The Support of a “Dementia Doula”
A client I serve is struggling with worsening dementia. She’s hired me to support her as she approaches the end of her life, and in our bi-monthly meetings, I hold space for her to share her life story. As her short-term memory and conversational skills continue to worsen, for the time being her writing skills have remained excellent — they have been since she was a child — although she mentions that it takes her much longer to write than it used to. Writing continues to bring her joy, and she asked me if she could share an anonymous review of my services. I was so moved to read her review of her experience. She passed along her review with a separate note, which read: “It was helpful for me to write; it's nice to be able to put my thoughts and feelings on the page.”
A few notes before I share:
I of course have her permission to share these words publicly. She only asked that I not share her identity. She had fun coming up with her own nom de plume!
She was concerned that the review was too long. It was important to me to share it without editing it. Her kind words, exactly as she expressed them, mean the world to me.
I have not until now ever identified as a “dementia doula,” nor have I even used those words. She hired me as an end-of-life doula, but she has felt my support most strongly as she wrestles with the decline of her memory and cognitive function, and I appreciate the words she has chosen to describe what I’ve offered her.
Thank you, Dulcie Mainwaring! You’re a kind and exceptional human being, and it’s an honor to support your end-of-life journey.
I recommend the skillfully superb Greg Brown of Armonia Maxima. His dementia doula services have given me a sense of meaning and purpose beyond that of simply standing in line for the Grim Reaper.
Dementia is not an easy diagnosis. There are no effective treatments; no pills or chemo to take. The hints are subtle. Forgetfulness creeps up and one can think it’s a matter of old age. I’ve known people surrounded by caring family and friends, all determined to help fight a cancer battle. I’ve known people with strokes making slow but steady progress in rehab. And most of us are surrounded by excitement when we give birth. Dementia, however, has no brilliant highlights. There are no achievements to be celebrated. It’s uncompromising. It is also not a downhill race: one is taking a winding, twisting path.
A Dementia Doula may become the most important person in your life. Family and friends are in various stages of denial and silence. I have an excellent family and they provide me with great food and laundry service. But they are unable to watch the grittiness of decline. It can take a very long time for them to know that dementia is not a choice. It is not like deciding to wear a green sweater nor is it like refusing to eat tofu. It is not a preference, but a crushing bulldozer that transforms one’s life. Even the dearest family members don’t want to discuss the huge elephant in the room named Dementia. Hence, a Dementia Doula is a perfect choice for navigating the struggles of an ever-morphing decline. A talented, sensitive, and very professional Dementia Doula is prepared to listen to everything.
I can tell Greg the story of my life and he can frame it so that I begin to understand. I can tell him about my struggles with reading and simple administrative chores. And he gets it. He understands that there is no such thing as a cookie-cutter life, just as there is no such thing as “cookie-cutter” dementia. He provides exquisite comfort and consolation. He has the experience to understand the zigs and zags, the twists and turns of dementia. Sometimes I cry. Sometimes I rage. Too often I feel sorry for myself. Greg helps me to understand what is going on with my rapidly cycling emotions and my horror as I watch myself fall apart. He has provided me with useful literature and also with the right kinds of language to stress to my doctors. He’s become my essential backbone. Since I started working with Greg Brown, my family life has improved greatly because I know that Greg can handle my most devastating thoughts.
Greg Brown is a consummate professional who will bring tact, sympathy, sensitivity and encouragement as I continue to decline. He listens to me vent, but I can see that he is leading me on a kinder, more forgiving path in which death approaches as a natural event. Greg has given me a better option than gloom: I am now optimistic that instead of being a dreadful plunge into darkness that death is a natural part of life. Death may be a final event, but it is not the final answer.
I cannot recommend Greg Brown’s services highly enough.
By Dulcie Mainwaring
