Tuesday, November 18, 2008

Reflecting on a Life Lost to Alzheimer's


He came home with a note from the doctor in July 1999 that said "symptoms of Alzheimer's like dementia."

"I get a quick flash of what my life will look like, and I turn away from it because I'm scared," he said.

When he began to wander, they put bells on the doors so they'd know when he was heading out.

"From then on, he was never the same," Cross said. "He stopped getting up. He barely was eating. He slowed right down, stayed in bed."

"When he died, it felt like the air whooshed out of me -- and it didn't," she said. "I don't think I was really even breathing. Then it just was like I felt at peace. At that point, Alzheimer's wasn't defining him -- or me."

This is a well written, thought provoking, moving article. The way it should be if you ask me.


Reflecting on a life lost to Alzheimer's

BY SUSAN M. COVER

Christy Cross said goodbye to her husband the same way they began their married lives together -- aboard a ferry in Casco Bay.

For nine years, Cross, 56, of Hallowell, cared for her husband, Jeremy Ray, as he slowly faded away after a diagnosis of Alzheimer's disease.

Through it all, she wanted to preserve his dignity, and the memory of him as a vibrant, warm and loving man.

On the night of Sept. 22, Ray died at Glenridge, MaineGeneral's Rehabilitation & Nursing Care center. Six days later, she had his ashes scattered at sea.

"When he died, it felt like the air whooshed out of me -- and it didn't," she said. "I don't think I was really even breathing. Then it just was like I felt at peace. At that point, Alzheimer's wasn't defining him -- or me."

For years, Cross and her daughter, Lisa McGrotty, served as the primary caregivers for Ray in their Hallowell home. The women worked for the state during the day and, with help from home health aides, managed to provide the care he needed until July 2007, when he moved to Glenridge.

They want Ray, 65, to be remembered as the charming, irreverent, kind and funny man he was; the loving husband and father, the resin salesman, the Scrabble player, the English gentleman with impeccable manners.

The man who, in a 2005 interview, tried to describe just what it was like to suffer from Alzheimer's disease.

"I get a quick flash of what my life will look like, and I turn away from it because I'm scared," he said.

A year later, when answering questions became even more difficult, he still wanted to share his feelings.

"I literally don't know whether I should be grabbing myself by the ears and saying, 'Hold on to it man, hold on to it, we'll get through,'" he said.

Ray, Cross and McGrotty opened their home to the Kennebec Journal and Morning Sentinel three years ago as a way to share their experience with Alzheimer's disease. As Cross wrote in an e-mail at the time, she was willing to let the public see their day-to-day lives "warts and all."

"Basically, we did what we did," Cross said in a recent interview. "It was neither fast nor slow, it was just a part of life. Sad, very sad. Sure wish it hadn't been this way, but given that it was, we and Jere did the best we could. And I think we did well."

New start

Cross and Ray wed in 1997, a second marriage for both.

A little more than a year later, Ray went to a doctor and was diagnosed with depression. When those medications didn't work, he returned to the doctor.

He came home with a note from the doctor in July 1999 that said "symptoms of Alzheimer's like dementia."

Just two years after their marriage, he was diagnosed with a disease that would slowly take away his freedom, his ability to communicate clearly, and his dreams of a new start with a new wife.

Cross and McGrotty, along with McGrotty's husband, Charles, moved in to a house on Pleasant Street in Hallowell to share in the caregiving duties.

They became an active part of a lively neighborhood that welcomed them to Halloween parties, dinners and parades.

In addition to being part of the community, Ray participated in activities for those with dementia at the Cohen Center, until the morning excursions became too exhausting for him.

They hosted family at Thanksgiving, decorated the Christmas tree and made life as normal as possible.

When he began to wander, they put bells on the doors so they'd know when he was heading out.

By July 2007, they could no longer care for him safely at home. At this point, he talked a lot, but very little of it made sense. He could no longer control his bowels.

Cross wasn't sure he recognized her most days.

The final year

After a rough start at Glenridge, Ray seemed to adjust to life at the nursing home.

He spent a lot of time walking the halls, where locked doors with codes keep patients safe as they amble up and down the hallways.

In August 2007, he chatted happily -- and nonsensically -- with Cross about his work as a resin salesman, a job he hadn't had for years.

"We haven't done anything like that yet, but if something comes out and this is what it looks like, you take it from here, this is what it looks like, so I said fine, whooo-whooo-whooo hi boss," he said.

In March of this year, Ray started having seizures. By May, he was back up and walking around and talking, but none of it made sense.

And then, about six weeks before he died, he had a grand mal seizure that sent him to the hospital.

"From then on, he was never the same," Cross said. "He stopped getting up. He barely was eating. He slowed right down, stayed in bed."

He fell and injured his head, which healed quickly, and his shoulder, which did not, she said.

"I got a call at work the Thursday before the Monday he died," she said. "I don't know what she said, but basically it was, this is the beginning of the end.

"So I went into a conference room, put my feet up on the table in the dark, and sat there and cried for a bit," she said. "I thought, 'I don't have a plan.'"

Saying goodbye

Cross went back and forth to the nursing home several times over the next few days.

"By Saturday, it was pretty clear it was going to be soon," she said. "He was not responding to anything. I don't think he could see. He wasn't doing anything. He hadn't been eating."

Ray died on a Monday, at 10:40 p.m.

"I just sat with him," she said. "And then he died. He just stopped breathing. And that was it."

Ray never wanted to discuss funeral plans or whether he preferred burial or cremation, Cross said. Since they had had not purchased grave sites, she decided to go with cremation.

They lined up the ferry, got a bagpiper, arranged for food and, when the day came, set off in rainy weather for the ceremony.

"It turned out to be probably the perfect day for it," she said.

There was a light rain, and it was warm.

When they were married, those who attended the ceremony presented them with flowers and notes of congratulations.

At Ray's funeral, family and friends tossed large white mums with notes attached off the stern of the boat. The gray-green water, fog and rain provided a dark background for the final goodbye.

"There were these flowers in this meandering stream behind the boat in the ashes," she said.

Cross's grandson, Sammy Redd, 4, tried to comfort his mother, Melanie, on the day of the memorial service.

As Cross remembers it, he shared his idea of heaven.

"He said take the boat out and turn right and go to heaven," she said. "Heaven is a beautiful city. Go to heaven and we say hello to Jeremy, not goodbye."

Susan Cover

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