Please Underwood, do not make assumptions about other posters' experience, especially beginning "I am quite sure"
Your posts are being read carefully and responded to thoughtfully by TPers who are trying to understand and offer support and who are fully aware that we can't have the full picture of your family's situation.
All of us wish for the best outcome for all of your family.
Point taken, and my sincere appolgies if I have offended anyone. It was not my intention.
I originally started this post with long story cut short. I'll expand a little.
May this year, my father was sleeping quite a bit and had memory problems, he could hold a conversation but some words escaped him and he substituted them for others. He was mobile and active.
June he had a fall, had blood and urine infection causing dilerium. As of mid September there was no way he could be let out of hospital as he was deemed medically unfit due to the delirium. Hospital stopped his exercises and he has not exercised since, cognitive state has deteriorated. Not exercising he was put on laxatives, which gave him no control over his bowels and this distressed him. Catheter was kept in, despite delirium, and he was deemed incontinent, even though every time he wants a pee, he tells the nurses. He is told he has a catheter - This upsets him!
SS basically told me he was moved into the care home as he was bed blocking. NO exercise, catheter and laxatives. Exercise is over and above general care and would cost more - I am not sure if my family even realise this. As we have been told he'll never walk again, and then we are told he may.
He has never been diagnosed with dementia, or can they even agree on what dementia he may have and we are the only ones who ever have conversations with him. Everyone else says he is a vegetable.
My father tells my husband and I he is in Hell, I said to him Dad you are somewhere between sleep and awake, why don't you try and get some sleep. 'That's just it xxmexx I'm not, I'm in hell, my mind is all over the place and I can't stop it. On the same day he asked me to be quiet as the nurses were talking about him' They're going to do something with me xx me xx and I need to know exactly what it is, so I can say no' - It turned out they were discussing his move to a care home 3 days later he was admitted.
We have visited, he is deflated, lost and begging us to get him out. 'I shouldn't be here'. As soon as we say we can't he cuts out into his own little world, I will say come on Dad we've come a long way to see you. He gently says xxmexx will you please go, you've let me down. When we were asked to leave a quiet room so that a meeting could take place, he put his feet out of the wheelchair to try and stop us pushing him into the communal lounge. 'I don't want to be here take me away to xxxx. I can't Dad, Then ****** off and just leave me alone.
He is never nasty, frightened yes, unsure yes, looking lost and abandoned yes. Does he remember conversations yes. 4 weeks ago he asked me to leave after telling me he just wanted to give up as there was no point. We left, but I told my husband I couldn't leave him so depressed. We went back 20 minutes later he looked at me and said xxmexx I asked you to go.
So he has short term memory. But our input is not allowed no one has conversations with my father. And as we are the only ones we are liars.
Am I frustrated?, yes i am, if I come over harshly and critical of advice I am sorry. But you have to understand, all we are getting from the powers that be are what's in your father's interest. My mothers health dictates what my father's best interests are. All proceedures which by law should be followed have not been. No one is to blame though! we have yes but your mother can't manage. We say that has nothing to do with my father, your patient is my father, yes but your mother is not well etc. etc.
BUT we also know that my father is a fighter and this time it is he who needs help. He has told us he can't do it by himself.
He is aware of the family rift, he has told us! ' Let them play their games'.
5 weeks ago he started talking and I tried to say something 'xx me xx please don't interject, it takes so much energy to talk like this' he proceeded for another 5 minutes and was exhausted.
So maybe I headed my thread wrongly, this forum is a world of experience all in one place, the doctors do nt know what dementia he has, perhaps some of you may have had experience with this form.
Once again if any of my posts have caused offence, I am genuinely sorry.