Meet Dementia Advocate Deborah McFerran
The following contribution was written by Dementia Advocate Deborah McFerran:
At the tender age of 51, I would never have imagined that I would be introducing myself in a Dementia Australia newsletter as a person ‘living’ with dementia.
I have deliberately bolded and underlined the word ‘living’ for a reason. Just prior to my 49th birthday, I was diagnosed with frontotemporal dementia after four years of investigated and documented changes in my cognitive abilities that progressed from an initial diagnosis of mild cognitive impairment.
I had been a very experienced and post-graduate educated Registered Nurse. I loved being a nurse. It was vocation and not just a ‘job’. I believe I was a natural at it.
Both my practical skills alongside my interpersonal skills were greatly attuned and honed on treating my patients as the individual people that they were.
Caring for my granny also impacted my life as we cared for her at home in the last 10 days of her life. She passed at 92 and the circumstances of caring for her led me into a deep spiritual realm, which is integral to my life. It is like breathing for me and part of the fabric of my being.
This time also really ramped up my philosophical and writing side. I adore Shakespeare’s sonnets and can understand and recite many from memory, as well as my own poetry and others.
The reason I chose to become a Dementia Advocate was due to a significant life change at the end of last year. I was thrust into a situation where I lost everything relationship-wise. Over the years I had totally lost any sense of purpose in general in life.
Since becoming an Advocate, I have given a lecture at a university to first-year nursing students, I am in a nationwide steering committee with senior doctors, nurses etc working on delirium and dementia protocols, amongst other things. I can be involved as much or as little as I like.
I appreciate Dementia Australia having this program available. They are very dedicated to caring for and supporting Advocates as well.
As an Advocate I know I am contributing to bettering the lives of those living with dementia. Change is significant when driven by the voices of those in the ‘thick of it’.
The lived experience of anything in life has the potential to be a great driver of positive change.
Having your voice heard in any area of your life matters. As a Dementia Australia Advocate, I feel my thoughts are wanted, heard and used to drive positive change around dementia-related care.
At 51, my dementia is so misunderstood and often people do not believe it or don’t know what to do with me. My health is deteriorating and I have had subsequent autoimmune conditions diagnosed this year.
Life is not easy. It just isn’t. But I do believe your perspective of what happens to you impacts greatly on your experiences in life. So much is not in our control in our lives. Having significant cognitive decline at any age is challenging. But a diagnosis so young knocked me greatly. I want to live; I don’t want to just exist. My work as an Advocate, writer, photographer is critical to living.
I choose life. As you go about in your day perhaps overwhelmed or down; remember you have the power to change. God willing; my days will continue on in this manner.
Blessings as needed,
Deborah McFerran x