At least two people embark on the dementia journey; the person with the diagnosis - and their carer.
And it is the carer who invariably goes through a whole range of emotions, from exhaustion to sadness, from anger to even feeling cheated, as they watch their beloved tread the inevitable path.
September is Dementia Awareness Month and time to shine a light on what is now the single greatest cause of disability in Australians over the age of 65.
And retired social worker Lyn Hamilton has been kind enough to share the journey she is still travelling with her husband, John, as what has been dubbed the cruellest disease in the world takes its toll. Not only on the once brilliant geologist, but on her.
Lyn reckons that if sharing her story can help at least one other person out there grappling with the rollercoaster of emotions that dementia presents, then it’s worth it. Thank you Lyn. You have a big heart.
This is their story.
Lyn first noticed signs five years ago that her now 87-year-old husband, John, was starting to forget things. The retired CSIRO researcher and geologist used to take clocks apart and then reassemble them in the workshop of their Burwood family home. One day Lyn noticed one of the clocks lying in a heap. She realised he had forgotten how to put it back together again.
She made an appointment with their doctor, John was tested for dementia – and the diagnosis confirmed her suspicions.
“John didn’t say much at the time, he seemed to be looking at me to sort out what to do next,” the 83-year-old great-grandmother explains. “The diagnosis didn’t leave me reeling or anything. It confirmed my suspicions about the little signs I’d noticed here and there that things were not what they should be.”
Lyn told their three children and their six grandchildren, and then everyone got on with the new normal. Only as the months passed, the new normal felt anything but.
The demands of looking after John took its toll. Lyn had a bit of help with the housework, but the relentless pressure of being a carer increased as fast as John’s mobility decreased due to his arthritis. Lyn had two days respite a week when John did day care activities at Uniting AgeWell Box Hill Community and at another centre. And while it gave her a break, she used that time to get a swag of other necessary chores done.
There’s mother-love hard-wired in Lyn’s DNA. As exhausted as she was, she gritted her teeth and carried on, determined not to let her children be turned into carers and have to endure what she was going through.
She decided they needed to sell their big family home, and she and John chose to move into Uniting AgeWell’s Manningtree Hawthorn retirement village because it was right next door to Hawthorn Community.
Lyn packed up their home, and with Victoria see-sawing in and out of lockdowns, they moved into their bright, spacious unit in March 2020. Three months later, John moved into the aged care facility.
Lyn is piercingly insightful. Years of working with children who were wards of the state has trained her to accept reality for what it is. Not to sugar-coat it or sweep it under the rug.
“I didn’t expect him to move in so quickly,” she explains. “But I was physically exhausted coping with caring for him all on my own. It was only when I realised that I could not give John the care that he needed, that I agreed to let him move in.”
It was only after John moved in, that Lyn started to realise exactly how physically run down she was.
“My overwhelming feeling up until that point was physical exhaustion and sheer tiredness.” And she admits it was only once he was being looked after round the clock that wave upon wave of emotion hit her. Relief, guilt, sadness all made up the pent-up rollercoaster ride of feelings.
Once again she is searingly honest: “I guess I feel a level of sadness. We did quite a lot of travelling in the earlier days of our retirement, but I expected us to spend our last years enjoying doing things together…”
There’s also a feeling of being robbed of spending time with the man she’s been married to for 64 years. “He now has moments of anger and of shouting – that’s not John! He never got angry about anything before!”
There’s the overwhelming feeling of sadness as she watches the once brilliant academic struggle to find words to express what he is feeling.
And there’s the loneliness of an often one-sided conversation. “I chat to John about what I have been doing, but his short-term memory is not good. If I see him in the afternoon, he can’t remember what he ate for lunch.”
Lyn is acutely aware that time is not their friend. She knows the day will come when John no longer recognises their children – or her.
“It’s a very cruel disease,” Lyn says simply. “But I’ll make the most of the time we have left together.”
She does. They listen to music, watch comedies on YouTube or documentaries on steam trains that John loves. They sit in companionable silence over a cuppa and biscuits.
The staff are kind, John is content and she knows he’s receiving the care that he needs. Care that she physically is unable to provide. And this means that Lyn, who has glaucoma, can relax knowing he’s in the best place for him.
Lyn is also increasingly grateful to be living in the closely-knit Manningtree Hawthorn community which is fast becoming a second family to her.
“There’s always someone organising and doing things, like setting up card games, watching weekly films at the little theatre at the village, chatting over sewing and crafts… There’s even an active men’s group,” she says. “I’ve made good friends. Some of them have had, or are going through, the same journey that I am. It is good to talk to people who understand.”
Lyn knows too that when John’s journey is over, her friends in the village will be there to support her. There are support groups for carers looking after partners, and for those who have lost partners.
Once again her mothering-DNA kicks in. “Life is for living … I don’t want to be that person that constantly dumps all my emotions and grief on my kids,” she says.
Wise words. But then Lyn is a wise lady.
Learn more about our approach to dementia care