I was talking the other night about the language about Dementia, with someone else who has a diagnosis of YOD.
She said that many people with the diagnosis prefer to use the term “Living Better with Dementia” rather than ” Living Well with Dementia”.
If I understand her explanation correctly, it’s because of the wider community’s perception about people living with Dementia, in particular the media’s perception, that if you have Dementia then you are immediately at ‘end stage’, and that there is no expectation or knowledge about the fact that we can live a life with potential, with hope, with goals and achievements………………..Yet if we can EDUCATE them to realise and acknowledging that for each of us, there CAN be a lot to give and to live how we choose; there will be huge individual differences in what that may mean; acknowledging that we need varying degrees of support and understanding; and acknowledging that there are still times and days when we ourselves know that some times are better and worse than others………..there’s quite a lot to do still.
I don’t dismiss this concern about inappropriate and stigmatising language in any way. This is probably the main reason that I am doing the best that I can to advocate for awareness about YOD and Dementia.
I’ve given quite a lot of thought to her comment in the past few days.
I realise that some of you have read other references to some of the following, but please bear with me because of its relevance for this topic.
For the last few years that I was working (from about 2003) I started to struggle to achieve what I used to do, either at work or at home. Remember, I still didn’t get a diagnosis until 2010. I was so exhausted both mentally and therefore physically, because of the nature of my Dementia and of my work, that I wasn’t functioning well. I couldn’t plan or organise either aspect of my life and I struggled to adapt to the changes that the unknown was presenting.
When I left work in 2008, I was initially on sick leave while undergoing tests and seeing specialists. Due to, I imagine: the state of ill-health that I was in at that time; the non-diagnosis; the mis-diagnoses which resulted in incorrect medications and treatment plans; the comments made by many indicating that I was a malinger and that I was “rorting the system” as they say; and, the length of time that this continued, I became quite depressed and withdrew and felt very alone with no explanation about what was happening. I couldn’t move on. I felt confused. I didn’t have a diagnosis that I could either deny or accept.
Eventually I was diagnosed with Younger Onset Dementia of the familial Alzheimer’s type. That evoked my memories of my mum and two of her sisters, my aunts, who all had Alzheimer’s Disease diagnosed at a reasonably young age. My mum often wandered the shopping centres in her nightie and lost her purse. So I ask you, do you think……when I WAS eventually diagnosed that I felt joy!!!?? There was no yippee factor, trust me.
My initial reaction to my diagnosis was one of despair, hopelessness and a deep sense of being alone. I was worried that people would see me like the memories that I had of my mum. I didn’t share my diagnosis at all initially and it took years to tell only a handful of family and one friend.
So on reflection, I’d sum up that for those years post diagnosis I was hardly living any valued life. I just existed, had no purpose, no self esteem, no goals, etc, etc. On top of that I was also (not) dealing with my perceived loss of independence due to driving issues.
That was my life until 28th June 2014 when I was encouraged to go to a fundraising function called ‘Bring It To The Table’, by my Key Worker Lynda. I met Ita Buttrose who at the time was Alzheimer’s Australia’s National President. I also met Mary Smith from Aurora Adventures who that evening decided to sponsor me in Alzheimer’s Australia (Qld)’s cycle challenge of 562 kms in 9 days, through Vietnam and Cambodia.
My whole attitude changed because I had heard so much positive language that evening encouraging everyone and supporting people with Dementia, I felt valued, I now had a purpose. That’s when I started to live well with Dementia. That’s when I started to live! THANK YOU Lynda.
I’m personally still very happy in my particular case to use the phrase “Living Well with Dementia”.
I respect that others prefer “Living Better with Dementia” and I understand why. That works for them and there is merit in their reasoning.
But for me for now, I am just happy to be living well with Dementia. And although some days or some times through the day, I still struggle, I’m living well now.