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‘Mum didn’t know who I was’

Elaine with Rebecca at Lake Vyrnwy in Wales in 2013
Elaine with Rebecca at Lake Vyrnwy in Wales in 2013

THE day I first heard my mum might have Alzheimer's disease, I cried my eyes out. I didn't really know what it meant or how it would affect her. But I knew it was bad.

My mum, a trained nurse, had got back from The Gambia where she'd been a Methodist missionary for five years with my dad after many years serving the church in the UK and overseas.

Living in Sydney, I was told over Skype that Mum could have a form of dementia. My dad tried to play it down. "Everything's fine," he said - for a while, I kinda thought it was. Maybe she's just finding it hard adjusting to being back in Britain after years in Africa, I thought.

However, as the months and years went on, it was clearly more than that. My mum - when she was well - was a powerhouse. She was one of the first female Methodist ministers in Britain. She was a great public speaker, confident, strong and a trailblazer within the church and our community.

But something happened. Suddenly she got confused. She could never find her glasses - or anything. It escalated. She couldn't find her house.

Rebecca’s mum Elaine as a child.
Rebecca’s mum Elaine as a child.

Mum would decide to go for a walk - while my dad was asleep - and get lost. She forgot where she lived. The police picked her up a few times and brought her home.

It turned out she had Alzheimer's disease and had probably had it for close to a decade.

When I went back to the UK in 2013, she seemed OK at first but she obviously wasn't. She would wander away and I always went to look for where she was. I tried to talk to her about what she was going through, but she didn't want to discuss it.

Being born in the 1940s and growing up in the post-WWII era when people didn't talk about dementia or mental illnesses had left its mark. "I don't want people to think I'm a crazy lady," she told me. The stigma of having a degenerative brain disease was too much for her and for years, she refused to get diagnosed.

My dad was caring for her at home but eventually it became too much. It got to the point where she refused to leave the house and never felt settled anywhere - my parents moved house three times in just a few years.

Nothing worked. After Mum's sister suddenly died, things got much worse and it became clear she needed to go into a residential care home.

When I flew back to Birmingham in 2015 with my husband, our three-year-old and five-month-old baby, I didn't know what to expect.

I have rarely visited care homes and to be honest, they freak me out a little.

Elaine holding on to her mum’s hand in Blackpool in the 1940s.
Elaine holding on to her mum’s hand in Blackpool in the 1940s.

With my family in tow, my older sister and my dad, we headed over to see Mum. I was nervous and emotional. I hadn't seen Mum for two years and making Skype calls had become increasingly more difficult - especially with two small children.

When I got to the care home, we took the lift and walked down a narrow corridor to a living room where there were several elderly, vacant looking residents. I didn't even recognise Mum.

She had aged so much since I was last in the UK. She looked at me with a glazed expression and looked away. My sister had to explain who I was. "This is Rebecca," she told her gently while touching her arm. It was pretty clear Mum had no idea who I was.

I had a lump in my throat, I found it hard to speak. I cuddled my three-year-old who didn't really understand what was going on. My baby was quiet in her pram.

Elaine with her granddaughter, Sienna aged 10 months in 2013
Elaine with her granddaughter, Sienna aged 10 months in 2013

I said: "Hi Mum, do you remember your granddaughter, Sienna?" The word "mum" seemed to awaken something, and it wasn't good. She went from being unresponsive, to being really angry. Or that's how it felt, anyway. "Oh, you came did you?" she said. "You only come back when you've had a baby. You say: 'Here's a baby, here's baby ...'"

I didn't know what else she was going to say. I could feel the tears welling up, the lump in my throat was unbearable and I couldn't swallow. I grabbed Sienna and got out of there, leaving my sister, my husband and my youngest, Erin, with Mum. Luckily, my husband has the gift of the gab and could talk underwater - a skill my kids have picked up - so made up for my absence.

The next day, I didn't want to be around anyone except Erin. I headed to the nearest shopping mall and spent the day alone, walking around H&M pushing a pram with tears streaming down my face.

It was about five days before I could bring myself to see Mum again. This time she remembered who I was and we talked about my kids and life in Sydney.

Mum would often forget who I was and where we were. During one visit, she started crying uncontrollably. "What's wrong, Mum?" I asked. "What will happen if ... if Dad dies?" she said, trying to remain calm. I thought she was talking about my dad, but she was talking about her own father who had passed away in the 1980s.

The next visit she asked me how many kids I had. I said two. "Oh, good. Don't have anymore, darling - two's enough," she said, completely oblivious to the fact I was her third-born.

Elaine working with patients with leprosy in Calcutta, India in the 1980s
Elaine working with patients with leprosy in Calcutta, India in the 1980s

I visited her several times while I was over there but the last one was the best - and the worst. I helped her to eat her food and we laughed together. She told me she loved me and said how proud she was of me. Sienna danced around the care home living room, talking to anyone who'd listen.

When I said goodbye, I knew it would be our last goodbye. I'd never see my mum again. I spoke to the carers and said I'd arrange to Skype but in the end, we never managed to. Mum deteriorated fast, she couldn't feed herself, needed help to go to the toilet and dress herself.

She died three months after we got back to Australia, just before Christmas 2015.

I got the call from my sister that Mum had been admitted to hospital and the doctors did not expect her to make it through the night. I'd just got back from one of my best friend's baby shower. In a way, that made it easier - it's the circle of life, I thought.

The next day, I was in Big W, alone with my baby girl in her pram. My sister called me, she exhaled gently and said: "Bec, she's gone." I spoke for about a minute and hung up. I felt like I was going to faint, I steadied myself against the shelves in the cosmetics aisle. Two ladies rushed to my side and asked if I was OK. I told them my mum had just died and they hugged me tight and tears streamed down my face.

 

Elaine with Rebecca at Lake Vyrnwy in Wales in 2013
Elaine with Rebecca at Lake Vyrnwy in Wales in 2013

One offered to drive me home.

As I held on to them, I thought about the kindness of strangers. That's exactly what my mum would have done if she'd seen an woman with a baby, crying in the cosmetics aisle of Big W.

How I got home that day, I don't know but somehow I did.

Since going back to work as a journalist, I've interviewed people with loved ones who have dementia like Nick Young who co-founded the gruelling Bondi2Berry bike ride, covering 155km to raise money for Alzheimer's Australia NSW.

Nick set up the 'Ride to Remember' with his riding buddy Pierre Sullivan after they discovered both their parents had been diagnosed with Alzheimer's, Nick's dad in 2011 and Pierre's mum in 2015.

"Pierre was aware of my dad and we had a little conversation," Nick told me earlier this year. "We went back riding and he said his mum had just been diagnosed with dementia back in Ireland. We decided we should do something about this so we organised the bike ride."

Currently there is no cure for dementia which affects 410,000 Australians, a number that is predicted to rise to one million by 2050.

Nick Young, who co-founded the Bondi2Berry bike ride, with his dad Doug who was diagnosed with dementia in 2011.
Nick Young, who co-founded the Bondi2Berry bike ride, with his dad Doug who was diagnosed with dementia in 2011.

The Dementia Momentum is an initiative to raise awareness about degenerative brain diseases and money to fund large-scale, "big data" research undertaken by CHeBA, the Centre for Healthy Brain Ageing, at the University of New South Wales.

"To change the future of dementia, our goal is to raise $10 million over five years to drastically advance our world-leading cognitive ageing research," a CHeBA spokesperson said. "The challenges of dementia are enormous and confronting.

"Fresh (epidemiological and clinical trial) findings provide more evidence that it is possible to delay the onset of dementia and provide a strong argument for large scale investment to prevent dementia.

"CHeBA's research aims to determine which risk and protective factors for Alzheimer's disease and other dementias are universal."

Dementia Momentum spokesman Richard Grellman's wife Suellen, 66, was diagnosed with advanced young onset Alzheimer's disease in 2011 and has been in residential care since 2014.

She can no longer feed or dress herself, go to the toilet unaided, remember anyone or walk.

Dementia Momentum spokesman Richard Grellman AM is ambassador for Wipeout Dementia which raises money for CHeBA (Centre for Healthy Brain Ageing)
Dementia Momentum spokesman Richard Grellman AM is ambassador for Wipeout Dementia which raises money for CHeBA (Centre for Healthy Brain Ageing)

"For me, our children, her family and our close friends, we have had to learn to walk this journey with Suellen, all sharing the desolate sense of helplessness, frustration and sadness that comes with knowing that there is currently no known cure," Richard said.

One of the fundraisers organised by the Dementia Momentum is Wipeout Dementia, an annual surfing contest that has attracted high-profile contenders including former Prime Minister Tony Abbott and former New South Wales Premier Mike Baird.

Heidi Douglass, from CHeBA, told news.com.au: "Dementia is now the second leading cause of death in Australia and a person is diagnosed with dementia somewhere in the world every three seconds.

"Physical exercise has positive and protective effects on brain function, not only reducing risk factors but increasing neuroplasticity which is the reason behind Wipeout Dementia."

The last Wipeout Dementia, which took place at Queenscliff on Sydney's northern beaches, raised a massive $96,000 for CHeBA while smaller corporate events are held during the year.

For more information visit dementia.org.au, to support the Ride to Remember visit bondi2berry.com or to help CHeBA visit cheba.unsw.edu.au.

Topics:  alzheimers disease editors picks health lifestyle

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