Paul McMahan, 54, needs help lifting himself from his wheelchair to the toilet. He wears a wristwatch that beeps every two hours to help him remember when to urinate. He needs help cutting his chicken at dinner. He doesn’t know how to put on pants or tuck himself into bed and he doesn’t know how to ask for help.
Diagnosed as a child with muscular dystrophy, cerebral palsy and an intellectual impairment, McMahan needs assistance 24 hours a day.
His parents cared for him for the first 50 years of his life. They never took a vacation, they never hired outside help
Since his parents passed away, his sister, Rosie McMahan, has taken on that responsibility in their home in Amherst.
“I’m always on call. Even in the nights,” she said. “…I could spend my whole day doing things about Paul and still not be done.”
Tending to her brother’s constant need has meant cutting back the hours McMahan, 52, puts into her private psychology practice. Between the financial burdens she has taken on and the caregiving, she says she isn’t sure how she and her husband, Blair Maerowitz, a physician assistant dermatologist, will ever be able to retire.
“…My life is arranged around someone who is not only disabled, they are permanently disabled — the bird is not going to fly out of the nest,” she said.
That takes a toll.
“Part of the stress of doing this job is that there is no one else to do it.”
While many people will, at sometime in their lives, be faced with the task of caring for an aging or ailing loved one, McMahan says, there are few resources available to help.
She has been able to find some assistance. Through the state Department of Developmental Services’ shared living program McMahan receives a stipend of about $100 per day, but she says it doesn’t cover the costs, both financial and emotional.
“This is like domestic, poorly paid labor,” she said.
Others get no financial help at all. According to a report issued by the National Alliance for Caregiving and AARP about 43.5 million caregivers provided support to an adult or child in the last 12 months completely out of their own pockets.
Harder to gauge is the emotional price caregivers pay.
McMahan says it’s steep and she is searching for others she can relate to, to help her handle it.
“When you have to do something hard, and caregiving is hard, it is made gentler — you are made to feel less alone — when you can connect with people who understand what it is you are going through.”
There are many local support groups available to provide that help. In fact most area senior centers host them regularly.
Michael Paton, who took care of both his mother and his mother-in-law, who each had Alzheimer’s disease, runs a group in Easthampton.
“Taking care of yourself is the hardest thing, but it’s also the most important,” he said.
Sitting around a table and talking with others going through the same struggles can be cathartic, he said. And it’s a way to get ideas about how to cope.
At the Amherst Senior Center, where another support group meets, social workers also are available to provide one-on-one counseling to caregivers, said social worker Helen MacMellon, who runs the group. The center also provides free massages to caregivers by appointment and has a lending library with materials aimed specifically at them.
“The most important thing is to take care of yourself first or you won’t have energy to take care of your loved ones,” MacMellon said
McMahan says she has yet to find anyone with circumstances similar to hers to turn to for support.
Her brother is adopted, the first child for her parents who believed they could not have children. But soon after the working-class Italian Catholic couple brought their baby home, she says, they discovered he had multiple physical and mental problems. Doctors predicted he wouldn’t live past age 3.
“It was incredible,” McMahan said. “Every person in the medical world, said ‘you have to place him in an institution’ and they decided not to.”
As it turned out that they were wrong about thinking they could not produce biological children. Eventually three daughters were born, Rosie McMahan being the eldest.
When they were adults, McMahan said, she and her sisters tried numerous times to get their parents to discuss a plan for caring for Paul after the parents’ deaths.
“I think we asked some version of that question over and over for about 30 years,” she said.
And then reality hit.
After their father passed away, their mother, well into her 80s, continued to take care of Paul until, four years ago, she started to lose her mobility herself.
“Our family went through this devastation of realizing that we didn’t have any options,” McMahan said.
For a variety of reasons, she was the only one in a position to take on the caregiver role. So, McMahan took both her mother and brother — who had been living in the Boston area — into her home to join her, her husband and their two children, Amelia, 15 and Solomon, 20.
“I thought: ‘Where there is a will — there is a way — we could figure it out,’” she said.
Within six months, she bought a larger house in Amherst and renovated it to make it wheelchair accessible and spent at least $100,000 turning a garage into an accessible, attached apartment for Paul. Her mother sold her house to help pay for the renovations.
“People will say that this is so old fashioned — No. This is decent,” she said.
McMahan’s mother died this past spring. Paul attends a day program, Baraco in Hadley, where he is able to socialize, play games and watch movies for six hours every weekday. When he’s at home, McMahan says, the amount of time she devotes to his care is 720 hours per month. And, she pays for all of his food, clothing and other needs.
When Paul first moved in, she says, she discovered the Department of Developmental Services shared living program, administered locally by Nonotuck Resource Associates in Northampton. It matches people, who have developmental and intellectual disabilities, with a household in the community — typically not with family members. But various circumstances are taken into account, said Richard French, the chief operating officer of Nonotuck Resource Associates, and eligibility is determined on a case by case basis.
The shared living program provides a stipend, depending on the needs of the individual under care, ranging from $10,000 to $60,000 per year, he said.
Most people who are caring for adult family members needing help with basic tasks like eating and dressing, generally get financial and medical support through a different source — the adult family care program, which is funded through MassHealth, said French.
Under that program, the caregiver receives a subsidy ranging from $9,000 to $18,000 per year, he said.
“It’s not a ton of money, but for a family who is taking care of someone it is helpful. We have seen it make a difference.”
As she adjusts to the radical change in her life, McMahan says she is learning how to take care of herself.
“You have to make it a priority. You have to expect resistance even from yourself.”
She hired a respite worker, who comes to her house about 10 hours every week so that she can take a break.
She carves out time to exercise or spend time with her children and husband.
She steals time to relax in her backyard, where she can tend to her fruit trees, her flowers and vegetable garden.
“Being in the natural world is really restorative,” she said.
Support groups leaders Michael Paton in Easthampton and Helen MacMellon in Amherst would approve.
Paton suggests that caregivers try to put together a list of needs and wants, like going to the gym or going to a movie
It’s important, he says, for them to communicate with other family members about how they can help, whether that be cooking dinner for a night or simply being there to talk.
“You can’t be constantly putting yourself second or third,” he said.
MacMellon agrees. “Get help – that could be talking with friends, family or professionals,” she said. Or, she added, stress relief can come from just going for a walk.
McMahan says she is making large strides with self-care.
“Paul never complains and he is extremely easy to please,” she said. “That’s what makes it possible. There is a person in there. He is a person in my family and you want what’s best for the people that you love, I think that’s the way we are all wired.”
Lisa Spear can be reached at lspear@gazettenet.com.
Powerful Tools for Caregivers: An educational series designed to provide family caregivers with the skills needed to take care of themselves, runs 10 a.m. to 12 p.m. on Tuesdays through Oct. 18, at the Bangs Community Center in Amherst. Contact Helen MacMellon at 259-3062.
Workshops for Families on Caregiving for those with Dementia: Free workshops began on Sept. 21 and will run for 10 Wednesdays from 4 to 6 p.m. at Highland Elder Services, 320 Riverside Drive, Florence.
The workshops cover the range of emotions and skills that come into play ranging from empathy to anger, getting though the day and flexibility.
Registration and a phone interview are required for new participants. To register, send name, phone number, email address and mailing address to: dementia-initiative@comcast.net.
Jewish Family Service Caregivers Support Group: Tuesdays, 10 to 11:30 a.m. at the Northampton Senior Center, 67 Conz St., Northampton. Free. Call Cathy Chandler, 455-1936, extension 104 or email c.chandler@jfswm.org.
Caregiver Support Group: Nurse Peg DeNault and Social Worker Helen MacMellon will lead sessions to provide emotional support, resource information, and nurse consultations on Thursdays, Oct. 13, 27 and Nov. 3, 17 from 1:30 to 3 p.m. at the Amherst Senior Center. Contact Helen MacMellon, LCSW, at 259-3062.
Amherst Senior Center Dementia Support Group; A support group for caregivers of loved ones with dementia meets every other Thursday from 1:30 to 3 p.m. at the Amherst Senior Center. Emotional support, nurse consultant, resource information, speakers and loaning library. Contact Helen MacMellon, LCSW, for dates at 259-3062 or macmellonh@amherstma.gov.
Cooley Dickinson Hospital Caregivers Support Group: Support group for caregivers of people with Alzheimer’s, dementia or other debilitating conditions meets every Thursday from 4 to 5 p.m. in the Childbirth Conference Room at Cooley Dickinson Hospital, Northampton. For information call Bruce Bradley at 582-2151.
Alzheimer’s Caregiving Support Group: A support group for caregivers of those with Alzheimer’s disease or related dementias meets regularly on the first Thursday of the month from 4:30 to 6:30 p.m. at 247 Northampton St., Easthampton. For information call Michael Paton at 498-5995.