Autonomy and Dementia
Everyone gets to choose
In the process of getting a certification as a death doula I’m exposed to in depth looks at the principles we work from and strive for.
Today it was about how I relate to the autonomy of those I support and serve. Rich information, but what hit me hardest was my Mom.
In her dementia I don’t recognize her, I want her to be safe and comfortable. Often what I want looks like managing her space, managing our time together, managing her meager connection to our past. That’s not what my role as a doula looks like, as I walk with folks, listen, reflect back and honor their choices. The things I’m so able to do with and for clients I’m struggling for with Mom.
In dementia we lose words, the conveying of our ideas and feelings. The pattern and cadences of conversation remain. They sound like talking but in my work I go along for the ride in a conversation with no attachment to what I need to understand. I provide their recognition of being heard. However, with Mom I want to hear and understand what she’s trying to say, but I also want to know what she means. Parts of her are still in there and I want to hear what she’s trying to get out in the moment before it slides off her mind and is gone. For me, for my heart and mind. I still desire our connection, the one that made us such good friends, that sustained us both since my birth.
More on this as the days unfold. I’m sleepy and a bit depleted and sad. And that’s ok. I can’t say it to you all at once, so disparate pieces will do. That’s enough.
With you in my non-avoidance of writing,
Carole
#TheMortalityMuse
“disparate pieces” speaks to a phrase I utilize in my self-regulation toolkit (daily, and sometimes moment-to-moment) “Every little bit helps”. Also paraphrased as “every little bit holds space of value”.
Be well, be safe, continue to make a difference.
sending love as you navigate, thank you for sharing your world with us.