Dementia Narratives
The Beast of Dementia, the Beauty of Presence
A quest for understanding
Forecast: mixed bag of sunshine and grey skies, with goofy grins and volatile temperaments sprinkled liberally.
Dignity in dementia is possible, albeit not easy for the person or those around them. Dad’s advanced dementia has an extra complication: the surprise of undiagnosed advanced heart disease.
Socially we seem to have very poor coping mechanisms for dementia care and a poor understanding of heart failure.
Both are unpredictable and difficult to diagnose with confidence until a crisis reveals the truth. Both are terminal illnesses, albeit with long term prognoses if managed appropriately. Both have opportunities for dignified beautiful lives if we are willing to invest the time to learn about them.
If someone important to you has dementia or heart failure, spend time with them. You will not know these diseases and their struggle if you don’t.
You will also miss out on the moments of clarity and strength and laughter and love if you are not there, with an open mind, cheerleading them through their day.
Dementia Narratives is a new project that’s evolving as we cheerlead Dad through dementia. It explores the perceptions and realities of dementia, the science of our hearts and minds, and the social dynamics of caregiving. It also provides a platform to support others interested in writing about their experiences with dementia. ❤️ Contributors welcome ❤️
Subscribe to stay connected or join our community on Substack to benefit from a support network and writing toolkits for personal journaling, online blogging, and formal publishing of dementia narratives and memoirs. Interactive discussion threads each week provide an opportunity to connect at your leisure with other members of the Dementia Narratives community.
If you have any questions or would like to publish your own experiences and perspectives in Dementia Narratives, please contact us: dementia.narratives@gmail.com
