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My wife Joanie was diagnosed with younger onset dementia aged just 61. To say this news came as a shock would be an understatement. How could this happen to somebody so young?
At that time, our doctor had prescribed Joanie a drug for insulin resistance. The side effects were so severe that we ended up back at the doctor’s where they ran what they called a ‘mini-mental’. The results prompted further testing and, three hours later, Joanie was diagnosed with Alzheimer’s disease.
Looking back, she had definitely been experiencing memory issues, but I didn’t pay much attention. I suppose that’s because I saw her every day and the changes were so gradual.
For the first year after diagnosis, I think Joanie was somewhere between shock and denial. She kept saying, “I can’t believe I’ve got this.” And at the age of 61, who could blame her?
During those initial 12 months, it was pretty much business as usual. We had a holiday house at Killcare, which Joanie loved, so we tried to get there as often as possible.
We were told drugs might slow the symptoms, but ultimately Joanie’s condition – like all dementia cases – is incurable. Because of her previous negative experiences with medication, I didn’t want to take any risks. I wanted to maintain her quality of life.
Gradually, Joanie grew quieter and quieter and, after about a year, she stopped talking altogether. Her incontinence became more difficult to manage and she became incapable of making decisions. She could no longer cook or get involved with housework, meaning I became responsible for everything in our lives.
I gave up work to become Joanie’s full-time carer, which obviously had an enormous financial impact but, to be honest, money was the last thing on my mind. Joanie needed to be cared for, and I was determined to be the person to do it.
I joined a local carer support group, which was phenomenal. The major benefit came from listening to the stories of other carers. In the early days, I learned from the experiences of others. Today, I’m able to pass on my own knowledge to newer group members.
There are lots of ways to get support, but so many carers don’t know how or where to access it. My overriding message is to go and seek help – start with Alzheimer’s Australia NSW and everything else will flow from there.
Having been diagnosed in 2009, I cared for Joanie at home until 2013. By this stage, I was feeling increasingly stressed, and chest pains soon followed. My father had died of a heart attack aged 46, so these had to be taken seriously.
I made the difficult decision that Joanie should move into residential care, for the sake of our mutual health. I had to sell our beloved Killcare holiday house to raise the bond, but have since returned to part-time work.
Joanie still smiles when I visit, which I try to do five or six times every week. She’s mostly happy – you can tell by her body language.
I regard it as a privilege to have the opportunity to care for Joanie. During this time, I’ve experienced an intense amount of personal growth. I’m much more patient now, and I’ve learned to live my life with a ‘glass is half full’ approach. This is our lot in life, and we have to accept it. Dementia is not fixable, but there are ways to work with it.