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When caregivers no longer recognize their loved ones, how do they cope? Some cry through the frustrations, or laugh at the little things they can’t control. Many catch glimpses of their loved one still there, behind the disease. The fourth of a five part series on living with Alzheimer’s in North Carolina.
By Michelle Cerulli
In 2011, fifteen million people in the U.S. provided primary or secondary unpaid care for a loved one with Alzheimer’s or another type of dementia.
Many of these caregivers – like Jeannette Barbour – want to keep their loved one at home for as long as possible. They often feel like they are the only ones who can care for the patient, or that they should be able to, even though once diagnosed, Alzheimer’s patients may live anywhere from eight to 20 additional years.
Take Joe Clark of Durham. Like many others, Clark had been an Alzheimer’s caregiver to his wife for several years before realizing his limits. His days were long and often difficult, but Clark wanted his wife to be able to stay in their home. After a visit to the emergency room for full-blown pneumonia and an extensive recovery period, he realized he needed more help.
“I felt like a failure there for a while because I knew people who had taken care of their spouses longer,” Clark said. “But the doctor said, ‘Everybody has their own limits, and you were having to look after her 24 hours a day.’”
Veteran social worker Lisa Gwyther the director of Duke University’s Family Support Program for families caring for Alzheimer’s patients, said she has found that guilt and grief are endemic among the most responsible and committed caregivers.
“People feel guilty about not recognizing the problem early enough, about what they feel is going back on promises that they couldn’t have predicted, about losing their patience and getting angry,” Gwyther said.
Additionally, some caregivers feel alone in their struggles with the disease. They may not realize there are resources, such as support groups and outside help, that can make coping with a loved one’s Alzheimer’s diagnosis more bearable and less lonesome.
January 2011, Grey Stone Baptist Church, Durham
About 15 minutes into a support group meeting for Alzheimer’s patients and caregivers led by Lisa Gwyther, Jeannette Barbour quietly slipped into the room.
Thinly cushioned chairs formed a loose circle, around which eight caregivers, three patients, the co-leaders and a neurology intern sat. Colorful children’s paintings with phrases like “I love Jesus,” and “Jesus is my Savior,” decorated the walls.
Though the meetings consisted of a loyal core group of long-time members, there were often a few new faces each month.
“Are we the youngest ones here?” a new caregiver asked the group. His wife sat beside him, expressionless, silent.
“You might be,” said Gwyther, cheerily.
Introductions were made; upcoming birthdays and special dates revealed. Then Gwyther shared the meeting agenda. Caregivers would stay in this room with her and her intern. Their loved ones―the three Alzheimer’s patients, though she didn’t explain it this way―would form their own small group with co-leader Edna Ballard in a room across the hall.
This structure gave patients time to meet and converse on their own with Ballard’s gentle guidance. It also provided caregivers with an hour to speak freely about their frustrations with the disease and get support from others who have been there.
When Jeannette entered the room, the group was offering advice to the new caregiver.
Jeannette listened as the caregiver, who seemed overwhelmed and anxious, detailed his wife’s new and strange behaviors. He said that during the day, while he was at work and his wife was in the care of his mother, she stood by the door for hours. The caregiver asked the group what he should do.
“If she’s not trying to leave your mother’s house, let her stand by the door,” one caregiver said.
“She might find some comfort in that,” said another.
A few minutes later, one group member asked if there are any activities the new caregiver’s wife still enjoyed.
“She loves to watch cooking shows,” he said.
“You can get DVDs of those to play for her,” someone offered.
“You had videos for Chuck, didn’t you, Jeannette?” said Joe Clark, former caregiver and long-time group member, from across the room. Some caregivers, like Clark, continued attending the monthly meetings, even after a loved one had died.
“Yes, I would put on a video tape for Chuck,” Jeannette said. “He really enjoyed that.”
The new caregiver asked questions and the other members provided answers the best they could, answers they had learned themselves the hard way, from earlier stages of their loved one’s disease.
At the end of the hour, the new caregiver’s wife walked back into the room with Ballard and the two others. She was smiling and visibly excited and leaned over to tell her husband something as soon as she sat down next to him.
A replacement social network
Gwyther said support groups are a way for families affected by Alzheimer’s, and particularly caregivers, to learn from one another, exchange resources and realize they’re not alone.
“So many of these families have lost their friends because when a person’s behavior is different, friends often don’t know how to respond,” said Gwyther. “So for many people, it’s a way to develop a replacement social network for friends that have dropped off.”
Meetings often include time for open discussion, during which caregivers and patients can talk about their difficulties, frustrations and successes. Caregivers might share ideas for coping with the challenges of the disease or discuss informational resources, such as elder care lawyers, respite care options and helpful websites. Some group leaders invite guest speakers to talk about specific aspects of the disease or caregiving.
The Orange County Department on Aging hosts three caregiver support groups, which meet at the Robert and Pearl Seymour Center in Chapel Hill and the Central Orange Senior Center in Hillsborough. A dementia caregivers support group is held on the third Thursday of each month at the Seymour Center and on the first Tuesday at the senior center. Both groups are open to new caregivers, and supervision for dementia patients during support group times can be arranged. The third support group, which has limited enrollment and meets every other Friday at the Seymour Center, is for couples with one spouse experiencing some mild cognitive impairment.
UNC’s Memory Disorders Program, Duke’s Family Support Program, Alzheimer’s North Carolina, Inc., and the Eastern North Carolina chapter of the Alzheimer’s Association also offer support groups for patients and caregivers, most of which are open to new members.
“You get ideas about how others have handled an issue,” Joan McCormick said. “A lot of the members that I’ve met in the support groups are caring for someone who has more advanced dementia than Bill. They have a whole set of different problems and issues than we have, but I still find benefit in getting to know them. I can’t help but think that this may help us down the line, help us see the things that are coming, so we can think about how to work with this.
“I guess it’s an example of adapting to the new reality,” Joan said. “It’s a continual sort of rebalancing. You know, you adjust your life and do things that accommodate the disability at this level, and maybe there’s another change, and so you figure out how to work this out and still participate and engage in life the best we can. And that sort of keeps us going.”
January 2011, Joan and Bill McCormick’s home, Hillsborough.
Sitting on his couch, Bill McCormick squinted his eyes and paused when asked about the challenges of living with Alzheimer’s. He looked over to his wife Joan, who was in the armchair beside him.
“I don’t know,” Bill said. “I probably get more perturbed with Joan. But I have a sense that I understand that because of my brain. I’m still aware that my brain is not like it used to be. So I can be more irritable with her than she is with me.” He paused.
“But when I say I’m more irritable, I’m not, I’m not really―,” he added.
“No, I think you are frustrated by what you can’t do,” Joan finished.
In many ways, Joan is not a typical caregiver, or care partner. If she is upset, frustrated, it never shows. She is soft-spoken, calm, composed.
“But it’s not like―” continued Bill on that January afternoon, his voice switching to an intentionally exaggerated, woe-is-me tone―“I’m frustrated, and I don’t know what to do!”
This playful response reflected Bill’s attitude toward the disease: you have to laugh despite the frustrations. He and Joan still feel that way.
The McCormicks know that a sense of humor will not cure Alzheimer’s. But in the business of caregiving, comfort comes in many forms, and on some days, laughter can mean everything.
Michelle Cerulli prepared this series as her master’s thesis for the School of Journalism and Mass Communication at UNC Chapel Hill. You can follow her on twitter @michellecerulli.