A daughter’s story – facing my mother’s dementia
A fear of Getting Old
Where have the past 44 years gone? Honestly….. It seemed like only yesterday that I was nine and enjoying all the fruits of my parent’s hard work, dedication and family-ness. I’d cruise the streets of my smallish country town on my canary yellow BMX bike lovingly welded together by my handyman father in readiness for my weekend adventures. Life seemed pretty hassle free, thanks to the safe, secure environment that I was raised. It really couldn’t have been more perfect, especially during the holidays when we’d visit my grandparents who lived in a pretty amazing location, Byron Bay. I remember early morning breakfasts with my grand-dad consisting of fruit loops (holiday treat ONLY) and honey on toast. I’d have the fruit loops and he’d have his usual habitual honey on toast. He was quite a bit older than my grandma (ten years or so), so he always seemed quite old and just a little bit fragile. He was the first person in my life that really seemed ‘old’. The first real acknowledgement of the aging process was when I was 12 and my grandfather was admitted to a nursing home with Alzheimer’s disease. My mum and I would regularly make the trek to idyllic Byron Bay to visit him at the nursing home (“The Home” as my mum used to refer to it) located at Suffolk Park on the road to Lennox Head. I would visit with my mum and grandma a lot less often than was probably hoped. In truth….. I would cringe each time the dreaded question was asked; “Do you want to come and see Pop with us Jennifer? He’d love to see you!” It was my 12 year old guilt that would eventually give in to the occasional “Yes”. Needless to say, I would begrudgingly ‘tag along’ and realise that my presence wasn’t at all acknowledged by my Pop. His body and brain slowly whittled away for a period of about three years as he sat in his wheelchair, under the trees where we’d feed him lunch. When he passed away, it was ‘kind of’ a relief for me as I knew that I needn’t worry about ever being asked that question again. My trips to Byron Bay to visit my gran were instead filled with exciting teenage adventures and mischief that my poor gran knew nothing about. I became very aware at that young age that growing old and ending up in a nursing home was definitely not going to be on my agenda. I was lucky really…. I didn’t have to think about ageing too much over the next few years.
Fast forward 17 years and I am back vising that exact same nursing home in Suffolk Park. Who’d have thought? As I walk through the security doors I’m greeted by familiar faces and residents that smile and engage with me, simply because I am a familiar face to them. I proceed through the coded secure doors to the dementia wing in search of a very special person. As Simon and Garfunkle plays on the DVD, I find her sitting alone…. in her chair…. with her head down and eyes closed. As I say her name “Hi Mum!” she raises her heavy head, opens her blue eyes and smiles. From that moment on, I’m there for her.
My Mum I still believe that she knows who I am, even though she hasn’t said my name in years. She seems much more at peace now than she has been since being admitted five years prior, although the peace (or acceptance of her fate) that now shimmers in her eyes has never really been there.
My mum and dad on my wedding day (April 2003)
It’s been an arduous eight years since my mother was first diagnosed with Fronto-temporal (FT) Dementia in conjunction with Primary Progressive Aphasia (PPA) at the age of 66. In the eight years since initial diagnosis, I’ve watched a dignified woman, a devoted mother, and engaged grandparent (and dad’s best friend), deteriorate and transform into someone almost unrecognizable. It’s been agonizing to slowly lose her. Now at 74 years young, my mother continues to be the stoic pillar of strength that she was previously renowned for. Brain, Body and Heart, the slow deterioration has taken its toll on many friends and family who no longer take the time to visit. It would be nice if they acknowledged her existence, but avoidance seems to be common practice! This is such a common reaction amongst families whom have been tarred by dementia. I have had the last eight years to truly understand this disease and the diverse effects it has on each individual recipient.
Our Memories We spend our whole life (decades and decades) accumulating memories and associations. We develop a personality of who we are based on those experiences and memories. The issues we face in confronting dementia are not dissimilar from those of HIV/Aids and cancer which include negative attitudes born from centuries of stigma, institutionalisation and ageism (negative view of old people). My main concern relates to the quality of life of our aging population, and the mere relationship our brain plays with our body. A cure for dementia may be a while down the track, so the most important element that can only serve to benefit us today is in the power of PREVENTION.
Brain Health – the power of prevention!
Whilst scientists and researchers are committed to finding a cure, the 341,000 Australians (and their families and carers) are eagerly awaiting for the smallest of breakthroughs that will ease the burdens that are affecting their daily lives. Husbands, wives, sons and daughters are all the carers of the affected and without these family members (and their support networks), our aged care facilities would be overflowing. Each week, there are more than 1,800 new cases of dementia in Australia; that is approximately one person every 6 minutes. This is expected to grow to 7,400 new cases each week by 2050. April statistics from the ABS now shows that dementia is the 2nd biggest killer after heart disease in Australia. So where to from here?
The Challenge – prevention is always better than a cure (for now anyway!) My challenge is to take the whisper and stigma out of the word DEMENTIA! Whilst running and walking 5KM A DAY FOR THE MONTH OF MAY. I hope to challenge others by promoting the importance of Brain Health with the ultimate aim of helping all of us live long, happy, healthy lives. Join me by either donating or supporting my journey to creating a greater quality of life! Old age doesn’t need to be spent in a wheelchair and losing our faculties! We deserve to get old with all our memories in hand and we deserve to do it well!
What you can do to help Please support my cause by donating to my “My Cause” page, or just by following and supporting my challenge in May2016! Follow the links at the bottom of the page or share your story either by email or to my pages’ timeline. This is only part of my story, but I understand the importance of talking about this disease. I do hope I am able to start a conversation as these are the conversations the sufferers themselves can no longer have.
“If I feed my brain -it will grow, If I nurture my brain – it will thrive. If my brain thrives – so will I” (words by me)
I REMEMBER FOR SOMEONE WHO’S FORGOTTEN – MY MUM