28 – The Poly-Truth Potion
(Original title: The Polyjuice Potion)
I’ve been thinking a lot about death for about the last month or so, ever since my Pall Care doctor (henceforth known as “Dr Hubble”) raised it with me. It’s actually been a little longer than a month, probably two. It’s not that it’s “time” to think about specifics, but more that he is preparing me for the inevitability of my situation and checking in on my general mental health and gauging my reactions and such.
Anyway, I’m rambling.
Dr Hubble asked me whether I’d thought about what death looks like for me, and I had not. We spoke a bit about sepsis and liver failure and other body organ failures and the septic insanity that I would experience eventually more than likely. It’s a fairly confronting image when you think about seeing your grandmother in a quiet hospital room surrounded by family, a morphine drip in her arm and the hushed voices of those in there, captive to any mumbled words that may tumble out of her mouth – and then re-imagine that scene with yourself in it instead.
I still have not given that specific image of death any real thought, aside from maybe beginning to compile a list of do’s and don’ts for when I am inevitably unconscious. The whole thought of consent around touching me, particularly when it applies to specific people in my life who have no real relationship with me, and the fact that when I am unconscious I am unable to consent to who is in the room as it happens and who is holding my hand and kissing my forehead and even speaking to me gives me great anxiety.
This will be worked on in future therapy sessions.
We spoke about euthanasia, and I said I’m glad to live in Victoria because I like to have it as an option for me, unsure that I would actually go that route, but thankful for the choice (#prochoice). I said it was a good thing. Dr Hubble disagreed and said that if I was at the stage of my death where I was uncomfortable and distressed and wanted to die, then that is a failure of palliative care and he hasn’t done his job properly.
This last week, and for the last month, and for the last seven years, I have been watching my mother’s mother slowly and surely die in front of my eyes. First were the layers of her personality being eaten by dementia, little by little. I once said to mum that I couldn’t bear to visit with her while I lived in Adelaide because it was so hard to look at her and see that it wasn’t her anymore, and she very quickly put me back in my box – she and my father have visited with her at least twice a week for seven years, and it was just as hard on them but they do it anyway.
They’ve not been able to spend more than a couple of days with me in Melbourne since my diagnosis because they have continued to visit with her to not upset the status quo and give her a semblance of routine. This is heartbreaking on so many levels.
The first selfish level is that their own, only daughter who is literally dying month by month, they can’t spend time with me as I would like because of her is so deeply heartbreaking, but I understand it, and that’s just what it is for now.
The second, deeper heartbreak is that they haven’t had a holiday in over seven years. They’ve not taken time for themselves to go overseas, to celebrate their birthdays or wedding anniversaries or other milestones in their lives with time away because of an obligation to my grandmother, so she won’t feel abandoned and cry that nobody has visited her.
The third level is that they have done all of this for seven years, struggled against the aged care system to get her the care that she needed with not enough support, tearing their hair out and crying and arguing and screaming into a void just to give my grandmother as comfortable and normal existence as is possible in the place where she is. They chose a place that is reasonably modern, and clean, and bright and sunny and has beautiful gardens that she swears she planted (and she will tell you how she grew the red .
The fourth layer is that they moved house to downsize, and moved closer to her aged care facility. They were doing a 90 minute round trip up to three times a week, just to see her for an hour. This cut their trip time in half. These visits for the first three years, and for many times in the years afterwards, often ended with my grandmother in tears, begging my parents to just take her home with them, that she didn’t want to be there anymore.
We have, over the past few weeks, entered the slip into the inevitable death for my grandmother. She feels like she is falling all the time. She sleeps a lot. She’s more and more sedated. She’s distressed. She’s frightened. She asks to leave and go home and she doesn’t want to be there anymore.
So I look at my grandmother and all I can think is, if that were me, I would be so fucking miserable and angry at everyone, and if I was unable to articulate it beyond “I don’t feel well”, “don’t leave me”, “I feel like I’m falling”, I would be screaming inside my own head and mentally rewriting my Will. And maybe dementia means she doesn’t have those thoughts about “why don’t they understand what I’m saying” and maybe she doesn’t fully comprehend what’s happening, but I’m scared for what happens if she does, and she’s trapped inside somehow and her words just don’t work for her beyond short snippets like that.
My mother and I don’t always get along. I don’t know how I survived my teenage years without either her murdering me or I her, and she is far from a saint. But my mother’s loyalty and love and commitment to seeing the right thing be done for her mother should be commended. I’m pretty sure my mum deserves the Mum Of The Year Award For Mums Who Don’t Do Big Things But Do The Big Things To The People Who Matter To Them.
My mum is the best mum, and I wish I had realised that when I was younger.
I don’t even know the point of what I’m trying to say anymore.
I guess, I look at my grandmother and I am reminded of all the things I don’t want to ever happen to me, of all the things that I could become, and it scares the shit out of me. It honestly does. It’s right up there with clowns, face painting, people in character suits and butterflies and moths.
Please tell me your real and irrational fears in the comments and make me feel better. I’m just getting a head start on my grieving. My grandmother is a sad shell of the vibrant and wonderful woman she once was. She hasn’t been that woman for a very long time, but that doesn’t make it any easier.
I know that the first thing you want to do is reach out and let me know you’re here for me, but honestly it’s like when I was first diagnosed, and again when I was told it was metastatic and terminal. It’s overwhelming, I am overwhelmed, and I cannot cope with people showing me compassion and kindness and I never have been able to. Please don’t tell me nice things, tell me awful but hilarious things that are happening to you in your lives. Pretend like I’m not going through this, and potentially missing her death and funeral because I’ll be on a holiday in Europe, and understand that it might just take me a few days to get back to you.
This is my favourite photo of mum, grandma and me.
