In the interview, Susan says: “If Robin was lucky, he would've had maybe three years left. And they would've been hard years. And it's a good chance he would've been locked up.” This is probably what her doctors told her, but this is not a reality for most people with dementia or Lewy Body Dementia. When we frame dementia in this way, we are promoting fear of dementia and a misunderstanding of the illness. This is not saying that Susan is in any way wrong for sharing her story. You are never wrong for sharing your story. I just wanted to raise awarenss about how we talk about Lewy Body Dementia in the media and how we can inadvertently increase stigma.
I would like to let you know that while Lewy Body Dementia is a scary illness and I hated watching my mother live with it and then die from it in January 2015, people can also live well with Lewy Body Dementia.
My Mom was diagnosed with dementia at about the same age as Robin was diagnosed with Parkinsons (which was the only diagnosis he had at his death), in her 60’s. My mother lived really well for 9 years with Lewy Body Dementia. She lived at home until the day she died. Her last six months were the ones that were the “worst,” but even then, she did not have the scary quality of life we keep dramatizing in news stories about people with dementia.
I work with people with dementia and LBD and all of them are living wonderful lives. Not easy lives, not perfect lives, but meaningful and happy ones. I hope to add to the conversation about Lewy Body Dementia by showing the world how somone can live well with LBD. Here are photos of my mother, Carol, at various stages of her journey with Lewy Body Dementia to show you how she lived well with LBD.
If you want to join in, please post photos on social media with #LivingWellWithLBD and show the many faces of LBD.
(Don't forget to put #RevKatieNorris on your post so I can see them, as well tag me on Twitter @Rev_Katie or post or link them to my Facebook page at Rev. Katie Norris.)