A steel mind dulled of life’s memories

Brad McDonald enjoyed a career in the steel industry spanning 37 years, starting on the factory floor as a teenager and working his way up to Operations Manager.

His career was full of responsibilities and success, and provided the financial support for his family – his wife, Jo, who also worked for Union Steel, and their two sons Lachlan and Matthew.

Yet a series of events over four years, following Brad’s redundancy, turned the close-knit family upside down.

At the age of 58, Brad was diagnosed with Alzheimer’s disease – the most common type of dementia in younger people.

“Brad’s job was really familiar to him, so after his redundancy four years earlier, this is when things started to become a bit difficult,” Jo, 47 says. “We just noticed little things happening. He had lost his get up and go, and one day Brad just broke down.”

Younger onset dementia, the term for dementia diagnosed in people under the age of 65, is similar to dementia in older people. In both younger onset and older age, dementia is an illness that causes a progressive decline in mental function with symptoms such as loss of memory, intellect, rationality, social skills and normal emotional reactions.

The disease affects around 26,000 Australians. The first symptoms are not memory loss, as in older people, but rather problems with vision, speech, planning, decision-making and behaviour.

Conditions such as vitamin and hormone deficiencies as well as depression, infections and even medication can produce symptoms that are similar to dementia. As a result, early diagnosis in younger people is often more difficult, but so critical.

For Brad, his diagnosis of younger onset dementia was a journey over several years, originally misdiagnosed as depression.

“After his redundancy Brad was successful in securing another Operations Manager position in the steel industry, and despite the familiarity of the work he was unable to make the probation period,” Jo says.

A series of further events, including a loss of vision while driving, and a deterioration in Brad’s understanding and processing, saw Jo question if there was a bigger issue.

The McDonalds were referred to a neurologist. No more than 30 minutes after they had arrived a series of short cognitive tests pinpointed Brad’s condition – Alzheimer’s disease.

“I was shocked at what Brad couldn’t do in the tests. He couldn’t put the numbers on the clock face and couldn’t recall things,” Jo says.

“I walked out completely shocked and not knowing what to do. All I had was a phone number of Alzheimer’s Australia.”

For the McDonalds, they quickly realised there was little awareness of the disease.

“We’ve changed Brad’s GP to someone who has the time to listen and understand, and reached out to a geriatrician who has connected us to the Memory Clinic at Prince Charles Hospital and to a number of support groups for younger onset dementia,” Jo says.

“While we’ve had some great support, we’ve also hit walls. For example, when Brad collapsed from medication side effects and was in Coronary Care the medical team essentially walked away and discharged Brad when they learned of his disease.”

Striking Brad at such a young age has significantly impacted the whole family with the loss of his income and driver’s licence.

“With Brad not driving it was just really difficult for him to continue working. Logistically, because I was working full-time, I wasn’t able to get him to and from work, so we made the decision for him to stop working and be at home,” Jo says.

“Obviously that had a financial impact. We had to adjust our living standards. We had debt that we had to pay so we had to sell our house, and live off what I earn.”

For the boys, they reflect on the impact and change. “I miss the ‘old Dad’. He was always caring, and still is. I just see other fathers, and I can’t imagine Dad being like that, taking up that normal father role,” says Lachlan, 17.

“You can’t anticipate anything, it’s an emotional rollercoaster, and you just need to be open to anything. Just take each day as it comes.”

His brother Matthew, 18 says: “Everything’s different now, you keep going day-by-day. It’s been so long now, Dad’s dementia is almost normal, but compared to what he was to now, it’s two totally different people. These days it’s tough, you can’t have a conversation with him.”

Today Jo resumes full responsibility of raising their family, managing financial responsibilities, and caring for Brad.

“Brad was home alone three days a week. I’d call him constantly through the day. One day I couldn’t get hold of him and that was a bit scary,” she says.

Matt shares: “There was that time Dad went to the bottle-o. He couldn’t find his way home. He just sat on the kerb and started drinking. I came past, found him and brought him home.”

As Brad’s condition progresses and he is more dependent on care, Jo takes on more responsibility while ensuring everyone in the family has their own lives and independence.

“I found I was relying on the kids. They’d be home from school or work and I’d be asking them to just stay there until I got home from work. They’re kids, they need to have their own lives,” says Jo.

“Plus, it’s important for Brad to have his independence, for him to feel good about himself. His speech is hard now and at the point where he forgets words but we work through it.”

Earlier this year, on advice from their geriatrician to look for daytime care for Brad, with support of Dementia Australia (formerly Alzheimer’s Australia), they were successful in their application for NDIS funding for dedicated carers to support Brad. This funding now provides the family with the peace of mind knowing Brad is safe.

Finding the right carer for Brad has been critical, identifying that with the progression of Brad’s Alzheimer’s, he requires the same carer and familiar face each day.

Wendy, one of the Carinity Home Care Lifestyle Carers, is Brad’s dedicated daytime carer at the McDonald’s home four days a week.

“I don’t just care and support Brad – I support the whole family such as preparing meals, helping with the groceries and cleaning,” Wendy says.

Reflecting on caring for someone with dementia, Wendy says: “Each day is different with Brad. I have to pick-up on his energy and get a feel for what’s going on in his head.

“Not knowing Brad before his diagnosis can be hard at times, not knowing what he was like, what motivated him, the way he thinks. So I really have to read his body language all the time. My goal each day is to support him emotionally.”

Keeping Brad physically and mentally active is a focus for Wendy, tapping in to his senses and memories including listening to his favourite rock music and trips to the ocean where he “just lights up”.

Brad has joined the Remember Me – Younger Onset Dementia Social Group which brings people together for programs and activities around Brisbane including a dedicated session at GOMA.

“It is extremely important for us as a family, and is our aim, to have Brad at home with us for as long as possible. Family was everything, that was all he ever wanted. With our newly formed relationship with Carinity and Wendy this goal is now an achievable goal,” Jo says.

Jo, Matthew and Lachlan are planning their annual holiday with Brad at Caloundra – the familiarity the McDonald family can once again bask in.

“Dad’s always happy there, we’ve always had good memories up there. It makes you just feel so happy seeing and knowing Dad’s in a good space, and making the most of life. You can just see the old Dad. It’s just awesome to see,” Lachlan says.

You are not alone. Dementia Australia can put family and carers in touch with other families and carers of people with younger onset dementia, and provide links to support groups. Dementia Australia offers support, information and referral services and counselling. The National Dementia Helpline on 1800 100 500 can be contacted anywhere in Australia. Information and resources are also available online at dementia.org.au