My son died, aged 24

[Random789]

My son died. The police came to tell us on Thursday morning, so he died either late on 5th or early on 6th Feb.
He was very mentally ill and also had a diagnosis of autism. I'm not sure if he still had a diagnosis of schizophrenia, but he was vulnerable to repeated episodes of psychosis.
He was transitioning into living in his own flat after about three years of living on a mental health rehab ward. He had just got to the stage of spending nights there, and was due to be formally discharged from his section today.
He died from loss of blood. In the past he had used recreational drugs to try and cope with how he felt and it is possible that happened again and contributed to what he did. We don't know yet.
He was a terribly unhappy person, unable to break away from solitude and inactivity, unable to do anything that would be a source of comfort or absorption or satisfaction.
He was very thoughtful, gentle and kind.

I'm so sorry to hear this. my own son died nearly two years ago. 18 years old, on on the spectrum, MH problems. Experience of being sectioned. Self medicating with all sorts.

it's shit. the waiting for the inquest is horrible too. I assume there will be an inquest for your son?

Hopefully you'll have supportive people around you. The pain has to be lived through, but does eventually become more livable with. The Society of Compassionate Friends do a befriending service for bereaved parents. By other bereaved parents. If that's of any use to you.

Sending you strength to get through this.

Thank you, Jay. I'm so sorry that you also have been through this awful thing.

Yes, there will be an inquest, and an investigation by the local NHS Trust. He was on leave and hadn't yet been discharged from his section, which means that the inquest procedure will be particularly prolonged and it may be a year before the hearing takes place.

Thank you very much for the link to the Compassionate Friends. It looks like a really good organisation and I think I may contact them.

Random I am so sorry to hear this news. It goes to the worst of fears we have for our children. And to know it was that most intractable and intangible of things, mental illness, that led to his terrible unhappiness. It is so bloody unfair. So much we don't seem to know about mental illness, and still our way of dealing with it in medicine/psychiatry is found so lacking, like a sticking plaster over a gaping wound. Not a criticism of those working within that field, but just so difficult. And so devastatingly unfair.

Thank you, forestlamb. Yes, it is all just so puzzling. Even the questions (let alone the answers) seem like an imposition of structure that goes beyond what our understanding warrants. Every question I ask seems like a projection of my own needs and battles. I never ever feel that I am reaching him and attending to his needs.

He had a mixture of good and bad from the mental health professionals. People were well intentioned and mostly competent. But there was so much box-ticking, institutional inertia, mediocrity. Sometimes it was painful to see him so passively compliant when the team around him seemed to be less sharp than him. But what other stance would have been better? None. I was endlessly struck by how gentle and thoughtful he was to everyone. As a teen he had been so stormy and confrontational. But that was only anxiety and confusion.

I'll head off for my walk now and check back later. x

You speak about him, and and about the situation, with such clarity and precision. It is very powerful. The compliance required in that situation, even if given intuitively instead of deliberately, is such a catch 22. What else can you do? These people intend to help, and as you say, someone with a sharpness of insight can see so clearly all the flaws in that world around them even whilst lacking the ability to put any of it right - when they can't even 'put' themselves 'right'. I have had a brush with those places and people. Some really great people, some not so great. And the way the institution functions as a whole...not always so great. Often good at critical care - not so much long term. And the only way is compliance in institutionalised care. He sounds so brilliant, your boy. And so hard to reach - I see familiarity in that too. Hope you have a peaceful walk.

Luckily a couple of the people working with him were I forget the term that is used; something like 'peer workers' people who had been through severe mental health difficulties and at a later stage had been employed to work in mental health care and bring their personal experience to bear. I hope that they eroded something of that horribly hurtful sense of being, as a patient, just a recipient of others' expertise. I hope that the idea of a peer worker nurtured in him the sense that he was the expert (though a flawed one) in the subject of himself.

I always tried to remind him of the wisdom and insight he had, but I'm not sure that ever gave him the comfort I wanted it to.

I think (I hope) that he had comfort from friends on the ward, fellow patients, with whom he had a reciprocal mutually supportive friendship that might have been protective of his self-esteem. I met a couple of his friends at the funeral and speaking to them felt very important. I was so glad to have their view of him - a friend, a person, someone they valued and missed.

That's lovely Random, about friends he made on the ward. And about his being the (flawed) expert on himself. He might have had so much insight on his own experience and condition even whilst feeling powerless to change it. And the peer workers. I am glad there are such things - I didn't know. Seems so important to have that sense of solidarity and that they have 'been there'. Already he is coming across so clearly from these little snippets you share. Someone so thoughtful and insightful - I wonder if he knew of his own gifts, but didn't see them as of much worth as they didn't make life more bearable. . As a mother it seems so often that the observations one has to make about one's own child are brushed off so easily, at the best of times. But other people's perception of our children can make our own ideas about them more corporeal - they weren't just our own motherly biases. So good to meet the friends he made on the ward.

The grief I feel, and the things I dwell on from time to time, are almost always about the awful events of his life, rather than his death. I wish I could have done more to make his life happier and less anxious.

The circumstances of his death were atrocious. He harmed himself horrifically. But still, shockingly, his death seems to me almost like something 'small' -- in the sense that the awfulness of his life had seemed for so many years to make it inevitable that something like this would happen. It just felt like a final breath, almost imperceptible, as if he had been dying for years instead of fully alive and then seconds later transformed.

I can't react to the death in any way that seems commensurate with its awfulness. I don't know if that is because I am blanking it out or because, truly his life really was more awful than that awful death.

By 'small', I think I mean it was almost as if it had already happened, years ago, and the actual event of his death was just like some sort of formal completion, or notification, of something already real. It's nonsense, I know, and I think it might be a very active piece of blanking/denial on my part.

Random789
I am so sorry for your loss.
He sounds an amazing young man and you speak so eloquently about that - he comes across so powerfully, as well as the problems he had.

Oh I am so sorry OP. We don't always deserve the pain we get in life.

I'm so very sorry lass.

May he rest peacefully.

I think I understand what you mean Random, about the sense of inevitability, and the act of formal completion, when you've witnessed his suffering for so long. I hope you to continue to write. I'm not a massive believer in 'making sense' of the worse experiences we have to endure, but writing at least bears witness in some way, becomes one's own companion to the truth, or the truth we try to work out. How is your younger son?

I'd be interested in what you had to say about the limitations or misconceptions of making sense this project of 'making sense' by writing. Is it perhaps because this project is often so oversold -- both in therapeutic contexts and as a way of promoting or conceptualising books, films, etc that address suffering?

I read an interesting piece in the Guardian bout how we can corrupt our memory of the Holocaust when we take too pat an approach to writing about it. The most striking part of the article was a quotation from an Israeli novelist, Aharon Appelfeld, about 'learning silence'. Sometimes silence and not words is the appropriate response and we can distort that by leaping too quickly to words. In fact, writing can be a way of learning silence -- evacuating and stabilising words to prevent them from constantly shaping and reshaping themselves in your head. In this case, writing wouldn't really be making sense, but just a form of pest control.

Sorry, I should have previewed that and made a greater effort (in in this case at least) to 'make sense' [wry smile emoticon that MN doesn't seem to have].

One shocking thing about DS1's death is that as the second unit of my Open University unit in creative writing I had written a piece of what is called 'creative non-fiction' about my attempts to make sense of his plight by narrating it -- and more generally about the various narratives that are told about people with severe mental health problems, sometimes squeezing out their own self-authorship. I was literally just about to click 'submit' on the piece as the police hammered on the door to inform me about Tom.
That was so confusing.

DS2 is doing ok, thank you. He has been wonderful. I had to tell him over the phone, which was awful, and then we all met up in Middlesborough to see Tom. DS2 has a very solid bunch of friends who have given him a lot of support. I do worry about him a lot, though, of course.

Random thank you for putting so succinctly into words what I haven’t been able to. My sister also had a truly awful life for many many reasons and was far worse than her death which now seemed inevitable.

For your pain, and strength

Random you speak so warmly of your DS. I'm so sorry that you've had such awful news.

Thank you, everyone who responds. It is much appreciated.

Clevererthanyou, I am so sorry for your sister's very difficult life, and for her death. Siblings must experience these things in a unique way. I hope that you, and DS2, get the chance to speak to people who understand that particular perspective. xx

I realise now that I have had a namechange fail. I am Random789.

I’m very sorry for your loss @Random789

I love the idea that writing is a form of pest control. I will think more about this. Wasn't it TS Eliot (not a massive fan tho) who wrote "Words strain, Crack and sometimes break, under the burden, Under the tension, slip, slide, perish, Decay with imprecision, will not stay in place, Will not stay still.” I like Appelfeld's idea of 'learning the silence' too. I think it helps in some fields to write in metaphorical terms, iyswim. But if you can, and I think you can, to write with the precision and clarity of thought I think you have, then you should. I am glad your younger son is doing ok, and has friends around him.

Sorry for your loss, OP.

I keep thinking of this, that when Tom was only 5 months old I had to stop breastfeeding him because I needed to begin taking sertraline or seroxat or something. At the time doctors regarded it as unsafe to feed your baby while taking it. Tom hated the transition. He screamed and refused the bottle and I was miserable and tense and impatient – almost certainly my state of mind added to his panic. Eventually he relented and drank from the bottle. I imagine him being desperately unhappy in that moment, bereft and confused at the loss of the breast but consoled, against his will, by a rush of overly plentiful, chemically sweet formula.

I’m frightened that he didn’t recover from that. He would have had a searing memory of desolation all mixed up with a compulsion to suck on a substance that blotted out his misery. His adult life was full of that same moment, again and again, until the frenzy of desperation and self-consolation became so extreme that it killed him.

Because I don’t think that he meant to kill himself that night. Cutting himself, like drinking and taking drugs, was all about finding sensations to calm himself and displace the horror he felt. So why didn’t I do that for him? If I had to take him away from his breastmilk, why couldn’t I do it with the calm and patience that would have made him feel safe through the transition. And on any number of subsequent occasions when he was in a frenzy of anxiety and searching for something to hold on to, why couldn’t I call time out and just hold him, somehow, in a way that made things ok?

Your pain is so deep. I don't think your son meant to kill himself either, I don't think they think of it as death, only a chance at release. Im not going to tell you not to look back at all the incidental things that happened to him when he was young, because thats probably what you need to do right now in order to process. Are you keeping a journal, what you have been through could really speak to others if you ever felt the time was right. I have many things I could say, but I just can't in a public forum. Keep thinking and loving him.x