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Caring For Someone At The End Of Their Life
16 Answers
Hello
I am sure many of you have done this or know someone who has.
What was the main thing you took away from looking after someone with a terminal illness besides the caring for someone when they needed it the most.
How challenging was the experience?
Any tips or information you can share?
I have been researching on the Macmillan website and there is a lot of helpful information on there but I wanted a personal perspective if you are happy to share it with me.
Thank you
GF
I am sure many of you have done this or know someone who has.
What was the main thing you took away from looking after someone with a terminal illness besides the caring for someone when they needed it the most.
How challenging was the experience?
Any tips or information you can share?
I have been researching on the Macmillan website and there is a lot of helpful information on there but I wanted a personal perspective if you are happy to share it with me.
Thank you
GF
Answers
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In my case I had a hospital for much of the time and siblings to help. But try not to let your emotions cause friction between you and other carers. Bite your tongue and remind yourself it is stressful for all. Take each day at a time and do your best. Don't beat yourself up trying to analyse what else you could have done. It's part of life. We humans cope with things, we have to so we find we can.
I don’t think I have got anything helpful to add. My only comfort was that I had done what my husband wanted me to do even when the professionals involved thought I should do something else. This is not said to criticise the professionals, all but a very few were lovely, concerned, understanding and doing their absolute best for us. the system let us down but the individuals didn’t.
I spent six months being angry all the time and using that anger to get things done. All that time, I never lost it once, was never rude, very often though I was demanding, not for myself but for the person I was caring for. In the hospital, I was referred to as “your forthright wife” but with a smile and the staff where very kind to me after I lost him. Again and again people said “we understood, you did what he wanted.” it was no comfort at all. When it was all over I was completely numb. I am assured that this too is normal.
here’s a book i found helpful. not comforting but helpful.
Amazon.co.uk User Recommendation
Its four years ago now and i still read it sometimes.
I don’t know if my experience is common. I do know by research that my reactions and behaviour, while extreme, are not unusual. I hope this helps.
I spent six months being angry all the time and using that anger to get things done. All that time, I never lost it once, was never rude, very often though I was demanding, not for myself but for the person I was caring for. In the hospital, I was referred to as “your forthright wife” but with a smile and the staff where very kind to me after I lost him. Again and again people said “we understood, you did what he wanted.” it was no comfort at all. When it was all over I was completely numb. I am assured that this too is normal.
here’s a book i found helpful. not comforting but helpful.
Amazon.co.uk User Recommendation
Its four years ago now and i still read it sometimes.
I don’t know if my experience is common. I do know by research that my reactions and behaviour, while extreme, are not unusual. I hope this helps.
More about after the death of the person, rather than the caring.
Don't be too surprised if you find that people you thought were good friends don't keep in touch.
It's almost as if they say, 'Well I wrote when my friend died, I'm not really expected to do more than that.' It's now almost a year since my husband died, and I feel very fortunate in the support that I have had from both families, friends old and recent, neighbours, but slightly niggling in the back of my head is the surprise at how I was just completely cut off by others.
One pair of good friends and who live less than ten miles away, after the first acknowledgement, have never got in touch. No phone calls, emails nothing. Sad really, but maybe some people can't cope with it.
Came across a useful book, Tips from Widows, which might be worth a read.
Sorry about the situation that you're in.
Don't be too surprised if you find that people you thought were good friends don't keep in touch.
It's almost as if they say, 'Well I wrote when my friend died, I'm not really expected to do more than that.' It's now almost a year since my husband died, and I feel very fortunate in the support that I have had from both families, friends old and recent, neighbours, but slightly niggling in the back of my head is the surprise at how I was just completely cut off by others.
One pair of good friends and who live less than ten miles away, after the first acknowledgement, have never got in touch. No phone calls, emails nothing. Sad really, but maybe some people can't cope with it.
Came across a useful book, Tips from Widows, which might be worth a read.
Sorry about the situation that you're in.
Different for everyone, but from my own viewpoint - if you love them then try not to lose that and become carer/nurse only.
Accept any and all offers of help - spend as much time just being with them and chatting (if possible).
Importantly remember to eat and drink yourself, you becoming ill won't help anyone.
Also any unkind words flung at you will hurt but are often borne by pain or fear.
Difficult time for you , take care.
Accept any and all offers of help - spend as much time just being with them and chatting (if possible).
Importantly remember to eat and drink yourself, you becoming ill won't help anyone.
Also any unkind words flung at you will hurt but are often borne by pain or fear.
Difficult time for you , take care.
I have to agree with Mamyalynne, and just to add that ..
One thing I found to be important was to have some 'me' time every day - even just half an hour to get out into the garden or read a few chapters of a book in peace and quiet.
My neighbours, although kind, were the 'let me know if I can do anything' type .. which made me not want to bother them - whereas I would have loved a knock at the door at night and had someone to chat to over a bottle of wine - although I realised that they just wouldn't have known what to say, so can't blame them for that.
It's never easy, but just do the best that you can - and please don't neglect yourself.
One thing I found to be important was to have some 'me' time every day - even just half an hour to get out into the garden or read a few chapters of a book in peace and quiet.
My neighbours, although kind, were the 'let me know if I can do anything' type .. which made me not want to bother them - whereas I would have loved a knock at the door at night and had someone to chat to over a bottle of wine - although I realised that they just wouldn't have known what to say, so can't blame them for that.
It's never easy, but just do the best that you can - and please don't neglect yourself.
Just one story that might be relevant:
When my mother was in the 'hospice' part of a hospital (prior to the construction of a purpose-built hospice), I went to visit her one day and, because she was lying on an inflated bed to ease her pain, I immediately started cracking jokes about her 'bouncy castle'. It wasn't out of a lack of concern; it's just the way I do things. The rest of our conversation was in a similarly light-hearted (if not totally daft!) vein.
As I was about to leave, the lady in the next bed (whom I'd never met before) said "Can I have a word with you before you go, please?". I was worried about what she might say but pleased when she said "Thank you. You're like a breath of fresh air in this place. Everyone who visits people here seems to be so gloomy. That's NOT what we want. You've got it right. We need a bit of cheerfulness at the end of our lives. It was lovely to hear you be so cheerful when talking to your mother".
So, the only tiny piece of advice that I can offer is that (however sad you might feel) is to be upbeat in the presence of the terminally ill person and to seek opportunities to laugh together.
When my mother was in the 'hospice' part of a hospital (prior to the construction of a purpose-built hospice), I went to visit her one day and, because she was lying on an inflated bed to ease her pain, I immediately started cracking jokes about her 'bouncy castle'. It wasn't out of a lack of concern; it's just the way I do things. The rest of our conversation was in a similarly light-hearted (if not totally daft!) vein.
As I was about to leave, the lady in the next bed (whom I'd never met before) said "Can I have a word with you before you go, please?". I was worried about what she might say but pleased when she said "Thank you. You're like a breath of fresh air in this place. Everyone who visits people here seems to be so gloomy. That's NOT what we want. You've got it right. We need a bit of cheerfulness at the end of our lives. It was lovely to hear you be so cheerful when talking to your mother".
So, the only tiny piece of advice that I can offer is that (however sad you might feel) is to be upbeat in the presence of the terminally ill person and to seek opportunities to laugh together.
Incredibly challenging, but I've learnt something from each experience. In retrospect, given the opportunity I’d re-think some things - I've beaten myself up in the past - and still do to a degree but once someone is gone it’s too late for a re-think. Ultimately you can only do your best and if your best is offered with love and patience, you can do no more. Treasure your loved ones whilst you can. x
Two quite different experiences, both with very independent / grumpy ladies known as 'difficult' to all and sundry and had alienated everyone she knew.
My mother would say terrible hurtful things and was also hallucinating. Like Mamalynne said, you have to ignore these words. She also lived at a considerable distance.
My work friend went from a tooth problem to a terminal diagnosis in two weeks, and this was when it came to light she knew lots of people superficially but had no family. I only found out the extent of her isolation when she phoned me from St James's and I became effectively her care organiser insofar as she would allow anyone to help. The intense pain made her more snappy than usual and towards the end she was acutely aware of her appearance (maxillo-facial tumours).
With both these experiences my thoughts were: what else would you do - walk away? So pat yourself on the back for seeing it through. If there's a god, which I can neither prove nor disprove, then innate kindness should count for something. If we can all do this for each other, it's all that really matters.
And above all, during and for (I'd say) twelve months or more afterwards, be good to yourself, reduce your commitments, walk in fresh air, swim, do what feels good, allow yourself to be sad, and allow yourself to know that dying gave them release from a terrible place to be in.
My mother would say terrible hurtful things and was also hallucinating. Like Mamalynne said, you have to ignore these words. She also lived at a considerable distance.
My work friend went from a tooth problem to a terminal diagnosis in two weeks, and this was when it came to light she knew lots of people superficially but had no family. I only found out the extent of her isolation when she phoned me from St James's and I became effectively her care organiser insofar as she would allow anyone to help. The intense pain made her more snappy than usual and towards the end she was acutely aware of her appearance (maxillo-facial tumours).
With both these experiences my thoughts were: what else would you do - walk away? So pat yourself on the back for seeing it through. If there's a god, which I can neither prove nor disprove, then innate kindness should count for something. If we can all do this for each other, it's all that really matters.
And above all, during and for (I'd say) twelve months or more afterwards, be good to yourself, reduce your commitments, walk in fresh air, swim, do what feels good, allow yourself to be sad, and allow yourself to know that dying gave them release from a terrible place to be in.
I am in the same situation. My Mother is on a "continuing Healthcare, end of life plan". She has been paying for her own Carers for 4 years so she could stay at home. The NHS now fund her Health care now that she has a terminal diagnosis. They provide al the equipment and she has twice as many Carers than before, including a "Waking Carer" who is there from 10pm till 7am. She is on morphine patches and everything is covered. It still means a lot of work for me and I am very stressed but just about coping. I am pragmatic as she is 96. Ask your GP if there is any extra help available.
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