My father in law Bernie Cournoyer died two weeks ago. A few days before his death, he asked about his garden, wished us well and shook hands. It was sad to see him go, but his body gave out on him. Not his mind.
When the mind goes before the body, it can be a troubling, tragic experience. That’s what happens with Alzheimer’s, a disease that steals the intellect but leaves the body. It’s often frightening for the patient and devastating for the family. And there’s little anyone can do to relieve it, except offer sympathy, support and understanding.
This story is of three people who lost loved ones to Alzheimer’s.
Barbara Reed was one of the first residents admitted to Windemere Nursing and Rehabilitation Center, the Island’s only nursing home, back when it opened in 1994. She had been diagnosed with Alzheimer’s, and her son Brian felt Windemere was the best place for her. At the time of her death in 2005, at the ripe old age of 95, she was one of the longest living residents in the facility.
The last years of her life were difficult, more for her family than her. For Mr. Reed, it was especially difficult to see her slip away so she did not know him.
“When she was alive, there was nothing good about it. It got worse and worse,” said her son who works at the hospital. “I see Alzheimer’s as a progressive wedge that divides people.”
When she first encountered symptoms of the disease, his mother was frustrated and tried to hide the condition from her family. “She knew she couldn’t deal with things in her normal life as before,” he said. “[She was] afraid and defensive.”
As the disease progresses, Mr. Reed suggested, those who have Alzheimer’s disease get more relaxed when they don’t know.
His mother’s condition developed slowly. She initially showed symptoms of confusion over her checkbook and was diagnosed in 1991, specifically when she was unable to draw the face of a clock. One Sunday morning she sat outside a doctor’s office, waiting for an appointment she didn’t have. Mr. Reed recalled: “She put on a good face to try to act normal. She tried to disguise it from the public.”
He said in the beginning there were good days and bad days. “It’s like the outside skins of an onion peeling away. We’d go out for lunch, and the conversation became more and more distant between us.”
Later, as he described the progress: “It’s like putting a mannequin in the car.”
Mr. Reed found it disconcerting when she introduced him as her younger brother. It was, he said, as if “someone stole my mother.”
It’s a challenge for the family. “I was blindsided,” he said. “I needed lead time. Windemere was great. The people are just fantastic, you couldn’t hope for better care. [The staff there were] like family, and it’s the toughest job.”
Over the 15 years he watched his mother decline, Mr. Reed learned to accept his mother’s deteriorating condition. Toward the end he could laugh about it. “I always thought I could pick out a newbie. Once a woman loses her pocketbook and glasses, she’s accepted. Then the disease has taken over. If they still have their glasses and purses, they’re new,” he said.
He talked with families of residents with Alzheimer’s and found the staff at Windemere could help him know what to expect. As he said, “It’s going to be worse. Every day is going to be worse. It’s like someone pulled the mat out from under you.”
When his mother died, he said, “She lived quite a life, but it was the end of the road, and I felt relief that she was relieved of the condition.”
Sue Hruby put her husband in a facility in 2004 because she could no longer care for him at home. It was the most difficult thing she had ever done. “For him it was a slow downhill slide,” she said. “That allowed me to develop a certain amount of patience and acceptance that was helpful in the process. It’s very difficult to live with someone who is not as competent as they were.”
While he was at home, she had a daily mantra: patience and compassion.
Roy died this past February. “I thought it would be less difficult when he died because I’d put him in a home,” said Ms. Hruby. “Not true at all.
“The last four months he deteriorated in a lot of ways,” she said. “He went from walking small distances, to not walking, then with eyes closed.”
It was only in the last six weeks before he died that he didn’t know her.
“He was drifting away,” she said. “Yet there was always something that was him. His manner was always there. His phraseology. He’d say ‘Hi, beautiful,’ but his eyes were closed. His essence was always there.”
Ms. Hruby called her husband every day. “The psychic connection was so strong. It immobilized me when he died.”
When she saw him after his death, she realized he was finally at peace. She was surprised at her own grief. “I would find myself suddenly crying,” she said. “You have to let it happen; you don’t know what’s going to trigger it.”
This past August she went to Maine for several weeks, a dividing line for her. She had a few friends nearby, but also a lot of solitude. “You can be simultaneously happy and sad. In one part of life you feel grief, and something else makes you happy. They are not mutually exclusive,” she said.
Brenda Lehman’s mother was a resident of Windemere for eight years. “It was a very slow process,” she said of her mother’s Alzheimer’s. “But it was so nice to have her here. It’s a beautiful place.”
Ms. Lehman used to visit her mother every day, then fell into a comfortable routine of three to five times a week. She would bring her mother home for the holidays, but she got confused. Her husband finally said, “Are you doing this for her, or for you?” The trips home stopped.
The Lehman’s teenagers grew up around Alzheimer’s. One child suggested a transplant, to get a body and head that both worked. With her mother’s Alzheimer’s, as is often true, the body was fine, but the mind was going. “The disease is very slow,” Ms. Lehman said. “It gives the family time to accept the inevitable.”
Her mother Roberta mellowed over the years. Before her mother was admitted to Windemere, she would lose her pocketbook, call 15 times a day or buy multiple vacuum cleaners.
Windemere, Ms. Lehman said, was invaluable: “It’s a beautiful place — the ladies who work there are wonderful. It’s like an extended family.” Her mother thought she was living in a posh hotel.
Ms. Lehman says her mother’s friendly greeting, “Hi, handsome, how are you?” often led people to think she was a visitor.
A caregivers support group at Windemere, which assists families with the frustration of the disease, was a great help for Ms. Lehman.
After suffering nearly a dozen years with Alzheimer’s, Ms. Lehman’s mother died in 2001.
Death often brings peace, an end to suffering. We felt that when my father in law died. For families of people with Alzheimer’s, there’s poignance to a disease which robs the mind.
One woman who lost her father to Alzheimer’s poured her grief onto the stage. Maureen Hourihan’s play, Slow Train Coming, will be staged tomorrow, Saturday, Oct. 13, at 7 p.m. at the Vineyard Playhouse. Tickets are $20. Proceeds go to Alzheimer’s Services of Cape Cod and the Islands.
For those who can’t make the show, the eighth annual Alzheimer’s Walk kicks off Sunday, Oct. 14 at noon from the Tisbury Senior Center. It’s a great way to support a very worthy cause.
For more information on the play or the walk, call Alzheimer’s Services at 508-775-5656 or visit alzcapecod.org/walk.
Tom Dresser lives in Oak Bluffs and is a regular
contributor to the Gazette.