Caring for someone with a terminal illness

So how did you, because, obviously, you, your world changed.

Yeah.

You took, did you say you took time off work? How did you find dealing with his illness and caring for him?

It, it was very difficult. I mean the fact that he, it soon became obvious that you couldn’t leave him for any length of time on his own because he got very confused. Now, I’ve got a very small kitchen and one day someone had popped in to see him and they couldn’t find the fridge to find the milk and we I gave notice, I gave them three months’ notice at work in September because it was obvious that he was, and they were very grateful that I wasn’t going to go straight away and then about a month into this, I, one day I’d arrange for Donald, someone was going to come and pick him up at eleven and take him to a friend’s house. And as I was leaving he just got so confused that I rang my friend and said, “Look. Can I bring him now?” And when I got into work I said, “Look. I’m sorry. I can’t do this anymore. I’m going to have to finish today. I’m really sorry.”

And once I was here he wasn’t so bad but he would wake up in the middle of the night, there was, he would wake up in the middle of the night and he wouldn’t know where he was. He wouldn’t know how to get out of bed. He wouldn’t know where the bathroom was.
 

When we look at time, do you feel you had time yourself? When John was ill, did you have time for you at all?

Well, that’s one of the things that I feel guilty about strangely enough. That because I thought he was going to come out, because I didn’t realise that he’d gone in there and he would never come home again, I tried to keep a balance of things. So I thought, “When he comes out I don’t want him to find that the house has fallen apart.” So I tried to do my housework within reason obviously, because I had to be there every day. I didn’t once, I needed my motor to be running because I was the one in charge now. So I belonged, both of us belonged to various groups and organisations and classes and what have you, so I tried to keep up with my work for those things so I would try to find time in the day to do those things. And so I wasn’t at the hospital at the crack of dawn every morning and there, you know, but then I suffered guilt afterwards because I didn’t know he had such a short time and nobody had said to me, “Your husband is on palliative care and this is a terminal illness and you know, you need to make the best of your time.”

There was no dialogue like that going on. There was no dialogue at all so I was spending my time, doing, looking after the house or, or catching up with my bit of work, you know, my embroidery for my next class or whatever and then going in and then spending time into the evening and so on. And it wasn’t really until the last couple of days that I spent the sort of time I should have been spending there but in time, I’ve come to terms with that. In time I have realised that John lived his life very fully, right up to the end, and I guess that’s all I was doing. I was living my life as fully as possible.
 

The finances and everything, which he had always dealt with and that is the most difficult thing and I’ve said to friends, you know, that if, you know, for goodness, that they’re still a couple, for goodness sake, if you don’t do any of the family finances, learn how it’s done so that when and if you’ve got to do that. It’s better, if my elder daughter didn’t get me on the computer and teach me to do everything on the on the computer with it, I still make mistakes even after all this time, after two years. I said, “Well, I can’t make my account balance.” And she, “Oh, I’ll come and sort you out.” And, of course, fees have to be paid every month so I’ve got to make sure there’s enough money to cover that. I think that’s that, that most difficult thing.

So what kind of things do you feel you have to keep control of now that he’s in the nursing home?

Well, the finances, for a start. Learning how to live alone for the first time ever. I married from my parent’s home and where I lived, twenty two, then lived with Jim, so I’ve never lived alone. That’s not easy. Sounds as though I’m terribly dependent on people, doesn’t it? But I’m, I’m trying , I’m not but there are things that I, you know, I can’t cope with and blessed PC is a, you know, if you hit the wrong key it, I think, “Oh, crumbs. Now what do I do?” And inevitably, I have to phone up one of the girls and say, “I’ve got such and such. What do I do?” Things like that, you know, and it I suppose it, I get, I’m annoyed with myself for not being able to do it or controlling that. On the television, this switch over that we’ve just, digital thing we’ve just done this week and I haven’t a clue what to do. Okay. I could have paid someone to come in and do it but I, that goes against the grain because Jim’s always done it. He’s always been able to do these things. I’ve never wired a plug in my life. That’s an example. I can’t get up in the loft because I’ve got two knee replacements and I just haven’t got the strength in my knees to get up the ladder into the loft. So I’m reliant on sons-in-law, when they come, “Would you mind?” I mean I’ve got to ask my son-in-law this weekend, “Would you mind going up in the loft for me?” You know. I hate having to ask. But I’m learning.
 

And I think important that we continued and we had days out. And Di was always fairly adventurous and so we’d think of ways of taking that in the wheelchair. We’d get her in the car and some friends…I don’t drive a car…so I’d started learning as soon as she got ill but friends said, “Don’t worry. It's another stress, we’ve got a car. You know, we will help you out.” Lots of friends offered use of a car. And we used to take Di out and we used to have the most wonderful days out. And we went up to one…the autumn of in 2004…we went up to Hertford Lock near Huntington to the river. And there was a boat offering pleasure cruises there and we thought we wondered if we could get the wheelchair… there’s only a little plank. We wondered if we could get the wheelchair in and we asked the chap and he said, “I’m game for anything”. So we kind of levered the wheelchair up and out and over and everything and she was laughing and everything. And we managed to get to jam her in somehow into the boat. We nearly tipped her out on a couple of occasions. But we managed to jam her into the boat and we went for cruise up the river and you know how lovely it is on the river, you know, it so peaceful and lovely and, and she loved that.

And we continued to go to the theatre and to the cinema. And we, we were determined that we would have as ordinary a life as possible. And despite Di’s problems with eating we still went out to restaurants, you know and she would readily choke and there was difficulties.

And we thought well okay but there was some embarrassment you know there. But we kind of said…thought to ourselves well okay, it is embarrassing or can be, but let’s do it. It’s what we’ve always done and we still enjoyed doing it you know. So we did go out and we did go to restaurants and we did go to the cinema, you know.
 

I mean I have got a lot of involvement in various activities that I’m involved with in the church and in the, and in an aid project that I’m involved with, food aid project. And so, so actually, looking back, I was able to continue with that involvement and sometimes, I sometimes think to myself, when I’m feeling really guilty, “Should I have dropped everything and just spent the time with Joyce?” But I mean I think, truthfully, taking a balanced view, I was probably able to give her care that she needed and still, and she would still release me to, to be involved in, in things that I thought were important. And I suppose, truthfully, that was a good thing actually for me. Yeah. 

When we were talking briefly at the start, and you were saying, you know, about your social life. Did you have time out for yourself during your period of care, towards the end when you were your mother was ill?

A couple of times. I did feel very guilty about it. As I said, there was the one time, when she was in hospital, I thought I’d be okay and didn’t, didn’t work out but I did, at weekends I would sometimes go and see Mum in the hospice or the hospital in the morning and then maybe meet someone at lunchtime and then go back. Or in an afternoon I’d have sort of afternoon out to do something, well I still had to do shopping and household chores. Some of my friends, many of my friends were very, very fond of her so they were quite happy to come to [the hospice] so Mum would be asleep and we’d be sitting in the room and we would socialise that way. One of my friends came over from America and spent a week doing mostly that, just sitting with me there and then taking me out in the evening for a meal.

So yes, but I didn’t want to do it too much. I didn’t miss a day. I didn’t take a whole day off ever, not while she was, not once I knew she was that that sick. I mean prior to that.

Is that a comfort now? Is that a comfort to you now to know that you were there?

Yes. I would have hated something to have happened while I was enjoying myself. It’s not that I didn’t enjoy myself. My friends were wonderfully supportive, really supportive and they understood.

And if I could go over for a couple of hours and a cup of coffee somewhere, fortunately, some friends of mine live very close to the to the hospice and I would often go over there afterwards for a evening meal or a chat. They’ve got a, a little girl who was, what, about two and a half at the time so I’d go for what I’d call, her name’s [Name], I’d go for [Name] therapy because when you’re when you’re with a child of that age they’re just pure joy and sometimes you just needed that, something just completely different, this total innocence who’s reaching out to you.

And that was lovely. So yes, you look for things and, and, and friends were, were extremely supportive. I mean sometimes I would stay overnight at the hospice, when, when it got silly and then they’d say, “Well.” They’d, they’d bring me bring me sort of fruit bars and things that they know I like and little treats for Mum.

So yeah, we, we found, we found an enormous amount of relaxation and enjoyment but within the caring role. I wouldn’t have wanted to… I mean the, the holiday that I was supposed to have gone on with my mother, fortunately, even though it was booked online they allowed me to defer it and because again they said, “Well.” I thought, “Well, I could go. I could go while Mum’s sick.” But I had no intention of doing that. That wouldn’t have been right. I would have felt really, really bad about being on a holiday that we should have been on together without her alone or even with a friend, while she needed me.