{"id":1440,"date":"2017-06-12T07:45:52","date_gmt":"2017-06-12T11:45:52","guid":{"rendered":"http:\/\/www.silvercentury.org\/2017\/09\/what-good-are-support-groups\/"},"modified":"2018-05-01T09:46:48","modified_gmt":"2018-05-01T13:46:48","slug":"what-good-are-support-groups","status":"publish","type":"post","link":"http:\/\/78.142.243.82\/~silvercentury\/2017\/06\/what-good-are-support-groups\/","title":{"rendered":"What Good Are Support Groups?"},"content":{"rendered":"

The following is a vignette of an Alzheimer\u2019s caregiver support group like those I lead. All the meetings are strictly confidential. The people and situations below are composites of many years\u2019 worth of meetings and members, and no real names are used.<\/em><\/p>\n

This was Chester\u2019s first time at our caregiver support group. A man in his 70s, he told us about his wife who has Alzheimer\u2019s disease and has become anxious whenever he is out of sight.<\/p>\n

\u201cShe follows me everywhere. It\u2019s driving me nuts!\u201d<\/p>\n

When other members nodded and murmured, recognizing the shadowing phenomenon he had just described, he was clearly relieved.<\/p>\n

\u201cReally? I thought I was the only one!\u201d<\/p>\n

He told the group that his daughter had taken his wife shopping to distract her while he came to the meeting. \u201cBut my daughter works and can\u2019t come very often. I don\u2019t know what I\u2019m going to do if I can\u2019t get away.\u201d<\/p>\n

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.<\/p>\n

Before anyone had a chance to bring up day care, Chester said emphatically, \u201cI\u2019ll tell you this. I\u2019m not going to dump her in some day care!\u201d<\/p>\n

I looked around the room. \u201cHave any of the rest of you felt like that?\u201d<\/p>\n

There was a moment\u2019s pause before Ellie spoke up. \u201cYes. I felt going to day care would humiliate my husband, and I couldn\u2019t do that to him. He\u2019s a physician, and I couldn\u2019t 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.\u201d<\/p>\n

They organized the five highest functioning men into a discussion group, which Ellie\u2019s 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.<\/p>\n

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.<\/p>\n

Meanwhile, Sam was telling Chester, \u201cIt 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\u2019s there. Her complaints get to me sometimes, but I know I need the time away from her.\u201d<\/p>\n

\u201cYeah, me too,\u201d Adam said. \u201cI still feel guilty about it even though my wife looks forward to it. She loves to bake\u2014she makes the world\u2019s best brownies\u2014but she can\u2019t do it alone anymore. She thinks I don\u2019t belong in the kitchen, so she won\u2019t let me help. But she loves to go to the program and let them<\/em> help her bake.\u201d<\/p>\n

Lillian had been holding back, but now she admitted, \u201cMy husband never did adjust to day care. He just got too upset, so I had to take him out. But now I\u2019ve 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.\u201d<\/p>\n

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\u2019s caregiver support groups:<\/p>\n

He was in a community of peers. Other members understood his feelings because they had been there themselves.<\/p>\n

These were people who had found solutions to some of the problems he faced.<\/p>\n

Yet for all the similarities, each case was different, and everyone respected that.<\/p>\n

In a good support group, people learn to trust because they know they won\u2019t be judged. They know they are in a safe place and can be honest about their feelings. But no one is required to speak.<\/p>\n

Facilitators are careful to turn what could seem a thoughtless comment by one member\u2014like Chester\u2019s about day care\u2014into evidence that most feelings are shared. That gives permission for members to express difficult emotions they might otherwise be reluctant to acknowledge\u2014even to themselves.<\/p>\n

Chester got to see that choosing day care fills a valid and pressing need\u2014one he himself had\u2014and is not a heartless decision families make without thought. He also learned that it sometimes works out very well.<\/p>\n

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, \u201cPeople in dire straits need role models.\u201d 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.<\/p>\n

Robert Santulli, a geriatric psychiatrist at Dartmouth who specializes in the Alzheimer\u2019s family, says, \u201cNo single activity an Alzheimer\u2019s-disease family member can pursue is more important than regularly attending a support group.\u201d Yet he emphasizes that \u201csupport groups are woefully underutilized.\u201d<\/p>\n

Why is that? There are many reasons.<\/p>\n