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It was 2005 when I first began to wonder why my wife Katrina, then aged 57, was starting to forget the sorts of things she had previously easily remembered. In retrospect, her dementia advanced quite slowly. But by 2010, she was not using her strong initiative and began to demonstrate behavior that was out of character. For instance, we might go out to dinner and she might have far too much to drink, sadly make a fool of herself.
The journey to diagnosis was a difficult one. Katrina’s GP didn’t want to believe there was anything wrong, as he had not personally noticed anything untoward during any of his infrequent, 15-minute consultations. It wasn’t until I explained the situation to my own GP – as a matter that was affecting my own health – that Katrina’s symptoms were explored.
In 2012, a neurologist diagnosed progressive non-fluent aphasia. They pointed us in the direction of Alzheimer’s Australia’s Living with Memory Loss program, which we both attended in 2013. To my relief, my concerns were finally being taken seriously, which was both reassuring and validating.
As Katrina’s dementia progressed, I needed to be at home with her more and more. To begin with, she didn’t wander, but this did start to happen later on. Gradually, she lost her ability to speak, her understanding of what was being said and her grasp of language – a shower sponge, for instance, became ‘one of those round things’. Her reading and writing capabilities also declined.
Over time, I took over all language-based communication on Katrina’s behalf. She did, however, maintain her ability to shower and dress herself, even if I had to select her clothes for her.
Caring for Katrina at home, I always did my best to remember that a carer must make an ongoing effort to live in the world of the person with dementia. The reverse is not possible and will never happen.
By 2014, I came to the realisation that if anything happened to me, there would be nobody to look after Katrina – we have no children or family in Sydney. That’s what led me to investigate residential care facilities and ultimately Katrina entered Wesley Gardens in 2015. It was a hard decision, and one that I had to prepare myself for, mentally and emotionally.
I had to sell our house to pay for the nursing home’s refundable accommodation bond, and bought a retirement village unit with the remainder of the proceeds.
Unfortunately, my prostate cancer has flared up since moving to the retirement village, and I am presently undergoing chemotherapy. My doctors have advised me not to visit the nursing home during this period, so as not to contract any infections while my immunity is low. Not being able to see Katrina all the time has been incredibly difficult.
If I could offer one piece of advice to other carers, it would be to join a carer’s support group. For me, this proved invaluable. Listening to the stories of others, taking heed of their experiences and asking for advice not only provided inspiration and ideas for coping strategies, but also the reassurance that Katrina and I were not alone.
If you or somebody you know has concerns relating to dementia, it’s important to remember you are not alone. Support services are available nationwide. The National Dementia Helpline is a great place to start. No matter where you are in the country, contact our trained staff for expert advice.