By Helen James
No one has any control over a dementia diagnosis; more than 10 years ago, my husband Gordon was diagnosed with Fronto Temporal dementia – Semantic and Behavioural Variants. During these last 10 years, we have tried to ensure his needs within the symptoms of his disease have been met with love and dignity, despite his frustrated outbursts and curious behaviours, which at times can be confronting.
But how would we feel in his world, when you know that in your early 20s you were weighing up business risks doing multi million pound deals at Lloyds of London, and you ran your own successful business as an insurance broker? From this to not being able to do anything for yourself, and being dependent on others.
At every stage of the way he has been supported by the services of Alzheimers Australia NSW – especially art expression, where he didn’t have to communicate, and he loved this comfortable companionship with others in a non-verbal way.
He had amazing paid carers from service providers who took him on bush walks. He also had support from loyal family and friends.
But we felt a need to do more to make others aware of this cruel disease as well as reduce the stigma. It was for these reasons we have shared Gordon’s dementia journey with others, and despite Gordon’s lack of comprehension with the language, he has always co-operated in these ventures.
He still inspires me by his strength of character in coping with the complexities of his disease where he has some awareness, but cannot communicate; yes he needs medication to keep him calm and pain free, but looking beyond the dementia symptoms, there is still a beautiful, gentle soul there.
No, he doesn’t really recognise me these days, but he does give me warm smiles and his eyes are soft. These expressions are given to anyone who is assisting him.
He has been in residential care for more than three years; he has recently transitioned from low care into the high care dementia wing and has loving hands to care for him. Other than enjoying his meals and sleeping, he receives solace from music engagement.
I will end by sharing Lao Tzu’s quote:
“Being deeply loved by someone gives you strength, while loving someone deeply gives you
To all the beautiful carers of Dementia suffers ...xxxx stay strong as hopfuly some amazing doctor finds a cure to this disease that affects so many. As I read this my own journey with my mum came back to me...crazy disease that takes the life out of the most vibrant people Ike my mum and drives family apart .xxx to everyone starting strong
My father had Pick's Disease, also a fronto-temporal dementia, confirmed at autopsy. It, too, stole an intelligent, active, salt of the earth individual and replaced him with an empty shell. My mother never stopped grieving and for the last years of her life, which ended in January this year, had vascular dementia, which marooned her on a desert island where every touch, sound, smile and word was forgotten as soon as it was received, leaving her totally alone and bereft. Dementia in whatever form is the cruellest disease and strength and courage are foremost but not alone among skills needed to deal with it.
A very beautiful account from a very beautiful, tireless and dedicated woman. Really inspirational. Helen you are amazing.