I’ve run family support groups for people caring for someone with dementia and/or Parkinson’s disease for many years. The group composition has always included people of all ages and not distinguished by category; i.e., spouse, parent. There has been a shift to younger participants in the past 10 years; the “sandwich generation” seeking support as they juggle family and work along with caring for a parent or other elderly relative or, more recently, a young spouse or sibling. In years past the average age was early 80’s, now it’s closer to early 70’s.
There has always been concern for the older adults in the group since they, too, are vulnerable. They have their own health issues to cope with - heart disease, diabetes, arthritis. As well, they tend to be determined to handle caregiving responsibilities on their own, only accepting help after much cajoling by children, friends, or their doctors.
Younger members are sometimes more vocal. “I need time for myself,” “I can’t do it all.” A few, like their older counterparts take on the whole burden believing that they are best suited to the task, even when help is affordable and available. They, too, are more at risk for stress-related problems.
Groups develop their own balance; each member brings to the discussion a point of view; a story about their loved one, a recounting of events, questions that hadn’t come up previously or how they dealt with professionals/institutions. Humor is an imperative and this group, regardless of the composition, has always used humor to deflect the difficult, hold up to scrutiny the absurd and laugh with each other just for the sake of it.
Recently the group I currently run became unbalanced with the sudden death of one of our own. Not an older person, as we might have anticipated, but Tom, at 63, of a massive heart attack. His death was a shock. Tom was steady, reliable; he had a great sense of humor and told good stories about his parents and their various escapades. He’d easily tell newcomers, “I’m Tom and I take care of my mother who has dementia and my father who has physical problems. My mother is a hoarder.” And then he’d show a picture of their basement which told its own story.
A week before Tom died, he was found in a back room at his volunteer job bent over, his breathing labored but when colleagues wanted to call 911 or at least take him to his doctor, he refused. He recovered; the episode wasn’t even mentioned in group and, according to friends, was never spoken of after that.
Tom always got to the door of the meeting room before everyone else. He helped me set up the room and said, “I’ll get the chairs, you can do the “perfect circle.” (I aspire to the idea of a perfect circle).
We’d chat while setting up the room; he’d talk about his volunteer work at the thrift shop where another group member, Betty, also worked. Tom had invited her to join the group after learning that her husband had been diagnosed with early stage dementia. Tom and Betty had become best friends and Betty’s husband felt that Tom was a great friend to him and sometimes asked when they were going out some place, “is Tom coming?”
In all the years I’ve run support groups not one member died while still attending. I would later learn of someone who had died but none at the time so this loss was new to me.
The first night the group met after Tom died, I paused outside the building and looked for him. I knew better but I looked anyway. I heard his voice though, “I’ll set up the chairs, you do the “perfect circle.”
Betty arrived looking disoriented and said how lost she felt. Then others came, a group of 13, all seeking resolution to the shock of loss. It was then that Betty told us of the warning signs and his refusal to get help. The room was silent but no one commented though it felt hard to not want to chastise someone who was so blatantly negligent.
We couldn’t make sense of his death - a caregiver who knew better. What would stop him from getting help? A young man who appeared to be in good health, a core member of the group, a love for his family, especially his grown children. Tom offered up good ideas and funny quips that inevitably lightened the mood.
Loss is often compounded; one loss reminiscent of others. If a person is old and dies suddenly, we say, “maybe it’s better this way.” But when a younger person dies unexpectedly, we ask,” Why? How? He was too young.”
It’s hard to look at the “empty chair” and we’ll never understand the details of Tom’s decisions. We know troubles of all kinds may visit us individually but less often, the group itself.
The power of a group is support and consistency. It’s in that space and in that spirit that I remind myself that this group has the capacity to heal. We circled the wagons. We mourned and honored, knowing the gap will slowly close. We talked about the losses that this one evokes. Then we breathed deeply.