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User
Posted 29 Sep 2018 at 07:29

Following some really helpful advice a while ago, I thought I would come back and ask again.


My dad has now been in hospital for 6 weeks after a fall. He has then had various infections. He has not eaten very much at all before he went into hospital, but has eaten nothing at all for at least 3 weeks. He is still drinking fluids.


Three weeks ago he was going to be discharged with carers twice a day, but then fell getting out of bed.


He has now been fast tracked for CHC, due to be discharged today. This was after I specifically asked why this had not been done.There are some issues around this, but I am hopefully getting them sorted.


My question is, how will I know when he is close to dying, The hospital keep talking about "when he deteriorates", but this week he has been agitated, asking for his mum,  asking where he is going and clinging on to family's hands (not usually an outwardly affectionate man, so really threw my brother when he started doing this). He asked my brother to help him die yesterday and seems really uncomfortable and in pain.


Each time I see him, I think that he is close to dying, but everyone at the hospital seems very dismissive. Everything that I've read seems to point to dad's behaviour as being near the end. They do say things like " you do know he's not going to get better" and yesterday a dietician came to see him, told him that not eating was "all in the mind" and then kindly told me and my brother that if he doesn't eat he will probably continue to lose weight.


No one tells us anything, we have to physically go and ask and then the attitude is a bit "well what exactly do you want to know?" I know hospitals are busy places, but there is no care or dignity in what is happening.


It's so distressing to watch

User
Posted 29 Sep 2018 at 12:01

How awful for you all Clairjen. I don't know what to say other than if you can get your dad into the hospice it will make every difference to his level of care and just as importantly there will be more time for support to you and your family at this very difficult time.


We've only just been to a coroner's inquest this week for my husband's mum who died in March. Sad to say she was yet another person left on a trolley in a hospital corridor for many hours. Long story short but she received sub optimal care mostly down to under funding of the NHS.


You really do need to fight every day for your loved ones in hospital. You shouldn't need to and it wears you down .


Hospice care is what your dad and  your family need so keep at them until he gets there. It will help you all enormously.


Best wishes


Ann

User
Posted 29 Sep 2018 at 12:35
No excuse for him being in pain in hospital. They need to sort it immediately. Record his condition daily and collar whoever is in charge on the ward and demand an explanation / action. Palliative care is not expensive so being "underfunded" is just an excuse.

I can remember vividly when I was "dying" from a sepsis and in intensive care listening to the contract hire nurses talking about how they were being paid £1000 a shift and how best to maximise what they got paid. An awful lot of the poor provision in the NHS us down to poor management of resources, this is why vocal and demanding patients or their carers can make a difference. It is worth the agro.

My own father had a very dignified and peaceful end in hospital but it was hard work making it happen.
User
Posted 29 Sep 2018 at 18:09
You are in a terrible position Clairejen and you shouldn't be.

I really really suggest that you ask for the PALS phone number, either on the ward or via the telephone operator at the hospital.
Ring them nd explain the situation and they will listen and hopefully expedite something for your dad, be it pain relief or information for you.

I too agree with Ann that maybe get dad moved to a local hospice where the care if for the patient as well as consideration for the loved ones
We can't control the winds - but we can adjust our sails
User
Posted 29 Sep 2018 at 18:27
I think if you look up “How do I know when someone is dying?” or words to that effect on the internet, as I did the other day, you will see the terminal signs.

I won’t post a link. Check out it yourself if you wish.

Chin up. Life goes on.

Cheers, John
User
Posted 29 Sep 2018 at 18:28
Yes, it does sound as if he is moving towards the final stages. I don't know why some medical staff find that hard to say. Calling for relatives that are gone, imagining people are in the room are both signs, as is the not eating. Another common sign is constantly plucking at the bedclothes or his pyjamas, or his vision failing.

Many of these are indicators of dehydration rather than anything mystical. Nature is a wonderful thing and as the body starts to fail, messages are sent to the brain that food is no longer needed so the appetite drops and it gets harder to persuade the person to eat anything other than treats like ice cream or a favourite dish. Later in the process (sometimes weeks later) the brain tells itself to stop wanting water - dehydration produces a natural pain relief.

I assume from what you have posted that your dad has expressed a wish to die at home rather than in a hospice, or that this is what you would like to do as a family if possible? Usually, the CHC team takes a few days to get sorted but if you are provided with a specialist bed and other practical equipment that makes it much easier for you and him. The CHC team will probably be much better at sorting out the pain relief as well - hospice and palliative care professionals know much more about pain than hospital staff and are less restricted about what they can prescribe.

I hope you get him home in time. I had to kidnap my mum from the hospice which at the time caused a scandal but was the right thing for us as a family. She probably stayed with us for about 3 more weeks after she stopped eating.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Sep 2018 at 20:13
That’s terrible! But at least he is home and I am sure he will feel more settled in familiar surroundings.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Oct 2018 at 11:14
No apparently not.

Clairejen, I am so pleased that you managed to get dad home in time and that he was able to slip away gently rather than in a state of agitation at the hospital.

You and your family are in my thoughts x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 29 Sep 2018 at 12:01

How awful for you all Clairjen. I don't know what to say other than if you can get your dad into the hospice it will make every difference to his level of care and just as importantly there will be more time for support to you and your family at this very difficult time.


We've only just been to a coroner's inquest this week for my husband's mum who died in March. Sad to say she was yet another person left on a trolley in a hospital corridor for many hours. Long story short but she received sub optimal care mostly down to under funding of the NHS.


You really do need to fight every day for your loved ones in hospital. You shouldn't need to and it wears you down .


Hospice care is what your dad and  your family need so keep at them until he gets there. It will help you all enormously.


Best wishes


Ann

User
Posted 29 Sep 2018 at 12:35
No excuse for him being in pain in hospital. They need to sort it immediately. Record his condition daily and collar whoever is in charge on the ward and demand an explanation / action. Palliative care is not expensive so being "underfunded" is just an excuse.

I can remember vividly when I was "dying" from a sepsis and in intensive care listening to the contract hire nurses talking about how they were being paid £1000 a shift and how best to maximise what they got paid. An awful lot of the poor provision in the NHS us down to poor management of resources, this is why vocal and demanding patients or their carers can make a difference. It is worth the agro.

My own father had a very dignified and peaceful end in hospital but it was hard work making it happen.
User
Posted 29 Sep 2018 at 18:09
You are in a terrible position Clairejen and you shouldn't be.

I really really suggest that you ask for the PALS phone number, either on the ward or via the telephone operator at the hospital.
Ring them nd explain the situation and they will listen and hopefully expedite something for your dad, be it pain relief or information for you.

I too agree with Ann that maybe get dad moved to a local hospice where the care if for the patient as well as consideration for the loved ones
We can't control the winds - but we can adjust our sails
User
Posted 29 Sep 2018 at 18:27
I think if you look up “How do I know when someone is dying?” or words to that effect on the internet, as I did the other day, you will see the terminal signs.

I won’t post a link. Check out it yourself if you wish.

Chin up. Life goes on.

Cheers, John
User
Posted 29 Sep 2018 at 18:28
Yes, it does sound as if he is moving towards the final stages. I don't know why some medical staff find that hard to say. Calling for relatives that are gone, imagining people are in the room are both signs, as is the not eating. Another common sign is constantly plucking at the bedclothes or his pyjamas, or his vision failing.

Many of these are indicators of dehydration rather than anything mystical. Nature is a wonderful thing and as the body starts to fail, messages are sent to the brain that food is no longer needed so the appetite drops and it gets harder to persuade the person to eat anything other than treats like ice cream or a favourite dish. Later in the process (sometimes weeks later) the brain tells itself to stop wanting water - dehydration produces a natural pain relief.

I assume from what you have posted that your dad has expressed a wish to die at home rather than in a hospice, or that this is what you would like to do as a family if possible? Usually, the CHC team takes a few days to get sorted but if you are provided with a specialist bed and other practical equipment that makes it much easier for you and him. The CHC team will probably be much better at sorting out the pain relief as well - hospice and palliative care professionals know much more about pain than hospital staff and are less restricted about what they can prescribe.

I hope you get him home in time. I had to kidnap my mum from the hospice which at the time caused a scandal but was the right thing for us as a family. She probably stayed with us for about 3 more weeks after she stopped eating.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Sep 2018 at 18:42

My dad arrived home in an ambulance at 530 this evening. luckily my mum was at home or I think they would have left him in the doorstep. Just waiting to find out if any carers are coming

User
Posted 29 Sep 2018 at 20:13
That’s terrible! But at least he is home and I am sure he will feel more settled in familiar surroundings.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Oct 2018 at 23:20

Originally Posted by: Online Community Member


Chin up. Life goes on.


I see he doesn't get more considerate/sensitive to those supporting relatives facing the death of those they love.

User
Posted 07 Oct 2018 at 11:14
No apparently not.

Clairejen, I am so pleased that you managed to get dad home in time and that he was able to slip away gently rather than in a state of agitation at the hospital.

You and your family are in my thoughts x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
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