Alzheimer's disease devastating to P.E.I. family

Jim Day jday@theguardian.pe.ca
Published on June 13, 2015

Marlene Doiron’s transformation from wife to caregiver has been crushing.

For the past six years, she has been watching with an aching heart as Earl, her spouse of 38 years, succumbs to the ravages of Alzheimer’s disease.

Earl, a 62-year-old Tarantum resident, was for many years “a hard working man, sun up and sun down,’’ Marlene recalls fondly.

He farmed. He did carpentry and siding work. For a handful of years, he took meticulous care of Mooney’s Pond in Peakes.

He fathered five children: Dean, Ryan, Amanda Drake, Brady and Janelle Doiron.

Raising draft horses was a passionate hobby. He gave sleigh rides in the winter. He showed the horses at the Provincial Exhibition in the summer.

The mere mention of these powerful beasts brings a brief spark to Earl’s eyes that today more typically hold a vacant or faraway look.

Dementia, a progressive and fatal brain disorder, has reduced Earl’s independence to close to nil.

He can no longer be left on his own, even for short periods. That is too dangerous.

Today, a tremor causes his right hand to constantly shake.

For the past month, he has been dragging his feet - literally.

Marlene picks up the slack - the ever-increasing slack.

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Earl used to cook, and cook quite well. No more.

He would do laundry, but not now.

So Marlene does all the work and cares for her husband, which is a great deal of work in itself.

She makes sure Earl takes his medication, placing pills on a plate before her husband morning, noon and night.

At 60, Marlene, who battles with arthritis, also has the physically demanding work of cleaning Stratford Elementary School five days a week.

While she is working away from home, one of her children or her brother takes care of Earl.

Caring for the man is a team effort and a growing task.

More and more, Marlene feels less like a wife.

More and more, she feels more like a caregiver.

The pair, she reflects, used to work so well together. Now she takes care of everything, including Earl.

She barely pauses when asked to quantify the mental and emotional toll of being a caregiver to her husband for the past six years and counting.

“From one to 10 - 10,’’ she says.

“It’s devastating. It’s devastating - and it’s devastating for him.’’

Still, she is a strong-willed woman. She is determined to care for her husband.

“I hate to see Earl sick but you take those cards He gave you,’’ she says.

“I’d like to keep Earl as long as I can.’’

She notes, though, if and when Earl becomes incontinent, she will look to move her husband into a care facility.

Earl bristles at the thought of living in a nursing home.

“I ain’t going there,’’ he says.

“I do my best,’’ he adds. “I know now I’m not as good as I was years ago.’’

His best often falls short.

The other day, he called his wife Mary. That is the name of Marlene’s late mother.

Earl also causes one of his sons to become quite emotional when unintentionally calling him by the wrong name.

Marlene, drawing on six years of experience in providing loving care to her ill husband, offers the following advice to people who have a family member or friend with dementia.

“Just love them as much as you can,’’ she says.

jday@theguardian.pe.ca

Twitter.com/PEIGuardian

Detailing dementia:

— Dementia is a collective term for a group of brain disorders. Alzheimer’s disease is the most common form.

— Dementia is progressive and fatal. Symptoms include loss of memory, problems with understanding, speech and judgment, and changes in personality and behavior.

— Dementia is not a normal part of aging, but age is the biggest risk factor. After 65, the risk doubles every five years.

— Today, 747,000 Canadians are living with Alzheimer’s disease or other dementia - a number expected to rise to 1.4 million in less than 20 years.

Source: Alzheimer Society