Written by Dementia Australia

Dementia has been an unrelenting and devastating presence in Lorraine’s life.

In August 2021, her husband and best friend, Al, passed away from dementia. His mum, her two sisters and brother had received the same diagnosis of early onset dementia many years before. Lorraine’s mum also died from the condition.

It means that Lorraine worries about the risks for her daughter, Laura, and granddaughter, Logan.

Changing the future

Lorraine hopes that raising money for Dementia Australia will increase the chances of a breakthrough for dementia research – for a better future for her family.

“Dementia Australia sponsors young researchers, and part of me thinks that this amazing younger generation coming through might have a different idea or approach. I hope that my contribution can support some of those innovative young minds. The simplest shift in perspective can change everything.”

Raising awareness is also high on Lorraine’s agenda. When Al could no longer cut up his food, he was too embarrassed to go out for dinner anymore. Over time the invitations dried up, and visitors dwindled. Friends no longer knew what to say or how to cope with the unpredictable nature of Al’s condition. After experiencing this sense of isolation, Lorraine wants to let people know that those impacted by dementia deserve to be seen.

“We can’t have all these people fading into insignificance.”

A beautiful man and dementia

Al with Lorraine and their only daughter, Laura.

For Lorraine, Al is a star who shined brightly and warmly throughout her life. Whilst he never sought to be the centre of attention, his personality and conversation drew people to him.

Lorraine describes him as a big, beautiful and strong country bloke who was funny, quick-witted, and knew how to tell a yarn.

He was utterly devoted to her and made sure she always felt valued and special. Al believed there was a high risk that he would have dementia. But when he first began to experience symptoms of depression, Lorraine thought – or hoped – that this was due to the incredibly challenging times they had experienced whilst caring for Al’s mum in their home.

Nevertheless, Al was convinced he was in the beginning stages of dementia. He was a builder by trade and had an “amazing brain for figures and working things out mentally’. But he began to struggle with the mental arithmetic that had always come to him naturally.

Al was 55 when he was diagnosed with early onset dementia. He and Lorraine were devastated. She describes how they shut themselves away and cried for the first couple of days. But she also recalls how they eventually got back up and decided to make the most of the life they had.

Lorraine’s respect for Al grew over those years as she witnessed him frustrated but never complaining. As his condition advanced, Al’s confidence began to fade.

“It’s more difficult for them than us in that first instance of shifting.”

Love and support during dementia

Lorraine and Al with their granddaughter Logan.

Caring for someone living with dementia can be a delicate balancing act. Lorraine found it hard to know how to protect Al’s dignity whilst still doing what needed to be done. She describes “losing so much of this person” but simultaneously not wanting them “to lose the essence of who they are”.

This manifested in trying to help Al in a dignified and respectful way.

Meanwhile, Lorraine was facing struggles of her own. Caring for Al chipped away at her sense of self. She was also tired out – balancing work, caring for Al, and fighting for funding for the in-home care support he required.

Lorraine was able to seek support during these challenges. She often used the Dementia Australia Helpline website and counselling services. The information she found enabled her to fight for and successfully secure an NDIS plan – which ultimately meant Al could stay in his own home for longer than would otherwise have been possible.

“In my darkest hours, I was able to pick up the phone and ring the Helpline.”

When Al had to go into care, Lorraine needed help. He was agitated - walking non-stop and rapidly losing weight. Dementia Australia was able to provide an assessment. The practical strategies they provided made a huge difference in settling Al into his new home for what would turn out to be his final few years.

Creativity, nature and fundraising

Lorraine still saw glimpses of the man she’d married despite dementia ravaging Al’s body and mind for 11 years.

Lorraine misses Al every day.

“I’m used to crying. I still cry every day at some thought or some little thing. I’m ok. I’m used to it.”

Lorraine and Laura now focus on what they can do to help other families impacted by dementia. Through their efforts so far, they have raised an incredible $47,000.

They took Laura’s artistic talent and Lorraine’s love of gardening and combined them to create “The Hollands’ Open Garden and Memory Markers Art Prize” in Dubbo. Lorraine describes their fundraiser as an “art in the garden event”.

It consisted of a cocktail party to announce the art prize winner, followed by an open garden and morning tea.

Entries for the art prize originally came from locals within the Orana region, but the reach of the art prize is now reaching artists Australia wide. The brief was to paint a memory and provide a 100-word statement to accompany it. Their way of linking art to memory raised awareness of dementia, which can often be hidden within a community.

Lorraine puts their fundraising success down to several factors. Here are her top tips to get your creativity flowing:

Enlist the support of family, friends and community.
Be passionate about your idea, believe in it and let it grow. People will share your enthusiasm.
Be brave. I was scared it wasn’t going to work. But I thought, ‘what’s the worst that can happen?’

Carrying on the love

Al’s daughter and granddaughter have a 50% chance of having the gene mutation for younger onset familial Alzheimer’s.

Lorraine wouldn’t change a thing about the lives created and the lives lost. When Laura worried about passing on the risk of dementia, Lorraine reassured her that although Al’s life may have been cut short by dementia, it was still a “beautiful life” of 60 years.

It was a life made bright by the precious, unconditional love they shared – and that’s the most important legacy for this family’s future.

Lorraine Holland Community Fundraising Story