One of the things that strikes you is the laughter. It’s frequent and spontaneous. And, if you have never been to a support group for people in the early stages of Alzheimer’s disease, it’s probably unexpected.
When the eight members of the Alzheimer’s Association early-stage support group gathered recently in the Denver metro area with two group facilitators, the conversation covered a lot of ground: from family dynamics to living accommodations, and from eating in restaurants to frayed tempers.
There are 73,000 Coloradans living with Alzheimer’s disease, a good number of them in the early stages. They may live with a spouse or partner, with children or in assisted living. But, after listening in to their conversation about their shared condition and common concerns, it’s clear that this group has a unique bond that comes with their diagnosis.
These people “get it”
Their backgrounds are almost irrelevant. They include former engineers and teachers, homemakers and war veterans. What they share is more personal. Only someone living with Alzheimer’s truly “gets it.” If you’ve never experienced getting lost on your way home from your workplace, driven down the wrong side of the highway, failed to recognize your own home or forgotten how to order fish off a restaurant menu, you can’t appreciate the challenges that people living with dementia face every day. And that’s part of the appeal of an early-stage support group. These people can relate.
“The people in the group are so glad to be here and talk to people going through the same thing as them,” said Hallie Pasko, co-facilitator of the early-stage support group, former caregiver for both her mother and mother-in-law, and volunteer teacher of the Alzheimer’s Association “Savvy Caregiver” class for 14 years.
Karen, one member of the support group, related her experience of going to lunch with her daughter and granddaughter, and being unable to explain what she wanted to order.
“We all laughed,” said Karen, “knowing that I was coming to this meeting. This is my normal now.”
“Most of my friends laugh with me,” said Jerry of his memory lapses.
Alzheimer’s is no joke
Alzheimer’s is the sixth-leading cause of death in the U.S., and the only major disease without a prevention, treatment or cure. For those reasons, it’s no laughing matter, and the response from those living with the disease is not always lighthearted.
Gordy Gibson, the group’s co-facilitator, is in the unique position of being a volunteer instructor for the Alzheimer’s Association while himself living with a Mild Cognitive Impairment (MCI) diagnosis. His mother passed away with Alzheimer’s, and it is uncertain whether his MCI, which can involve problems with memory, language, thinking and judgment that are greater than normal age-related changes, will progress into full-blown Alzheimer’s.
“I struggle with laughing at situations,” said Gordy. “I get irritated, which can lead to a back-and-forth spiral, usually when I can’t do something I need to do. But I don’t want to take it out on her,” said Gordy, referring to Bonnie, his wife of 40 years. “She’s my caregiver. I don’t want to wear her out.”
Gordy brings a unique perspective to the support group. Now 63, he recently retired from his career as a high school history teacher and athletic coach following his MCI diagnosis, which made it too challenging for him to continue working. Because of the changes he’s experienced due to MCI, he can personally relate to the situations his support group encounters.
“Gordy brings that ‘hey, me too, I’m going through this with you’ credibility to the group,” said Pasko. “He can start a discussion because the group can relate to him more than they can to me.”
Changing family dynamics
Gordy is candid about the changes that MCI has wrought for his family. He and his wife have used Gordy’s MCI diagnosis as inspiration to reexamine their relationship and figure out strategies to cope with the changes he is experiencing.
“It’s so easy to fall into patterns of behavior that aren’t healthy,” Gordy acknowledged.
He also noted that while his wife and two sons are extremely engaged with him as he navigates through MCI, his daughter has chosen to steer clear of the process. Having observed her grandmother’s journey with Alzheimer’s disease, Gordy believes it may be too difficult for his daughter to imagine her father on the same path. So, while they remain extremely close, MCI is not a topic of conversation for them.
“She said, ‘Dad, I don’t want you to tell me about testing or any of it. I don’t want you to talk about it,’” said Gordy. “I can honor that.”
However, Gordy did get positive feedback from his father when Gordy decided to pursue a diagnosis. “I’m glad you’re doing this,” he told Gordy. “We missed it with your mother.”
Gordy is not alone in experiencing family challenges.
Being helpful or…
One challenge that many members of the support group face is suggestions or comments from loved ones when they struggle with finding the right word or responding to a question. Sometimes, the offering is seen as truly helpful. At other times, it comes across as impatience on the part of caregivers. The members of the early stage support group offered suggestions to caregivers on how to approach the situation.
When he appears to be stumped in a conversation, Mark noted that “my wife will say what she thinks I wanted to say. It may be what I was searching for, or maybe not. Sometimes I’ll just say ‘help me out.’”
Nancy has found a rhythm with her husband. She’ll look to him and say “help me…help me.”
From Gordy’s perspective, he’d encourage caregivers to take a more measured approach.
“The best thing I can do to help a person (with Alzheimer’s) is to pause three seconds and not jump in,” he said. “Ask a question, like ‘what are you feeling right now?’”
How people with Alzheimer’s want to be seen
When people are diagnosed with Alzheimer’s or another form of dementia, some friends and family members do not react with the understanding that the disease has been slowly and silently progressing for as long as 20 years. It doesn’t happen suddenly, like a broken leg. However, the shock of the diagnosis can take loved ones by surprise and lead them to react as if the disease is in the final stages. Don’t make that mistake.
“When you’re in the early stages (of Alzheimer’s or Mild Cognitive Impairment), you’re still with it,” said Gordy. “It’s not ‘whoosh’ – all the way to the end. I can still do so much.”
Karen, a member of the support group, put it more succinctly: “Don’t treat me like I’m dumb.”
Understand that the changes are unnerving to your loved one
Perhaps the most important message that people in the support group want to convey to their loved ones is that the confusion that comes with Alzheimer’s and other forms of dementia is frightening and disconcerting to them. And sudden changes made by family for the benefit of the person with the diagnosis may not always be welcomed.
“People in the early stages of Alzheimer’s are very aware of the changes going on in themselves,” said Pasko. “Those changes can be very frightening to them.”
“I was pissed for a long time when I got my diagnosis,” said Mark, who was dealing with multiple pressures, including a daughter who directed him to sell his home and move to a new state to live in an assisted-living facility, a son who seems more focused on money than his dad’s health, and a wife who is frustrated by the many changes.
“I’ve always been pretty closed and quiet,” Mark said, “but my filters are evaporating.”
The problems posed by relocating were troublesome for Dawn as well.
“I miss my friends from the neighborhood I lived in for 50 years,” she said. “I had a better support system there. I’m madder than I’ve ever been in my life. I don’t know what to do with that mad.”
For George, the challenge is navigating his Alzheimer’s diagnosis while his wife copes with significant health issues of her own.
“My wife has always been the stronger of the two of us,” he said. “She’s the general and I’m the private. I take care of her – clean and cook and drive. I don’t think I’m that far along (with Alzheimer’s), but my wife might say otherwise.”
At the end of the session that covered issues ranging from tips on placing handy bulletin boards all around the house to confusion caused by seeing one’s own reflection in windows at night, the group disbanded with hugs, looking forward to the next meeting.
“There’s a lot of laughter and a lot of tears,” said Gordy. “But there’s no better way to share that than with someone’s who’s there too. We can listen.”
Learn more about an early-stage support group
The Colorado Chapter of the Alzheimer’s Association hosts several eight-week support groups for persons living in the early stages of Alzheimer’s:
- Longmont: Mondays, 10 to 11:30 a.m., starting Jan. 27, Longmont Senior Center, 910 Longs Peak Ave., Rooms D and E. Contact Ralph Patrick at 303-813-1669, ext. 9612 or firstname.lastname@example.org to schedule an initial interview.
- Westminster: Mondays, 1 to 2:30 p.m., starting April 13, Covenant Living of Colorado, 9153 Yarrow St., Westminster. Contact Ralph Patrick at 303-813-1669, ext. 9612 or email@example.com to schedule an initial interview.
- Denver: Thursdays, 2 to 3:30 p.m., starting Feb. 6, Alzheimer’s Association office, 455 N. Sherman St., Suite 500, Denver. Contact Courtney McKibbin at 720-699-9403 or firstname.lastname@example.org.
The Colorado Chapter also will host a Living with Alzheimer’s for People with Alzheimer’s class from 2 to 3:30 p.m. on Thursdays, Jan. 9, 16 and 23, at the Association’s Denver office. Contact Courtney McKibbin at 720-699-9403 or email@example.com.