The dementia journey – still telling it like it is

Much has been written about the dementia journey. But what is it like living it? For Dementia Action Week we revisited Bendigo mother and daughter, Mary and Liz Graco who are updating us on their story in the hopes of helping others in similar situations.

Mary, who has lived with dementia for the last ten years, lives independently in her unit behind her daughter’s house, but now has carers from Uniting AgeWell come in twice a week on the days she is not attending activities at The Cottage, to remind her to have lunch. This allays Liz’ concerns that sometimes Mary forgets to have a meal, and only eats yoghurt.

The disease is degenerative and Mary is now transitioning to a home care package through Uniting AgeWell to meet her more specialised needs. Liz is grateful there will be a continuum of care for her Mum no matter what happens. And she says it’s comforting to know Uniting AgeWell is not just behind them, but walking with them, every step of the way.

Although her Mum has slowly-advancing dementia, Liz still finds it impossible to pinpoint when 92-year-old Mary’s now decade-long dementia journey started. “I started to notice changes when my Dad died in 2005. Mum looked after him, she was busy and had a clear purpose in life. And when he passed away there was a huge void in her life.”

Liz, who is a hospital nurse, started noticing her Mum becoming more forgetful. “There was no real alarm bell moment, I just noticed that she asked the same questions over and over again. And she started losing things more frequently, like keys, handbags, purses… you name it!”

There were other problems too. Liz says she learned that Mary had been withdrawing large sums of money from the bank each day – and there is still no record of where it is or what she spent it on. Then she bought an electric scooter and started driving it down the middle of the road, narrowly avoiding being hit by a truck, when Liz was at work. To protect her Mum, Liz took the difficult decision to stop her from driving the scooter and to co-sign for money that Mary withdrew from the bank.

Liz says her Mum went through a stage of being angry with her over this. “I understood how she was feeling. It was a loss of independence. She was lashing out against the disease and all its ramifications, and because I am the person closest to her, it was directed against me.”

Liz believes that Mary, who was diagnosed with moderate dementia, should do as much for herself as she can to keep her as cognitively aware as possible. “But some days are worse than others, I can see it in Mum’s face when she’s having a bad day - physically she looks like a different person. It’s a case of taking each day at a time.”

The dementia journey has taught Liz a lot too. The disease is degenerative, and Liz knows that it’s important to spend quality time with her Mum while she still can. She says her children are also learning. “The other day I brought Mum along with me when I had tea with my sons, and one of them said to me, ‘GG (Great Grandma) won’t remember being at tea with us’ and I told him, ‘But she will enjoy herself at the time, and that’s what counts.”

Mary is matter-of-fact about her dementia diagnosis. “It’s just me getting older, there’s nothing to be embarrassed about. It’s my system breaking down, it’s just a part of life.”

She goes to activities four days a week and for weekend respite care every 4-6 weeks at Uniting AgeWell’s Seven Hills Cottage Respite House in White Hills which affords Liz a much-needed break.

Mary loves attending but can’t recall what activities they do. “That’s the way it is,” she says. “There's no point worrying about what I can’t remember. I’m really happy right now.”

She’s equally pragmatic about her diagnosis. “I still function, I am physically healthy and go for lovely bush walks and that’s the most important thing in the world to me. I love listening to the magpies and seeing the kangaroos, it is beautiful. I always feel uplifted after a walk.”

Liz says, “The importance of routine for Mum is evident when she does not remember what exactly her activities are, but she knows she needs to get up and get dressed as someone is coming to pick her up. She waits for them each morning and when the person from Uniting AgeWell walks around the corner, Mum seems to recognise them and greet them with a warm ‘hello’ and ‘I’m ready.”

Liz also appreciates the respite care that the weekends away provide. Juggling her busy life with a carer’s role is exhausting. And while she has broad shoulders, she gets exhausted. She used to nurse in a dementia unit in an aged care facility, so she knows what lies ahead.

Mary is now transitioning to a home care package through Uniting AgeWell to meet her higher needs.

“But I know that Mum will need to go to Strath-Haven Community one day,” Liz says. “There will come a time when she needs specialised care that I simply cannot provide.”

Find out more about how Uniting AgeWell approaches Dementia Care