Personal journey of caring for a spouse with early onset Alzheimer’s disease

Apr 15, 2021
Sylvia Bryden-Stock and Brian Stock tied the knot in 2013, after Brian was diagnosed with early onset dementia in 2010. Source: Supplied

Being a full-time carer for a spouse is no easy task, and former nurse Sylvia Bryden-Stock, 77, knows this all too well. Sylvia and her then-partner Brian Stock were enjoying life’s simple pleasures when tragedy struck. Brian was diagnosed with early onset Alzheimer’s disease at the age of just 62. However, instead of calling it quits on their long-term relationship, the pair tied the knot and Sylvia became Brian’s full-time carer.

There are an estimated 28,300 people in Australia living with early onset dementia. Also known as younger onset dementia, early onset dementia are the terms used to describe any form of dementia that develops in people under the age of 65.

Brian, who sadly passed away at the age of 72 in 2019, was diagnosed with the slowly-moving condition in January 2010. Sylvia says he started showing signs in 2008, however it took Brian some convincing before he went and saw a GP.

“He was running his own barn dance band and I was getting reports of him arriving late,” Sylvia tells Starts at 60. “One night, he didn’t turn up at all. Then other signs manifested until I was able to get him to admit to things like struggling with making a cup of coffee.”

After Brian was diagnosed, Sylvia took on the role as his full-time carer. At first, she felt pretty confident with her new role thanks to her background in nursing. However, as time went on and Brian’s condition worsened, things became more difficult.

“Even with past knowledge and skills and my faith, it did get overwhelming. But my determined nature and love for Brian made me determined to cope,” she explains.

“I had [planned] to do this journey completely at home, even as his brain [neurons] expressed increased aggression. I did my best not to allow myself to get cornered if his ‘naughty neurons’ were acting up, as he could unknowingly hurt me with a punch — along with verbal outbursts.”

Aggressive behaviour in people with dementia is not unusual. The behavioural changes are usually down to the person losing neurons in parts of the brain.

However, Sylvia went on to say that it wasn’t always like that. “He would often thank me for everything I was doing for him and, in the earlier days, [we] could laugh when he kept repeating questions and have a hug together.”

But as time passed, Sylvia had to acknowledge that she couldn’t do it alone, and Brian eventually agreed to having a carer come each morning. However, as Brian’s aggressive outbursts continued, Sylvia’s health suffered. She was diagnosed with high blood pressure and was put on medication.

Sylvia booked Brian into an aged care home a couple days a week to help take the pressure off. He was later moved in full-time, at the advice of the aged care home’s manager. While it was hard for Sylvia at first, she could rest easy knowing he was in good hands.

Now looking back on their journey, Sylvia, who recently released a new book The Rocky Road of Naughty Neurons: Our Journey with Young Onset Alzheimer’s Disease about their life together, admits that being a full-time carer came with its challenges.

“No two days are the same,” she says. “You become a bit complacent [when there’s a] few days without outbursts, and then suddenly the next day you’re treading [on] eggshells.”

For anyone thinking about becoming a carer for a loved one who suffers from dementia, Sylvia has shared some advice. First, she recommends “separating their behaviour as something that is not them”. She also believes it’s super important that you continuously acknowledge that you’re doing the best you can, and to take each moment as it comes.

Be patient and don’t smother them, Sylvia says. “Let them try before offering help, as they will react, because somewhere they believe they can do it.” And most importantly, ask for help when you need it, and talk to others who are going through similar experiences.

IMPORTANT LEGAL INFO This article is of a general nature and FYI only, because it doesn’t take into account your personal health requirements or existing medical conditions. That means it’s not personalised health advice and shouldn’t be relied upon as if it is. Before making a health-related decision, you should work out if the info is appropriate for your situation and get professional medical advice.

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Have you dealt with something similar? How did you cope with it?

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