On day five of DAI’s World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our UK members stories of living with dementia. Thank you Julie for writing your very first blog, especially for this series to help us raise awareness. Julie is very actively involved in DAI, is a member of our UK/AU/EU peer to peer support group, and has offered to host our Living Alone social support group, starting soon. She is also involved in many local and national groups in the UK.
My story: From Nurse to Advocate
By Julie Hayden
Hello, my name is Julie Hayden from Halifax, UK. I was diagnosed last year aged 54. I can’t tell you the type of dementia I have because my doctors haven’t told me yet. Maybe I’m being a little impatient and unreasonable. It’s only been 2 years since my 1stscan showed marked cerebral atrophy.
As a former nurse I find the delay between the disparity between how my brain is and how it should be and achieving full diagnosis totally unacceptable. I can’t help feeling that if a brain tumor was suspected that the medical profession may have moved a little quicker.
My diagnosis was handled very badly. Not by me, but by my neurologist. I was told I had a dementia (though not Alzheimer’s), given a prescription, then sent home to absorb the news alone without even contact details of my local Alzheimer’s Society to discuss my feelings with. Unfortunately my experience is the norm rather than the exception for many of us.
Along with others I have found family and friends rather distant post diagnosis, but then at certain times in life you are presented with an opportunity to assess who are the people in your life that are genuine and who are mere fly-by-nights. Please note that I view this experience as an opportunity rather than a loss in my life. I can’t choose whether I have dementia, but I can choose how I deal with it. I choose positivity, which is why Dementia Alliance International has come to mean so much to me.
For several years prior to my diagnosis I had recognized that my health was on a downward trajectory. Like my GP I put it down to severe depression. Things became so severe that I lost my career as a social worker. Nothing like the caring professions for being not so caring when it comes to their workers. I remained unemployed for years. Now, having this unfortunate label means that the world of paid employment puts me firmly on the scrap heap. However, as a volunteer worker, running my own Young Onset group I have found a new role in life which involves working more than full time hours and doing this quite successfully.
My advice would be don’t let anyone tell you that because you have dementia that you can’t hold down a job, study, be an educator, be creative and be a useful member of society. There are many examples of this within DAI.
You are no less a person than the day before you were told you were living with dementia. I am still a mother, a grandmother and the friends I have in my life now are the best I’ve ever had. I would love to think that I would still be around when my grandson starts his own family, but now quality matters more to me than quantity.
I take my inspiration from my fellow DAI members and hope in some way to play my part in making positive changes, both for those currently with dementia and for those to come.
Julie Hayden © 2018