Hiya, I’m not really good with technology so don’t know if I’m writing in the correct box. I suppose I just want to talk and let some out, but I would also like to hear any advice if you have something relevant. MY husband is on palative care now, and I think we are managing ok at home. He is barely eating isn’t interested and he isn’t,really bothered about liquids. I still have carers in the morning but not any more during the day. His meds have been reduced to see if he can stay present enough to be able to drink. Unfortunately paracetamol doesn’t do anything for the pain and so today I have put him back on Pregablin. I was told I could do this if he wasn’t comfortable. The carers are great but rather fast, and moving him fast causes so much more discomfort. The only reason I haven’t cancelled the morning call is because I can’t change the sheets by myself whilst he is in bed. He won’t be getting up, with the hoist anymore he is too weak. I know,the dying process is a natural progression and I understand a lot because I looked after my mum. That’s was a while back and I’m trying to remember the phases. An idea of his liquid intake in a day is about 400ml so is very small. He has diareah now and the urine output this morning was 200ml. I just want to be prepared with everything I need and what is to come. They have already dropped off the ‘just in case medication. I’m doing my best to engage with him whilst he is awake. He is sleeping a lot of the time. He has started coughing about a week ago, he has heart failure and there has been some phlegm come up today. The drs have been very good she was here yesterday and will be calling me tomorrow for an update.one little thing that is bothering him is itchy eyes. The dr yesterday didn’t know why, I’m wondering if that’s due to the dehydration? Thoughts please
hi @Jane269 , I am sorry to hear this about this. The only thing I can suggest is perharps give either the 111 or the 999 service a call and see what they say. Even call the GP out again if you need too. It sounds like it could be a nasty bug, the heat or his body giving up. I would also see if a family member or friend can be with you if the worst is yet to come . I will tag a few members who might be willing to give some advice, @Sue24 and @Chris_22081 .
take care
Hi, I’m so sorry to hear this. I can’t really suggest much as my husband was on palliative care in the hospital. The dr was very good and gave us a realistic idea re timescales. Do you have a palliative care nurse who can help guide you through this?
@Jane269 hiya Jane so sorry you are going through this I would speak to the palliative care team and ask them all the things you need to know and also the gp. I hope that you are doing ok.take care.
Has your GP arranged FASTR TRACK NHS Continuing Healthcare for yOU?
It is supposed to be provided within 48 hours of asking. All the care and support he needs.
Google “Signs of Dying”. I know it’s horrible to do, but you will find really good explanations of how the body slows down, and what is happening.
If you haven’t done so already, arrange for a funeral director, so that when the time comes, he will take over immediately. My husband died unexpectedly in his sleep. It was awful, trying to sort things out when I was in total shock with tears pouring down.
When mum was dying in a care home I contacted the funeral director (we’d used for my husband) and he was brilliant.
Hiya Michael, there isn’t anything that can be done to help other than keep him comfortable
Hiya, no this hasn’t been done yet. I might ask tomorrow but then that’s me actually saying this is final and I know it’s crazy I keep thinking it isn’t. I just can’t relax or sleep properly. His breathing is so shallow at times, but and this is my biggest comfort, he looks so comfortable and at rest.
The dr is calling me tomorrow, they are either visiting or calling me every other day which is very attentive of them. I will ask about a palatine nurse tomorrow, all I have at the moment is a complex care nurse and a district nurse. Thank you for replying, I am feeling pretty lost and alone waiting
Sorry palative nurse
I hope you are finding the support you need at such a difficult time
Here is a link to the MacMillan nurses site that’s to support someone when the person they care for is at the end of their life, whether or not they have a cancer diagnosis.
If the person you care for is dying | Macmillan Cancer Support
@Jane269 when my friends dad was end of life she got someone from the local hospice they rung and offered 2 nights a week to sit with him that’s all they could spare.but it helped .
Bowling bun is right your husband should be on fast tracked continued health care now.when the doctor rings tomorrow ask her to put in for it and it is fast tracked continued health care she should sort this out for you.yes you must feel like that.and ask for a palliative nurse at least they will understand it all and you will have someone to talk to there about everything who will understand then hopefully you won’t feel so lost and alone. You keep messaging here when you want we are all here for you. I hope today is not to bad for you.take care.x
Thank you for this info, I got the fast track for NHS healthcare. They are also sorting a rapid response team, and a hospice will be in touch for help when I need them. I’m feeling a bit more settled and understanding of the situation now.
I’m so pleased, but it’s a shame it wasn’t arranged much earlier.