my boy

[mum-forever]

I lost my son on sunday 21st may, while he was lying dying in the hospital bed, the person from intensive care came to tell me what support they would give my boy if he ended up there, basically they said he would have limited care and no ventilator because of his disability, of cause I said I would take any help they would give him, in hindsight I am wondering if this was right, wouldn’t he have had the right to all the support of a normal person ending up on icu ?

[Jofisher]

I can’t begin to know how you’re feeling but I can only imagine as a Mum of a disabled son. I would ask for an enquiry as to why your son wasn’t given every opportunity possible like anyone else. I’m so sorry for your loss and I hope you find comfort from your family at this very difficult time and you get the answers you deserve .

[Tracidu]

So very sorry for your loss . This is heart breaking

[BenjiB]

I’m so sorry for your loss.

I would ask for a meeting and ask them to explain the situation and their reasons and contact PALs . I guess a lot depends on what sort of disability your son has and whether there were medical reasons for not giving certain care.

[Bergersil400]

So sorry for your loss this is heartbreaking to here, and a concern for all of us with a disabled child, this won't through my mind during covid what if my daughter got sick and a decision was made to not intervene . Thankfully when she eventually got covid her symptoms were so mild no one would know she had it without a test.Back in 2011 my mum who had alzheimers was admitted to hospital with dehydration due to not eating. The consultant wanted to withdraw treatment. . We said no we weren't ready to say goodbye. She was age 71. They abided by our decision, and she lived a further 2 years where her quality of life improved in a new nursing home. She passed away peacefully, without anyone needing to make a decision.

Hope you get some support and answers.

[wazzy22]

I’m sorry to learn of your loss.

It’s absolutely OK to ask questions and PALS is a good idea as a place to start. I would try to keep an open mind at this stage though. The decision to not ventilate a patient is based on many factors that apply to all patients - whether disabled or not. For example a terminally Ill patient would not be ventilated but there are also many other circumstances where it would not be appropriate. I don’t know the context of the situation in your son’s case but you should be able to understand why that decision was made. Medical staff have a duty to act in the best interest of the patient but you need to know that they were endeavouring to do that rather than discriminating against him. I hope you can be reassured that it was the former and not the latter - but you need to ask.

[redyogamj]

How sad! I completely identify how you must be feeling. I nearly lost my elder disabled son a couple of years ago when he was misdiagnosed by his GP. He was only ill for a week and sje insisted he had constipation when his stomach was so distended that he looked like he was 9 months pregnant. His staff were distraught and I intervened and took him to my A&E and begged them to examine him - the doctor refused to do it because he asked if my son was violent and I explained that he wasn't but he might push the doctor away because he was scared - he has sensory disabilities as well as a learning disability and communication is a problem for him. The next night he was vomiting faecal matter and I called an ambulance. Ultimately he had excellent support and treatment in hospital, in intensive care and on a ward. I couldn't fault the consultant and he recovered well.

[Mybestfriends]

Can't begin to know how you feel, but if this were my adult Son, I would want answers too. So So sorry for your Heartbreaking loss. Warm Hugs 🫂

[MontyCat]

May I add my condolences to those others have posted. This is so sad, and I hope that there were purely medical reasons for the lack of intervention. Your son had the same rights as any other patient and I agree that you should receive an explanation from medical staff. I hope the answer offers you some comfort that everything was done that could be done so you can find peace and come to terms with your loss.

[Inside]

I’m so sorry for your loss it must be heart wrenching my painful for you. There is lots of good advice from previous posters. I hope you find the answers and peace you are looking for. Sending you warm hugs.

[Salah11]

I am so sorry for your loss. It sounds like you and your son were let down at many stages (I read your previous post too) at least partly due to disability discrimination. I know you’re in shock and grieving but if you have the strength, do go to PALS and there is some good info here. citizensadvice.org.uk/law-a...

[Library-girl]

heartfelt condolences. This is so heartbreaking and sad sending so much healing thoughts to you at this horrific time you and your poor poor child xx

[anonymous-28]

Please accept my condolences, so sorry to read this. Sending my best wishes

[elephant30]

It is really heartbreaking .May God gives you strength .

[BarbaraGood]

I’m afraid I don’t have any meaningful advice but I just wanted to say how sorry I am for the loss of your precious son. Please take good care of yourself whatever you decide to do now 💙

[Annabellelily Community friend]

I'm so sorry for your loss. There really aren't much words that can do justice, I can't imagine what you and your family must be going through. If you need to talk, everyone on the forum are here to listen. Take care and sending you warm wishes