Caring for someone with a terminal illness

Yes okay, and have you talked about what kind of care Bill would want in the months in, in the future?

About when he dies?

He’d like to die at home, preferably. And we’re sort of geared up for that. The hospice are trialling respite at home and we’re going to see how that works out for us next month. So basically they’re all geared up for, for care at home but I think really it’ll come down to, you know, when the time is right what really, what really does shape up.

Oh and that’s another thing because other people we have known with MND have died in the district hospital and that is a definitely a place Bill doesn’t want to be taken to or die. I mean we hope we have it, you know, everything, you can’t anticipate too much can you? What will come down, but we hope it will be here and if not here then the hospice where he dies, yes.
 

Similarly, how did you feel about her decision to die at home?

Oh, I fully, I mean Pat, Pat really I mean you get this expression again, don’t you, a home bird and that but she was in all respects. I mean no, no different from millions of other mothers and, and wives. I mean she, she really was, I mean this environment, wherever we were, I mean we never talked about houses and values. It was, wherever, whatever your accommodation, that’s your home and that you, it don’t matter whether it’s a hovel or whether it’s a mansion. It’s what you make of that in terms of, and we’ve been together all that time and so I felt, when she said to me, “I want to come home.” There was no doubt in my mind.

So you had to be here to expl..., realise what it meant to her when she when, when she came through that door. It was extraordinary and the, as I say the, no, in any way, no implied criticism of the facilities, the hospice or anything else. It, she was she was morally uplifted as soon as she came through that door and you can just you could see it in her. You could feel it in her and it, it was the remarkable increase, again, in her spirits and that’s all I can say. So, no, I had no hesitancy in agreeing, well, it wasn’t agreeing, in saying, “Yeah, you come home.” And, as it turned out, it was a it was a wonderful development and I’m sure, although you can you can never be completely knowing in terms of what that individual feels, but I’m sure it made a great difference to her. And, when I say difference, a feeling of, of great comfort. So no, I had no doubt.
 

Yes, I mean she was really from, from well, I mean I’ve already explained when, when she went into the hospice, it was almost two months that she spent in the hospice and really the level of care that she had at the hospice was very, very good indeed and I felt it was an appropriate kind of care that she was receiving. I felt it was totally appropriate that she was at the hospice and, and that she was allowed to be there for all that period.

Now, if you reflect back to that, do you feel that has, was a good decision for coming back here, you know, you still live here?

Yes.

And so the last time she was here she was not….

That ill.

that unwell?

Exactly, yes. I think it was a really good decision that she, she suggested that she didn’t come home but she did say to me, “Look, I’ve decided I really want to stay in the hospice. I don’t want to come home and the reason I want it is because I don’t want to take my condition, my sickness, home for you to have to feel it in the house.” She said, “I think it’s much better for me to be here. Do you agree?” And I thought about it, really quite briefly, and said, “Yes, I do agree. If you’re happy with that, I agree that it will help me to cope with being in that house.” And, and I’m sure it was the right decision and I was happy about it. I didn’t feel that I really wanted her to be at home with me. I wanted her to be with me, of course, but not feeling the way she did. I didn’t want her to feel sick and be with me.
 

And then the night before she died was the, at about 11 o’clock at night. Well I should say, there was a, she’d already looked at hospice care, and her desire was to die in a hospice. Not to die at home. And not to die in a hospital. And she had looked at a particular hospice which she had, she felt was where she wanted to die. And so my sister and my father had visited, I hadn’t actually visited it.

And when we realised that she was significantly unwell during this three week stay, we talked to the palliative care team about the transfer to the hospice. But her care, her illness deteriorated at that point so quickly that they were making plans to move her, but the concern was that the move in an ambulance, which would have been at least an hour and a half in ambulance from where she was, would’ve been really, really disruptive.

As I said we were lucky enough that she was in a private room, she wasn’t on a ward. If she’d have been on a ward I think we’d have said, “Bung her in a, we’ll take her to the hospice, it doesn’t matter.” But she was in a private room that was quiet; it was very good nursing care. We could stay there, so we didn’t feel an enormous need. If she’d have been in a ward we would have done.