The Long Death

The long death.

March 2020 was not only the start of the pandemic but also the start of the unravelling of my Mom’s brain and life as we knew it. Both hers, and mine.

She has dementia. Young onset. She just turned 60 in May.

Since she has young onset, I must be a young caregiver. It has simultaneously felt like I’ve aged 100 years, and that I am a child too young to be doing this. I’m by far the youngest visiting child of all the patients on the secure memory unit where she lives in long term care now.

It’s different for a young caregiver. Most of the other children visiting their parents in the LTC home are retired. Popping in with their children and grandchildren, spreading out the care duties widely. My Mom doesn’t have that luxury and neither do I.

We tend to better understand post-funeral grief. We send flowers, and we make allowances for the way someone’s grief shows up. But what about *this* kind of grief. Everyday grief. Every day losing another piece of a person.

This last year and a half has been incredibly overwhelming and incredibly isolating. Covid adds a new layer. It’s hard for anyone who hasn’t been through this to relate to how it changes a person. How it changed me. How I cope (or don’t), how I socialize (or don’t), how I grieve, how I see life.

It’s a cruel disease to watch unfold, but even crueler to see her in anguish. It doesn’t get better from here. It’s a long painful death with grief everyday.

It’s hard to live when you are watching someone die.

#grief #dementia #FTD #CJD #longtermcare #caregiver #theglebecentre