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Jack Harrington was a handyman, a hiker, a traveller and was responsible for the audio visual department at the University of Lethbridge. But then he was diagnosed with Alzheimer’s disease.
“He was very meticulous,” describes his wife and caregiver Diane Muma.
“He was Mr. Fix It. I really miss that.”
When Harrington was 55, 56, his family started notcing changes in his personality.
“He started to lose the ability to do little things. He’d forget I asked him questions and I’d have to repeat them. Then he started becoming disinterested in his hobbies and his friends. I noticed a real advancement in the disease,” Muma described.
Eventually his friends stopped coming around to visit him.
She took him to a doctor who couldn’t find anything wrong, then changed doctors. The new doctor diagnosed him with Alzheimer’s disease, arranged for home care, and when home care quit because they deemed it was unsafe to continue, instead of spending their retirement travelling the world, Muma became her husband’s caregiver.
Harrington eventually had to be admitted into a long-term care facility when she could no longer cope with him on her own at home.
“He started getting really aggressive with his grandson when he had always been the light of his life. And we knew he couldn’t stay at home. It was a challenge, but we had to. It was very difficult,” she continued.
Moving Harrington into a long-term care facility was a far cry from the plans the couple made. Harrington was going to retire at 55, she says. She planned to work a few more years as a teacher and together they’d travel.
“We tried travelling. But I lost him in the Calgary airport. I had to go to the bathroom and I told him to wait right there and he wandered off. But the staff at the airport were very helpful. We found him,” she says.
“Travelling with a person with Alzheimer’s is like travelling with a very small child.”
She visits her husband every day and they continue to share many great moments together.
“The first home, he was treated very much as an invalid, which he wasn’t. He was still there. They’d do up his shirt and put his shoes on, which he could do on his own,” she says.
They eventually moved him to a different facility, Edith Cavell Care Centre.
But just because a person likes to wander, it doesn’t mean there is something wrong with them, perhaps they just enjoy walking; just because a person puts their fingers in their mouth, maybe that is just the best way they can experience the world. The key to handling a person with Alzheimer’s disease is compassion and empathy — treating them as an individual with a disease.
“Nobody picks this; it is a disease,” says Jay Barton, a clinical educator with Community Care, Alberta Health Services, while speaking to an intimate group at the Lethbridge Senior’s Centre Organization on Jan. 11. It is one of several presentations taking place for Alzheimer’s Awareness Month.
“Alzheimer’s is just one facet of dementia. It can affect your ability to complete the simplest tasks and it can have a major effect on your personality,” he says.
Barton spoke about the seven stages of Alzheimer’s in which the disease becomes progressively worse from simply forgetting dates to forgetting close friends and family to forgetting how to do even the simplest tasks including eating and going to the bathroom.
“Dementia is a general term that describes loss of brain function, memory and cognition. It is not a normal part of aging,” he stresses.
He said is it is not a single disease, but a syndrome.
“It really affects your cognition — the essence of what you remember.”
Barton noted it is important for health-care workers and care givers to separate the disease from the person and not judge them too harshly for their actions.
Communication is also improtant. When patients lose the ability to speak, most communication is conveyed through body language.
“Remember, these are the people who helped build this country and community,” he advises.
While he is an educator now, he also spent several years on the ground level as a nurse helping people with dementia.
“I’ve been punched, hit, sworn at and bitten, but there have also been days where I say, I can’t believe I’m being paid to play cribbage with people. I love cribbage,” he says, adding sometimes he took flack from supervisors about it.
“If all my work is done, why should I have to go sit in the nurses lounge? They need me now,” he says, adding that spending time socializing with Alzheimer’s patients is just as important as cleaning bedpans, making beds and helping them dress.
“If they aren’t posing a danger to themselves or others, then who cares?” he says.
The best course of action is to let the patients do what they want to do, keep to their own schedules, but keep an eye on them to make sure nothing happens, he adds.
He notes as the number of seniors grow, so do the cases of dementia-related diseases suc as Alzheimer’s. Alberta Health Services notes there are 103,700 new cases each year, which is predicted to grow to 257,800 new cases of year by 2038.
Barton says there are about 50 known causes of dementia.
People can start to exhibit symptoms of Alzheimer’s up to 20 years before they are even diagnosed with the disease.
Fortunatey, there is a strong support system for people and families coping with Alzheimer’s.
“In our neighburhood, there is Pop’s Pub and Stubbs Pharmacy, and we told the staff there that he had Alzheimer’s. They were very understanding. Everyone seemed to have their own connection to Alzheimer’s because one of their relatives had it,” Muma says.
“Their reaction was positive enough.”
She received a lot of support from the Alzheimer’s Society. The Lethbridge region office, located at #402-740 4 Ave. S., next to the post office, offers a wide selection of information as well as special events, especially during January, which is Alzheimer Awareness Month.
“People are concerned about the disease so we have a lot of information for them,” says Conny Schipper, manager of client services and programs for the Alzheimer Society of Alberta and Northwest Territories, Lethbridge Region.
These include a variety of books, pamphlets and DVDs about all aspects of the disease including symptoms, signs and what to do about them after diagnosis.
“We also have a support group that meets on the third Tuesday of the month,” she says, adding nobody has to go it alone and emphasizes caregivers need a break to take care of themselves as well.
“So we offer some group support for caregivers.”
One of the more interesting events this month is the Alzheimer’s Cafe, an idea Muma discovered in Nova Scotia and decided to bring here.
“We meet together in a social setting. It’s a place to feel welcome and accepted,” Schipper said.
The next cafe has Dr. Roland Ikuta speaking at the LSCO, Jan. 18 at 10:30 a.m. about the importance of early diagnoses.
The local group meets at the Round Street Cafe on the fourth Monday of the month. The next one is Jan. 23 from 6:30-8:30 p.m.
“It’s very good to support each other. We just need to connect,” Schipper continued. |
