A journey of Alzheimer’s

White Rock resident recounts journey from daughter, to caregiver

The reversal of roles was one of the most difficult challenges that White Rock’s Gina McCulloch has had to come to grips with.

McCulloch’s mother Anna Baldwin and father Ron brought their family to Canada in 1957. When McCulloch was teased in the classroom for her English accent, her mother was there as a source of comfort.

Now, McCulloch – the honouree of this year’s Walk for Alzheimer’s to be held next month in Surrey – travels to Delta View residential care home on a daily basis to comfort her 97-year-old mother.

McCulloch, 70, noted her mother’s psychological capacity has been on a steady decline since her journey with Alzheimer’s disease started more than 15 years ago. She said she began to notice that her mother wasn’t as sharp as she used to be, but her condition drastically worsened when Ron passed away in 2004.

There was the beginning of irrational decisions and accusations that people were stealing from her, and she began hiding money.

The family initially thought the contrast was a result of going through the grieving process, but they say Baldwin never returned to her old self.

Once, a solicitor came to the door and sought payment to prune a holly bush in front of the house. He requested $1,000 for the work, and she paid in cash.

“That’s just one. I think they must have given out her phone number and passed it on, because then people started to come for various things. Vacuum cleaners, someone changed the filter on the furnace – that was $1,000,” McCulloch told Peace Arch News at her home last week, the same home where her mother used to live.

Not only had people started to take advantage, but McCulloch noticed her mother starting to make mistakes that put herself in danger.

“After about five years, she couldn’t manage on her own. She was having kitchen fires, the cupboards were on fire because she would put things on the stove and walk away,” McCulloch explained.

She said her mother was in denial that she had dementia, even after being diagnosed in 2007. Baldwin developed strategies to hide the memory loss that’s associated with the disease. She knew – for example – that her daughter would call her every evening and ask her what she had for dinner.

“She would have sticky notes by the phone. It would say ‘tell Gina I had shepherds’ pie for dinner.’

“She had sticky notes everywhere, as a means of covering up.”

McCulloch said the family took her mother’s licence away and unplugged the stove. But by 2010, they realized she couldn’t live alone.

McCulloch and her husband, both retired, created a basement suite in Baldwin’s house in White Rock, and from that point forward, became her 24/7 caregivers.

Although exhausted both physically and mentally, McCulloch was “determined” to keep her mother at home.

“And then she had congestive heart failure,” McCulloch said, adding that her mother’s Alzheimer’s symptoms took a turn for the worse after the 2015 incident.

A social worker at the hospital told McCulloch that she could not take her mother home and, if she did, McCulloch could be liable if her mother fell or injured herself.

McCulloch said that – at the time – she was angry with the social worker’s directive, but today she has a different opinion on the decision.

“It would have been so difficult for me to make that decision. Would I have ever done it? I probably would have waited too long. They made it for me, it was taken out of my hands and probably for the best,” she said.

McCulloch said her mother is approaching the advanced stages of Alzheimer’s, and one of the ways she can measure the disease’s progression is through the activities she does with her mother.

For all her life, Baldwin has been an avid reader. One time, before moving into residential care, Baldwin was so caught up in reading a novel that she didn’t realize the house was starting to billow with smoke. Luckily, McCulloch said, a neighbour noticed and came to help.

When Baldwin moved into residential care, her passion for reading books began to fade.

McCulloch started to bring over children’s games and other tools to keep Baldwin occupied on daily visits. McCulloch said she started with toys that were for children under the age of 10, and now brings toys that are for children ages two to four.

“That role reversal is very difficult for many people,” McCulloch said. “For me, my mother is the child and I’m the parent. I see her there and to me she’s still my mother… that’s the shell. Who she is, is really, like a child. It’s difficult to ever really accept that – but you do.”

McCulloch, who has been attending a White Rock Alzheimer’s support program since 2015, said one of her mistakes was not getting involved with the program sooner.

“I started going and I should have been going before,” she said.

McCulloch said she didn’t initially go to the working groups because she felt as if she didn’t have enough time, “but if I had gone, I would have been better able to care for my mom.”

McCulloch said the Alzheimer’s Society of BC helped her navigate through the health system, and were available to meet on a one-on-one basis.

She says the stress that she has to go through pales in comparison to what her mother deals with. It’s difficult, McCulloch said, to watch her mother dart her eyes back-and-forth, as she attempts to make sense of a seemingly straightforward situation.

“No matter how hard it is for the caregiver, it’s harder for them,” McCulloch said.

Each year, the White Rock, Surrey and North Delta 2018 Investors Group Walk for Alzheimer’s selects a resident as an honouree.

Money collected through the May 6 event, at Eaglequest Golf Course, is to go toward Alzheimer’s support programs, education and services.

The Alzheimer’s Walk is held in more than 20 communities throughout the province. To donate, start a team, sponsor or join the walk, visit walkforalzheimers.ca. More than 70,000 are affected by dementia in the province.

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