The following is a vignette of an Alzheimer’s caregiver support group like those I lead. All the meetings are strictly confidential. The people and situations below are composites of many years’ worth of meetings and members, and no real names are used.
This was Chester’s first time at our caregiver support group. A man in his 70s, he told us about his wife who has Alzheimer’s disease and has become anxious whenever he is out of sight.
“She follows me everywhere. It’s driving me nuts!”
When other members nodded and murmured, recognizing the shadowing phenomenon he had just described, he was clearly relieved.
“Really? I thought I was the only one!”
He told the group that his daughter had taken his wife shopping to distract her while he came to the meeting. “But my daughter works and can’t come very often. I don’t know what I’m going to do if I can’t get away.”
Phyllis told him how she had found a woman from her church to stay with her mother two afternoons a week so that she gets a break. Someone else mentioned a couple of home-care companies in the area.
Before anyone had a chance to bring up day care, Chester said emphatically, “I’ll tell you this. I’m not going to dump her in some day care!”
I looked around the room. “Have any of the rest of you felt like that?”
There was a moment’s pause before Ellie spoke up. “Yes. I felt going to day care would humiliate my husband, and I couldn’t do that to him. He’s a physician, and I couldn’t picture him painting birdhouses or baking cookies. So I talked to the director of the best adult day program I could find and asked if they could come up with an appropriate way to engage him. They were willing to try.”
They organized the five highest functioning men into a discussion group, which Ellie’s husband enjoys. The rest of the time, he follows his own instincts about his purpose there: he visits each person in the program as though he were making his rounds at the hospital. That fills his need to do the work he loves, and the other participants are happy with the extra attention.
As Ellie finished her story, she began to tear up. I made a mental note to come back to her to talk about the ongoing grief that caregivers feel at the slow loss of their loved one.
Meanwhile, Sam was telling Chester, “It took me a long time to take the step, but now my wife goes to day care three times a week. She complains every time, but the staff says she enjoys it once she’s there. Her complaints get to me sometimes, but I know I need the time away from her.”
“Yeah, me too,” Adam said. “I still feel guilty about it even though my wife looks forward to it. She loves to bake—she makes the world’s best brownies—but she can’t do it alone anymore. She thinks I don’t belong in the kitchen, so she won’t let me help. But she loves to go to the program and let them help her bake.”
Lillian had been holding back, but now she admitted, “My husband never did adjust to day care. He just got too upset, so I had to take him out. But now I’ve hired a male companion from the local home-care place, and he comes three times a week to take Herbert for a walk. They get along pretty well.”
Chester had been in the group no more than 20 minutes, and he had already been exposed to some of the essential elements of Alzheimer’s caregiver support groups:
He was in a community of peers. Other members understood his feelings because they had been there themselves.
These were people who had found solutions to some of the problems he faced.
Yet for all the similarities, each case was different, and everyone respected that.
In a good support group, people learn to trust because they know they won’t be judged. They know they are in a safe place and can be honest about their feelings. But no one is required to speak.
Facilitators are careful to turn what could seem a thoughtless comment by one member—like Chester’s about day care—into evidence that most feelings are shared. That gives permission for members to express difficult emotions they might otherwise be reluctant to acknowledge—even to themselves.
Chester got to see that choosing day care fills a valid and pressing need—one he himself had—and is not a heartless decision families make without thought. He also learned that it sometimes works out very well.
Little did Chester know that the other members were benefitting from sharing their experience with him. It helped them to see they have gained competence in handling what might be seen as an ordeal. The best of them had become role models, and, as writer Patricia Brown Coughlan put it, “People in dire straits need role models.” When group members help other caregivers, that also gives increased meaning to their own experience. If Chester continued with the group (which he did), he would one day take on that role himself.
Robert Santulli, a geriatric psychiatrist at Dartmouth who specializes in the Alzheimer’s family, says, “No single activity an Alzheimer’s-disease family member can pursue is more important than regularly attending a support group.” Yet he emphasizes that “support groups are woefully underutilized.”
Why is that? There are many reasons.
- Caregivers may think they don’t need help, that asking for help is a sign of weakness.
- They would feel disloyal if they spoke openly with strangers about the humiliating problems they are having with their spouse or parent.
- They don’t want others to know their loved one has Alzheimer’s disease.
- They want to avoid hearing about the difficulties that lie ahead.
- They can’t leave the person alone, and they have no one to cover for them.
- They think a support group is just a gripe session.
Perhaps those who are reluctant will take heart from these real quotes from members of my groups:
“You and the group have helped me see I will get through this.”
“You all have been my lifeline.”
And the two comments I hear most often:
“This is the only place where I feel people understand what I’m going through.”
And at the end of a meeting, “I feel better.”
Maggie Sullivan has come to know Alzheimer’s intimately. She was caregiver and advocate during the eight years her mother lived with the disease. For the past 30 years, she has facilitated caregiver support groups for the Alzheimer’s Association, learning from the experience of more than 300 members of those groups. The opinions she expresses here are her own. Maggie is also a writer whose essays and articles have appeared in the New York Times and elsewhere.
