I am new to the forum even though I have been a member for some time. I was not sure which catergory I could put forward my post, so here I am.
This is not about my health directly but about my adult sibling who lives with me. He recently had a cardiac arrest (I had to perform CPR) and he has learning disability and is autistic. I am now nervous about his hospital stay and recovery time and vice versa.
He cannot communicate due to intubation/respirator therefore communication is difficult (not even Makaton). Anyone out there that had or has similar experience. Any suggestions and or advice would be appreciated.
I have also given the medical team as much information as I can including the medical passport for adults with special needs and key worker details.
First of all, you did so well to perform CPR on your sibling - no one knows how they will respond in such an emergency and whether they would freeze or be able to act.
Every hospital should have a learning disability nurse/champion - so it’s worth tracking them down asap to advocate for your brother in hospital and ensure his special needs are taken into account.
Does your brother understand speech? If so laminated yes and no cards would be ideal. He could then eye point (by looking) or if he is able to move his hand/arm point to them. If he understands pictures or symbols these could be used or words written on flashcards. As he must be feeling very unwell and in a strange place, the easiest form of communication is needed.
My brother understands speech so this method should be good. It is what he does when he gets his eyes tested. Different nurses different shifts makes it difficult for him. Yes, no one has actually introduce themselves as learning disability nurse/champion. So I will get onto that.
I never heard of Dynavox. Just Googled it, amazing. I will investigate that further
This has been so helpful. It is just that I got the impression the hospital is not used to adults with special needs in particular autism. Especially when he was just first admitted and I was waiting.
Hi Erolly,
your first impressions are right - hospitals aren’t used to treating people with learning disabilities and autism. It’s good the you have been able to give the LD nurse more info about your brother. Make sure you keep in touch with the ward as you know your brother better than anyone.
I will indeed keep in touch with the ward, even more so now. After my last visit to him I told my sister my concerns. Her intentions was to visit our brother the following day. After phoning the hospital to make an appointment she was told he has MRSA, (I guess being being untubated and being on ventilator has its own risks). That is how I got to this forum.
Our mother was a SRN (state registered nurse) for over thirty years, now deceased but cleaniness and observation was her thing, home and work. I guess a lot has changed from her time but not the basics. She retired early for two reasons. To enjoy the rest of her life and her back (lifting patients etc). Even then, there was less staff who were doing far more work.
My concerns are that my brother is in the best position to recover and breath on his own without any more infections. It is one thing to physically recover but it is the psychological impact of the collapse, being in a hospital and the experience. It will take much longer.
My brother has only just turned 50 this year and has been in my care officially since 2002.
So I commend you in your caring role Melly1. It is not easy.
you have been supporting your brother for a long time. Did he attend any activities before the pandemic?
I totally agree re the pyschological aspects.
S has used a Dynavox since he was 9, and his software is very personalised just for him. There are now lots of options re communication apps available. S’s was assessed and is funded by the NHS. You have a lot to deal with at the moment, but when you have less to deal with, if you want more info - let me know.
I am very glad they are allowing you to visit your brother. Have you heard of social stories? You could make your brother a simple book about what is happening and that when he gets better he will go home again. If you were able to laminate it then your sister could read it to him too when she visits.
Yes, prior to the pandemic and recently with reduced services he attended an autism service centre.
He did a variety of activities there. You have just reminded me of social stories which what they did if he was to have respite or to go away on breaks away. It was so useful.
Thanks again I will let his keyworker know so they can do something and laminate it.
Already had a talk with the sister attending him today and she gets it and is puting everything in her notes. I did not have to explain to her about my brothers disability in depth. She was present when I visited my brother with my sister last week. My brother smiled and was moving his hands and legs .
Just an update.
My brother is improving. He had a pacemaker fitted. He is a little tired and weak but I am not surprised with all that has happened to him. I am so proud of him considering it has been scary (new environment, different people etc). He is eating, well the consistency is like baby food but you have to start somewhere.
He still barely whispers. So I will contact the speech and language therapist and enquire at which point they may have to investigate his throat. I guess everyone is different when it comes their voice recovery but it would be nice to know the rough timescale.
They have supplied in his ward laminated visual aids ( which I have seen) which is great news.
I know you’ve been a member for a while, so you might already know about our weekly care for a cuppa meetups. We hold them every Monday afternoon at 3pm for an hour. If you haven’t been to one before you might want to come along and join us. Here’s the link. Many of our members have said how useful they found them and its a nice way to take a bit of time out for yourself and chat to other carers.
that is such good news. He has done so well to cope with everything. The fact he is eating well is a good sign. The speech therapist will be able to advise on his eating and swallowing too. Is he able to drink ordinary drinks or are the ward staff thickening his drinks at the moment? That’s great that the ward have laminated visual aids to use with him. Is there a time frame for him coming home?
The nurses are thickening his drink at the moment. However he did have the odd biscuit the other day.
That is an improvement and now he is been transferred to a hospital nearer home. The clinical team are happy with his progress most importantly his heart.
Now the next step is nutrition, walking, talking and adjusting.
Well my brother contacted covid early this month and he is asymptomatic. The fact that he had been there for some time did not make it easier for me. He was admitted without covid. I kind of lost it and sent an email (in 2 parts after talking to my sister) to PALS.
I am isolating and so is he until the 14th Dec (personaly I think it is longer)
but he is BACK HOME, no transfer to another hospital. He is smiling and laughing and walking ( a bit of a waddle). Personally I am glad he is alive. He wants to do everything but he has to pace himself and take time.
I actually prefer to stay indoors for the remainder of the year and have no reason to go out unless it is an emergency. Which is what we have been doing since March.
I hope everyone can get the help they need and have a far better new year.
Carers UK and the forum have neen invaluable.