Sudbury couple reflects on living with early-onset Alzheimer's 1 year after diagnosis

Peter Pinkerton of Sudbury was diagnosed with early onset Alzheimer's on July 6, 2017. He was 53 at the time. It's been one year since he got that news. There have been major adjustments for him and his family during that time. His wife Pauline is his primary caregiver.

Pauline Pinkerton has been her husband Peter's caregiver since he was diagnosed in July 2017

Peter Pinkerton, 54, of Sudbury has early onset Alzheimer's disease. His wife Pauline is his primary caregiver. She had to put a sign on the can opener 'This side up' to help Peter avoid frustrations with the utensil. (Angela Gemmill/CBC)

Peter Pinkerton of Sudbury was diagnosed with early onset Alzheimer's on July 6, 2017. 

He was 53 at the time.

It's been one year since he got that news, and there have been major adjustments for his family during that time.

His wife Pauline is his primary caregiver. She is off on disability benefits, and is able to care for Peter on a day-to-day basis.

Alzheimer's disease is a common form of dementia, a progressive brain disorder that involves memory loss, difficulty performing activities, and includes a change in behaviour, reasoning and emotions.

Peter calls this past year a roller coaster ride.

"The dementia has progressed some, in different ways in terms of dizziness, fog; communication has been affected, in terms of when I'm speaking say with family or with Pauline; getting my ideas across; also coordination, my physical coordination has been affected," he said.

Pauline uses the word 'challenging' to describe the past year.

"I've noticed Peter from the good — the man I married — to this man I hardly know. His personality has changed."

Working to keep his dignity

She adds that her husband's communication skills and demeanor have been affected by the disease.

"I help him out with whatever he needs, sometimes it's just a matter of putting a little sign up on how to use the can opener," she said.

"I help him out in little bits, but I still keep his dignity."

Peter adds that its been difficult comprehending that the changes in him will continue and he is concerned for his wife.

"The affect that [the disease] is having on my wife Pauline. And that I sometimes inadvertently hurt her feelings, not meaning to, that bothers me," Peter said.

Social, cognitive programs, counselling helpful

The couple says the programs offered by the Alzheimer's Society Sudbury-Manitoulin North Bay have been helpful over the past year.

Peter and Pauline both attend Minds in Motion, which is a community-based program that provides cognitive stimulation and physical activity. They attend the support groups the agency offers, and Peter also takes part in Urban Poling, group hikes using fitness poles.

Changes have also been made to Pauline and Peter's home, including installing a chair lift to assist Peter in getting up and down the stairs. (Angela Gemmill/CBC)

The Alzheimer Society has provided each of them with a First Link navigator. This is a counsellor who helps to navigate the health care system, and offer one-on-one support, like talking over concerns and problems that may arise.

Pauline says she likes being able to talk things over with the counsellor, particularly when she gets frustrated with Peter's behaviour.

"I just air my views and air my frustrations out and they bring me back to a state where I'm calm again and able to look at things a little different," she said.

Growing statistics=demand for programs 

The goal of the Alzheimer Society is to help individuals with dementia to continue living well in the community.

"Cause we know that if we do that, if we keep people out of long term care and out of hospital, we're doing our part in the savings around the health care system and less stress on the health care system," executive director Stepahnie Leclair said.

According to recent statistics from the Alzheimer Society Canada, 25,000 new cases of dementia are diagnosed every year.

The Sudbury-Manitoulin North Bay branch has seen attendance at its support groups more than double over the past two years.

Jessica Bertuzzi-Gallo, public relations and public education supervisor, says its important that the agency provide help for caregivers as well.

"A care-partner for a person living with dementia provides, they say it's 26 hours of unpaid care a week, whereas other care partners it's 17, so the burden on them is significantly higher than other caregivers."
Jessica Bertuzzi-Gallo is the public relations and education specialist for the Alzheimer Society Sudbury-Manitoulin North Bay. (Angela Gemmill/CBC )

Both Leclair and Bertuzzi-Gallo say they want to enhance what the agency offers to caregivers because they see the added stress these individuals are under, but that takes government funding.

"If we don't take care of our caregivers, those offering all those hours, we will see two people using the health care system, instead of just one," Leclair said.

"We need to make sure that our programs and services are there to support caregivers so that they're not affected by all those care-giving hours."

'We're not alone'

Peter Pinkerton says the programs and counselling from the Alzheimer Society have been valuable to him and his wife since he was diagnosed last summer.

"To know that we're not alone, and that people that want to help you are there," he said.

For other caregivers, Pauline encourages them to have patience with their loved one who has dementia.

"When you do caregiver activities with your special someone give them little tasks to do, not the whole thing all at once. Just do little bits at a time. Baby steps."

Listen to the interview here.

It's been a year since a 54-year old Peter Pinkerton of Sudbury was diagnosed with early onset Alzheimer's Disease. His wife, Pauline Pinkerton, has been his primary caregiver since then. We checked in with the Pinkertons six months ago. The CBC's Angela Gemmill sat down with the couple to find out how things are going a year after Peter was first diagnosed. 8:23

About the Author

Angela Gemmill

Journalist

Angela Gemmill is a CBC journalist who has covered news in Sudbury, Ont., for 13 years. Connect with her on Twitter @AngelaGemmill. Send story ideas to angela.gemmill@cbc.ca

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