I was set to interview Karen MacGregor about her experience with younger-onset Alzheimer’s disease, which her husband had. But in mid-October, I got a call from her saying she would need to postpone. Her husband’s health had taken an unexpected turn for the worse. A week later he died from complications of younger-onset Alzheimer’s disease. Peter Sargent was 56 years old when he began showing symptoms of the disease, and he died Oct. 19 at age 64.
When Karen called me back just a few weeks later to reschedule, I was surprised. I asked her whether she was sure she was ready to talk about her experience.
“This feels so important,” she said. “There needs to be a voice for younger onset.”
So I traveled to Kennebunkport, to the house that Karen and Peter built together 29 years ago. We sat in their kitchen, which used to be heated by wood heat. Now there is a big empty space where the wood stove used to be.
“Everyone told me, ‘Karen, you’ve got to get rid of the wood stove,’” she said.
She resisted at first, but Peter’s confusion grew as the disease progressed. He was a youthful, active man who ran the Cape-Able Bike Shop in Kennebunkport for nearly 30 years. He was used to keeping busy at home, too. The wood stove was too risky. Several friends helped her remove it one day, while Peter was out with another friend.
“He didn’t notice it was gone at first, but then he did,” Karen said. “And I said to him, ‘Peter, you would be so proud of me.’”
Then she made up a story about a dangerous fire and a broken wood stove. Peter accepted it and never mentioned it again.
This part — the part which caregivers need to learn to invent stories to prevent distress in their loved ones with Alzheimer’s — is very difficult for some. Karen, however, is an exceedingly sensible woman. Before his illness, Peter was equally no-nonsense. Karen finds comfort knowing he would have supported the difficult decisions she made along the way.
Unfortunately, Peter did not learn he had Alzheimer’s disease until he was too sick to understand what was wrong, five years after he began showing symptoms of confusion. That delay in diagnosis is one of the problems with younger onset. Confusion and memory loss can be symptoms of many things: stress, anxiety, depression.
Karen and her adult son, Mac Sargent, knew something was wrong with Peter starting in 2006. He would ask the same questions over and over. He got lost on Boston’s subway lines, which he had known well for years. But they clung to the hope it was a temporary problem. Medical professionals were diligent, but Alzheimer’s was not at the forefront of their thinking because of Peter’s age and it’s a difficult diagnosis.
In 2010, Karen looked at a list of symptoms for dementia and younger-onset Alzheimer’s. “I started to cry,” she said. The following year Peter was officially diagnosed at Massachusetts General Hospital in Boston. Their son Mac was at home when they returned.
“I told Mac,” Karen said. “We cried, and Peter said, ‘I don’t know why you’re crying. I know I’m sick. I’ve lived a good life.’ That was a gift he gave us.”
A book called “Learning to Speak Alzheimer’s” by Joanne Koenig Coste gave Karen enormous help. It encourages caregivers to see the world through the eyes of the person with Alzheimer’s and adjust their expectations of a good day. It also tells how to make your home less stressful for patients and caregivers. Keeping a smile on your face is crucial to preventing distress in your loved one with Alzheimer’s.
Even more important for Karen has been a support group for caregivers of people with younger-onset Alzheimer’s, which meets once a month. The group offers commiseration, shared ideas, insights about coping and, perhaps most importantly, laughter.
“We laugh a lot. You need humor,” Karen said. “One woman told about putting together a delicious stew in a crockpot. She came home later, and the crockpot and food were gone. To this day she has no idea what happened to it.”
The distinctive thing about younger-onset Alzheimer’s, in addition to the not-uncommon delay in diagnosis, is that patients are physically energetic. Peter had always been a nonstop person, so his caregiving involved constant activity. Karen retired early from her counseling work in the Kennebunk school system to stay home with Peter. But care meant things like having him mow the lawn — though he confused the gas and the oil — and unpacking the backpack he packed up in the morning. The day before Peter moved into Gorham House, a senior care facility, he and Karen biked 25 miles.
One of the things Karen hopes to see is more care catered to younger-onset patients.
“Peter was the youngest they’d ever had at Gorham House,” Karen said. “The older patients would be doing chair exercises, and Peter would be in the hall doing pushups.”
Luckily, Peter was not combative, but he was strong, which could create problems. He had been a lifetime bicycle mechanic, so he started inspecting people’s walkers. He sometimes became insistent about trying to take walkers away from patients so he could fix them.
Peter’s health declined. Over time, he lost 56 pounds. Toward the end of his life, they continued to offer him food and water, but he refused to eat or drink and soon went into hospice care.
That is another thing Karen wants people to be aware of. She and Peter had advance directives, which state clearly that if they cannot feed themselves, they do not want to be nourished mechanically.
“Without an advance directive, he might have lived for years on feeding tubes,” Karen said. “He would have hated that.”
Peter was an organ donor. After his death, Karen and Mac donated his brain for research. They feel comforted at the idea that the donation might lead to a better understanding of younger-onset disease.
“People in my support group want to do it too, now that they see how easy it is,” Karen said.
The life of an Alzheimer’s caregiver is complicated by much more than just caregiving. Financially and legally, the complications are many, and tough decisions need to be made. One thing Karen shared openly was that, at the advice of her lawyer, she filed for divorce. If Peter lived longer, she might have lost almost everything she needs to pay for Peter’s care. She knows the divorce option is not for everyone, but she was philosophical about it.
“If I had two pieces of advice for a caregiver, I’d say the first thing is to see an elder care lawyer. The second is to get a good therapist.” She added, “One big thing, if you see someone with symptoms early on, keep at it until you get a diagnosis. Trust yourself. You know when something’s wrong.”
I told Karen she amazes me. After such a heartbreaking experience, how generous and strong she is to be so open and forthcoming.
“I have been open because I hope it can help other people,” Karen said. “There’s a stigma, too, to the disease — an embarrassment. I want to help people get beyond that. You think there’s no way you could ever handle this, but you do.”
Karen is grieving the loss of her husband, but she has been suffering his loss for years. There is relief knowing his suffering is over.
“There’s finally room in my heart to be sad,” she said.
But there’s also room to find comfort in memories, not just from Peter’s healthy years but in moments during his illness when his spirit still showed through, like the day, not long before he died, when he saw Karen and called her by an old nickname.
And there was this story of a night when he was still at home. Peter and Karen were watching TV together when he suddenly became agitated, not sure where he was.
“We’ve got to get going!” he said.
Karen thought fast. “No problem,” she said. “I made reservations here for tonight, and for breakfast tomorrow.”
“But I don’t have my sleeping bag!”
“We have sheets and everything, all included.”
“Karen,” Peter said. “You’re the best.”
Resources for Alzheimer’s patients and caregivers:
Robin Clifford Wood welcomes feedback at email@example.com