Please help ! How do I get my life back?

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) :frowning: :frowning: :frowning: :frowning:

Hi Cyrcd … welcome to the forum.

A few questions before we delve further.

What outside support is your father receiving ?

A guide to outside help detailing what’s available , and who provides it :

Needs / carer assessments uo-to-date through your LA ?

Housing … owned by ? … occupied by ?

If tenanted , social or b.t.l. ?

Father … assets … in excess of £ 23,000 ?

CHC / NHS Continuing Healthcare … considered / applied for / refused ?

Yourself … Carers Allowance ? … any other benefits ?

Enough for you to ponder on … feel free to bounce anything off us here on the forum.

Hi Cjrcd,
welcome to the forum. What an absolutely terrible time your Dad has had he must have a strong drive to survive. You and your Mum have had a lot to deal with, supporting him.

It boils down to you continuing to care for your Dad; juggling work and caring or your Dad accepting support from paid care workers.

If your Dad doesn’t realise how much help he needs, you might have to let him struggle for awhile, so he appreciates how much help he needs. If you think he wont remember how much help he needs from one day to the next, you could arrange for a Needs assessment (make sure the social worker knows the support you currently you provide and that you are no longer going to be able to do this.) Once the care workers arrive, if no one else is available he will need to struggle or accept their help.

There is info on Needs assessments here Needs assessment | Carers UK

One more thing, if your Dad hasn’t had rehab physio - then in many areas he/you can self refer, it this isn’t available in your area, then the GP can refer him. Physio input, may well increase his ability to do some of the tasks for himself.


Bump, Chris.

You could always mention a care home to him. That might work. Either he accepts outside help or he is placed into a good quality care home. This is your only other option at this point. The NHS have useful guides on care services and needs assessments.

Thanks for your replies!!

Okay so firstly we don’t really receive any outside help, when he was first discharged from the hospital we had District nurses out every day to dress his wounds etc but anytime we needed further care like spotting infection etc they were totally useless (no offence to any DN’s just our personal experiences)

We’ve had quite a lot of issues with Occupational health ie not bed issued as promised and we had to argue to high heavens to get this. Obviously we have lost quite a lot of faith in these systems after so many issues…

House is owned by my mother all in her name and mortgage free so that helps. My father has zero assets.

Sorry please could you explain what CHC/continued health care etc?

He’s currently been referred back to a consultant who deals with his leg wound etc but he has been discharged from all other consultants as there’s nothing more they can do but with so many different consultants for different issues no discussion on next steps etc…

I’m not able to claim any carers allowence as working full time and earning over the threshold. Father claims disability allowence but that’s it.

I’ve tried to back off on doing the simple things in the past so he acknowledges how much care he requires yet this did not work and in the end fell back into assisting with everything once again. The issue is he plays up for doctors/HC workers in general and will act like he can do everything and needs no help no matter what we say…he’s very convincing!!

To be quite honest after 18 months since the last amputation I think it’s too late for physio now. We try and get him to do small exercises but he struggles and due to the high level of pain and painkillers he’s either too sore or asleep :see_no_evil:

Unfortunately a care home is out of the question. It would literally be his worst nightmare and until he gets to a level where he doesn’t understand I don’t think I could do that to him. I’ve seen amazing care homes and some not so good and unfortunately even the best I know he would just hate.


Sorry please could you explain what CHC/continued health care etc?

Link to the main thread posted for precisely that purpose.

Why not start with the video from Professor Luke Clements ?


When your father was last discharged , was there no care plan ???

If not , he should never had been discharged !

Being discharged from hospital - NHS

Outside help … link provided in my first reply … time to read and then call in the calvary ???

A little research and you’ll be armed with information which will help you " Get your life back. "

We can only do so much … the rest is down to you.

You need to get outside carers from the local authority, or find a local authority -paid care home for your father. You are at breaking point, something your father doesn’t accept or doesn’t understand. Even with four carer visits a day, I found it draining and I wasn’t working. I don’t see any magic wand to fix your situation. Perhaps your father will grow to accept in home carers once he knows the alternative. I think you should contact the LA and tell them you can’t cope due to burn out and am unable to look after him any more alone.

You might find this website helpful It contains useful details on all British care homes plus handy advice and tips on to choose a care home.

Off the top of my head some advice:

Ask around about care homes. Perhaps the local council can give you some names? Ring up and make a appointment to view the place with your father in tow. Make a list of questions to ask during your visit. Find out as much as possible. Take a pen to make notes as well. Read inspection reports but remember they don’t tell you everything.

That website is a starting point. It is also a great resource. When I was looking for care homes a year ago, I found it helpful.