By Cathy Withiel
“I knew I was going to marry her from the moment I first met her at a dance in Brisbane before I was sent off to the Vietnam War.
“She’s my sweetheart, she’s the best thing in my life and I love her to bits.
“I promised on our wedding day nearly 53 years ago that I’d be there for her in sickness and in health, and that’s what I’m doing.”
That’s Steve Wright’s heartfelt reason for continuing to devote his life to caring for his wife, Dianne.
It’s a labour of love that Steve embraces with a stoic determination to ensure she remains happy and content.
It’s also a role that requires courage, resilience and humour.
“If I didn’t laugh, I’d cry,” he says bluntly.
Steve, 75, has come to terms with losing his wife a little more each day.
Di, 74, has been living with early onset Alzheimer’s disease for the past 12 years and the illness is taking its toll.
“One of my worst days was the first time Di looked at me and didn’t know who I was,” Steve says.
“She said ‘can you remind me to phone Steve, I haven’t seen him for days and I miss him so much’,”
“Every day she gets worse. It breaks my heart. It’s almost a grieving process, losing her bit by bit.”
It’s National Carers Week from October 13-19 and time to focus on people like Steve, who is one of the one-in-nine Australians providing care and support to a family member or friend.
Caring is different for everyone and there’s rarely a one-size-fits-all approach.
Some look after a loved one with physical challenges, others for those with cognitive impairment, while there are those who care for loved ones living with both.
Some caring roles are temporary, others are permanent.
Then there’s the added stress of caring for someone with a terminal illness.
Steve’s role becomes more challenging as Di’s disease progresses.
The retired Launceston tax accountant is struggling to cope with her latest behavioural change – incessant, random counting.
“But as long as she gives me a cuddle and a smile, I’m okay,” Steve says of his wife Di.
“It’s very frustrating,” he admits.
“It’s been going on for the last six months. At first it was under her breath, now it’s out loud.
“She’ll suddenly start counting – during TV shows we are watching, when we are in bed.
“It’s just random numbers. I think she may gain some comfort from it but I’m not sure.”
Other changes have also crept up over time.
Di now sleeps for up to 15 hours a day, and watches her grandsons playing soccer without knowing who they are.
She helps Steve in the veggie garden but is unable to recognise any of the plants.
She repeats the same question, over and over again.
“But as long as she gives me a cuddle and a smile, I’m okay,” Steve says.
Steve is speaking about the dementia journey he is travelling alongside his wife in the hopes of offering insight to other carers to help them to cope better.
He’s also using the opportunity to highlight the importance of getting respite care – vital time out so he can recharge his batteries.
Di is on a government-funded home care package through Uniting AgeWell.
The couple receives help around their Launceston home, and the main assistance comes in the form of around 15 hours of respite care a week.
It’s divided between care at home with Uniting AgeWell home care worker Carmen Marsh and day-care visits which include art and craft classes and outings for Di with Dementia Australia.
Steve describes Carmen as “a fourth daughter” and says they’d be lost without her compassion, wisdom and care.
“She is so good with my wife,” he says.
“I know she’d drop everything to help us in a crisis.
“We need her in our lives, and when I say she’s now part of our family, I’m not exaggerating.
“In fact, Di is wanting a photo of her to go on the wall, alongside those of our three daughters.”
Steve uses the time out to go walking, mainly along Launceston’s rivers where he watches the swans and breathes in the beauty and tranquility of the surrounds.
He often attends lectures about dementia and has been learning as much about the disease as possible.
Uniting AgeWell home care worker Carmen Marsh and Di enjoy a cuppa.
He is part of the Dementia Australia Advocacy Group and has recently addressed a weekend conference of medical professionals about the hands-on ramifications of being a carer: practical wisdom that textbook knowledge does not always provide.
His approach is pragmatic. It’s important to him to learn and teach others about the enemy, in order to fight it.
“Being Di’s carer has given me a real purpose in life,” he says.
Steve is acutely aware that Di’s condition is worsening, and he tries to live as much in the present as he can.
He’s aware of making each moment count and creating memories he can treasure while she is still around.
“Di will sometimes come for walks with me, and when she laughs and throws her arms up in the air and exclaims at the beauty of the scenery, I take lots of photos of her,” Steve says.
“I treasure them.”
He did the same after Di was first diagnosed with Alzheimer’s disease.
“I used some of my superannuation and we went on a fabulous five-week holiday to Europe, which included a cruise from Amsterdam to Budapest,” Steve says.
“I spoilt her rotten on the trip. We often look at the photos and I will remind her about what we saw and where we went.”
While each situation is different, Steve believes in transparency and says he openly discusses Di’s dementia with her.
“It can certainly cause anxiety for people when they can’t remember things and when they wonder why this is happening to them,” he says.
“Di always apologises for forgetting things, and I always say to her, ‘you have nothing to apologise for, this is not you, it is the disease. You may not always know who I am, but I know who you are. And I love you’.”
Jo Wood, a clinical social worker with Care Guidance who works with older people and their carers says most people don’t anticipate becoming a carer.
“Often, it slowly creeps up on a person as their partner, friend or loved one’s health starts to decline,” she says.
“When someone takes on this role, the hidden challenges are usually not front of mind.
“Over time, life changes, so it’s important to prepare for emotional, physical and lifestyle shifts.”
‘You may not always know who I am, but I know who you are. And I love you’,” says Steve of Di.
Jo says a consistent theme for those in a caring role is the deep need for genuine human connection.
People often express a desire to feel truly seen, heard, and understood.
Many crave acknowledgment and validation of their experiences rather than immediate solutions to their problems.
It is common to experience feelings of grief when navigating this life transition.
Jo emphasises that staying on top of mental health and wellbeing is good for everyone, and this encompasses emotional, psychological, social and spiritual wellbeing, as well as our physical health.
If you’re concerned about you or a loved one, starting with your GP or health care professional is a great first step.
You can also contact an organisation like Uniting AgeWell, which supports carers and those they care for, through in-home respite care, day respite programs, community access and transit groups, or residential respite care.
Free resources like Uniting AgeWell’s Sharing the Care Kit can help.
It provides carers with practical advice and easy access to information and support, particularly when transition to permanent residential care is required.
It guides carers through what to expect and how to cope with these significant life changes.
To access the kit and for further information click here
Carer resources and information
- My Aged Care: For access to Australian Government-funded aged care services and resources tailored for older adults and carers: myagedcare.gov.au
- Carer Gateway: provides free services and support for carers – counselling, peer support groups, support packages and access to emergency respite: carergateway.gov.au
- Office of the Public Advocate: for information about enduring power of attorney, medical treatment decision-making, advance care directives, guardianship and administration.
For Victoria publicadvocate.vic.gov.au or for Tasmania: www.publicguardian.tas.gov.au - Services Australia: for carer support payment information: servicesaustralia.gov.au
- Dementia Australia: a national body for support and resources: dementia.org.au
- Carer Help Website: for resources and factsheets for those caring for someone at the end of life: carerhelp.com.au