The Death Dash and Other Irreverences

How as an autistic person I deal with death. Let me first say this is going to be blunt, and irreverent, and possibly inappropriate and if that kind of talk around death upsets you please scroll by.

Hello my lovely readers,

Let me first reiterate that this is going to be blunt, and irreverent, and possibly inappropriate and if that kind of talk around death upsets you please scroll by. Don’t read further. I’ll put an irreverent photo next so there is space between this and my writing and will give you time to close down the email or post.

Photo by rivage on Unsplash

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These last few weeks have been a little difficult in our house. My 95 year old mother in law (MIL) is in hospital after a bad fall, causing a nasty concussion and her admission to hospital where she has decided to ‘give up’.

Now I give you 95 is a good old age and she should have had a good life to look back on, but … in the 34 years I have known her she has constantly not done things, not bought things, not enjoyed the day she is in because she ‘might not be here tomorrow’ so what’s the point? As she gotten older the rhetoric has been added to with ‘no one should be allowed to get so old.’ Now I agree being old is tough, being in pain is tough, being alone (FIL died 17 years ago) is tough, and I really feel for her. However, in those 34 she has never once helped herself. She wouldn’t go to the drs because they did nothing for one of her issues in the 1950s and she lost a child to preeclampsia in the early 1960s so they are all wrong and medical science couldn’t have ever moved forward and everyone is ‘foreign’ anyway so they can’t know anything. (I have spent years trying to educate her and chase away her innate racism, she never went unchallenged.) She wouldn’t go on holiday, buy quality food (and then always complained at how awful the extremely cheap stuff was), buy new clothes, etc saved every penny for her children’s inheritance. However that’s a bit by-the-by. She can spend her money on what she wants, or not spend.

However, this insistence that life was awful and she was just waiting to die has taken a toll on those around her. I’ve watched my husband deal with being told he ‘shouldn’t have bothered’ going to see her etc. Everything is moaned about. It makes him feel rejected. Everything is either judgemental or passive aggressive. If she wants the lawn cut she won’t say ‘can you cut the lawn?’ which would be so simple, but will say things like ‘oo, I don’t know when I will be able to get anyone to cut the lawn, it’s so difficult, no one seems to want to do it. It’s been such a long time and I’m worried it will get overgrown’ and then when you say you will do it you get ‘ oh, you don’t have to, you don’t want to be spending your time doing jobs for me.’ It does get my goat. I have told her if she asks me directly I will do whatever it is, but I refuse to take passive aggressive hints. She won’t ask. So I don’t do. Hubby is better and just gets on with it.

I think about the 34 years I have known her and how much of that time she has wasted being sour about being alive. From a personal standpoint, if you hate life that much, I’m all for ending it. My husband is the opposite. But I see the damage she has done to the relationships around her. A quote from

Allegra Chapman

I found on Substack sums it up

“Following your heart is scary. But you know what’s far more terrifying? Getting to the end of your life and realising you never tried. That you never leaned into your joy. That you never lived.”

My MIL has stopped living her life, for at least 35 years she hasn’t ‘lived’, she hasn’t tried, and certainly has never leaned into joy of any kind. I want to have lived.

So this week we’ve had the first ‘death’ call (there may be others), the one where the drs actually ring you, rather than you struggling to find someone to talk to, and tell you how dire the situation is. In this case 4% kidney function and falling, no chance of dialysis and a DNR in place. And today we made the ‘death dash’ as I call it. Putting your life on hold to get in the car and make that journey to say goodbye for possibly the last time, basically. It’s inappropriate and irreverent to call it a ‘death dash’ but it certainly helps the gloomy atmosphere. And it is what it is. A dash, in a vehicle of some ilk, to see someone dying. (Though it turned out it wasn’t as dire, and there is a possibility she may rally, that if she puts her mind to it and if the doctors can actually find something to cure she could live. If she puts her mind to it. So we are back home now.)

I’ve done it once before, for my mother who died in 2001. And I decided not to do it for my father in 2022. We didn’t get on that much anyway, the step-witch was already manipulating the family and telling different lies to each of us. We were at my eldest’s stage debut as an adult in Evita in Bath, a long way already from home. The death call (text) came was received from my sister at the intermission when we turned the phones back on. We had a few choices to consider, a) stay for the full performance and then take our daughter home as previously agree and then travel on another 3 - 4 hours, b) stay for the full performance, take our daughter home, and wait until the morning and then travel to see him, c) go immediately missing the offspring’s performance (and getting into deep doo doo with them if we did so), or d) not go at all.

I chose b) with the awful hope that he would die whilst I was sleeping and I wouldn’t need to make the journey so d). It seems harsh, but I chose the family he rejected for the previous 22 years. I didn’t want to watch him draw his last breath. I didn’t want to have to pretend I felt anything other than relief at his demise. Selfish? Oh, very definitely YES! (He did die overnight with my siblings there, my sister and younger brother when he died, and my other brother a few mins too late. I did the maths, we would have been very unlikely to have made it even if we had left immediately so I don’t feel too guilty.)

My husband did a mad ‘death dash’ from the Falkland Islands on military transport via many airports when his dad suffered a catastrophic stroke those 17 years ago. MIL visited him once and then refused to see him again, he was brain dead and they were just waiting for him to waste away. He died a week later. The kids and I followed on, on the normal transport, separately.

My mother, 23 years ago, also brain dead from a subarachnoid haemorrhage, lingered for 14 days, denied medication, and sustenance, until she too succumbed, to a chest infection on the one night no one was sat with her as we were trying to celebrate my brothers birthday. It was like she waited for the vigilance shifts to stop and die in peace. We had done the ‘death dash’ when she first was taken into hospital. Sat by her side, not seeing the woman who was mother, wife, friend etc but just a human husk devoid of real life, lacking that certain something - if I were religious I would say lacking a soul.

When I die I joke about wanting to be buried under an oak tree so that some day in the distant further and I e sustained the oaks life for centuries it will topple in a storm and I will be there in all my skeletal glory dangling from the upturned roots. What fun that would be! Scaring all the descendants to bits. But I’ll probably be cremated and scattered to the wind.

Photo by Anastasia Voronina on Unsplash

I have talked a lot with my husband in the last few days about death. We’ve joked. He’s been cross at his mum a lot. I’ve struggled to say the right thing and told him that I’m struggling, so he knows I’m trying. He’s patted me on the head when I asked him too, and we’ve done the death dash. We may do it again, we may not. We’ve both decided, I think, that it is okay to be not okay watching someone die. And if that person isn’t conscious it’s definitely okay not to be there if you find it too distressing in any way. I don’t know if this is autistic me thinking but life ends, and we all will die so we all have to make peace with death in our own way. My MIL chose not to watch her husband waste away all those years ago. I chose not to see my father die. I don’t know if we will see my MIL die or if we will chose not to. At the moment she is cognisant and not at deaths door. That could change at any moment, she’s physically very weak.

Death is a part of everything but I don’t know if I should HAVE to witness it. I would be there for my husband and children, but I don’t have those really strong attachments to any others of my family, a bit of which I feel is part of my autism. It’s not a lack of empathy or feeling, it’s a logical feeling in a way, a bit of the old rigid thinking and feeling that others should think like me. I also don’t think I have the strength and resilience to sit and watch someone die right up to the last moment. I don’t think I would have the right reaction, all the grieving would have mainly happened in that wait, and as the final breath is drawn I’m worried I’d just feel relief that it is all over at last. Obviously, if asked I would do my darnedest to be there, but I certainly think if a coma is involved it’s not necessary. I would not want anyone to feel forced to be there for me. Lordy I struggle if my husband sits with me for too long when I’m ill, mostly I just want to be left alone. I do believe in euthanasia for those in a coma that are left to die without any dignity all, what is the point? They won’t recover. There is a greater chance their organs won’t be viable by the end for transplant. The family suffers as the end drags out. I’m also for assisted suicide for those that want it. A possible controversial stance but it’s mine and I claim it.

I wish the journey towards death was less wrapped up in morbidity and sadness. I want to have my wake before I die, a party for me that I can actually partake in. A celebration of me whilst I’m around to appreciate it. Let’s have fun, remember good times, take solace in our friends and family without the grief of a recent death being a ‘Debbie Downer’ on the occasion. Let’s have happy days of the dead where we remember those departed and celebrate their memories. Let’s embrace the inevitable and so make it much less scary.

Photo by Angela Wolz on Unsplash

What do you all think? Tell me in the comments below.

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