So I apologise in advance because this is more than likely going to be a very long post.
I’m currently 26 and caring for my father. My father’s got a long list of health problems which all stem down to PAD. 12 years ago he had a quadruple bypass and then shortly after suffered from some pretty bad infections which left him in hospital for about 8 months…he recovered quite well and then 4 years ago we rushed him in for an emergency above knee amputation of one of his legs. Once again a few infections later and some corrective surgery he recovered relatively well however had constant phantom pain and due to his level of pain was unable to wear his prosthetic leg. He managed to cope between his wheelchair and his crutches however last February I came home from a weekend away and had to rush him into hospital again for another emergency amputation of his second leg…
This is where the problems started but I’ll try and summerize or we’ll be here all day. He crashed on the operating table and ended up on life support for 8 weeks during this time he also had pneumonia and caught a endocarditis due to a nurse not wearing gloves whilst changing an IV. At which point we got told his survival rate wasn’t looking good and we’d probably have weeks. We got numerous phonecalls saying to head up and say goodbye as well as watching his heart beat drop below 15bpm.
After 8 weeks he started to recover although he was suffering from severe delirium where he thought he was being cloned etc…
Eventually this faded and he got transferred out of ICU and a few weeks later upon his request moved to a hospital much closer to home.
Whilst at the nearer hospital he was shoved into hospital rooms so small he couldn’t even transfer from his bed to his wheelchair, he underwent no physiotherapy, he caught numerous infections some of which the nurses didn’t even notice and we had to argue for him to receive the correct treatment, medication was missed, he was verbally and physically assaulted by a nurse in the night which luckily we were on the phone to him at the time, a walking stick was left at the end of the bed as a joke (double amputee) the list goes on and on…
Eventually we get him home and after a few trips back in and out it calms down around this time we got told he wouldnt make it past Christmas.
A few weeks later we rush him to hospital with suspected sepsis. Whilst in a&e he starts suffering from severe delirium again and after 5 weeks of tests and finding him on the floor in the pitch black of a toilet after 45 mins arguing with what felt like every nurse and doctor around and thinking the last conversation I’ll ever have with my father was forcing him into an ambulance whilst he begged me not to he recovered once again…
I’ll cut the rest down… In short the infections came back one leg turned necrotic and one the bone came through the end of the stump, resulting in further surgery… Which we did not expect him to make it through but he did…
We also by this point had a brain damage prognosis saying he would not live past Feb.
Skip til now and apart from numerous infections a dodgy heart and the odd spell of delirium he is stable.
However, this has obviously been a massive amount of stress, suffering and I’m exhausted.
I wash him, cook for him, take him to every doctors/hospital appointment, collect his prescriptions and all the daily tasks that come with caring for a double amputee. He never says thank you, constantly demands things and just shoves his coffee cup at ms when he wants a drink.
I’ve been to see a counselor thinking this would help. It hasn’t.
I’ve officially reached the burnout point.
I can’t get out of bed nor do I really want to. It’s effected my job, my relationship my entire life.
(My mum still lives with us too however she cared for him for much longer prior to the amputations and he will not accept help from her she tries her best to help me and him but it isn’t easy for her, also he will not accept any external help from carers etc because he thinks he can still do everything himself, he obviously can’t)
I just really don’t know what to do. I know it sounds terrible but none of us expected this to go on for this long.
Oh he’s also had a couple of TIAs so talking to him and telling him to lay off or ask somebody else for help occasionally or discussing it with him is pointless as he forgets within a day or two.
Please any advice to how to cope with this long term or how to balance any kind of life/care/work balance would be appreciated (currently in full time work on antisocial shift patterns too)