Experiencing Dementia
Explaining, Not Complaining
Writing about our experiences with dementia can help us help others
One of the hardest parts about Dad’s dementia over the last few years was Mom’s reluctance to talk about what was happening. She didn’t want to be perceived as a complainer and also didn’t want anything to change. She worried that admitting there were problems would cast a shadow on her and escalate Dad’s placement into a care home, which neither of them wanted.
“Everything’s fine” phone calls would precede days of chaos and crisis, which we were called on to manage from 1000 km away. We’d go for extended visits to smooth out the kinks and see for ourselves what was happening. Within a day or two of coming home we’d get a text: “The monster is back. But, it’s all good.”
The cycle repeated itself, over and again.
When we became their full-time support, writing helped me make sense of the chaos. It helped me process the emotions. It helped me track the progression. It provided a space to organize what we were learning about dementia, about Dad, about health care and family dynamics in caregiving.
It made me more perceptive of the details in our otherwise blurry days, and more appreciative of both the beauty and the beast of this disease.
Dementia can be a very lonely and exhausting disease, for the person with the diagnosis as well as for family and caregivers managing the daily realities.
By keeping a personal journal, we are engaging in a form of self-care that helps to process and cope with the tough parts of our days. By sharing our stories publicly we can support each other and advance dementia care through learning from lived experiences.
Dad is a generous, introverted, big thinker. He loves to see me write and if we had his diagnosis earlier we’d be writing his story together. He’s been my sage and my cheerleader. I’d like to pay it forward by doing the same for you.❤️
Whether you ultimately want to publish your dementia story or just need to know that you’re not alone managing the complex emotions of dementia and caregiving, Dementia Narratives is for you.
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
