Brain Phrye

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My mom came home today. As per normal, I got confused about the time and place. While I was generally pretty good at collecting my mom from the airport, I ended up showing up a bit late from time to time. And there was often mixups with alarm clocks or wake up calls that made my on-time pickups a bit miraculous.

This time there was a mix-up in getting my mom’s ashes. I’d apparently made some arrangements in the days after my mom died regarding picking them up, but I honestly can’t recall such a conversation. I don’t doubt it happened, my mind was running in circles at that point. But worked it all out today and got her ashes home this evening.

Mom went into hospice for the last time on the 18th of March. That almost didn’t happen. Her last visit to hospice had only been two or three weeks before and the hospice staff were a bit dubious about her going home that time. However mom was determined to make it back.

Looking back it was a hard period. She needed a lot of help - more than she’d ever needed before. The strength in her legs was completely gone and lots of minor problems kept coming up. And each one we tackled and worked on such that the bigger picture of what was happening was lost. At least for me it was.

Illness and dying are not things I’d been exposed to, but they were well known to my mom. And as we tried to figure out how to deal with our new reality she helped me through it. Yes, I helped her physically, but emotionally we helped each other. Taking care of someone at that level is hard - and it’s harder still when you care about them. And being taken care of is also hard - even if it’s from someone you care about. Perhaps even more so. We traded pep talks. We traded honest talks.

On the 18th she went into hospice for what I had been told to expect was the last time. And on a certain level I knew that. But then they’d told me that we wouldn’t be able to heal her bed sores and we managed to do that. So maybe… maybe they were wrong about this.

As we waited for the van to bring us to hospice - our first and only time doing that - we talked about the stories behind the things in her breakfront. I’d wanted to have that chat, but I’d put off for too long. My mind was already circling a track it would stay on for months; I remember parts, but not all.

My mom fought MND every step of the way. I know sometimes cancer patients object to the idea of fighting a battle with cancer, but with MND you can try to keep your muscles working. You won’t succeed, but you can slow it down. In my mom’s case I suspect she lasted a fair few months longer through sheer force of will.

And it’s not just the weakness in your muscles that you fight. You have to fight your ego; to ask for help where you’d never needed it. To rest when you’d never needed to. To accept the unacceptable. For her entire life my mom had battled for independence. And she had won. Asking for help was as hard as holding a teacup in a whithered hand.

Over the course of her battle with MND there were periods where I dropped her off at an airport or left her at a hospital or at hospice and I’d come home and realise that eventually she wouldn’t be coming back. The first times it happened it seemed like a vague concept. Not real.

On the 18th it didn’t seem vague. I got home that night, I went next door to get something from mom’s house and I sobbed. This wasn’t a bed sore. Force of will has limits. And the last time had come.

Her battles are fought. Often not the battles she wanted to fight, but fought on her terms, in her way. Now, home.