Dementia’s Daughters

This past December, I had a wonderful experience of connection that reminded me that only if we are honest about and open with our vulnerabilities will we truly connect.

A woman living on the other side of the world found my blog and my essays about my mom and emailed me to share a little bit of her own story about being in the middle of raising young children and also caring for a parent who is losing their memory. I remember so vividly the loneliness and confusion of those early years that I was touched by the fact that I could offer some brief respite and solace to another daughter of dementia.

The first years leading up to and after my mom’s diagnosis were some of the worst of this Alzheimer’s journey, even though her disease is so much more advanced now. I assume my mom was lonely and confused, too. She knew she was forgetting some things, though she forgot more than she realized. She was aware that things weren’t always adding up, a fact that still takes my breath away imagining how frightening and painful it must be to lose pieces of yourself, to blip in and out of the world making any sense at all. It’s one thing to be lost in your own world, as she is now; it’s quite another to know that something is happening to your mind, your agency and autonomy slipping like water through cupped fingers, unable to hold onto it or to grab it back.

I am a do’er and a fixer by nature, but I didn’t know what to do or even where to start after my mom was diagnosed. She didn’t really want to – and maybe couldn’t really – deal with it. Between her cognitive loss and an instinct to protect herself, projecting toward this difficult future wasn’t going to happen. Those years manifested in a constant, low-grade ache between my diaphragm and stomach, where all my anxiety lives. Alzheimer’s/dementia is a slow-moving crash course in loss.

No Power + Responsibility = Anxiety

Inspired by the solidarity I felt with this stranger from the other side of the world, I looked back at other emails that lovely readers sent to me after my essays about my mom were published. They reminded me that I write both to make sense of my own lived experience and to discover and highlight the myriad facets our common humanity. Personal narrative, as a genre, is inherently personal. The key is for one’s personal story to resonate with others in some universal truth kind of way. The word essay actually derives from the French verb “essayer” which means “to try:” try to create meaning, try to connect through storytelling.

Over the years I have heard others share their opinion that the memory unit is one of the most depressing places in the world. When I am there, though, I feel like I am among family. The caregivers and staff do the hard and sometimes thankless work of caring for the residents 24/7. Their caregiving allows me to reprise my role as a daughter after years overseeing my mom’s daily care. All of the residents are someone’s loved one, their diagnosis another family’s heartbreak, their decline something all of us have or will experience in some way. Those who visit – old friends, children and grandchildren, nieces and nephews, siblings, and spouses – all hold stories of who their loved one was, what they loved to do, how deeply they are loved. By sharing the joys as well as the suffering of our similar circumstances we create connection and this connection creates meaning. There is easy companionship in knowing that your suffering is understood implicitly, that your grief is shared, and that you and your loved one are seen and are not alone.

The senselessness of dementia demands a quest for meaning. The connection we share and the ability to hold and share my stories with others of dementia’s daughters gives this decade of my life one answer to the existential question “why?” If I can share my story and offer solace to even just one other person, all that my mom and I have learned and lived will not have been for naught.

The Problem of Alzheimer’s by Jason Karlawish is an excellent recent resource about Alzheimer’s.

Partnering: Forge the Deep Connections that Make Great Things Happen by Jean Oelwang is a wonderful book with resources on how connecting and working in partnership with other people (versus in a hyperindividualistic silo) unlocks manifold rewards.

My podcast interview Every Path Has a Puddle or Two has some pretty decent Alzheimer’s and life advice, too, if I don’t say so myself. My momma would be proud. I learned from the best.

This poem from Rosemerry Wahtola Trommer really resonated with me.

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