My best friend, the person I care for is fighting for his life in hospital at the moment and I feel so helpless as we wait…wait in the hope he will survive life threatening pneumonia but have been told to prepare for the worst. I have been caring for him for over 17 years. I am unable to sleep, feel run down and worn out but I am there in hospital everyday so I am there for him. I so want to help him, but I can’t because the care he needs is beyond my capabilities. We are all waiting right now in the hope he will pull through, but that hope is slim. He is so frail they have withdrawn all other options to try and save him except antibiotics, high powered oxygen and fluids.
My world has been completely turned upside down and I don’t know how I am going to cope if the worst happens. I have spent 17 years of my life dedicated to helping him.
Sorry for venting on here. I feel so lost without him here at home even though I see him everyday. He is so worn out and run down even after his 5 day course of IV antibiotics and all we have been told is we have to wait and see if they work.
I am out of tears, I have given up trying to sleep. I am trying to remain positive and focused on getting him better but feel I am fighting a losing battle. I don’t want the doctors to give up on him but feel they will be left with no choice.
Thank you for reading my post. I don’t expect any replies, but thanks anyway.
I’m so sorry for your situation.
At the moment there is nothing more you can do for your friend.
However if he pulls through he is going to need you more than ever before.
Currently you are a wreck.
Go and see your GP and get something to help you relax and sleep. Your body needs this.
My GP gave me Amitryptilene in a similar situation, it really helped.
If the worst happens, you will survive to live a different life.
I met my husband when I was 16. Married at 19, 34 happy years despite many problems, we worked together, played together. Then he died in his sleep from a massive heart attack.
I found a book called Starting Again by Sarah Litvinoff, written with divorcees in mind, but so useful for me and easy to read.
This forum is for former, as well as current carers.
You have a long road ahead of you and need to prepare.
Are you eating properly?
I have just started eating again after losing one and a half stone in weight. I am eating one meal a day as this is all I can stomach at the moment.
Exercise. Ride a bike, lift weights, run, whatever. The endorphins and sense of satisfaction can really lift your mood.
For me even if the results are negligible I feel like I’m making progress and doing something constructive with my time.
Tom, I didn’t feel like eating either, but everything seems worse at 3am when you wake up because you are hungry. If you don’t want a proper meal, thin just have snacks you can nibble at that don’t need any preparation.
I found by the time I’d made the effort of cooking for one, i’d gone off whatever it was I had cooked. It was easier to go to the local garden centre where they had several good casserole options instead!
I had neither strength nor inclination to exercise as I was mentally and physically exhausted.
Tom
same as everyone has said and do go to your Dr.
Appetites wane in such circumstances and it is important to get nutrients on board.
Is there a staff/public hospital food canteen in the hospital? try having a meal or snack in there, you are not eating home alone, that might help. You won’t be any good to him if you collapse from exhaustion, dehydration and starvation. You have to care for yourself and look after yourself too - that is also a part of caring for him, keeping yourself in a fit state to do so. (When mother goes into hospital I seem to live on crisps and milk for a few days as I couldn’t face eating and then BAM! I’m useless and have to get nutrients into me)
You are there with him, that will mean a lot to him. He will know you are all doing all that you can for him and wanting him recovered. It is hard, you do feel powerless, it is tough and cruel but you can manage your reaction to it by having a positive mind because of what you are able to do for him.
Your positives today - you have support here, you are visiting and caring at his bedside, he knows you are doing all you can.
Try some soothing classical music it is like a balm for the soul.
Have a shower when you get back home to relax and refresh you.
Do some puzzles or reading and house chores for a bit of normality and a brain rest, something that absorbs your mind in the task.
Find some resilience in the face of adversity, tell yourself of the good you are doing, you are being there for him, a constant support and strength to him and feel good about that rather than focusing on the dread which is being so harmfully negative to you - easy for me to say and so hard for you to do. My dads end stage cancer I focused on the good and one moment and day at a time, so tough to do it, I’m a daddy’s girl through and through, my heart was broken, but had to be strong for him.
I hope he pulls through, but if not, you will be alright, you will grieve and sleep and get your strength back and it won’t be so bleak, you will be ok.
Thank you all for your replies.
Today has been a good day for him as he has been managing very small conversations, taking into consideration when he tried to speak he is using all his energy to do this, and it exhausts him afterwards. His delirium seems to be subsiding and he has been coughing up alot of phlegm but can’t spit it out because they aren’t allowing him to take anything into his mouth to prevent aspiration of the lungs. The doctor said there is some encouraging signs but unfortunately he still has a fever which they are concerned about and have restarted the antibiotics. The doctor said we are no where near out of this yet, it is pretty much still the same situation.
I have took two hours out for myself this afternoon so he could get some sleep and so I can gather my thoughts.
Next week Carers Allowance suspends and his PIP does as well as he will have been in hospital 28 days. I am hoping the work coach will be lenient as this will only be temporary until my friend hopefully leaves hospital and I want to continue doing what I am doing and that is being there for him. I really hope he pulls through this, but I still have that nagging thought the doctor put into my head that it can still go either way.
I need a break after this which ever way this goes at some point.
A break would do you the world of good.
Just to get away somewhere you can sleep, sleep, and sleep some more.
Maybe a Premier Inn somewhere?
That’s good news and glad you stepped out for a break, he’s in the best place and going out for a breather is allowed.
Stepping out for a break does give the patient a rest too, they can relax and sleep and not feel like they have to make an effort even if they aren’t able to make an effort.
I hope he makes recovery.
This just gets worse.
My friend has been diagnosed with secondary pneumonia and it is worse than the original pneumonia. The doctors have said they are using the strongest antibiotics they have and will get imaginative if they don’t work. The pneumonia is on both lungs and he is struggling to breath on high powered oxygen. His oxygen levels are at 97% which is normal and on the oxygen machine he is down to 75%. His breathing rate went from 20 to 49 at rest yesterday. The chest doctor yesterday said that if they exhaust the antibiotics they will have to make him comfortable unless the ward doctors can come up with something.
He looks so weak and frail now with very little energy left.
Sorry to hear that Tom.
My thoughts are with you.
Tom, you have my best wishes. Keep venting on here by all means, if it helps.
Maybe take each day in bite-size chunks? Just so it all doesn’t seem so enormous and unmanageable.
Be kind to yourself.
Tom, how is your friend now?