Maintaining the Rage

Things they don’t tell you about dementia, number 542: Rage.

Not Mum’s rage. That does come and go – but it always did. It’s hard to tell where Mum ends and dementia begins. I’ve been a target of Mum’s rage as long as I can remember. That’s not new. But it used to go on for months. Now she forgets within minutes. There are upsides.

No, the rage that’s a problem is mine. I want to kick, punch, and scream until my throat is raw. I want to throw things at the world. I want to tear something down. Blow something up. Beat myself senseless.

Do not, at this point, tell me that everything happens for a reason. There is no reason for this. Dementia has no logic, no reason, no plan. Dementia is a senseless, random trauma that crushes the breath out of me even as it eats away the life of my mother.

I want to scream into the face of the world that it’s not fair, but the world couldn’t care less. I go home, go to work, care for my children. I do the shopping, take my daughter to swimming and answer my email, when all I want to do is fling myself at the floor and kick and scream “THIS IS SO UNFAIR!” But life has no time for tantrums.

Break all the records, burn the cassettes

I’d be lying if I told you that I had no regrets

there were so many mistakes, and what a difference it makes

but still it shouldn’t surprise you at all

You know

I said it shouldn’t surprise you at all, You know

Don’t look now but you have changed

Your best friends wouldn’t tell you

Now it’s apparent, now it’s a fact

So marshall your forces for another attack

It was always within you, it will always continue

And it shouldn’t surprise you at all

You know

Billy Joel, Surprises

I am so angry. I hate this. I want it to stop. I want it to end. I want relief. I want to know what’s coming and how we will handle it. I want to pretend it’s not happening. I want someone to bloody well fix it, and now. I want to be held and told it’s ok. I want to push the world away. I want to make it stop. I want to run away. I want to stay home and hide. I want to drown my sorrows in chocolate and icecream. I never want to eat again.

I can’t do this anymore, and I can’t stop. It hurts. Don’t tell me how to help her – she won’t let me. Don’t tell me to remember the good times, there weren’t many. Don’t tell me you’re sorry. Just stand well back while I implode. She would hate this, but she left years ago. There’s no connection. No parent. There’s nothing left but rage and fear. But I can’t walk away. I shouted at her today. God knows she provoked me, but she crumpled like a child.

I need to be angry. It masks the fear, the guilt, and the sadness. All I can do is maintain the rage.

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When life hits back

On Friday morning I was excited to be heading to Geelong for a workshop on Diversity in Computing, as part of the Australasian Computing in Education Conference. I have dear friends in the Computing Education Research field, so stealing away from work to brainstorm how to increase awareness of, and interest in, Computer Science was great in itself – especially because I had huge respect for the stars running the workshop – but I was also going to catch up with friends. I was all set for a great day.

I’m not a fan of driving, for the most part. It’s a necessary evil, it seems to me, but since we got a hybrid driving has been much more fun, so I wasn’t even worried about the relatively tedious drive down the Geelong road. But as I cruised over the Westgate, having left early to make sure I beat the peak hour traffic, I suddenly realised that this was my first trip to Geelong since the day my Dad died, over four years ago.

God knows my dad and I had a complex relationship. By the time he died I would go so far as to say it was quite dysfunctional. His death was mingled relief and pain: relief that he was no longer suffering (his long deterioration from cancer had already been traumatic for years), pain that so much went unsaid. The day he died was pure shock.

My sister and I picked Mum up from Ocean Grove, where they had been when he died. He had gone for a walk and died in the street. Mum, who doesn’t drive, was stranded. So we gathered ourselves together, faced the practicalities, and raced towards her, where she sat comforted by a generous and kindly neighbour. I remember Tina Arena, Songs of Love and Loss, coincidentally on the car stereo as we drove down. I remember stopping for coffee at a really odd little drive-through coffee booth near Geelong station. I had chai tea, thinking I had had enough caffeine that day. I remember tears. Worries about the future, especially Mum’s future, and shock. So much shock. I don’t really remember much about arriving at Ocean Grove. I’m pretty sure we didn’t stay long, although I had packed an overnight bag just in case. In truth “packed” suggests a level of thought and planning that wasn’t possible. I had thrown some things into a bag that may or may not have been adequate.

I haven’t been to Ocean Grove since that day. I haven’t even been through Geelong. And even though much has changed – Geelong seems to have grown up somewhat, it is shinier, and more glamorous than I remembered – being there was a shock that I was completely unprepared for.

The morning was fine. I was catching up with friends, talking about work, brainstorming projects. A dear friend who, it turns out, believes in revenge gifting, gave me two very fine bottles of wine to take home with me. I was planning lunch with other friends, before a really great workshop.

But after lunch I felt ill. I thought maybe I had been glutened, but it was different somehow. I went to the workshop and halfway through felt an unbearable urge to burst into tears. For a moment there I was lost. I messaged a friend, scraped myself together, and it was ok.

But it was weird. I haven’t cried for my dad in years. In many ways the trauma of his passing was eclipsed by the trauma of the year before his death, which was truly horrendous. I cried for him. I miss him. But in many ways I miss the father I wished he could have been, rather than the father he actually was.

After the workshop I dropped two friends at the station, and in the middle of light and happy conversation we drove past that coffee place. By this time I was wise to what my confused brain was doing to me, so I was ok. But it was still a shock.

I was in the present, but I was unexpectedly back in that dreadful day at the same time. It’s probably just as well my car didn’t choose to play me any Tina Arena on the way home, or I’d likely have had to pull over and cry. I’m crying now.

Grief has a way of leaping out at you at unexpected moments. I try to be kind to myself when it happens, but the middle of a workshop isn’t really the right time. Sometimes it’s necessary to suck it up, and then write about it the next day with a divine glass of wine, as a form of therapy.

These are scary times. The scariest I can remember. But life goes on. And sometimes it gives you an unexpected beating. But there are workshops, passionate and dedicated people, and good friends with divine wine. There are people to hold you when you fall, and people who will come looking for you if you fall silent. There is hope all around, even when grief seems to be taking you down.

Some days life pushes us over, but we always have the option of pushing back. Push back. Hug your friends. And be kind to yourselves.

 

***this has been posted unedited, not even proof read, as a stream of consciousness grief reaction. It is as real as it can be. I hope it speaks to you. It helped me. You helped me, by being along for the ride.