Goodbye, Mum

Friday, June 2nd, 2023, my mother passed. It was her third day in hospital, a fact which, had she been aware of would have been a source of much distress. But to my and my siblings’ knowledge, there was no such awareness. From what the Doctors told us, she was past the point of awareness before she was brought in and even before I found her.

As tough as this might be for the rest of us though, this is what’s best for Mum. Her world largely consisted of suffering, physically and mentally, for altogether too long now. Parkinson’s took everything from her. Despite where she was, and how she would’ve felt about that, I’ve not seen Mum so at peace in a great many years. No dystonia. No tremor. She was beyond the reach of all of it. She had her family around her around the clock and until her final breath, so she didn’t have to go alone.

From a grief and grieving perspective, there is going to be a lot to unpack here over time. I have many regrets from over the past months, ranging from reflections on lost time, to words spoken in frustration, to simply not having replied to her last text message in a timely enough manner that she would have seen it because it was on a trivial matter and I was working.

Work has been good, and encouraged me to take the time that I need — but honestly, I don’t really know what that looks like. A lot of the time, I’m already fine. But then, a stray thought, a particular line of conversation, just… something, and it’s all over for a bit.

None of those things are what I want to go into now.

Instead, I wanted to share some thoughts on the main issue I saw over the time agency caregivers were on the scene.

Caregiver Power Imbalance and Burnout

Through to about August last year, it was just us kids providing care for Mum. From then onward, agency caregivers were slowly introduced. With Mum’s fear of having people in her home, each new one, each additional day, was a huge deal.

Mum’s case required a fair amount of caregiver training to take on, and the demands of a shift with Mum were very high. So any time a caregiver quit and a new one trained — it was a big deal and carried a lot of stress for Mum.

While true, as it turns out, there existed another — in my opinion worse — problem at the other end of the caregiver tenure spectrum.

As noted, the demands of Mum’s care were high. Burnout was a very real concern. For the most part, this was reflected in higher counts of sick days. But other times it reflected in the degree of care offered, choices made, or even things said.

The worst part of this is that Mum never felt like she could complain. She was afraid — and I think rightfully so — that to complain would be to aggravate the situation. Or worse — in her mind, I didn’t always agree with this relative ‘badness’ assessment — it would make them quit. Mum started to tell us only belatedly of anything that had occurred of this nature, and only with significant promises made that we wouldn’t complain on her behalf without her permission and I worry about what she may not have told us.

Would this have been different with care provided in a care facility, rather than in her home? Perhaps. But I believe the underlying problem, that the professional caregiver holds all the power would have remained the same, even if we could have convinced her to go.

I don’t have a good answer to this. The power dynamic seems intrinsic to the nature of the relationship itself, a dynamic that grew worse with the scarcity of caregivers available during the worst of the COVID pandemic.

Not a concern for you anymore though, Mum. I love you.