Can anyone offer any advice, we have been told to expect my Dads passing, he has now been in bed for just over a week and not eaten for 9 days, he only drinks a bit of water while taking medication morning and night. Nobody seems to be telling us just how long he has got and we are in turmoil.
I’m so sorry to hear that your dad is expected to pass away. Yes, it is common for people to eat very little or not at all when they are close to the end of life. You can find some more information about this on our website here: What can I expect when death is near?
Do you have help and support in caring for your dad? If you need any information about his condition, or getting support, or just need to talk to someone, Marie Cure have a free helpline on 0800 090 2309.
Thank you Priscilla. Its just hard as we don’t know whether he has weeks or months.
It can be really difficult to know how long a person has left. If you want to know, the best people to ask are his medical team, as they will be able to give you an idea, although even they won’t be able to say for sure.
Does he have care from a hospice or palliative care team?
He is on the Palliative Care Register, but not yet at the stage for fast track. They have organised a the community nursing team to attend twice a week. The doctor has said he will visit again next week.
You can ask the nursing team or the doctor to give you an idea of how much time they think he is likely to have. Are they aware that he isn’t eating?
If you need some information between their visits, or you feel you don’t have enough support with his care, the Marie Curie number in my previous post would be a good place to start.
Hi
So sorry to hear you are going through this heartache.
I was in the same position with my dad and none of the medical team could tell me either, they just said it’s not “imminent” and dad passed away 2 days later. It was such a shock even though an expected one.
Just try and spend as much time with him as you can and make him comfortable. Make sure you look after yourself because it’s going to be a tough road ahead. I lost my dad 7 weeks ago.
Take care
xxx
Thank you for replying so sorry to hear of your loss. It is so hard not knowing I am still working as normal but have days thinking should I be with my Dad terrible not knowing how long I just worry that if he was to suddenly pass away I will be so angry for not spending the time with him when I should be. But the medical people just say it can go on for weeks and months. Just awful.
Take care
xxx
I think your instinct tells you. My dad was in hospital for 3 weeks and I worked during the day and went to see him every evening but when my dad was sleeping a lot and drifting in and out of consciousness and he stopped eating I just knew and rang in sick and he passed a week later. I was so glad I had that time with him so you need to do what’s right for you.
Even now I wish I had dropped work the minute he went into hospital and spent every day and every evening with him but this is not always possible to do. I am still off work now but will be going back in another week’s time.
xxx
Thank you so much for that it really puts things into prospective.
xxx
I think your instinct tells you. My dad was in hospital for 3 weeks and I worked during the day and went to see him every evening but when my dad was sleeping a lot and drifting in and out of consciousness and he stopped eating I just knew and rang in sick and he passed a week later. I was so glad I had that time with him so you need to do what’s right for you.
Even now I wish I had dropped work the minute he went into hospital and spent every day and every evening with him but this is not always possible to do. I am still off work now but will be going back in another week’s time.
xxx
I agree everything Lyn has said. When my mum woke for the last time I was not there (juggling between two poorly parents). I know it is so difficult when you do not know how much time you need off work. I could not tell work how much time I needed but kept in daily contact. Take care x
Thank you for responding. We are now on day 14 of Dad not eating, but strangely still able to get up to go to the toilet with assistance and a walking frame. This is so hard to watch.
xx
There is nothing more heartbreaking than watching someone you love going through this and feeling so utterly helpless. I felt pure relief when dad passed as I couldn’t bear him suffering and not knowing when the end would come. I never thought I would cope but you do somehow.
Thinking of you
xx
Thank you so much, this is how I feel as don’t want him to carry on like this for months and months.
xxx
Hiya,
I lost my mum last August.
I was in the same position as you are. No one could tell us timescales and it was hard as I live a 3 hour drive from where mum lived.
All I can say is spend as much time as you can with him - you never get the chance once they have gone - and try to continue to make memories. Photographs, a video clip and a voice recording - just things that may help when he does pass.
My mum stopped eating and would not take the drinks they use either but she did continue for a while on practically nothing. I think it is once the water intake drops to nothing that most medical staff say 5-7 days but that is not an exact science either.
My mum was in a nursing home for the last few months of her life. She was up and sitting in the lounge even when she was not eating. Then on a Monday the nurses said she needed to stay in bed … she passed away that Friday.
I am so sorry that you are going through this. As Lyn says you need to look after yourself too - otherwise you will be poorly too.
Sending hugs,
Caroline
X
Thank you for replying we are at a loss really, we are frustrated and upset with all what is going on. We organised a 24/7 live in care package to support my Mum with Dad, to be told yesterday that he was been fast tracked under the NHS care. A night assessment team came in, we were then told this morning that he does not need the care as he can walk with a frame unaided to the toilet but yet when the GP called to see him yesterday he said that he had deteriorated since last week. We feel so unsupported by professionals. We now don’t know which way to turn for his care and for the support of Mum.
xx
Hi there,
This is such a tough time for you and I am so sorry for the stress that is being caused by professionals not empathising enough with how you are all feeling.
All the changes of mind and messing about are unforgivable. My mum was fast tracked under the Continuing Healthcare guidelines but we had to fight to get them to agree to this. I believe that your GP can put in a referral to the CCG for fast tracking - maybe ask if he/she can ?
It is all about wanting the care and support that you need. Is there a local hospice that can support care at home ? Many do hime visits if a condition is terminal.
I do hope that you get the support that you need.
Caroline x
The referral went through yesterday only to be told that he is not needing any night care. Thank you for your email.
x
Oh dear - just try to keep on pushing the professionals to fight for you.
Do you mind me asking what health issue your dad has ?
My mum had chronic kidney disease which is very unpredictable but I took advice from a friend in the know and we got Mum CHC fast tracked. I am no expert but if you want to talk about it please do.
Caroline