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Passing thoughts advice - Carers UK Forum

Passing thoughts advice

For issues related to specific conditions and disabilities.
After two and half years of hell and a house move and the Courts locking up the people causing the problems for a very long period of time. stating that it was unacceptable to abuse a disabled person or their carer and to continue this over and over even when special court conditions were put in place, I thought things were on the mend and for a while the lad I care for stopped having nightmares and started to go back out then suddenly he became ill and was rushed into hospital and after spell in hospital was sent home only to be sent back in a week later by the out of hours Doctors for three week. He got home and the new was not great. The hospital put a time scale on his life because they can't do anything else for him. His body is leaking from various points and while they can do their best to control this they tell me it will over take him and he will just pass away. They have operated on him which has help stop the pain and my sister took him in order to give me a break to go to the AGM.

I don't know if I should tell him that the doctors say he could be gone within 2 years as he has learning issues and brain damage and he tends then to over think things and work himself into state. Yet something tells me deep down inside he has the right to know as he got the right to live life like every day is his last.

The consultant says his insulin will just stop working at the end and he will go into a coma and pass away. They say that they will keep given him insulin to make him think every thing is normal and I told him he was in there just to talk to him and not to treat him like an idiot and the consultant said he would understand and I said well that will make two of us so get in and talk to him and he just said ok your ill and we will do our best for you. now we will give you some stuff and you must take every day. Any question no good and walked away before the lad could speak.

So it left to me. I have his Social worker coming out on Friday next but wonder if anyone had any advice.
If it were me I would not tell him. I would however still help him live like each day is his last. It doesn't sound like he would understand sufficiently so kindness and love are the order of the day, imho.
My son has severe learning difficulties. He's known all four grandparents were "very ill but the doctors are doing their very best" so he was in some way prepared for their deaths.

If he was very ill, I would not tell him, as I would not like to frighten him - and that is in his best interests. However, if he asked me an outright question, I think I would say "Dad will be there waiting for you".

None of us knows what will happen when we die. I don't know what will happen to me, but if there is an afterlife, I know my family will be there for me. I haven't been perfect, who is, but I've always done my best for them.

For the moment, concentrate on getting some help with caring. I'm sure Chris will put another link to the NHS Continuing Healthcare Information. Make sure you are also claiming highest PIP, and get Social Services to give you some practical help, especially if laundry is an issue. There are other sources of help if you need them.
Sorry BB ... cat napping ... no excuses !

CHC / NHS Continuing Healthcare ?

Main thread :

Be prepared to enter a whole new world ... it will appear like a maze at first ... an unmapped minefield later :

https://www.carersuk.org/forum/support- ... inks-32532

Purposely so ... as the word RATIONED is never uttered but ... plain to deduce by most who have trod the path before.
24 minutes Chris, whatever next?!

I can't really say anything, with M at home for 2 weeks I'm not popping into the forum as much as usual.
I can only say that if I were told I only had two years to live, if that, I wouldn't be spending my life 'living every moment to the full'....I'd be bloody TERRIFIED.

I honestly think, myself, it would be beyond cruel to tell someone - anyone! - that they only have two years left to live.

In 'Cancerworld' which is the only 'grim' world I have experience of (so far....), the general rule for the medics is 'you don't tell patients and family what they do not ask'.

My husband asked, and his oncologist told him his opinion (based on his experience of other patients, and general cancer statistics).

But it was ONLY because my husband asked.

I do not think it right to 'impose' that kind of knowledge on other people.It is just TOO terrifying. (And I say that as someone who like BB above, hopes that when we die we get to be reunited with our family!)

As I say, this is only my opinion.

Please, wouldn't it be kinder if YOU helped this poor lad to 'live every moment to the full'....without telling him 'why'??? (And thank goodness this poor lad has you.....)

Kindest wishes at this very distressing time (as in, even more so....), but that is my opinion - that it is not kind to tell him he is now severely life-limited. I would say he has a right NOT to know....
Thank you to everyone for your advice.

I did not relish the thought of telling him and I thought the Doctors should have been the one's that sit down and had a go at that had they been brave enough.

His life is his games on and his dog and he likes to walk a lot. My sister told me today in a flow of tears to let him be and just be there for him that things should not change and things carry on as normal but allow him some more of his wish list. She told me she has a week off work and will keep him for a the week as I was in London at meeting and she took him. To allow me time to go seek support from GP and social works but her advice was very much the same not to tell him just to let him be and take more time with him. so I am take all your advice and I would like to thank you all for that advise.

My sincere thanks everyone.

Gordon, it's a new and difficult journey for all concerned. Take it step by step. We are always here if you need help.
I agree with the advice given. If S was on a similiar position (he has autism and related LD,) I wouldn't tell him as he'd only partially understand and be very frightened. I would keep everything that makes him feel secure the same, but factor in as many treats, days out and fun as possible. I 'd take tons of photos and help him create a book of happy memories- for him to look at on the days he feels worse and for me to look back on in the future and I tell him even more often how much I love him. I would also look at hospice support for the both you. Preferably one that has experience of supporting those with special needs.

Sending you hugs and cyber support. So glad you both have your sister for support.