June 20, 2011
The Alzheimer's caregivers’ story is often one of sustained stress, exhaustion and isolation. Rates of depression among caregivers of Alzheimer's patients are higher than for non-caregivers. Incidence of poor nutrition and chronic disease are higher than people without the burden of 24-hour care-giving.
For people with little support from friends and friends, the disease brings the loss of a loved one, as well as significant financial obstacles for people without the resources to pay for home health aides and other types of custodial and respite care. In our special series, Facing Alzheimer's: The Caregivers' Challenge, WGBH's Sean Corcoran explores the challenges of caring for Massachusetts' more than 120,000 Alzheimers' patients.
WAREHAM, Mass. — Barbara Meehan was never the funny one. She didn't really make jokes or strive to keep things light and positive. But today, at 64 years old Meehan suspects she could do observational comedy at an Alzheimer's conference.
"Obviously only other caregivers could appreciate it because I'm sure there are people who would think you are being mean," Meehan says. "But you're not, because if you don't laugh you'll cry every day. And that's not a good thing. But you know it's not funny, it's sad."
Meehan is one of about 15 million unpaid Alzheimer's caregivers in the nation. It's estimated there's about 320,000 in Massachusetts. They're often lonely, emotionally worn and physically exhausted, because caregivers live in a world where the air is thick with loss. They witness the slow collapse of memory and personality. And there's also the looming loss that's sure to come.
|Barbara Meehan stands behind Faye Mills, who has Alzheimer's Disease. Meehan is Mills' caregiver.|
"Every one of us would keep our loved one home to the last possible moment — if we had the help," she says.
Sometimes, though, when she's tired, when the same question has been answered numerous times and all her forced hope of things getting better seems to have slipped away, Meehan is struck by a sickening thought.
"I am going to be real honest," she says, her voice growing quiet, almost to a whisper. "There are times when you sort of think, 'Oh, I wish we were already at the in a nursing home point.' And you want to talk about feeling guilty, that's really feeling guilty. But it's times when you're so exhausted. And so lonely. That's the thing. You're really lonely."
Meehan and 71-year-old Faye Miles have been partners for 31 years. They met at Old Rochester Regional High School in Mattapoisett, where Meehan was a guidance counselor and Miles taught physical education. They're retired now, living in a modest home in Wareham, not too far from the water. But retirement life is not filled with day trips and music concerts like they expected. On April 24, 2008, Miles was diagnosed with Alzheimer's disease.
"I do all the cooking," Meehan says. "I do all the cleaning. I do the laundry, I do the shopping. I help Faye get dressed in the morning and for bed at night. I make sure she has all her pills. The only time I leave her is if I get up and go do the laundry at 8 in the morning, because she doesn't get up early, which has been a blessing."
Meehan is almost always nearby because Miles cannot be left alone anymore. They can afford to spend $600 a month on a home health aide, which buys Meehan 6 hours of respite a week. So for three hours on Tuesdays and Thursdays, she can leave the house as the young aide tackles chores Meehan can't do anymore.
"We had an episode where she decided to take a bath and then couldn't get out of the tub," Meehan says. "We could have won $10,000 on American's home videos because I am in the tub in my clothes trying to get her up. We both were laughing hysterically, but she couldn't' figure out what to do."
As Meehan talks at the kitchen table, Miles is in the front room near the picture window. She spends most of her days here in her favorite chair, reading books. It takes about three weeks to finish one.
"I like to play tennis, I like to play basketball. I like to read I taught for many years. 30 years," Miles says.
I ask her about Meehan. "You help take care of me, right?" Miles says.
"Yes, I do," Meehan says.
"You're a good woman," Miles says.
"Thank you," Meehan says, laughing. "I make sure you eat."
Miles assents, laughing too.
The couple lives pension check to pension check. Miles has no long-term care insurance. She does not qualify for government assistance in the form of Medicaid, and probably won't until her assets are nearly depleted. But more upsetting to Meehan than the troubling finances is the lack of support.
"The people who I thought might be there for us, aren't," Meehan says. "People that we've known, she's known even longer than I had, over 30 years, people we have done a lot for. Faye has got the best heart, Faye has always had the best heart."
Caregivers often put their entire lives aside, sometimes finding it more economical to retire from their jobs than to pay home health aides. The burden grows heavier, Meehan says, when friends fade away because they can't face the disease.
"It's just, it amazes me that you can't pick up a phone, even just to call and say, is there anything I can do? And if you're not comfortable being here, if you're uncomfortable with the illness cook us a meal. Oh, cook us a meal, please!" Meehan says.
Although Meehan would welcome any assistance, many caregivers hide their loved ones away, perhaps ashamed of what the disease has done.
Liz Smith is the director of the Council on Aging in Orleans, a town where 50 percent of the residents are age 60 and over. Orleans has some of the most robust services in the state for people with memory impairment, but only a small percentage of the estimated 400 people with Alzheimer's there take advantage of the programming.
"So, I worry, where are these people? And sometimes when I'm in the food store and I see the couple holding hands tightly, I don't really think it's because they are so crazy in love with each other still," Smith said. "I think it's because one is worried about the other leaving and not knowing where they are."
The chronic stress associated with being the institutional memory and lifeline for someone else wears on caregivers' health. Dr. Kumara Sidhartha of Emerald Physicians on Cape Cod says his patients who are caregivers tend not to eat healthful food or exercise.
"Self-care is not being selfish. If you are flying in an airplane, one of the things they say is that if the air pressure drops and if you have a child with you, first fix your oxygen math and then fix your own mask. We can apply the same analogy here…because ultimately if the caregiver is healthy, that is going to benefit the people who they are taking care of, too," Sidhartha said.
Meehan has heard this before, but she says there's no time to exercise, and eating healthful is expensive. So she's often grilling hotdogs or tearing back the plastic on microwavable meals.
"People will say, well, you need to take care of yourself. Blah blah blah. Well, when you're telling me that, how about if you say, I'll come over so you can go to the beach by yourself or you can go to the Y or whatever. Or, can I bring you a meal?" Meehan said.
The number of Alzheimer's patients is increasing as the Baby Boomer generation ages. There's a desperate need for coordinated care among patients, and comprehensive support for the people on the frontline of the Alzheimer's front — the caregivers.
FACING ALZHEIMER'S: THE CAREGIVERS' CHALLENGE