that pressure by knowing that they are never truly alone.”
One participant, who chose to remain anonymous, has been coming to the support group since her husband of over 40 years was diagnosed with Alzheimer’s three years ago. She admits that it is “very difficult” and at times, she gets angry.
“It’s frustrating just to see him going away and I can’t do anything about it,” she says. “This is my partner and I miss him very, very much.”
She finds that coming to the support group allows her to learn new things about the disease as well as different ways to carry the weight pressing down on her as the primary caregiver.
Another regular participant, who also chose to remain anonymous, comes to the group meetings to cope with her 90-year-old mother’s dementia.
“She used to crochet, sing in the church choir,” she says. “It bothers me just to see her lay in the bed and watch TV.” But for this caregiver, taking part in the support group meetings allows her to realize that, in comparison to some other people’s situations, hers may not be that bad.
Goodwin says that what he finds to be the most common characteristic amongst the participants is an extreme fear of the “unknown.”
The path Alzheimer’s can take is unpredictable, he says. Each patient is different. By attending the support sessions, caregivers can find it to be “emotionally stabilizing.” Ultimately, they can develop “coping strategies” and attempt to find a balance within their own lives. Eventually, “there is acceptance,” he says.
Ed. note: The group is held every first and third Wednesday of each month from 5 to 6:15 p.m. at Montefiore’s Children’s Hospital on Bainbridge Avenue and is facilitated in both English and Spanish. For more information, call Mark Goodwin at (718) 920-7377.
For more information on Alzheimer’s, contact the Alzheimer’s Association at (800) 272-3900, or go to www.alz.org.

