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My husband Noel was diagnosed with younger onset dementia on 23 January 2009.
There was the horror and devastation at receiving the diagnosis. And then there was the comfort drawn from speaking to others on a similar path through programs such as Alzheimer’s Australia NSW’s Living with Memory Loss.
There was the confronting reality of legal and financial matters, and the biting realisation of the loss of fourteen years of income. And then there was Noel’s unforgettable smile after I told him I thought I’d retire so we could spend more time together.
There was Noel’s determination to do household tasks like washing-up (which could take up to two hours) and his use of the tea towel as a handkerchief to blow his nose as he sobbed into the sink and continued to dry the dishes. And then there was my stretched, yet somehow ever expanding patience and acceptance.
Life is changed forever with any dementia diagnosis. Noel’s response was: “Everyone has something in their lives to contend with. This is ours and we will accept it with grace.”
My internal cry of “What about me?” was followed by the empathy that gradually dissolved my desire to hold onto aspects of my life which I suddenly discovered didn’t really matter any more.
I come from a place of determination and perseverance. Somewhere along the way I came to realise that, while we couldn’t fight this disease, we could embrace and work with it.
We’ve adapted to the changing constraints of the disease and created a new life for ourselves, doing the same things we’ve always done – cycling, bush-walking, gardening, swimming, spending time with family and friends … but in ways that are dementia-friendly.
One of my most treasured memories is going to Vivid Sydney, just four days before I took Noel to hospital, where he remained in a secure psycho-geriatric ward for three weeks before moving into permanent residential care.
That evening we arrived early, wandered calmly around Circular Quay and viewed the lights as we walked across the Harbour Bridge. We enjoyed dinner at a quiet restaurant at Milson’s Point before catching the train home. A perfect evening, which took thoughtful planning and encapsulates how we LIVED our lives in the real world, doing the real things Sydney-siders do, despite the dementia.
Noel was 64 when he went into permanent residential care. What an horrendous day. After a shaky start that landed him back in hospital, we managed to embrace our new life. Staff welcomed us, as did other residents. We are both much loved in our new community. We bring life and energy, and I am constantly inspired by the wisdom and depth of these people whom our society so easily ignores and undervalues.
I have changed! I have learned that unconditional love isn’t just in movies. I’ve learnt that to truly love requires self-care and self-compassion. I’m learning to live in the moment. For Noel, yesterday doesn’t exist, nor tomorrow – there is only now, this moment. I’ve discovered strengths and resources within me which I’d never known.
I live in two parallel universes. I’m a married woman spending time daily with my beloved husband. Yet I live as a single woman, carving out a new life for myself. My life is basic and simple. It is rich and chosen and I’m content, even happy.