My husband has advanced pancreatic cancer and is in the last few days/ weeks of his life. I have looked after him at home with support from the palliative team - phone to adjust meds and weekly visit from distict nurse.
It has been really hard - small house with a hospital bed downstairs and he has got gradually more dependent on me for moving, toileting etc and I give him his multitude of meds. He sleeps pretty much all the time with short periods of lucidness and convos.
We had talked about hsopice for the end but it felt like it was about getting the timing right. On friday he decided it was too much for me and my son and he was transferred to the hospice. I followed after and arrived in his room at the same time as his doctor. She went through the meds with me and spoke to him about what happens when you die - ie breathing stops etc. Then she went saying she was going to talk to the other docs and I didnt see her again. I stayed for 3 hours during which time a nurse came once and swabbed for covid.
And that was it.
When I left I found a nurse who then asked if I wanted to be notified in the night if there were changes.
And that was it.
On the way home I was very upset as its a big change and I know my husband will never see his home again. I also thought about the room he was in which was a hopsital style bay with spaces for 3 beds (only one in there though). There was a curtian that had come down draped over a table and a chair with a notice written on it saying broken, - no plants, colour, pictures or any homely touches. By the time I got home I had extreme guilt and feelings of abandonment and was in pieces. I phoned the reception when I got home, told her how I felt and asked if that was what all the rooms were like. She said it was attached to a hospital , but there were smaller rooms -she could swap another patient with him for a smaller room. I didn't want that - it wouldnt be fair on the other patient.
Yesterday when I visited the broken chair had been moved, the curtain put back up and a bunch of flowers put in a vase. so that was something. They had asked my husband if he wanted a smaller room and he said (typical of him) that he was okay.
During my stay, a nurse popped in for the meal order and my husband said he couldnt move up the bed and she said she would send some nurses to do it. They didnt come until eventually we pressed the button about half an hour later when he had been for a wee with my help. We mentioned he had pain and the nurse got oramorph and I mentioned paracateamol but he said it wasnt prescribed. He cam back half an later with some and then said actuallly it was presccribed! Should he not have known? I asked later if there was a doctor who i could talk to and the nurse said they would find out if they had left or not, but didn't come back until the driver needed changing - which I had pointed out to him. So, I got home again and cried buckets again.
So...
I thought a hospice would provide a home from home - comfortable room with a warm homely feeling, not a hospital bay with the swish round yur cubicle blue curtains.
I thought there would be some kind of meet and greet oreinatation. Intro to hospice and how visiting times work - where can can't go, what available or a leaflet etc. I have read the website, but that was me at home.
I thought someone would assess his needs and current state and feed back to us about time left and meds changes etc
I thought someone would want to talk to me as the wife/ carer about how we are doing - our emotional needs. I have a teenage son who may need support too. Or signpost us to support.
I thought someone would give us a point of contact - a person who he is under that we refer to - we have the ward card and phone number, but no named person.
I thought someone would talk to us about what the next few days may hold and what will happen if.
Are my expectations too high - have I been naive about what a hospice is like and what happens? What questions should I ask and to whom? Do you book a time slot to talk to someone? Is it different at weekends?
What are other people's experiences and dies anyone have any really good advice? At the moment it just doesn't feel right, I have terrific guilt and cry all the time.
Thank you.
