Much has been written about the dementia journey – but what is it like adjusting to the new normal as you live with the disease?
It’s been ten years since Mary Graco was diagnosed with dementia, and she and her daughter Liz Graco, who is also her carer, have chosen to speak out about their experiences during Dementia Awareness Month. They're doing so for one reason: to help shine a spotlight on a disease that despite its increasing prevalence, so many are reluctant to talk about.
This is their story.
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.”
The 91-year-old lives in a unit behind her daughter’s Bendigo home, and spends her days going for walks along the lane in the bushland area she loves. She has a whiteboard in the dining room to remind her of appointments.
Mary goes to activities twice 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’d been starting to forget things, but it’s nothing to be ashamed of. Where I’m at is where I’m at. 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 always feel uplifted after a walk, I see something new every day. I watch TV too, but I can’t concentrate on reading anymore.”
And Mary is keen to talk about what it’s like living with dementia. “It’s sort of simple, really. The more we are informed, the better it is for everyone.”
Liz agrees, but is brave enough to admit the situation is far from being milk and honey, and that Mary’s journey has not always been one of sunny acceptance. And Liz is speaking out for one reason only: to help other carers. She feels it’s unfair to paint a rose-tinted picture which may create a false set of expectations for those families reading this article who are starting out on the dementia journey with their loved one.
Liz says her father, a Minister in the Anglican Church, died in 2005 – and things started to go downhill from then. “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.”
She 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…”
Liz is perceptive. She should be. She’s a nurse. “Mum definitely went through a stage of grieving after her diagnosis.”
Liz 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. Mary wrote a cheque for $4000 for an electric scooter and unbeknown to Liz, started driving it in the middle of the road when Liz was at work. Mary had never had a driver’s license before – this motorised scooter was the first ‘vehicle’ she had driven!
“A friend who is a truck driver was coming down the road, and had to brake sharply to avoid hitting Mum. It was hard, but I had to stop her from driving the scooter for her own safety. I also needed to protect Mum from any financial scams or abuse, and had no option but to speak to the bank and ensure that I co-signed for any money that Mum wanted to withdraw,” Liz explains.
Speaking about changes in her Mum’s personality takes courage. But then Liz has guts. “Mum went through a stage of becoming angry and paranoid. She was very upset with me for taking away her scooter, and I understood how she was feeling. It was a loss of independence. She also started saying awful things about me to people at church. It hurt, of course, but I understood that as well. 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.”
What did Liz do? “I tried to ignore what she was saying. I tried not to take it personally – I tried to keep on telling myself it was the disease. People who knew me and Mum knew what was happening - and did the same. But some days it was still really hurtful.”
Liz is a doer. She works full time at hospital and also at a vineyard on weekends. And she manages three soccer teams! She became involved with soccer when her two now adult sons started playing nearly 25 years ago. Then two years ago, at the age of 54, she started playing soccer for the first time to help make up the numbers for the women’s team. Now she’s the Vice President of the Bendigo Amateur Soccer League; the Epsom Soccer Club representative and Senior Properties Coordinator and played for the women’s team nearly every weekend over the winter season.
Because Liz has always know the importance of ‘doing’, she decided, wherever it was a safe option, to let her Mum be as independent as possible.
Liz speaks candidly about how hard it is has been, since her father passed away, watching and accepting the changes in her Mum. And that this journey has required a lot of change in her own life.
“At first I had been trying to do everything for her to make it easier for her. I knew what needed to be done, and I could do things faster than she could. But after a while I realised this was not good for Mum. She needed to do as much as possible for herself, even if she was slow. So I stepped back and just tried to watch from afar."
The no-molly coddling approach is still working. Mary weeds the garden, heats up meals in the microwave, goes for walks and loves spending time with her great-grandson, Sebastian. She also takes care of herself with showering and personal care, and doing a most of her own housework.
“Mum has moderate dementia, the decline has been quite slow, and I believe this is because I have tried to let her do as much for herself as she can,” explains Liz. “The challenge is realising when there is a decline in her ability to do things for herself.”
Liz does not sugar coat the situation. “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. “I take Mum to exhibitions in town and to garden shows. I took her to see the tulips the other day, and she loved that. I try to do fun things with her even if she does not remember later in the day what we did. I know at the time she enjoys it, and so that makes it worthwhile.”
Liz 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. Her medical training also means she knows what lies ahead.
“At this stage Mum still recognises close family members. There are some people she sees less often, and she lights up as she realises she knows them, but can’t remember who they are. I’m not sure how I will be if and when mum no longer recognises me.”
And although she has broad shoulders, Liz is pragmatic about the importance of support for carers. “I just have to keep adjusting to the situations the disease brings each day and realise that it's going to be full of challenges. Carers need to ask for help at times – there’s nothing wrong with that!”
Uniting AgeWell also runs the “You’re Not Alone” support group for carers in the Bendigo region, which meets on the first Tuesday of every month at the White Hills facility. There are sometimes educational chats – but mostly there’s the shared camaraderie that carers appreciate so much. Where talking – often interspersed with laughter and tears – provides comfort like no other.
For details about respite care and the support group in Bendigo, phone (03) 5454 2100.
Learn more about our respite services