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Don't know what to do

Discussion in 'End of life care' started by Puddleduck, Jul 4, 2015.

  1. Puddleduck

    Puddleduck Registered User

    Jul 25, 2012

    This is my first post although I have been reading the forum for a long time. I know no-one can tell me what to do, but I just wondered whether anyone could offer me some advice?

    Dad is in hospital having broken his hip in a fall. Before the fall, he was still very mobile although he had had to go into a care home. However, since the partial hip replacement two weeks ago he hasn't left his bed. The physios have had no luck with rehabilitation. Dad has refused all food and drink for about ten days and is having artificial rehydration. He can no longer speak and drifts in and out of consciouness. A doctor has told mum it is probable that we are now reaching the end of dad's life. This has all happened so quickly - a massive deterioration since January. It is awful - he is now so thin and also has delirium. I can't bear seeing him like this, or seeing mum's distress.

    My problem is that I am an only child and I live a very long way away from my parents - seven hours by train. Obviously, no one can tell us how long dad has - the doctor has mentioned a couple of weeks. I am with him and mum now but just don't know what to do. I am terrified that if I go home he will die and I also really don't want to leave mum on her own. Mum has told me to go home after the weekend - she knows I have work commitments and has said I can't stay for what could be weeks. I just don't know what to do. If he deteriorates, I can't get back quickly. I hate being so far away from them. Has anyone else been in a similar situation? If so, how did you manage?

    Thank you.
  2. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    Could you speak to your boss and ask about your company or organisation policy for emergency or compassionate leave ? Mine were very generous when the crisis came with a mix of paid/unpaid leave/my annual leave. Is there any way you could do at least some work remotely?

    If you already know they're not likely to be sympathetic, talk to your GP. I believe you can be signed off because of stress/anxiety and this is surely the most stressful situation most of us will ever face. If you're not fit to work because of worry, it won't help anyone for you to be there.
  3. Puddleduck

    Puddleduck Registered User

    Jul 25, 2012
    Thank you - that is a good idea. The problem is my work is in University teaching and there isn't really anyone else to cover my course - which leaves students in the lurch... So, I am worried my employer's won't be that flexible. But, as you say, if I am not fit to work, I won't be much use to them. Thanks again - I will see what they say.

  4. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    I think you'd feel dreadful if you did go home in the next couple of weeks and the doctor's estimate proved to be correct. You can always rethink whether you stay any longer after that initial 2 weeks.

    We had a slightly similar family experience ... and all our old "must's" and deadlines disappeared because the new priority just didn't allow space for anything else.
  5. marionq

    marionq Registered User

    Apr 24, 2013
    If your Dad does die then there will be several weeks of admin and other duties before the funeral. If you take several weeks off work now waiting for the event you will find yourself having taken a month or more off work. Can you and your employer handle that? This is not an easy time in your family life but you may have to be practical.
  6. Puddleduck

    Puddleduck Registered User

    Jul 25, 2012
    I hadn't even considered that. Thanks - I suppose I will just have to talk to them about it all.

    Social Services and our GP have been totally useless throughout this horrible illness. The only support we have had has been from AS. And now, right at the end, we have to juggle practical matters when we just want to be caring for dad. It feels brutal.

  7. Blackcat20

    Blackcat20 Registered User

    Dec 4, 2012
    #7 Blackcat20, Jul 5, 2015
    Last edited: Jul 5, 2015
    Hi Puddleduck,

    I am so sorry to hear of your situation, and can understand what you are going through as I have been in almost exactly the same situation myself. I am an only child and also a university lecturer, and for most of my career have lived 250 miles away from my elderly parents, both of whom are sadly now dead (Dad of cancer in 2004 and Mum of Alzheimer's in 2014). I too had to take time off work (at a very busy point in the term in both cases) when they reached the end of life stage, and in the case of my mum last year the situation was similar to yours, in that she was in hospital with severe dehydration, had not eaten for about 10 days and was barely drinking (although still conscious and able to respond until the day she died). I had moved her to a care home close to me for the last year of her life and so in her case I no longer had the long journey to think about, but in fact the key issues were still the same - should I still try to go in to work, as I did not want to let my students/colleagues down, or be with her in hospital in her final days.

    I think that when you are in the situation you describe, the real priorities of life reassert themselves and although work/students are important in normal circumstances, you need to put yourself, your dad and your mum first now. You only have one chance to be there for your dad at this crucial time, and for your mum too. You should be able to apply for compassionate leave (all four universities I have worked in have offered this), and it is also likely that you can arrange to do some work remotely, if you are feel up to it. If your dad is stable for a bit, perhaps you could provide some teaching materials via your institution's virtual learning environment? Personally I did manage to keep up with some work during my mum's last few days (e.g I did exam marking by her bedside when she was asleep), but there was no way I could have been at work and actually teaching or attending meetings, as I was just too exhausted and worried.

    One thing I would add, too, is that doctors can't always give an accurate estimate of timescales, as with both my parents the final stage came much faster than expected. In the case of my mum, I was told by her consultant she would probably survive for 2-3 weeks, but in fact she passed away that same evening. With my dad, I had been told he was stable and I was preparing for the 6-hour journey home so I could get back to work for a bit (it was the first day of the teaching year), but he deteriorated quickly and I decided to stay. He died 17 hours later, and I was at his bedside all that time. If I had gone home, I would truly have regretted it.

    I think that you must go with your heart, and do what is best for you and your family so that you will not have regrets later. None of us are indispensable at work, and our institutions do have to find cover for us if we are not able to teach. If you are still actually teaching over the summer, maybe there is a colleague/postgraduate student who could fill in for you for a bit? I would talk to your HoD or to HR, let them know what your situation is and see what options of taking leave are available. They will no doubt have met this before (perhaps they have even been there themselves), and will also be concerned about you and how you are coping in this very difficult situation. Hopefully you will be able to find a way forward which enables you to be with your family, and will lessen the pressure on you. Whatever you decide, my heart goes out to you and I hope that everything goes as well as it can for all of your family.
  8. Puddleduck

    Puddleduck Registered User

    Jul 25, 2012
    Thank you so much for this response - it really helped. I think you are absolutely right. My parents have to be my top priority at the moment. I will feel guilty about letting students and colleagues down but not nearly as guilty and unhappy as I would feel about letting my family down. As you say, none of us are indispensable...

    Thank you again.


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