- The Enterprise
- The Recorder
There was plenty of joking and laughing at the Alzheimer’s Support Group held at St. Mary’s Nursing Center in July.
These people, all who have found themselves wholly or partly responsible for a parent or a spouse because of dementia, greeted one another, cracked jokes and caught up like old friends as they grabbed a slice or two of pizza that the nursing center provides for the group and chose one of the blue seats that are set up in a large circle while they waited for the meeting to start.
They settled in to learn about the topic for the month — drugs being studied for dementia. Then, one by one, they exchanged ideas about how to deal with the latest challenge they have with the family member in their care. Some came alone. Some came with their parent for whom they are providing care.
Despite the light tone, the most commonly repeated comment from participants was, “It is so frustrating.”
That’s not surprising to Sharon Nicholson, a nurse at St. Mary’s Nursing Center and the founder and facilitator of the monthly support groups one meets the third Monday of each month at 6:30 p.m., another at 1 p.m. on the third Tuesday of the month. Nicholson started the groups two years ago because she felt that too often doctors weren’t telling people what to expect when they are given a diagnosis of Alzheimer’s disease or dementia.
“Once they tell you you have Alzheimer’s they just tell you to get your affairs in order ... These families flounder, trying to figure things out,” Nicholson said. “I can help these families understand. I can help them navigate.”
The group drew 21 participants at the first meeting, though there was little publicity. A second group was quickly added to deal with demand. Participants don’t have to have any connection to the nursing center to participate.
The challenges expressed by the 25 participants in July’s meeting were varied. They talked of guilt, disagreements among family members, financial concerns, frustration with doctors, concerns about medications and safety, problems with both the caregiver and the person needing care getting any sleep, calls to the police due to the paranoia and concerns about a genetic disposition toward dementia that in the future might put the group’s participants in the same place as their loved one.
“He can’t be left alone.”
“She’s paranoid about everything. She swears people are trying to get in her room.”
“She would barricade things up against the door.”
“You can’t rationalize with her.”
“She does not sleep. She is night-walking. We hear doors opening and closing all night.”
“There’s a certain amount of guilt you have ... and the siblings pile it on.”
“She is having conversations with people who aren’t even there.”
“My dad ... it’s really wearing on him.”
“She is at that curious stage, turning on and off lights.”
“I really think she needs to be in a facility.”
“My mother is forgetting. Names are gone.”
“She wants me right beside her all the time.”
“It’s a challenge ... every day.”
“I have frustrating days. I have days of zero patience.”
Nicholson offers support, uses a comment as a chance to explain different aspects of dementia or urges that a certain test be suggested to the doctor. She and the rest of the group applaud and cheer when one member relates how they made the decision, finally, to switch doctors after finding one particularly unhelpful.
One of Nicholson’s pet peeves is what she suspects are misdiagnoses. Several times during the evening she reviews the tests that are needed to diagnose Alzheimer’s disease, as noted also by the Alzheimer’s Association: a thorough medical history, mental status testing, a physical and neurological exam, blood tests and brain imaging to rule out other causes of dementia-like symptoms.
Jack Lawrence, a member of the group since its inception, found out this spring that he had been misdiagnosed with Alzheimer’s two years earlier. At one point during that period when he still thought he had Alzheimer’s, he insisted that Nicholson take him on a tour of the nursing center’s third floor, the floor for Alzheimer’s patients. “I could see him processing ‘this is my future,’” Nicholson said to the group, and then turned to Lawrence. “How do you feel now?”
“Glory, hallelujah!” Lawrence said, raising up his arms.
Alzheimer’s is the sixth-leading cause of death in the country and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed, Nicholson said, referring to information provided by the Alzheimer’s Association. “It’s horrible. It’s a tragedy,” she said. “There are no survivors with Alzheimer’s.
“All I can do is teach them how to understand and how to cope,” Nicholson said. “My job is to teach you to be a team, so you can keep your loved one at home as long as you possibly can.”
Janice Pruett and her husband, Art, have been attending since Nicholson started the group. “I originally went to support Sharon and her endeavor,” Janice said. “I was hooked the first night.”
At that time, two years ago, Janice was a long-distance caregiver for her parents who were living in Florida. During the last two years, she and Art moved her parents to Southern Maryland, and then, ultimately, to Cedar Lane Apartments, a senior living community in Leonardtown that offers seniors a place to live with or without supportive services or even in assisted living.
Janice works there at Cedar Lane as the facility’s move-in coordinator. But even so, the decisions were hard ones.
“I cried for days when I put my mom in Cedar Lane,” she said. “It’s life changing.”
Greg Havens attended the support group with his wife, April, and his mother, who had recently taken up residence at Cedar Lane herself.
“That’s why I love this group,” Havens said after Janice Pruett spoke. “I couldn’t have done this [referring to his own mother’s move] without hearing you guys go through it.”
In an email days after the meeting, Havens wrote: “Being a caregiver for a loved one with the AZ disease is very emotionally, physically and mentally stressful ... This group has provided us with a lot of emotional support since we started attending over nine months ago. These folks have shared their trials, tribulations, failures and successes from diagnosis to dealing with the eventual passing of their loved ones. This has provided a certain comfort to us by now knowing what to expect and how to handle it.”
Janice Pruett said the support group quickly became an important help to her family as they navigated all the issues that go along with dementia and finding the best care. “I truly think it is one of the most valuable resources in St. Mary’s County for people dealing with dementia,” she said.
From her own experience and what she has observed from other adults who must step up and care for their parents, she said she thought that just getting used to taking care of your parents, when they were the ones who had always taken care of you, is a major leap for many. “The acceptance of that role reversal is the most difficult part.”
As Nicholson wrapped up the meeting, she asked the group what subject they’d like her to focus on for the next month’s meeting. Past topics have included basic education about dementia, eating difficulties, making connections between generations, advance directives and end-of-life care.
For a moment, everyone is quiet as they think. Debbie Pitts, who sat next to Nicholson during the meeting and whose husband has Parkinson’s disease, is the only one with a suggestion.
“How about depression?”
Called to care
This story is the first in a three-part series about people in the community who have become caregivers for another adult — a parent, adult child or spouse — due to the effects of aging, disease, injury or disability. These stories are meant to acknowledge the sometimes extraordinary, sometimes exhausting, challenges faced by those who take on the role of caregiver.
Part 1, “Strength in numbers,” considers what adult children may need to deal with as their parents age.
Part 2, “Love story,” looks at how disease or injury can require one spouse to take over all the responsibilities in a marriage.
Part 3, “You can do this,” looks at the issues facing parents who have an adult child who cannot live independently.