Eek-just lost it in the hospital

Share information, support and advice on all aspects of caring.
just arrived home from the hospital after being with my dad until gone midnight. I'm not sure what's wrong with me at the moment - fluctuating between crying all the time and being extremely angry. After finishing work I went to see my dad on the ward he's currently on- he was admitted last week with an infection (they still don't know what it is) but coupled with other longstanding illnesses (he's terminally ill) he is very poorly. I can usually cope with all the ups and downs of hospital life but not today. Dad had to wait ten hours alone in a corridor for a Dialysis machine, he's incontinent and was just left sitting in it (nurses to busy to help him and he can't mobilise himself) . After waiting another two hours for a porter who didn't turn up , during which time my dad was in extreme pain, I transferred him to the ward myself on his bed. I told the ward nurse that we needed help to clean him up ( he has been put in an isolation room because of the infection and needs special creams and help to stand etc) - she said they were all to busy and could I do it. Unfortunately having just overheard them say they hoped it would be a quiet shift and they just wanted to relax I imploded. Accused them of being unprofessional and demanded that they help (which to be fair they did). I really don't know what is up with me I have absolutely no patience with anyone and it's destroying the time I spend with dad. I would try and take a break but I don't know how long we have left together and I really feel like if I'm not there he won't get looked after properly. What to do? Any thoughts? I've got to be up shortly for work so had best go to sleep but am feeling very guilty. If you have any suggestions about how I can handle things better they would be most appreciated. Thank you.
Faye, the 'tears and anger' is called 'stress and fear'......and it's PERFECTLY normal in the circumstances. Please don't worry about it. It simply goes with the territory. Don't waste energy trying NOT to be 'tearful and angry', it's a waste of precious energy at this time. Your 'fear and stress' bucket is overflowing - with good reason, and like I say, just 'go with the flow' so to speak.

Don't worry about imploding (or exploding!)(in fact 'exploding' ....ie, your stress snapping OUTWARDS towards others) is much healthier than it 'seething within!). Nurses are there to help ,and that's that. It's their job. I don't mean to be unsympathetic towards them, but taking on board that the relatives of a sick, in fact, dying man will, yes, be 'touchy' (to put it mildly).

I can tell you that I did something similar to you when my terminally ill husband had to be admitted to hospital. The consultant pronounced a DNR (Do Not Resucitate) on him and I simply exploded. I bawled him out in front of his own nurses and told him to get away from my husband and not come near him again!!!!! Honestly, I went ballistic.....

He was actually very 'good' ( I can see in retrospect) and did indeed, walk away (not sulking, just removing himself) so that I could 'compose myself' ....which I did. I even had the presence of mind to turn to the nurses who'd witnessed my outburst and said wryly 'Well, I've made your day at least!' - it must have given them a degree of pleasure to see a Mr God Almighty Consultant bawled out to his face!!!!!

But, of course, what all of them ,consultant and nurses, realised, was that I was 'beyond myself' - my husband could die at any moment, I was terrified, and I was simply stressed out of my skull. (My husband did survive hospital, the DNR was never needed, thank God, and he was discharged home to hospice care, so I had a 'reprieve' if you like)

In your own situation, I do understand how you don't want to leave your father, as you know you are on highly limited time with him, but I do think taking 'mini breaks' is going to be essential. You'll need to 'pace yourself' now, until 'the end comes', whenever that is (and do remember that even the doctors can't know for sure - my husband's GP, when he had come home for hospice care, said to me - he could go in days, or weeks, or months, it's impossible to say) (do remember, too, with cancer, as I think you've said earlier your dad has, am I right?, that the body can 'carry' the cancer for a long time, and still 'keep going' and then, at some point, the co-morbidities that cancer usually causes, ie things that the tumours leak into the bloodstresam, or the pressure on the normal working of the body, just get 'too much' and then the body can give up and collapse very rapidly, sometimes without warning, so do be prepared for that - you can already see how 'vulnerable' he is to infection and so on, with a body under multiple stress.....)

Do try and get out of the hospital, or away from your dad, for short periods and then have 'distractions'. I used to go for a walk round the block, looking at the sky and the trees, or go into shops and so on. It was really 'weird', that time, and it was as if I was in a glass box, and seeing the world through it, not part of it al all, but I knew it was 'doing me good' and 'unplugging' me allowing my internal batteries time to recharge (at least a bit).
Faye, in practical terms, would it be possible for you either to take time off work (eg, compassionate leave, or holiday leave, or even unpaid leave if you can afford to), at least while your father is in hospital? I do appreciate that work can actually be a vital 'distraction' for you, as said above, but if it is only contributing to your stress levels, rather than giving them a diversion, maybe the time is right for prioritising what you have with your dad, rather than your 'normal' life (ie, your working life).???

Have you got a sympathetic manager (not necessarily your line manager) that you could talk to about the possibility? If you are very stressed at work your output might not be very high at the moment anyway?
Faye, do you know how much longer dad is likely to live? Are you prepared for the inevitable, or scared to face it?
I've lost six close relatives in recent years. From my sad experiences, I would say that once you have accepted it, and made a plan of who to phone, what to do etc., and put it in a notebook, you will feel much calmer. It's a very difficult time, I watched four much loved elderly parents gradually decline with dementia, heart, and cancer problems. We cannot change their illness and make them younger or better, but we can make them as comfortable as possible. My mum liked to have the small cartons of fruit juice when she was in hospital, so she could have a drink when she wanted, hospitals are very hot and dry.
Is there any other family member or friend who dad might like to see?
Nurses are paid to do their job, not sit around, so you don't need to apologise to them, YOU are the one deserving an apology. I would also complain to the CEO and also the Care Quality Commission. Our elderly folk have paid into National Insurance since 1948, and often done National Service to fight for our country too. They deserve the best.
(((Hugs))), Faye. I am not surprised you lost it, anyone would. How a nurse can think it is acceptable to leave an old frail man in that condition is beyond me. I have "lost it" several times at hospital and, to be honest, I think my mum got better treatment as a result. You should not have to do it, but sometimes to get the best care for your loved one, it seems necessary.

I don't know your situation and appreciate that you will want to spend as much time as possible with your dad. But is there any way you can get breaks - Macmillan nurses or similar? You do need to pace yourself at this extremely difficult time.

Hope that you get some answers soon, and some support for you. In the meantime, we are here.

Take care, Anne x
Hi Faye,

Your reaction to what happened sounds completely understandable. You are dealing with a very stressful and emotional situation with your Dad, and seeing him in pain and not getting the help you should be able to expect from hospital staff, is bound to affect you - we all reach the end of our tether sometimes.

I would echo Jenny and Anne's comments - be kind to yourself and do look after yourself as much as you can. I know that you want to be there for your Dad, but keeping yourself healthy (mentally as well as physically) is vital so that you can be there for your Dad. Burning out is a real danger in these circumstances and I'm sure your Dad wouldn't want that for you. You sound as if you are being a wonderful, supportive and loving daughter, so don't feel guilty about taking a little time out to keep yourself on balance. I find even small things make a difference - a coffee with a friend, a walk, a nice hot bath - anything that lets you take a deep breath and relax for even a short time. I don't know what your employer is like, but could you negotiate some time off or a temporary reduction of hours on compassionate grounds? It might be worth thinking about.

Take care of yourself,

Alison