a person with gray hair viewed from behind. They are sitting in the kind of cheap wheelchairs you see in hospitals and nursing homes

“I hope you’ll still laugh at my jokes when I have dementia,” I said to my husband Ryan on an evening walk not long after my thirty-fourth birthday. It was the first time I had tried out my new resolution to stop saying “if I get dementia” and to start referring to the time “when I have dementia.” I felt the catch in my throat, a node of reluctance, but I was committed now. I had heard of this turn of phrase from a fifty-something nursing home administrator who said she uses “when I have dementia” to reflect a calculation of her odds, given her particular family history and the fact that mental decline is probable as we age. I appreciate her tough-minded devotion to naming her probabilities. All of my dad’s dad’s siblings died with Alzheimer’s, except the one who was killed in North Africa during WWII.

My syntactical conversion from if to when reflects not only my statistical realities but also my devotion to closing the psychological distance between those who have dementia now (“them”) and those who do not have dementia yet (“us”). It reflects a larger life project to embrace persons who have dementia, to deconstruct negative and stigmatizing attitudes toward brain disease, and to construct a more excellent way through dementia’s snares. It reminds me that dementia is the story I am inside, now. Dementia is not my future disease; it is my present healing.

Read more in the Kenyon Review.

Written by External Article
Everyone is talking about caregiving, but it can still be difficult to find meaningful information and real stories that go deep. We read (and listen to and watch and look at) the best content about caregiving and bring you a curated selection. Have a great story about caregiving? Use our contact form to submit it to us so we can share it with the community!

Related Articles

The question of a funeral

The question of a funeral

Our social worker and child life specialists speak to the patients and parents, informing them of Kristen’s death and offering support. No one...

Popular categories

Finances
Burnout
After Caregiving
Housing
Relationships
Finding Meaning
Planning
Dying
Finding Support
Work
Grief

Don't see what you're looking for? Search the library

Share your thoughts

0 Comments

Share your thoughts and experiences

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Join our communities

Whenever you want to talk, there’s always someone up in one of our Facebook communities.

These private Facebook groups are a space for support and encouragement — or getting it off your chest.

Join our newsletter

Thoughts on care work from Cori, our director, that hit your inbox each Monday morning (more-or-less).

There are no grand solutions, but there are countless little ways to make our lives better.

Share your insights

Caregivers have wisdom and experience to share. Researchers, product developers, and members of the media are eager to understand the nature of care work and make a difference.

We have a group specifically to connect you so we can bring about change.