Caring for someone with a terminal illness

My brother came every day, came home in his lunch break every day, and would always go and see my dad and would ask questions and would pick Dad up from the hospital if I couldn’t, and take him if I couldn’t, if I was at university or something. And was supportive in that sort of practical sense but, and, and my sister was around but I think because neither of them were living there they didn’t see the half of it. So sometimes I found it really hard and my mum and I talked about this a lot because I know she struggled with it too.

When they would come in and sort of give us a bit of finger wagging of what we should be doing, what we shouldn’t be doing and that was really, really upsetting and really frustrating because they’d sort of come in for an hour and say, “This should be done. That should be done. Why aren’t you doing this?” And it was just so frustrating and so upsetting because they just didn’t know what it was like all the time.

And I think what was quite difficult was that my brother, I think believed that my dad wasn’t going to die and was full of a lot of wishful thinking and hoping that he would pull through and, but nearer the end, I know that my mum got frustrated with that and I just wanted to try and make it clear to him but I think that was just his way of coping with it that it might just get better.

But they did the best they could, I suppose.
 

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.

And did it also affect relationships within the family, maybe between you and your sister and your mum or…?

I don’t, yes, it did because my sister used to come down and take Dad out and have a whole day. I couldn’t do that because I was teaching more or less every day. And she used to say to me, “Well, if you took Dad out all day, you know, he’s a lot better, he responds better”. But when we spoke to the, I found the odd days I did take him out he’d either fall asleep in the car and I couldn’t get him out the other end, or he wouldn’t respond. And when I spoke to the dementia team, they just said, “Your sister’s just been extremely lucky. She’s caught him on a, what they call, the good days.”

And because, even my mum said, because [sisters name] wasn’t around she didn’t see the bad time and didn’t, and basically, didn’t want to know, so it did cause a lot of friction between us, yes. Because if I phoned up and said, “Oh, Dad’s had a particularly bad day.” Or, “How’s Dad been?” “Not been good today.” “Oh, you always say that.” She said, “He was fine with me yesterday or last week.” So there was a lot of not wanting to be aware of the situation and how bad it had got.

That’s the nature of the illness isn’t it?

Yes, and also, as I say, she had recently lost her husband so that was quite raw.
 

Do you, this time of care, put a strain on, on the family?

Yes, it did. It did, our elder son, [Name], was living away from home, at the time, and had been for a had been for a few years and we’d always managed to sort of see him on a regular see him on a regular basis, spend time with him, talk to him regularly. And that became very difficult and I think both [my wife] and I were very conscious that that we were neglecting [our son] and whilst we, you know, we were sure that he understood we still felt, as parents, that that wasn’t good, that that we weren’t seeing him. And, you know, he got he came to see Tim as often as he could do but that wasn’t that that wasn’t always easy. So that was one thing.

I think with [my wife] and me it kind of magnifies everything I think would be the best way that I could describe it. I think the pressure that you feel under, the constant nagging sort of aching pressure that never goes away means that you lose your temper more quickly. And ironically, I think, you know, we found that, whilst we’d try and be understanding with other people, it was almost like we couldn’t keep on putting an act with each other. So there were times when, and I know we did lose our temper more regularly with each other than we than we would have done, but equally, there were times when it was on each other that we could look to for comfort. So again it was it was kind of bitter it was kind of bittersweet.

And I think we worked pretty well in as much as [my wife] stopping work being there all the time for Tim, me sort of charging around all over the place but being getting there supporting there, making sure I saw Tim pretty much every day when he was when he was when he was in hospital. He kind of gave us space as well. I think I think certainly the times when he was, and there was the three of us were sort of, you know, were in a maybe in a room for four or five days, as happened on a couple of occasions, well, there’s been three occasions. I think that’s when the pressure kind of really, really builds and it’s kind of hard to keep things together properly.
 

Did it change your relationships with your husband, your children?

Yeah.

Can you talk a little bit about that for me?

Well, rightly or wrongly Sarah kind of came first, especially when we knew that she was dying, I put her first all the time because I thought that was the right thing to do but… I know the children did, they didn’t suffer but they knew I wasn’t the same mother to them and I certainly wasn’t the same wife. I wasn’t available to my husband in the same way although, you know, Sarah was [Name]’s sister and she came here because they have a very close relationship. And, initially, I was the one that was like, “I can’t do this. You’ve got to be joking.” But, you know, [Name] was like, [Name] [Name] was the one who was, “Come to us. We’ll look after you. We’ll help you. Just come here and it will be all right.” But, you see, as it as it went on and it wasn’t going to be all right he struggled.

He became very angry and that all came out sort of within the relationships within the family and I found that I, you know, I was Sarah’s advocate and I always came down on whatever I thought was best for her. So yeah, it was our relationship, luckily we have a very strong relationship and we’re all right but there were times when it was very difficult between us.
 

I got much closer to my mum and I think we probably formed a bit of an alliance which my brother and my sister probably found quite difficult although I did get, again, a lot closer to my brother and now we’re very close, my mum, my brother and I and I think that’s what brought us together because we saw each other every day and talked every day. For a family that didn’t talk about how they felt before, suddenly it was okay just to say how we felt about everything, which was great. But all of my other relationships suffered massively, friendships, relationship with my partner at the time, work relationships, relationships probably at college, university as well.

Could you speak a little bit about that? How you felt they had been altered?

Yeah, I think because all of my energy, time and emotion was so focused on being with my dad, caring for my dad, he literally, became the most important thing in my life. And I won’t say I neglected my other relationships because I don’t think I could have done it any differently, but the relationship I had with my partner at the time, I at the point, at that point couldn’t have cared less if it was over. I really couldn’t. I just thought, “Well, this is the most important thing to me and I don’t care whether you’re not happy with me not spending enough time with you. That’s just tough.” And my friendships I didn’t, I was twenty four and I just stopped being social and if I did do anything social I would drive because I was worried that if I was called upon to drive to the hospital, take my dad to the hospital, that if I’d had a drink I’d hate myself. I’d be really angry with myself and frustrated that I wouldn’t be able to drive him there. Although there’s plenty of other people that could have done it, I put myself, I burdened myself I think, put this huge pressure on myself that I had to be available and responsible for everything.

And I think that’s probably what the main effect was, everything was my responsibility and so nothing else was as important.
 

Well we’ve got two children, both boys. They’re both at primary school at the time. They obviously knew that Fiona was unwell. And you have a… you’ve got a lot of difficult things going on.

And one of the difficult things is how you tell your children.

Yes. Did you have any help with that? Did anybody advise you?

No, because we dealt with it quite quickly. Dealt with it. Both Fiona and myself were, we were both of the same mind etcetera. We didn’t want to, we didn’t want to hide things away. Neither of us thought that was the correct way of going about it.

But we wanted to…when we told the children we wanted it to be when we knew what it was. So rather than before the diagnosis, rather than saying oh it might be this or it might be that, which I think to a child would be quite scary. I think probably for children knowing what it is that’s affecting their mother was what they needed to hear. So once the diagnosis was there, we did speak to them and we let them know that it was a cancer. I think because we weren’t exactly certain what type of cancer, we couldn’t put a…the pancreatic term to that. But we, we did tell them and it happened in a rather unplanned thought out way. And in, in the fact that I was with one of my sons, [name] who’s the younger one, and [our elder son] was with his, with his mum. And we both talked about the issue and, and described the issue, without actually knowing the other one was doing the same at the other side. And I think it’s probably…well it’s almost a bigger issue to the parent when you do this because I think you have the feeling of the gianormity of what you’re saying, whereas the child is obviously concerned, worried about what’s going on.

But doesn’t fully understand or appreciate what you’re saying even though I can talk for what I said. I said that it was very serious and this could be a very serious thing for his mum. And that there is a prospect that one outcome could be that she may die. So that’s a very difficult thing to go through.

But once it was done that’s, that side of what you’re going through is no longer an issue for you because you’ve done it. And, and there was you to concentrate on, the important things of what you’re going to do and, well going forward from there. And I think it’s…I, well looking back on it, I’m a bit upset at the moment but.

Would you like a break?

No it’s ok. I think it’s probably for us and I can’t speak for other people, it’s the right thing to have done. And I think for the boys and I’m saying us as in the family, the four of us, I think that was the right thing for the boys as well.

They knew, they could give it name. They could, well possibly not relate to it as well as Fiona and myself, but we had a kind of a common cause we were up against. So that was difficult.

And how were the children when you told them about it?

They were upset. I found with the children, I think children react probably in a different way possibly to adults. I think it hits them and goes hot and cold. They can be very upset one moment and then playing with their toys the next, which is quite surprising I think because for Fiona and myself we were feeling like we had this huge pressure all the time with us.

Whereas for the children, they seemed to be able to jump in and out of it or go in and out of it, in a different way to the way that we were feeling. But we’re actually hugely pleased that they could play and that they could have fun time.
 

The other thing you asked me about was the children, wasn’t it? The children, my nine-year-old now, and to a degree my eleven-year-old are very different children. My, the boy’s a boy, typical boy. My girl’s an academic eleven-year-old. She, they both went, even though neither of them liked it, to see Mum regularly. Latterly, [Name] understood what was happening without me telling her. I even think the nine-year-old did actually. But in the early stages, when it got really hard for them, one thing that did help, and I’d advise other people to do, was Mum’s consultant said, “Can I talk?”, you know, “Do you want me to talk to the children?” And he was brilliant. He gave up his time, I don’t know if he does this very often, and he sat and he explained, in a language that they both understood to the level they understood brilliantly about what was happening to Mum’s brain, and drew pictures. And he did it in, not a light hearted way, but in such a way it wasn’t scary. My daughter was worried that she would get it and I would get it, which is a genuine concern, isn’t it? And, indeed, there is a quarter of people, potentially with MND that is, that could, that is hereditary. Mum, we’re 99 per cent sure she doesn’t have that one because there’s nobody else in the family. But it was, you know, she was able to ask the expert the questions and he was able to explain. And he also told her at the time that there would be no cure in my lifetime, but in their lifetime they might find a breakthrough, perhaps probably not a cure, but a breakthrough maybe to help. And I think she’s taken that on board, because actually, yesterday she did a sponsored silence at school and has raised 150 quid for research. So that’s a practical way she can help, because that’s the way my daughter thinks. So that experience with the consultant was excellent.

Since then, you know, in the months and years, actually, that followed that, I do feel I will never know if I did the right thing in taking them as much as I did. I kind of took them once a week, sometimes twice, you know, birthdays, Christmases and all that. And there were times when I’m sure they didn’t want to go. But I hope they can look back and know why I did it. Sorry, I always cry about the children.
 

So what did you tell the children all this time?

They, our son was only four months old when she was diagnosed.

So he was largely unaware. My daughter was three, and we told her that it was called cancer. We told her that there was a lump in Mummy’s tummy. And that she was going to hospital to have medicine to try and take the lump away I think. You know we didn’t want to give it any funny names. This is where resources, such as, well would I, I don’t know if I should mention names but a website, Winston’s Wish, was useful. And also the hospital were good at giving literature as to you know some of the basics, and where to find information. And I thought it made sense to me that you shouldn’t make up strange names or, or analogies, or metaphors for this for a child, because that can actually end up you know sort of confusing things. So we just told her honestly.

And so she understood, you know the way children do. They, they take everything on you know as it is so she understood why Mummy was being sick. She understood why Mummy had to go to bed. She understood why she couldn’t go in and see her. One time or I think one or two times she came in to see Karen in hospital because we didn’t want her to be scared. You know she knew that Mummy went there and that she came back different, so we wanted to take that fear away.