“The respect for his wishes was incredible all the way along.”

I met James when I was 16, so we were together for a very long time.

He became ill in 2023. It turned out that he had cholangiocarcinoma, cancer of the bile duct, and we found out it was stage four.

James was such a determined person. He was so determined to find a cure or at least a way to extend his life. He spent all of his time researching and looking at treatment and things. It was nearly like my job as well. It was a team effort.

All along he had been reluctant to have much to do with the hospice because he thought, “No, I’m going to get better, I don’t need the hospice.”

When we were at home and James was quite ill, he had palliative care nurses come out to him. They were a real lifeline for us because I felt when they weren’t there that I was in charge of his care, so I was really glad to see them come. I could bring up any issues that I had with them and they were very caring, in an emotional sense as well as a physical one.

Eventually, James reluctantly agreed to come to the hospice by ambulance.

“This is the right place to be”

When I got to the hospice, I came separately to him because I had to drive. James was in bed and the patio doors were open in the room that he was in. The sun was just streaming in and I could see the flowers outside the door. It was just beautiful.

I walked in and I felt, “Oh okay, this is the right place to be.”

James was wrapped in blankets and he looked so much more at home than he would have in little hospital sheets. They were proper furry blankets and it looked lovely.

He said to me, “I went for a walk around the grounds.” I didn’t believe him, but then I spoke to one of the nurses later and she said she had brought him for a walk around. He was curious about the place and that helped him with his fears as well. He could see what it was.

That really touched me.

I was told to put up whatever pictures I wanted, so I got my mum to bring in a huge photo of us as a family and that was right in front of his bed, so that when he opened his eyes that was the first thing that he would see.

We have three boys. They would come in and do pictures with Kathy, the art therapist, in the art room. Our middle guy loves art, so he got so much out of that and a lot of comfort.

They all just loved coming in to see us, which you wouldn’t expect really with the hospice. You’d think, “Oh, it’s somewhere you have to be quiet and good,” but it wasn’t like that at all.

Everybody here kind of made it special when they came in. They would bring in this big TV and we’d have a movie day. The first day that we did that, they brought in a trolley full of snacks and sweets and things and my boys just couldn’t believe how lucky they were.

They discovered that Mary in the kitchen makes really nice milkshakes. They still talk about it. Anytime we have a milkshake now they’re like, “It’s not as good as Mary’s.” Every single time, everywhere we go, we rate it now and Mary’s is the top level.

It was just lovely. It was a really, really special time and not really sad.

It wasn’t a sad place for us to be.

There was a lot of sunshine and laughs and the nurses would come in and we had great craic with them.

We were here for three months.

Those small, small things

What stuck out as well was, on the first day that I got here, the respect that they showed to him. They had such respect. He was first in line and then it was me. They looked after me so well, but they respected him and his wishes as a patient.

As he became more ill, they were so dedicated to making him feel better. He was very nauseous and they were determined to get on top of that nausea and pain. They were always trying to balance it. He wanted to be awake enough to see the kids and they really respected that.

That level of care and respect for his wishes was so precious all the way along.

Those kind of small, small things that let the patient just feel that they are still in charge here.

When he died, we all got little crocheted hearts to put in with him, that we would keep one each and put one in with him as well. I think that was such a lovely touch as well, that we have this constant connection and the kids could see there’s something we have that’s going with him as well.

What a lovely thought. It’s really, really special.

Always a connection

There has always been a connection. There’s never been a time where I’ve been out of contact with the hospice really.

I really value the counselling that I have with Aisling, one of the social workers. The first day that I met her she started off by asking me how we had met, and I thought that was so nice, to take me out of my darkness and grief and speak about better times and come into it that way.

We were such a unit that it’s still shocking to me that he’s not here, to be honest. I was 16, so from 16 to 40, that’s when your whole self is formed. We felt like a unit.

One day I said to my mum, “I don’t feel him around, like where is he?” And that night I was looking through paperwork from here and I found a letter that he had written to me with Christina, another social worker.

That was just exactly what I needed at that exact time.

It’s such a precious, lovely letter. I had no idea that he had done that. Christina spent hours with him and I would go off for walks and things, and she would take down things that he wanted to say. She made these really lovely letters and we did cards and letters for the kids.

What a precious thing to have now.

I feel good here. I feel close to him.

It is kind of a lonely thing when you lose that person that you have a connection with so much, but I don’t feel that I’ve been kind of cut loose from the hospice service.

I’ve been told that I can come in here for as long as I want to and need to, and to have that facility is really important to me.

When I drive in, I do get this sense of peace because we spent so much time here.

When we were here it was becoming autumn, so we could really see nature still. We could bring our boys outside and they could run through the leaves. They loved that.

Just that connection, to still have this, is really important to me.

 

Marian Hastings
James’s wife