Loss of a son

[Grandma]

 Hi

It's all a bit of a muddle, but I would welcome ideas on how I can support my 25yr old, very high functioning Autistic son.

Just over a fortnight ago,  his nearly 5yr old son tragically died following, a little over two months spent in PICU. My son was in the process, with the support of Social Services and the maternal grandparents, of seeking to gain care and control of the little lad, who hadbeen removed from his mother due to negligence and abuse.

We were not aware of this little boy's existence until after his death, which from our perspective confuses matters in respect of emotions.

My son is abusing prescription drugs,  not sleeping, drinking, and is becoming both progressively more  paranoid and reluctant to engage with anyone.

He blames himself for his son's death (he signed for the life support to be withdrawn), and for not having realised that the little lad was his before.

I am struggling too, whilst I did not know the little boy, he was my flesh and blood, and I am grieving the 'might have beens'!

Any suggestions on what we could do to support? (We are listening and have made it clear that we would welcome.

[Catbrian]

What a truly awful experience for you and your son.  To lose such a young life is always difficult to understand, but I can only imagine the emotions surrounding only discovering his existence and applying for custody, and then there's the unimaginable responsibility of switching off life support.-  There is bound to be a lot of regret and what if's.

I imagine there's a grieving process all of you will go through.  Of course, your son's abuse of alcohol and drugs is a way to dull the pain.  He might not be ready to ask for help right now, but hopefully he will be very soon.  All you can do is support him as much as you can, while trying to encourage him to get professional help.

You are struggling to cope with your feelings for your son and grandson and that must be enormously difficult.  It's good you found the Forum.  Perhaps it might help to share on here for a while.

[Grandma]

Hi

Thank you Cat, it is a bit of a nightmare, its particularly difficult because my son is Autistic albeit high functioning, he is really rigid and once he gets an idea into his head, that's it!

I am incredibly proud of how he responded to discovering that he was a father, and the commitment he showed, but there is a bit of me that wishes that he hadn't, to lose a child is a pain that never wanes; Two of mine are terminally ill (including my son himself), and just the knowing what is going to happen is killing me slowly, to have it actually happen must be worse still.

Anyway, thank you for being there xxx

[Sweetpea]

My goodness how awfully sad. Does your son have a good gp? Does he see him/her often?  Just thinking they the Dr would maybe realise things are not right for your son.  Its understandable that both your son and yourself are suffering.  You need to go through grieving.  Do you tell about the baby?

Big  for you.

I hope you find the forum helpful, we are a friendly bunch and will help you as much as we can.

S x x x x

[Grandma]

Hi

It is all a bit nightmarish, we seem to lurch from one crisis to another!

My son won't see his GP, he says he will nag at him, I don't think he has told him about his son but in any case he is saying he doesn't want to explain to his doctor about how he feels.

I think he has been contacted by cardiology as his recorder is doing strange things, but one of the things I have learnt over the years is that he will only tell me what he wants to tell!

My daughter is seen by specialists pretty much every week, her condition has been deteriorating pretty steadily and rapidly over the last three years, it's a case of hoping that she may have some small period of remission and  gain a little more time.

I don't cope, I just feel incredible guilt, (my rogue genes), and lurch from one day to the next.

Big hugs xxx

[Catbrian]

When he's ready, he can always approach a drug and alcohol project.  I'm sure most projects will take self-referrals.  There are trained workers there that will help him find a way out of this.  But, it's got to be when he's ready, otherwise it will never work.  Maybe hoping for change right now is pointless.  All the pain and confusion and then to have the "complications" from autism on top of that, must be really difficult.


Sorry, I seem to have missed what is happening with your daughter.  You've got a lot on your plate, eh?

[Grandma]

I reckon I have serving bowls going on Cat!

My daughter woke up at 15yrs old and couldn't weight bear and has rapidly deteriorated since! They did a load of genetic tests and identified that I have, and she and my children inherited a condition called Ehlers Danlos Syndrome.  She and my son have severe autonomic involvement and are both palliative care patients!

My other daughter and I have EDS but in a much milder form without the autonomic system failure.

I stumble along with great difficulty, particularly as my daughter no longer talks to me ( she is very angry and blames me for her prognosis at the moment)! I do too though the rational bit of me knows that is nonsense!

Big hugs xxx

[Catbrian]

Oh, you do have a lot going on, Grandma.  I hope your daughter see's sense soon, this condition is no one's fault

[Pip]

I am sorry that I missed this thread.  Life can be very cruel at times.  With regards to your grandson it's even harder as you didn't have the privilege of having him in your life.  I hope your son gets to a point that he will let his GP help more.

[Grandma]

Thank you everyone for the kind thoughts, it's such a hard one to accept and come to terms with. I am hopi ng that my son  be able to deal with it all, but I don't think that I can do a huge amount for him, in part because he wants to do it alone and in part because I'm not well enough myself.

Does life ever get any easier? I am so tired of the constant run of bad luck / bad news. Tomorrow is the anniversary of my Mum's death. I haven't grieved for her yet. Perhaps if I hang on I can do one massive mourn? She died a year ago tomorrow. The funeral was exactly what she would have wanted but I hated it, it was like being in a goldfish bowl with tents and overflow rooms into the village hole as and video links. The wake was worse, hundreds of people, photographers, jazz band the lot. I was supposed to meet and greet but hid most of the time. I just wanted a quiet time to say goodbye quietly, not some circus.

[briscounsellor]

I hope you are able to find the time to help yourself. You need to look after yourself as well if you are able to help others. My feelings go out to you.