Recently Richard Taylor wrote to the following message to a person with younger onset dementia living in Queensland who had connected with him via his website;
“Thank you for taking the time to write. Have you met Kate Swaffer? She is a kindred spirit, who also lives in Australia, of ours who hears the same messages as we do. Remember since no one really can know what it is to live within Alzheimer’s Disease except those who do live within its walls, others are actually telling you what they believe, not necessarily what is true for you.
It’s too bad others can’t accept us for who we say we are when they expect us to accept them for who they claim they are! We can’t fully appreciate caregiving unless we are a care giver, we can only approximate how it feels by comparing it to our expectations and own substitute experiences.
When we live outside stigmas and expectations others don’t know how to fit us into their own expectations. It’s too bad others in my humble opinion waste times doubting us when it is not us that counts, it is what we are sharing. If that seems genuine to others why isn’t that enough to just move one together? I don’t know.”
Thank you Richard for allowing me to share this personal communication. Richard is fighting for his life with yet another terminal illness (oesophageal cancer) and is undergoing radical treatment with the same incredible bravery as he has with dementia. His refreshingly honest sharing of his personal dementia journey saved me when I was first diagnosed; he taught me there is life after diagnosis, and it is right to stand up and speak out from our perspective, and for what needs changing. It is right to live beyond the stigmas and expectations of others, to live beyond their discrimination.
I still find it incredible so many people without dementia dare to question a persons diagnosis of younger onset dementia, why they have so much trouble believing it, why some even accuse us of lying about it. It is hurtful, and damaging, and adds to the very great burden of the diagnosis of a such a devastating terminal illness. It adds a layer of additional pain to the stigma, the isolation, the grief and the sadness. I’d bet my house that no-one has accused Richard of lying about having cancer…