Dementia Notes

Bearing witness to others’ pain, and even joy, is the privilege I didn’t know I needed.

January 13, 2024

Saskia Houwen is supporting her mother as they navigate the long windy road of dementia, leaving a trail of notes at DementiaNotes.

“Do you write for a living?” she asked; an unexpected question to a person who chose engineering in part because it didn’t have ‘an English requirement’. And an unexpected question to someone who is just trying to navigate a challenging chapter of helping her mom navigate life with dementia. It’s been nearly five years since the formal diagnosis; four years since my mom moved into assisted living; and nearly three years of documenting our experiences on Instagram.

But who is counting? Me. 

Like so many, the dawning of dementia crept up on us slowly. I suppose only through hindsight can you really see it coming. And though the dawning may have been drawn out, the actual moment of realization hit like a ton of bricks. I cried harder than I’ve ever cried; a grief so intense and acute that it still haunts me.

Since then, dementia has been the spice that seasons my every experience of life. 

The grief has been intense, but, I don’t dwell there. My first act of self-care was to cry. The next was to call a friend. I eventually shared my experience with colleagues; I pretty much talked with anyone who would listen. I also tried therapists, but with no success. I joined a local bi-weekly support group. And then one day I joined Instagram. 

I signed up quietly and anonymously on December 5, 2021 thinking I had no preconceived idea of what this place should be, but that I intended to capture my experiences of supporting someone with dementia. If nothing else, it would be my record of wrestling with guilt and frustration and the occasional victory as a primary support person on a dreadful journey. I imagined it as my ‘screaming into the wind place’; somewhere I could purge my thoughts. 

Over one thousand Instagram posts later, I am finding my stride. I am me and my mom is ‘Moi’ – a nod to her self-appointed moniker that captures her roles of Mother, Oma (grandmother), and Ingeborg (friend, sister, daughter, aunt, colleague, etc).

I could have written in a private journal, but I quickly realized that writing publicly was more therapeutic; not only did it hold me accountable to frame my experiences in a constructive way, it helped me adopt an observer mindset. As I wrote, I found my voice, found humor, found community, and reconnected with my mom by re-examining her life. 

Further, the encouragement and kinship with others in similar circumstances has truly been a gift. Bearing witness to others’ pain, and even joy, is the privilege I didn’t know I needed. And of course there are experts aplenty to learn from.

My mom’s progression continues. The destination is a foregone conclusion, but its path is unknowable. I walk imperfectly with my mom, determined to channel our grief into something of beauty that leaves a tiny positive mark of our humanity on the broader tapestry of our collective consciousness. And my self-care and healing continues. 

Do I write for a living? I write for my life. I write not only to exorcise the demons of my caregiver guilt and grief, but also to lean in and find the words and ideas that are ultimately the legacy of “Moi.” And me.