My Gramps is dying.

Death is hard for everyone. Everyone deals with it differently. Everyone’s experiences of death are valid.

But, this post is about the death of a close family member when you are autistic…..when I am autistic. 

I have not experienced much death in my 32 years.

Pets when I was young; my best friend when I was 15, her toddler niece died. I remember responding the way I thought you should when something devastating like cot death happens. Probably based on TV and film portrayals of grief. I wailed, I fell to the floor, crying. This is not to say that I wasn’t genuinely sad: it was an awful thing to happen to the sister of my friend. But I always feel like my expressions of emotions, of what I feel inside, do not match other people’s. As if I have to map my reactions to those expected, to those understandable by others.

When I was 22 my Dad died, suddenly. He fell in the bath and died a few days later.

My sister and I never lived with our parents, fostered as we were by our grandparents. Still, we visited and saw our parents often, Mum more so. But, it was a shock when Dad died. My Gramps came out his flat to tell my sister and me before our Mum could come wailing out to tell us, overemotional and inappropriate (not her fault, just the way she is). My sister in the passenger seat, me driving, Gramps telling us through her passenger-side window. She looked to me, I cried, so she cried (I’m the big sister). 

For much of the year after Dad died I was like a zombie, emotionally, in my movements, my behaviours – slow, numb. I was the only person capable of taking care of his funeral, his wishes, his meagre belongings. I made lists, I organised, I took care of everything. I remember my sister saying that our aunt (my Dads sister) thought I was cold because I wasn’t wailing with tears as she was. But, every time I did get upset, in the moments when I allowed myself to think about the sad circumstances of his death, the difficult life he and my Mum had had, I would try and reach out to someone, My Granny, my then boyfriend, and I was confronted with their sadness, or their lack of understanding. So I shut down. 

And so, after a year of zombie-like, shut-down living I broke down. I am autistic, but I feel, I shut-down and make lists, I organise, I distract myself, I rationalise. But this can work for only so long. 

Ten years later and my Gramps is dying. I have had a year and the opportunity to process this. To be the level-headed, unemotional adult in the family (as usual) who he wanted by his side, taking notes when the consultant explained that he had cancer, that there’s nothing to be done to treat it. The one to explain his medication to him (learnt from being a pharmacy dispenser for years). To make my lists. Lists for his medication; the palliative care team contact numbers; the funeral arrangements. 

I am losing the only person who I feel just accepted me for me. He never asked me to be anything other than myself, or expected me to be different. I don’t think it crossed his mind that I am odd. He has taken care of me since I was a baby; helping out with what little money he had when I was (still am) a poor student; teaching me the practical things in life: how to work a boiler; change a fuse; put oil in the car. 

I have done as I did when Dad died, how I cope with all difficulties, all experiences I find challenging. I make lists. I organise. I shut-down. But, this time, I am aware that I do this, and why. I try and let myself have moments of thinking about the sadness, what being without him will mean. I worry that without him I will be truly alone. 

My boyfriend (L) is being really good to me, remembering to message me, making the journey to my Gramps on the train whilst my sister and I provide 24 hour care. My best friend (K) is there for me; my ex and friend (A); my sister (although we’re getting cabin fever, and go from pissing each other off to setting each other off in fits of hysterical laughter). Maybe everyone feels this way when someone they love is dying: alone. 

I have always felt weird, odd, an outsider (so cliche). But, in my Gramps flat, sitting on his sofa, he in his armchair, us doing the crossword (well, me Googling the answers) I was the most peaceful – this was my favourite place to be. Still, my awkwardness was never far away, I still felt uncomfortable hugging this man who brought me up and loved me unconditionally. And now that I am here looking after him in his last weeks (there was no question I would do so), I have to grit my teeth and deal with the overwhelming smell of piss, to force myself not to vomit when he does (I have a highly, and annoying, sympathetic gag reflex), and feel guilty that I can’t cuddle him because I know he hasn’t brushed his teeth or had a proper bath. 

I have noticed that I flick my nails a lot at the moment. I do this when I’m stressed anyway, but now that I am aware that this is a thing for people with autism [‘stimming’] it only distracts me/reduces my anxiety until I realise I’m doing it. Urghhhh! Can’t  even enjoy my autism when I’m conscious of it!

At present I don’t feel like much of a person. My days and nights are blurred into one long temporal vacuum, and my poor brain is fuzzy, full of worries, mental lists and conversations that need to be had (with my Gramps’ landlord; his family; my university…). 

There’s my safe, logical part of my brain telling me it’ll be OK eventually. Once he passes and I can put his affairs in order, I can begin to move passed this dense fog of thinking of everything and nothing at all. But until that point, I have to live in this limbo, with emotions so overwhelming to the point of numbness. To remind myself, “You can still get through this and get back on track with your PhD, it’s up there, in your head, just needs getting down on paper”.  

With plenty of time to sit around doing little but wait for my Gramps to die, my sister, Aunty (J) and I have spoken somewhat about the idea that Gramps is also autistic. This meant admitting to J that I am probably autistic. It turns out she thinks she might be too, and agrees that her quiet, solitary, routine-loving father is also. This is nice. The honesty. It doesn’t matter that Gramps doesn’t know what we suspect, at this stage what difference does it make? It’s nice because she doesn’t judge. And I for one think, generally speaking, that I am awesome (insecurities, oddities, and social exclusion aside), in-spite of, but more likely because of, being autistic.

At present, there is no conclusion to this particular blog, it is to be continued, when I am back to my typical odd self.