Anyone else nil by mouth permanently? (either supporting or living with yourself)

Hi 

Very sorry to hear about your husbands current symptoms .

I was wondering if it might be helpful to have a chat with the nurses on the helpline number. 0808 808 0000. They might be able to access more information on preparing for end of life care or to identify signs of that approach to assist you .

There is also a carer’s forum and group for relatives dealing with end of life care if that might interest you in terms of seeking support for yourself .

Are the palliative care team currently involved with your husband?

We are hear you support you . I am a CC in the bowel forum but happy to chat or support where possible .

Take care ,

Court 

Hi Creina,

I read your post and have so much empathy for your situation.

My father in law, was diagnosed only 4 weeks ago, and had a stent fitted around the same time. He had been nil by mouth for a number of weeks prior to hospital but spent his 3 weeks in hospital under nil by mouth. It was heartbreaking as we could not visit due to COVID restrictions.

He, and we, were told they could do no more for him as being 101 he would not stand an operation or other treatments. He is still not eating or drinking due to the cancer and we are dealing with caring for him at home. He is definitely in end of life phase, we are trying everyday and night to make him as comfortable as possible, but with his dementia, it is so difficult to explain why the doctors are not coming, or doing anything to help him. So sad.

We are working together as a family, I do most of the nights, the rest of the family chip in with me during the week, he has good family support. That is what I hope you have, we are caring for him, and trying to lift each other in this difficult situation.

Please feel free to chat whenever you like, I look on the forum most evenings, and I also joined the caring forum, some great people on there too.

You have all my best wishes, 

Regards

Thanks Digger and Court

Nice to get your replies. My hubby has been nil by mouth for 5 weeks now and will be till the end. The fact that he had lost this basic human function was told to him so callously, so casually, by the endoscopy team who could not fit the stent.

So our lives revolve around trying to get enough 'feed' (revolting word) and water into him each day, and failing miserably. As tiredness or nausea or coughing overwhelm him and mean he wants to stop. 

So it is hard to know which will get him first - the starvation or the cancer - but it's grim. Such a sad way to go.

But we are hanging in there. Trying to smile and share a sense of love with each other and our daughter when we can.

Sadly we have very little family support, but friends have been great. Yes, I'm on the carers for those with terminal cancer forum as well - this thread probably would have been better posted there.

Thanks, Creina