Heavy heart

My Dad has been in hospital for 10 months following a catostrophic SAH. We were told he probably wouldn't survive at the begining and the docs were very surprised when he started to breath on his own (we were sat waiting for them to come and announce that they were going to remove his breathing apparatus to see if he stayed with us or crept away quietly but typical of my dad he beat them to it!) he was in a coma for 3 weeks.

When he came out of it he had no movement in his arms or legs and was unable to speak. After a while he had said the odd word, just very occasionally. He began to move his arms and has a pretty good grip in both hands, however he hasn't progressed since.

He had started to eat soft food and had continued with this for some time but about 2 months ago began to store his food in his mouth. It turned out he had developed a problem swallowing and is now fed via a peg into his tummy

I must add we ( me, my brother and my Nana, Dads 90 year old mum) have very little influence over what happens to dad as he is remarried and his wife is next of kin ( she really does like using this term!)

It was looking like dad may return home (would have required carers visiting a few times a day & lots of adaptations) but once he stopped swallowing, he had a batch of tests and it was discovered not only was he unable to swallow, he has a problem with his lungs (probably caused as a result of a feeding tube inserted incorrectly into his lung and not only filling his lung with liquid feed, it was also perforated, but as he couldn't speak, he was unable to tell anyone)

We have also been told he now has the onset of Parkinson's, caused by the SAH and diabetes.

He has now been moved to a residential care home as his condition needs more care than can be given at home. This is his absolute worst nightmare. He had his own business, was such a physical person and a bit rum with it!

I cannot get my head round that this is where he has ended up, I walked in last night and it felt so wrong, his eyes tell me that he is living the nightmare he never wanted.

I am finding it really difficult to accept, not for me but for him because he repeatedly said if ever he was in a situation where he couldn't do things for himself (his favourite phrase was " wipe my own arse!") he would rather not be "here"

I feel like I am letting him down all the time, I look into his eyes and I can see him saying " I don't want this, I told you I didn't "

Sorry if this sounds like self pity, but him being in a care home has really got to me as I know he would not want it this way. I know we have little choice but when I know it is against what he ever wanted, how do we deal with this?

15 Replies

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  • i am so very sorry to hear that, and sorry to hear that there's not much you cam do in terms of his situation, but we are here for you and i am sorry i have no advice i can offer you that would help:(

    but you have built up friends here and we care deeply. and are here if you need us xx

  • Thanks So much, you are always a great support to everyone on here, and you talk a lot of sense xx I feel it's the only place I can let it all out! Nobody is all that interested unless they have been directly affected by something like his themselves and in most cases you cant really blame them, it's difficult to understand fully unless you are experiencing a situation x

  • I'm with you H. You know that.

    xxx Mumxxx

  • My heart goes out to you, you have waited and hoped all this time, and been so strong for your Dad. There are no words really, just that Im sure everyone here sends their love and support to you at such a difficult time.

    Very best wishes, Molly

  • i agree ;}

  • Thank you Molly,you have hit the nail on the head so to speak. Best wishes to you too

  • It must be so hard I cannot put myself in your shoes so can only guess what you are all going through, I remember in the early part of my recovery telling my son I didn't want to be disabled like it was going to be a choice and my youngest daughter has already told me she would never want to go through what she witnessed with me or be stuck in a care home and those thoughts are so difficult to deal with, just remember we are all here to support you at all times, look after yourself x

  • What can anyone say that has not been said? I am probably about your dad's age and I can certainly empathise with his original statements. You are a caring daughter, he has a supportive family and believe me that can mean a lot in a situation like this.

    Sometimes in periods of crisis people are supportive but then they drift away leaving the both the carer and the cared for on their own. I am sure this will not happen in your family and, as previously posted, all our love and thoughts are with you.

  • I am really sorry to hear this, I want to ask, is there any way he can communicate - eg typing, pointing at words/letters, that can at least make his situation a bit more bearable? Is he having SLT or any other therapy? Even if the situation appears quite bleak at the moment there must be some strategies to make his life a bit more comfortable, so I hope he is getting support in this area. Even if you're not next of kin it's obvious you should have a voice in what goes on.

    I do hope his condition becomes a bit more manageable in time, and that you all learn to cope with it a bit better.

    Paula

  • We have tried to get him to write,he seems to understand but can only manage a couple of letters before he gets fed up with it. We took my iPad to see if he could type but he really wasn't interested. I think it's the not knowing his state of mind that is now the most upsetting thing. I don't know if he is able to think the way he did, if so, I know he will be very unhappy or if his brain is so different now that he is ok in his own world. I don't get that impression though, his eyes are what tell me he is completely fed up, but I just do not know. He does smile when we crack a joke and he nods and shakes his head but its hard to know if he fully understands without him speaking. He has always been quite cheeky and he does stick two fingers up when my brother and i are leaving and has a naughty grin on his face when we are leaving! I know when my mum had a SAH too, she didn't make a great deal of sense in the first couple of months and that is how we knew her state of mind at the time, she gradually started to make more and more sense and that is how we judged that she was getting better.

    The next of kin situation is awkward, hospitals will not give us much info unless we have a meeting with the next of kin present but to be honest she makes things awkward without actually being obvious, one of the first things she came out with after it happened was " I am next of kin" and since that day we have struggled to get info from each hospital he has been in. We just get told that we need to speak to his wife. It's really tricky as we don't want to fall out with her but she is a very distant person and seems to have nothing good to say about most people, which makes you wonder what she is saying about us. It is difficult to put into words properly how it is, I don't want to fall out with her for my dads sake and also because if we do then she will probably make it impossible for us to get any information.

    Before he was moved he was having physio and speech therapy but they said he reached a point where he was no longer progressing. I am told this will continue once he has settled in at the care home.

    I think we have coped pretty well considering both our parents have had a SAH in less than 18 months of each other and if I thought my dad was happyish in his own little world then I would gain some comfort from this, it's the not knowing of how he feels that is the very difficult thing. Thanks so much for your reply Paula, best wishes, Helen x

  • it has all been said above,i can only imagine what you are going through.i really wish you an your dad well,stay strong i know it is obvious,but they are the only words i comprehend,stay strong and god bless xxx

  • Thanks Razi, I honestly think you are all amazing and appreciate you support so much, especially since most people on here have experienced some kind of brain injury and you are all supporting others xx

  • I don't know you very well so I hope you don't mind me leaving a response. I just wanted to say that from the way you speak about you father, I am sure he wouldn't want you to feel guilt. I know that it's easy to say that but I'm sure he realises that you love him and only want whatever is best for him. Try not to blame yourself for such a difficult situation, I am sure just knowing that you care means a great deal to him.

    I hope things improve for you and your parents.

  • Thats so kind of you to say Pumpkin (that's what I call my little boy!) I think the reason it constantly plays on my mind is because he always used to say if he ever was in a position where others had to care for him and he had no quality of life then he would rather not be here,if you know what I mean. I know he had really strong feelings about it and its just so cruel that that is how he is now. He has worked his butt off all his life and had only just cut his hours to 4 days, with a view to eventually retiring ( not sure if he would had fully retired if this hadn't happened!)

    Wish you all the best & thanks again for your reply x

  • My dad became very ill with a lung problem,its funny,well not that funny how because he had stopped smoking some 40 years pry,this was blamed for his problem,which annoyed me very much, because he worked as a mechanic on Esso road tankers for 40 odd years, and im no expert, but in no way helped.He had to retire early.

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