Caring for someone with a terminal illness

It’s very difficult, it’s just the pain of the loss. That’s the way I feel now, but I’m three years, three and a half years on and contrary to the fact that I feel quite emotional, things have moved on. We go forward. We do look back. It’s like, with the boys I, we constantly talk about Fiona or their mum. But it’s slightly less now. Before it was like always a topic of conversation. Now it’s less so and, and that’s really good in some respects because we don’t forget, but it’s not monopolising what we’re doing. Because I think that would be, that wouldn’t be too clever to do that. But the boys are doing well.

Good.

I’m doing quite well. Even though I’m crying at the moment [laughs]. And, yeah, we’re, we’re going forward.

But for three, six months afterwards, issues regularly but I just assumed that was kind of normal. I say regularly, I don’t mean throughout the whole day there was tears, but I could be fielding something you know, there wasn’t a period in those first three, six months where I’d think, “Oh, they’re totally over it and they’re, it’s just, you know, it’s normal issues on their mind.” And I could be fielding a, a sudden concern if they see a photo or there’s a thought, there’s memory or something and still now it’s only actually about a week ago [our elder son] who’s now 12 had a moment where he was missing his mum.

Yeah, I’m sure.

And it’s, it is quite interesting because if you’re mind isn’t open to that and ready to link with that i.e. you’re focused on doing something else you actually have to force yourself, because you’re no longer, you know, constantly thinking there, you have to be able to flip to the, to the other person quite quickly to kind of capture that. So, well, we’re three and a half years on, so, but by no means has this a monopoly on our life. It’s just very occasionally now.

Yeah. Did Fiona leave any memory boxes or anything like that for the children?

We put memory boxes together.

Oh, that was nice.

So, yeah, that is good. I mentioned [our elder son] being a bit unhappy, he went to the memory box so that’s three and half years on he went there. I wasn’t aware of these things, it was my sister who told me. So Fiona didn’t sort of want to, she didn’t have this in her mind, but after her death my sister mentioned that. So we had two boxes made by a local, local chap, very nice boxes. And they’ve got a whole load of memories.
 

I managed this quite well because I felt that I’d lost my dad when the dementia set in when he was about 87, because my dad was a very well-travelled guy, very good at finances, he’d helped me an awful lot over my life and a great conversationist but, as I say, when he first got the dementia he couldn’t talk for great lengths. He stopped reading the paper. He was an avid reader of books when he was, even in his eighties he would get four or five books out the library. And that all stopped. And little things like we’d go in and see he’d got the newspaper upside down, and if you questioned him he’d get really adamant about it.

But my sister, it was difficult as well because when we were growing up I think, if families do have favourites she was definitely the favourite and not that it mattered to me, and I think my sister, unfortunately, lost her husband of thirty years only two years before my dad died. So for her it was a huge thing to have to happen and she didn’t deal with it very well. If I can say anything, I’m actually quite glad my dad’s gone because he’s out of that awful pain, and I knew there was no way of him coming back as the dad I remembered. And if you reach 89 and you’ve had a wonderful life until you’re 87, and I do the same, I shall be so happy.
 

And I said earlier, really he’s, he’s not my husband anymore. He’s a poor man who’s very ill. Okay, one I know extremely well but he’s not, the character isn’t there anymore really. The persona’s not there anymore.

And that’s been a gradual process, presumably.

It’s been gradual. As I said to you, for years now I’ve had to live a day at a time. On the one hand, I think if only he could just fall asleep and not wake up it would be wonderful for him and for me because I don’t know that I’m going to be able to cope.

Anyway, he cannot contribute anything to his own life let alone mine or anyone else’s. He can smile. He can make jokes, I can, I can tease him and he’ll smile or he’ll, he’ll try and, he always used to be able to make me laugh, you know. All during our married life I would, you know, we’ve had, we’ve had rows or arguments and but it would always sort of never ever can take, you know, continue day after day. It was, oh, what’s the word I’m looking for? Sulking. Well, he could sulk but not for long. And, and we’d end up laughing, how stupid we’d been or something, you know, and he had a nice sense of humour but that’s gone.
 

I think what was difficult was in the first early stages was a simultaneous sense of presence and absence. I mean she was present in everything in the house you know because you know our lives, our relationship kind of entered into all… everything had a memory attached to it. And had she walked in the door at that point I wouldn’t have been surprised, you know she was still very present to me in my mind and my imagination. But of course she was also very absent.

And the sense of her presence often brought up a sense of absence and it became very, I was very confused.

So it was really important for me to talk about those things. And the hospice continued the bereavement counselling once a week for me and for I think twelve sessions after, after she died. And the counsellor was very good and that was very useful. She gave lots of useful feedback. She was, she, she took both, she, she had a very nice balance between taking a therapeutic approach where we were talking about my feelings, how I how I was reacting to the circumstances. And practically, sort of practical counselling is what you … this is what is available to you as well can I do this, she was actually also offering to help as well and that was very supportive as well. And because it was also the hospice where Di had, had been every week and I’d been to take her and visit her there, there was a sense of continuity about it which was good.
 

Did you did the family have support, you know, the Macmillan nurses stopped coming, the equipment goes and there was the hole that you referred to. Was there any professional support to help you climb out of that hole?

No. I remember that my mum was offered counselling or somebody to talk to by the nurses afterwards and my mum said, “No, I don’t want to talk to anybody.” But I wasn’t offered anything and none, none of the rest of my family were. So it was just, “Oh, this must be so terrible for you that your husband’s died. Do you want somebody to talk to? You must talk to somebody. There’s somebody there for you to talk to.” And my mum says, “No, I don’t I don’t want to talk.” You know, this is on the day that he’d died so she wasn’t ready to talk to anybody [laughs]. And then I think probably, a week later or something they’d pop round to see you and collect any medication that’s left over and they said again then, “You know, this must be so terrible. You’ve lost your husband. Do you want to go and talk to somebody?” And my mum said, “No, no. I really don’t.” But that was it. Nobody offered me any support or the rest of my family. So that that was it. It was very much the equipment’s gone, the medication’s gone, the visits are gone, all the notes are gone so that’s that done. Next. It was that was what was quite difficult I think.

How did you get through that period?

I was very angry and I think with what we were saying earlier about my organising and what I could organise that I understood I think being able to be very specific and very organised and keeping myself very busy got me through those, those empty holes, those empty parts, and a lot of the anger I tried to alleviate by writing to the hospital but I was very polite and didn’t say that I was angry. And I think I just got through it really. And when I look back now, I do think, “How do you, how does anybody get through it?” But you I just go through it.
 

And it’s a long, long process, I mean it’s six months now since Di died and really I mean that’s really only a very short time. So I’m still living with her in my head and it’s like I’m still, she’s still present in the house. That, that disturbs me, I’m not quite sure what to make of that. I think it pulled a plank out of my belief system as well when she died. Somewhere deep down there’s some foundation which I’d kind of built a belief system because I had no belief in life after death at all. And yet for me somewhere she’s still around, in, in a kind of space that goes beyond what’s true and what’s false you know. It doesn’t matter, you know it’s like another universe in my brain that’s just opened up where she exists. And I have a photograph of her in the front room and I come in and always talk to her when I come in during the day. Yeah and that’s, that’s okay, that's fine. That's a way of dealing with it. That’s a way of dealing with it you know and while I’m talking to her she’s real and she’s present and when I’m not she’s not, she's not. You know, it’s strange.  

I just have to find my own way of being on my own and that has been the hardest thing for me. That is hugely, hugely difficult. I can’t describe, it’s like climbing up a precipice actually, learning to live on my own without reference to a family.

If you were talking to somebody else who was starting on your journey, what advice would you give them about that, living on their own now?

Actually, well, I find that my days have been built up in little ways. I don’t try to bite off huge chunks. I just bite off, I take little nibbles and so I try to I tried initially, to get through one day and then I would say, “Okay. That that’s one day.” It’s like turning over the pages of a book and I felt that it must be that because everybody dies, eventually, it’s a natural process so it’s got to be part of life and so I assumed that I was in a process and that if I just went with the flow, that things would evolve, that I didn’t try to control everything because it was beyond my power to do that. So I guess I lived one day at a time. I and then, you know, after a while, you are able to look back and see that you’ve come that far. When I got through the first year, I thought, “Oh well. That’s a year.” You know, and now I look back and think, I’m kind of surprised that I’ve survived nine years going on ten.

And looking back now it’s been a journey, how do you see yourself now?

Actually, I see myself as, as quite changed in, quite radically changed in many ways. I guess I was a huge perfectionist and a huge agitator and I’m not now because I’ve got a different perspective because this has happened and it was huge and I know that what is left is the last part of my life now. And I’m better prepared if you like, in that way, that emotionally I know what the score is. I spend a, a certain amount, quite a lot of my time trying to make this better for other people, to make this experience better for other people. But I, I feel that it’s up to me how I survive. I am in survival mode now. I don’t have that very rich tapestry of life that I had before. That’s no longer my, but I can survive badly or I can survive well and so I try to survive well. So I do, I do build into my days a certain amount of social activity, so that I get to see other people and I know what’s going on in the world around me. And I try to do interesting and enjoyable things. But nothing is the be all and end all anymore. If I had to relinquish it and pick up somewhere else then that’s what I would do.