Apr 23, 2014 Updated: 11:21 PM
By Sean Corcoran | Thursday, June 16, 2011
June 22, 2011
The Alzheimer's caregivers’ story is often one of sustained stress, exhaustion and isolation. Rates of depression, poor nutrition and chronic disease among caregivers of Alzheimer's patients are higher than for non-caregivers. 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.
CENTERVILLE, Mass. — The goal of many people with Alzheimer's disease and their families is to find a way for the person to spend their final days in their home. But oftentimes the burdens associated with the disease makes that impossible. About two-thirds of people dying with dementia do so in nursing homes.
Ruth Mauterstock is 90 years old, and she knows there's something wrong with her memory. She looks at the pictures on the wall of her studio-style apartment, and they seem to confuse her.
"I don't have too much remembrance. Because I've gotten…what was it I had?" she asks her son, Bob.
"Well, you've forgotten some things," Bob says.
"I've forgotten some things."
"As you've gotten older. And that's why I have the pictures," Bob says.
"He has all these pictures."
Bob Mauterstock visits his mother twice a week at the assisted-living facility Harbor Point at Centerville on Cape Cod, and he often brings his IPad. It's loaded with pictures of graduations and birthday parties that date back to when Ruth was just a girl. Bob says the photos help her remember.
"That's me in college," Bob says. "That's when you took me to college."
"Where did you go to college again? I can't remember."
"Princeton," he says.
"Oh! Ha ha. How could I forget that?" Ruth exclaims.
When Harbor Point opened 11 years ago, it was the first assisted living facility on Cape Cod specifically for people with Alzheimer's and memory impairment. It used to be that the only option outside the home for people with Alzheimer's was a nursing home. But over the past decade, the elder industry has reacted to the growing number of Alzheimer's patients, creating assisted-living facilities where almost all patients can spend the duration of their lives.
"People don't come here to get better, but they come here to live well within the disease process," says Sandra West, Harbor Point's executive director. "The perception in this generation has been, don't move me to a nursing home. Well, we're not a nursing home, and it takes a visit to come in and look around and get the feel of the community."
West says Harbor Point feels more like a bed and breakfast than a long-term care facility. And she's right. It has thick carpets and art-covered walls. Residents attend yoga classes and tea parties. Workers can assist with everything from bathing to eating, but unlike nursing homes, skilled nursing care is not provided. And the difference from a traditional assisted-living facility is that everything is geared towards making things easier for the memory-impaired.
"There are a lot of things that make a big difference in this community. Things like non-glare glass on the art work. Darker walls behind the commode in the bathroom, with a dark seat to help raise it up so that a person with memory impairment can actually see behind them. We use red dining plates to help with the amount of food that will be eaten because they can see better with the red plates. Wider hallways. Brighter lighting. Easy access to the outdoors. No thresholds; everything level. Things like that."
Before arriving a year-and-a-half ago, Ruth lived in a traditional assisted living facility in Longmeadow, about three hours away. But she began having trouble caring for herself, and bringing in home health aides only confused her. She didn't need skilled nursing care because she's generally healthy, and Bob was relieved to find an assisted-living facility near his home on Cape Cod that specializes in memory-impairment.
"All of us fear we are going to put them in a place where, number one, they are going to hate. And number two, they're not going to be taken care of and will be left alone. And that is why you need to visit some of these places and talk to families before you make your decision where you want them to be," Bob Mauterstock said.
One of the biggest obstacles families face is financial. Under current law, an individual's assets must be nearly depleted before the federal government will step in under Medicaid. The qualification criteria is complicated, and many loopholes that previously allowed people to give away assets in order to qualify have since been closed. The reality is that very few people can afford care costs for the duration of the disease. In 2009, the national average for a year at an assisted living facility specializing in dementia care was about $55,000. A nursing home was about $87,000. In Ruth Mauterstock's case, Bob says she pays $250 a day, which is based on the level of care she needs.
"It's so complex," Bob said. "It's incredibly complex, and most families have a real difficult time dealing with it. The sources of funding, where you get funds, what you can do and can't do, is very complicated and very difficult."
When it comes to sorting out all the finances, Bob has a leg up. He was a certified financial planner before he retired. Since then, he's taken an interest in long-term care issues, even writing a soft-cover book called, "Can We Talk? A Financial Guide for Babyboomers Assisting Their Elderly Parents."
"I learned for myself being an only child, or just a child, how difficult it is to tell your parents or parent what to do. It is a reversal of roles that is very hard to take on," he said.
People who work with and advocate for Alzheimer's patients and elders commonly recommend buying long-term care insurance, which pays for both institutional and home care. But premiums are expensive. Tom Grape is CEO of Benchmark Senior Living, which operates 44 senior living communities in New England. He says the industry is prepared to handle the growing number of Alzheimer's patients — a population expected to reach 140,000 people in Massachusetts alone in the next 15 years — but cost will continue to be an issue for most families.
"Personally, I think long-term care insurance is a great solution for the whole longer timer issue of funding elder care, but it's simply not widely held," Grape said. "It's growing, but I think we have four, perhaps five percent of our residents are paid for through long-term care insurance."
Bob Mauterstock, who is now 65, purchased an extensive long-term care policy more than a decade ago after it saved several of his former clients from financial ruin. But it was too late to buy such insurance for his aging mother. And once she was diagnosed with Alzheimer's seven years ago, talking about anything related to finances or end-of-life care became impossible.
"For the first time, yesterday she repeats to me, 'I lost my memory. Does this happen to everyone? Does everyone experience this?' And for the first time yesterday she mentioned the word Alzheimer's," Bob said.
The most recent census numbers show that about 54,000 residents of Cape Cod are aged 65 or over, which translates into an estimated 9,000 people living with Alzheimer's here. There's about 120,000 state-wide. Bob Mauterstock says he didn't expect that his mother would be one of them, but he didn't leave it to chance. Ten years ago, when she was still clear-headed, he sat down with his Mom to talk about her final wishes. He says it may have been the most important conversation they ever had.
By Sean Corcoran | Thursday, June 16, 2011
June 21, 2011
The Alzheimer's caregivers’ story is often one of sustained stress, exhaustion and isolation. Rates of depression, poor nutrition and chronic disease among caregivers of Alzheimer's patients are higher than for non-caregivers. In our special series, Facing Alzheimer's: The Caregivers' Challenge, Sean Corcoran explores the challenges of caring for Massachusetts' more than 120,000 Alzheimers' patients.
SANDWICH, Mass. — Alzheimer's disease is fatal. It steals memories and personalities at its own pace, though most people die within eight years of diagnosis. The older we live, the greater chance we have of getting the disease. It's estimated that about one in every 8 people aged 65 and above has Alzheimer's.
But it's not just a part of getting older. Sometimes, Alzheimer's clogs the brain of younger people. People like Butch Noonan.
"I'd like to be recorded so people will know that I'm of sound mind about my end of life issues because I have early-onset Alzhiemer's disease," Noonan said on a video shot in 2002. "And I'm 51 years old now."
Noonan made this video so his family would know what he wanted and what he didn't want when Alzheimer's left him unable to make those decisions himself.
"I don't want to have to be force-fed or tube fed," he said. "If I can't eat I don't want anybody to feed me, because all it is doing is extending the pain longer. My family will have to see me suffering longer, I won't know who anybody is. I could get violent at times."
If there's one thing that Noonan and his six surviving brothers and sisters learned from their experiences with Alzheimer's, it's that the best way to face it is with planning and discussion. Family meetings to sort out financials and end of life choices often are fruitless once the disease has settled in.
"My mom was spoon fed for 5 years in a bed," said Noonan's older sister, Patty Barbato. "My mom would not have wanted to be spoon fed lying in a bed for 5 years. That wouldn't have been her choice. But Butch made sure nobody was going to spoon feed him. He didn't want to be kept alive. When his life was done, he wanted it to be done."
There were 10 brothers and sisters in the Noonan family, spread out over 22 years. They lost their mother, Julia, to what's called early-onset Alzheimer's when she was in her late 30s. Julie Noonan-Lawson, the third youngest, was still in Kindergarten at the time.
"We actually thought that with the death of our mother we were burying the disease. We were very happy having that part of our life over with," Noonan-Lawson said.
But Alzheimer's returned, and it took their mom's twin sister. After scientists discovered the gene mutation that leads to early-onset Alzheimer's, the Noonan's were told they each had a 50 percent chance of inheriting the dominant gene. Sister Maureen died first, the same day sister Cathy died of cancer. It's not known if Cathy had the Alzheimer's gene or not. But Maureen did, and sister Fran was next. When her symptoms began to appear, Julie says Fran was determined to control the disease as much as she could. She was not ashamed.
"She ended up going around," Noonan-Lawson says. "She went to her bank, she said, 'I have early-onset Alzheimer's and I am telling you this because you know I come to this bank, if I forget, if I forget my pin number, I might need support, and I am just letting you know up front.' She went to the school, she told them, 'I have Alzheimer's. I don't want to miss meetings. I want to be engaged, but I have a disease where I will forget so I am asking for support.' She went to the orthodontist. She went to he pediatrician -- she went every where she knew where she might need support."
Most of the Noonan siblings have been tested for the early-onset Alzheimer's gene. Julie, John and Patty, who were interviewed for this story, do not have it, so they cannot pass it along to their children and grandchildren. But the next generation, the children of Fran, Butch, Maureen and perhaps even Cathy, still are at risk.
"It's a tremendous relief," Noonan-Lawson says. "But it's also very difficult to think about the individuals who don't have the same blessing in my own family. My other nieces and nephews, who may have to face it that now don't have their mom and their dad, and they may have to face it. You can't leave that, even though you're relieved that your own direct family doesn't have to deal with it. You can't leave the rest behind."
Ten years ago, the Noonan siblings sat down for a family meeting to discuss what they wanted to happen at the end of their lives, and who they wanted to make decisions for them. There's tremendous value in learning how they made their decisions and the discussion that went on. For example, while surrounded by his siblings and their spouses, John Noonan said he didn't want his wife Donna to be his healthcare proxy. She started to cry.
"And I felt like crap," John Noonan said. "But my reasoning was very sound. i didn't want her to be my healthcare proxy because my wife loves me. She's not going to let me go. She's going to want to spoon feed me. She's going to want to keep me alive. And I didn't want an insurance company, or one of my siblings coming back to my wife and saying, you killed him, you wanted the insurance co. and you killed him, or my kids to say that or anyone."
Not long after the family meeting, Butch Noonan made his 36-minute video. John was his healthcare proxy, and he considers it a final gift from his brother.
"That video that Butch made was so beneficial to me," John Noonan said. "I probably went back and viewed that video a dozen times in the last 3 yeast of Butch's life, because I wanted to make sure I was doing just what Butch wanted. Not just what I remembered hearing. But I watched the video that he made 10 years earlier, saying what he wanted."
Patty Barbato says the video also made clear Butch's wishes to people outside the family. He did not want a ventilator. He did not want to be resuscitated if his heart stopped or put on dialysis if his kidneys failed. And if the disease caused him to lash out, he wanted to be medicated to keep people safe.
"The nursing home employees got to see that video," Barbato says, "so it wasn't just a directive that somebody said this is what Butch wants. They could view that video and see that he was very serious about what he didn't want. Not just what he wanted, but what he didn't want."
The Noonan family knows Alzheimer's. They know what it steals and what it leaves behind, and how it often prompts family caregivers to isolate their loved ones, scared of how the person might behave in public, or what they might say. John Noonan says that sharing their story with other families, their approach to the disease and suggestions for how to handle it helps give the family some power over it.
"We're not just victims of this disease," John Noonan says. "We've been proactive. We've taken the steps to help others around us, to help family members and other strangers. To deal with this, get the resources they need, the steps we've taken, so then they know they're not alone."
Butch Noonan died on November 4 of last year, just shy of his 59th birthday.
In addition to his recorded interview detailing his final wishes, there's another video the family has. It's also of Butch, and it's a collection of pictures set to music from the last 10 days of his life. You never see Butch's face in the video or get a good look at how Alzheimer's ravaged his body. Instead, the photos are of people's hands -- his, his brother's and sister's, his wife and two children's -- their hands holding each other and trying to offer comfort.
By Sean Corcoran | Thursday, June 16, 2011
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.
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