Ilene Robinson of Oak Bluffs has been acting as caregiver for her husband, Rupert, for approximately ten years, ever since he was diagnosed with Alzheimer’s disease. Three years ago, she joined a caregivers’ support group sponsored by Martha’s Vineyard Community Services.
“I look forward to the meeting every first and third Wednesday,” Ms. Robinson said. “It’s a wonderful group. We pass suggestions on how to take care of ourselves. If we don’t take care of ourselves, we won’t be able to take care of our loved ones.”
This month, Ms. Robinson plans to attend meetings of a new group that is specifically for those caring for Alzheimer’s patients. She’s looking forward to connecting with others in the same situation and learning more about the specifics of Alzheimer’s. “I’m going to find out more about the disease itself,” she said. “It’s helpful knowing that other people are going through the same problems.”
MVCS Island Counseling Center program director Nancy Langman, who will be direct the group, has identified, and intends to address, many of those problems throughout the course of the 12-week program that begins on January 18. Each group session will be focused on a different issue, and every week participants will be introduced to complementary medicine practices that they can integrate into their own lives.
Ms. Langman said that the group will add to a journal each week and will leave each session with an activity that they can do.
Some of the areas of concern to be discussed include the stages of Alzheimer’s; understanding memory loss; home safety; medication management issues; activities of daily living; eating and sleeping issues; driving and operating machinery; wandering behaviors and agitation; talking to friends and family members; financial issues and when to consider a nursing home; and how to make choices and fund that alternative.
“A lot of what we’re trying to do is help people evaluate their own situation and link them with resources,” Ms. Langman said. “We’ll also focus on making appropriate decisions.”
Ms. Langman is a psychiatric nurse by training. She came to Community Services last year from Florida where she worked on Alzheimer’s clinical trials and outreach before taking over a psychotherapy practice. “I worked with several families struggling with Alzheimer’s. I became aware of the issues. My particular interest has always been the medical/psychiatric interface and I just got fascinated with caregiving.”
Ms. Langman, who served as a caregiver for her husband for six months before he died from a brain tumor, is currently completing a doctoral program at UMass Amherst in nursing practice. She has written 15 papers, including her thesis, on caregiving.
“What I’ve discovered,” she said, “is that caregivers neglect their own care, die younger, have more diseases, are more depressed, and feel burdened. What services there are, people are afraid to ask for. They’re often ashamed. They don’t want anyone to know.”
Ms. Langman has also become aware of a lack of professional help for Alzheimer’s caregivers. “One of the challenges we face is that primary care physicians are reluctant to get involved,” she said. “They don’t have the time and many have not been trained in geriatrics and can’t get involved in the process. They generally don’t know the resources.” She added that currently there is no neuropsychologist or permanent neurologist on the Island.
The focus of the upcoming group is really two-pronged — both understanding the unique needs and concerns of Alzheimer’s patients and caring for oneself. An important piece of the latter is getting out and enjoying activities, Ms. Langman said. “There will be discussions about spending time with friends, making doctor’s appointments for yourself and what kinds of things you can you continue to do together.”
The group meetings themselves should provide a break from home and a socializing opportunity and Ms. Langman said that two hours of free respite care are available for those who attend.
Ms. Robinson appears to be balancing her needs with her husband’s quite well. She said that she attends a knitting group and church choir practices regularly. She also tries to share outside activities with her husband.
“We both go to neighborhood convention,” Ms. Robinson said. Movies, a conversation group at the Oak Bluffs Council on Aging, and occasional dinners out are other activities the couple share.
“I try very hard to keep him active socially,” Ms. Robinson said. “He has always been a people person.”
So, too, is Ms. Robinson and she has become friendly with the other eight or so members of the caregivers group. “We’ve gotten really close,” she said. “We just look forward to our meetings.”
Once the 12-week run of the new program is completed, a twice monthly support group for Alzheimer’s caregivers will take its place.
So far, 12 people have signed up, including professional caregivers, wives, a daughter, and a husband. Ms. Langman wants to encourage others — including friends who are caring for a loved one with Alzheimer’s — to contact her. Two hours of free respite care are available for those interested in attending.
The group begins next Wednesday, January 18. Meetings are from 10 to 11:30 am. To sign up or to find out more call Nancy Langman at Martha’s Vineyard Community Services 508-693-7900, ext. 209.