Claire Moody can smooth out a bed sheet – turning it into a wrinkle-free landscape – with the best of them.
No big deal, you say? Try doing it while Moody’s husband, Bill Moody, is lying in his bed, not moving because he’s suffering from atypical Parkinson’s disease and accompanying dementia. Wrinkled sheets could mean irritated skin, and when you’re immobile for long periods of time and basically motionless, like Bill, that could lead to bedsores.
Not with Claire around, though.
“It’s not easy to do,” Claire said recently in her Concord home. “I am pretty good at it now because they taught me how.”
“They” refers to the hospice wing of the Concord Regional Visiting Nurses Association, better known as the VNA, which celebrated its 120th anniversary last month. The VNA gives support in multiple medical areas, like maternity, pediatrics and wellness programs.
Mention “hospice,” though, and many of us think we know what it means. Your time is short. You might need high doses of painkillers to cope, which also means quality time with family will be reduced.
That’s sometimes the case, but not always.
“There is a preconceived notion that hospice nurses just give morphine and let people die,” said Jan Archambault, an RN with the Concord Regional VNA. “That couldn’t be further from the truth. The patients that I’ve cared for in the past two-and-a-half years have felt better and lived longer with the hospice program.”
Claire, those in this close-knit medical orbit say, is the perfect student, receptive, sponge-like, ready to work, ready to give what she can to the man she married 47 years ago.
He was in sales and traveled around the world for work. She was a flight attendant, receiving a dream-like perk of two free plane tickets to anywhere in the world for the rest of her life.
That means they’ve skied in Italy and Switzerland. It means they saw Big Ben. It means their lives were rich.
Now, thanks to a big assist from the VNA, Claire can care for Bill at home.
She’s learned to read the devices now monitoring Bill in their living room, take his blood pressure, check his breathing, move him to a wheelchair.
Kathy Wyle is a physical therapist who works with the couple when needed. She’s in charge of some of the equipment set up in the living room. She’s also part of an institution that combines equipment with compassion.
“It’s really about giving patients and loved ones the tools to care for loved ones until the end of life,” Wyle said.
Marie Bruns still has plenty of life at 84, another example of a patient who’s not going anywhere anytime soon.
Marie lives in a complex for seniors in Bow. She’s been on her own since her husband, Roger, died three years ago.
Enter VNA registered nurse Melissa Reep. Doctors had removed a growth from Marie’s face, and she was returning home after 10 stitches were removed.
Reep stopped by just to check in a woman with a menu of recent health problems. Knee replacement, stroke, open-heart surgery.
That’s where she rehabilitated her knee. At home. Under VNA care.
“They said I had to go somewhere for rehab, and I said no, I can come back here,” Bruns said. “Melissa did the rehab at my home, exercises. They kill you, but you have to do them.”
Bruns is one of several patients Reep sees in a week.
“I will make appointments, guide her through whatever is going on,” Reep said. “Pre-filled meds, how to use her inhaler, and at one point she had to use oxygen, so I helped her set that up and showed her how to use it.”
Bruns is alone in life now, but she has friends all over the place, in a common meeting area and right down the hall. She’s a ball of fire, with no one to watch over but herself, giving her time to work with the activities committee, manage the five-and-dime store, join a book club.
By contrast, Claire is still an active caregiver whose time is dedicated to her husband. She noticed signs that something was wrong with Bill years ago, but it didn’t register. Not totally.
She described his voice as getting “smaller.” He became less attentive. His mobility slowed. She began to realize that the man with an education from Cornell University who once skied the world and climbed 4,000-foot mountains was changing.
“He got progressively quieter,” Claire said. “If I had been a nurse, maybe I would have known what was going on.”
You can hear regret coming from Claire, hurting her, even though these illnesses were on their way into Bill’s life, no matter what.
Bill was approved for hospice care in July. He had been shuffling along recently, making life easier because he had some physical independence, but the shuffling is gone, and Bill now stays in bed and gives one-word answers.
He could not have picked a better partner in life, which was illustrated when Claire said she needs to remind herself to appreciate outside help.
“I suffer when someone else is caring for him,” Claire admitted. “You want to be that person, hoping I can do it. Why am I having someone else do it?”
She is one of the many people the VNA helps from both a medical and emotional perspective.
“Claire is a fierce advocate for Bill and she has many hidden strengths,” Archambault wrote in an email. “We help her recognize those strengths and help build her confidence by using our expertise to teach and educate her on his disease and what to expect as it progresses. She knows if she needs help, she can call hospice at any time for support and advice.”
Recently, when Bill’s mobility and speech weakened further, something called a Hoyer was brought into the house. It’s a contraption that looks like a weird baby buggy. It works like a crane, lifting Bill to situate him. Claire doesn’t know how to use it yet. That lesson is due this week.
You can bet she’ll learn, fast.
Bill wasn’t going anywhere the day we met. He was in his usual spot, a hospital bed in the living room, an adjustable mattress holding him upright, pushing out one-word whispers now and then that, it seemed, only Claire could hear. His silver hair was neatly swept to the side, and the sunlight reflected off his glasses.
It was impossible not to ask Claire about Bill’s awareness, his sense of what was happening, what was being said. Her answer was surprising.
“He hears everything that is said. He has not missed a thing that was said here,” Claire said. “I sit on the bed and lean over.”
She asked Bill if she had it right. He gave a thumbs up. She has no idea if he’ll one day lose his memory and thought process. With atypical Parkinson’s and the sort of dementia that is often paired with that disease, memory loss doesn’t necessarily happen quickly.
Claire said she’s ready for anything. She said hospice helped her build strength.
“I am open to what happens, and you need an open spirit,” she said, “or you would die doing this, from the hurt inside.”
That doesn’t mean she’s done believing.
“I don’t see a time when he’s not responding, but I live in fairyland,” Claire said. “I’m expecting him to be around for a long time. In fact, I’m depending on it, and he’s depending on me.”