By Brian Goslow
Once a day, Bob “Fritzie” Cobb, 83, lovingly takes the hand of his wife, Doris, 81, and carefully leads her to their car for a recreational drive. “The world is very threatening to her now,” he said. “I’m always clutching her hand. It seems to be very important to her.”
Keeping his wife secure is the most important thing in Cobb’s world. The Attleboro couple are celebrating their 60th year of marriage; the past four have been the most difficult as Doris slowly succumbs to Alzheimer’s disease.
Those drives are invaluable to them. “The way we’re looking at it is, if you can have a consistent pattern, it’s a good thing,” Cobb said.
A good-humored man, Cobb said his biggest challenge is the future. “Wondering how is this all going to end and can I maintain a consistent caring pattern. I told someone a little while back, ‘I’m living in Eugene O’Neill’s Long Day’s Journey Into Night.’ My world is upside down and I can’t put it back together.’”
Caring for a loved one was the number-one source of stress for 69 percent of 1,000 family caregivers surveyed in a recent study on the financial and emotional costs of caregiving. The study was conducted by Caring.com, an online website that provides support and information for caregivers.
Fifty-eight percent spent over 10 hours per week and 22 percent 40 hours weekly providing care-giving services that included shopping, talking with doctors and obtaining and administering medicine. That dedication has come at a financial and professional cost; 42 percent spend more than $5,000 for caregiving annually — with over 60 percent concerned about the effect that has had on their own long-term savings.
Seventy-four percent have either changed their employment situation or are no longer working. “They had to take a leave of absence or leave the job itself,” said Robin Joy, vice president of marketing for Caring.com. According to AARP, 30 million households provide care for an adult over the age of 50, with that number expected to double over the next 25 years.
As the numbers grow, more caregivers are seeking outside support — not only for their caregiving duties, but for their own peace of mind and health. Many are finding it at caregivers support groups.
The Norfolk Adult Day Health Center in Norwood has hosted a caregivers group on the last Tuesday of each month for over a decade; the center also provides respite care, if needed. “Some people just walk in unannounced and some are regulars,” said director Marybeth Lynch. The meetings are part informational, part sharing, with attendees talking about what they’ve been through since the last meeting.
Cobb, who attends the Norfolk center meetings, finds strength in being amongst others with similar experiences. “Birds of a feather do flock together, “ he said. “There’s a comfort in it.”
He said it’s important for caregivers to find someone to share their experiences with, especially at the start of the caregiving process. “You’re not always going to like what you hear, but you need to hear it,” Cobb said. “It’s about learning how to handle circumstances and how to be comforting, not confrontational. That’s important in dealing with people with Alzheimer’s or dementia. A lot is learned by experience and we’re happy to share ours.”
Some caregivers, Lynch said, feel they’re guilty of not having done their best for their loved one. “Others will tell them, ‘Give yourself credit. Look at what you’ve done and where your husband (or wife) would be if you weren’t there every day,’ ” she said.
At a recent meeting, a woman explained how her husband had been getting more difficult for her to handle and that she thought she might have to put him in a nursing home. Others who had overcome similar situations shared their experiences with her. “Seasoned caregivers have their tricks of the trade to problems that may seem insurmountable to first time caregivers,” Lynch said. “They’ll share information on doctors and gerontologists; it’s a good place to get good advice.”
Peggy Thornton, 81, looks after her husband of almost 60 years, Dave, 84. Three days a week she brings Dave, who has advanced Alzheimer’s, to the Norfolk center, where she recently attended her first caregivers meeting. She also attends Alzheimer’s caregivers support group meetings at St. Timothy Catholic Church in Norwood.
“At first you feel it’s an overwhelming problem and you don’t know what to do,” Thornton said. “At the meetings, you get suggestions.” Another first-time attendee noted that the gathering turned out to be different than she expected — especially the parts filled with laughter. “She was told, ‘You have to laugh or cry — so we laugh,’ ” said Thornton.
The Thorntons’ five children help with their father’s care to varying degrees. “They come over so I can do this and that,” Peggy Thornton said. “One day a week, I get out for the day. I go bowling in the morning and play cards with female friends in the afternoon.” She won’t reveal her bowling average, which has been slowly decreasing. “I say I should quit and help out my team, but they remind me we’re out to socialize, get out of the house and have a good time together,” she said.
When dementia leaves loved ones unable to interact as they used to, the result can be heartbreaking for their spouse. “Being a caregiver in this situation is so isolated and lonely — they’ve lost a partner and a loved one,” Lynch said. “They’ve been looking forward to their golden years and they’ve turned out to be not so golden. Instead, it’s a struggle to get through the day.”
The caregiver’s social options also may become limited, leading to an even larger feeling of isolation. “They’ve lost their friends because people don’t want to go out with someone with dementia,” Lynch said. “It can be an embarrassment or too much of a struggle to bring them out. So the caregivers don’t go out.”
That makes caregiver support meetings even more essential, said Joyce Colletto, a community liaison nurse and support group facilitator for the Alzheimer’s support group at the Attleboro Community VNA. When it comes to caring for someone with “memory disorder,” as she prefers to call dementia, each person is different. “Some have behavioral issues; for others, it’s the memory loss,” she said. “The most you can convey to (the caregiver) is that it’s helpful to have others who are going through similar situations and who can understand what you’re going through to talk with.”
Among the subjects discussed at the Attleboro meetings have been what to do if a loved one with dementia insists on driving and how to handle irrational behavioral issues. “A person with dementia can become agitated or paranoid,” Colletto said.
That’s also been a major topic of discussion at the Norfolk meetings. “Most are women; a lot of them are dealing with violent husbands,” said Al Bugeau, 76, of Westwood, one of the few men at the meetings. “They’ll tell us, ‘He beats me up.’ I tell them to call 911. They respond, ‘He’ll get upset.’ Of course he’ll get upset. But you get help. Their husbands, whose minds are questionable, are beating them up. They get mad and forget it’s their wife (they’re attacking).”
Having attended the meetings for a while, Bugeau hopes he provides comfort to newcomers having trouble coping with their caregiving situation, using his own personal experiences as examples.
Three years ago, Bugeau noticed his wife, Barbara, 71, was having memory problems. But convincing the woman he’s been married to for more than 50 years that she should see a doctor proved impossible. So their daughter, a registered nurse, manufactured an emergency that led to Barbara Bugeau getting a full checkup where she was diagnosed with Alzheimer’s.
“Stopping her from driving was a challenge,” Bugeau said. “I told her she couldn’t drive until she renewed her license.” After being overwhelmed by the study material, Barbara failed the test and eventually forgot about wanting to drive.
Barbara Bugeau has been spending weekdays at the Norfolk center for nearly a year. “Without it, she’d have to be in a nursing home because she needs care 24/7,” said her husband. “If I couldn’t do that (adult day care), I couldn’t do it. During the weekends, she stays here at home. When Monday morning comes, I’m exhausted.”
The Norfolk group has taught him the value of accepting circumstances as they are and to go with the flow. “I realize nothing in Barbara’s behavior is Barbara,” said Bugeau. “You have to remind yourself you’re with someone else (when they have Alzheimer’s). Don’t fight it, take it.”
For now, he values their time together at home, surrounded by memories and artifacts from their many years of travel. He’s even found a way to turn her afternoon return from day care into a celebratory event. “I crush her pills and mix them in with some ice cream and caramel or butterscotch sauce and stir it up into a cold drink and call it a cocktail,” Bugeau said.
As more boomers age, the demand for caregiver groups will grow. When the Mansfield Adult Day Health Center held a pre-Christmas potluck gathering to judge interest in starting a caregivers group, it was overwhelmed by the turnout of nearly 100 people.
“It was a chance for them to know they’re not alone and there are other people whose journeys are similar,” said director Carol Falcone. “They talked about the sadness, health challenges and anger.” Afterwards, attendees said they found the event cathartic and enjoyable and a monthly early evening caregiver group was established at the Mansfield site.
Not all caregivers live near their loved one. Dr. Kathy Johnson, founder and CEO of Home Care Assistance of Palo Alto, Calif. and co-author of Happy to 102: The Best Kept Secrets to a Long and Happy Life (Home Care Press), looks after her mother, who is in her late 80s and lives 2,500 miles away in New Jersey.
She encourages going online to learn as much as possible on the subject. Most senior centers, she’s found, can provide caregivers with a wealth of resources and support, free of charge.
“If you have the financial means, have someone from a home care agency provide respite care for you, or have friends or family members help out,” Johnson said.
She’s seen neighbors, family friends, fellow churchgoers and relatives help caregivers out; the key is asking them. “It might be something as simple as asking a relative to help with doing some shopping for you and dropping the items off or asking them, ‘I need the weekend off — could you stay here?’ ” she said. “You might be able to make it part of your dad’s care that they stay over the first weekend of each month. I see people bartering services all the time.”
For all the attention given to the dementia sufferer, Johnson said it’s essential that caregivers learn to identify when they need help. “A high level of stress leads to burnout and eventually, disease,” she said. “Reach out for help because it is out there. Otherwise, you can allow yourself to get to the point where you become overwhelmed and immobile.”