Caring for someone with a terminal illness
Ways of coping and finding solace
John felt supported by his faith, even though at times he struggled with God. He thinks his faith...
And you have talked several times about your faith. Did it impact on your faith?
Well, I think I was still struggling for a while about why all this was happening to Joyce because she was a mother and a grandmother and even expecting to be a great grandmother and so she was very much needed to, was involved in supporting that family. And so I think I had a bit of a struggle with God about why this had happened to her but again, you see, we did have support from our, our minister at church and our Christian friends in terms of support and prayer. And I suppose really I didn’t really start facing up to it with God until after she’d gone and so that, that was a that was a really tough time but it’s a time that I’ve come through.
So at that time, do you think your faith supported you or was a challenge?
Yeah, it did support me. It did, yeah, yeah. I think all the time I was conscious that God was with us even in these times. That he wasn’t leaving us alone yeah.
Are you more involved in your faith now, would you say?
Yes, I think so. I think it is more rounded because I mean I’m now able, more in a position to discuss these issues with people who want to talk to me about it. For instance, I work on the chaplaincy team at the hospital so that involves me in making communion Eucharist rounds on a rota basis and so that does open up all kinds of opportunities to talk and to help people.
I think probably, I am closer to God now than I, than I had been if I look back but I think, on the other hand, I’m still very human and still very up and down. It’s far from perfect and it won’t be in this life.
Its not a sin to stop caring for ten seconds. Taking a ride in the car usually helps Lesley to...
Susan helped her mother feel less confused by making shorter sentences and giving simple if not...
And to begin with I didn’t really understand how to cope with things and I got very angry but then I realised that they couldn’t help it and so it became easier to cope with, and when she said things or did things or got angry. She did get angry and got a stick and, “[rrrrh]”, you know [laughs]. And so the best thing was to go out of the room for ten minutes and when you came back in again she’d say, “Hello. I haven’t seen you today.” And you’d know, you’d realise that she hadn’t remembered that she’d got angry so that was the easiest way of coping with that. And they only get angry really out of frustration so it’s a funny thing really but she was very happy and that, that is the thing that I think was nice and I shall always remember that. And the first bit of anger that comes in the early stages goes and they become calmer. So if you can get through that bit they do eventually, sort of get much more calm and they’re easier to cope with in a way. And they can’t remember how many children they’ve got or what their names are or anything like that. So it’s almost best not to sort of push that. It’s and also to make short sentences because they, they can’t really remember what you’ve said if you make the sentences too long.
So I learnt to make much shorter sentences and I also, when I gave them a tray of food, my mother, I used to leave it there. I didn’t take it away after she’d finished because that was an indication of what time of day it was and it helps to give them some idea of what time of day it is otherwise they don’t know whether they’ve had breakfast or what time of day it is and that, I found that helped a bit. She had more idea. I’d leave it there quite a long time. And also I found she couldn’t drink very easily towards the later stages so we gave her hot drinks instead of cold drinks because they can absorb hot drinks better and more easily and so we used to give her lots of tea and she enjoyed that and drank that quite easily.
Yeah, so we learnt as we went along. And she loved television but she couldn’t understand it but we used to put on things that were funny and she loved that, comedians and things. Once I went in and she’d got herself up in the middle of the night and she was watching pornographic sort of television and enjoying it and she said, you know, this man was in the nude and of course, she used to paint them in the nude. So she didn’t look upon it as a pornographic thing. She was looking at it as his form and, you know, everything. I thought it was hilarious really so [laughs] so we turned the television off. We put her back into bed again until the morning [laughs]. So you do get some very, very funny things happening and I think one has to look at it that way, you know, and not get all het up about it.
Because it is, they are struggling really to cope and best thing is not to draw attention, I think, to any mistakes they make, don’t correct them. I think it’s better to just let things go and be jolly and happy about things and then they feel happy. It, you know, goes, helps them really. But she was very happy and I think that’s the memory that I will remember. We used to put her out in the garden in a chair so that she could watch everything and the flowers and the birds and things. But as soon as she wanted to go to the loo she went back in the loo and then she went back to bed again so [laughs] that was hopeless in the end because you know, if she couldn’t remember that she’d been out in the garden so she wouldn’t go back out again [laughs]. So in the end, we gave up on that one [laughs].
And we took her over for Christmas and she enjoyed everybody sitting there and seeing everybody but on the way home she couldn’t remember. Sh
There are practical tasks to be done, and being a carer means that becomes the way you express...
How do you think, how do you find a way to cope with that?
I think I kind of, I think, I don’t think looking back on my life that I’ve been a very good caring person in terms of, I don’t mean as a parent but as, say with elderly relatives in my family where I’ve had that opportunity to be more caring. And now, you know I have to be, I have to step up and do this thing which I never imagined I’d do but I, think you get the resources to deal with what life chucks at you because life can be shit basically, and I think somehow you do cope, well you do. And, what did you ask?
How you cope with the emotional side of it?
Oh yes, by really just practically, just doing the job, and, it amazes me really the sort of things you get used to doing that don’t offend you or are no difficulty. It’s not just because he’s somebody you’ve lived with for thirty something years and, you know, you’ve had all that love, and all those memories and all those experiences together. It’s just that on another level here’s a practical task to be done and the doing that, has to be the way you express the love or the other emotional side because really, it’s quite a delicate line between falling down a big hole, by expressing the emotion and then just, you know, being useless and actually doing the job, you know, and keeping the show on the road a bit, your show and, and Bill’s show too.
I think that’s what I think.
And the other thing I would say is how we cope in our lives it’s kind of to try and set up milestones, achievable ones that really worked and my daughter got married in January. That was hugely important to be, have Bill be part of that. And you know, I think adrenaline carried him through actually then the total collapse afterwards was something else. But, and then to have a retirement party when he reached his sixty-fifth birthday with friends and so on around us was another good milestone. Every other month or so, our son comes back from the States to be with us. Those are the sort of… that we keep in mind, that keep him going I think.
When Henry found out that his partners cancer might be terminal, he felt all he could do was...
Well, that was when I, through looking at it in the, on the internet I sort of realised that it was potentially terminal. But I think it was the first interview with the oncologist, just after her three operations, when I sort of thought it didn’t sound, I think Jane’s friend came to see her in the ward or, well, in her room that, that evening and I went out to see her and I said, “I can’t believe what I’ve just heard. I think he’s told, just told Jane that she’s got about a twenty five per cent chance. He hadn’t said it, but sort of that’s what I think I’ve just read into it.” And, “But,” I said, “Don’t for God’s sake tell Jane because she seems to be, you know, thrilled that she’s making such good progress.” But that so, I mean very early on I sort of read into what they were saying that it was very bad.
How did you cope with that?
How did I cope with it? Just gritted my teeth and got on with it. You know, there’s nothing I could do other than to give her all the support I could and you know, make sure that she was getting, where possible, the best possible treatment. But I’m not a sort of, I don’t [laughs], I just get on with things [laughs]. I deal with things in my own way so I did, just sort of gritted my teeth. I mean I was going through a sort of private form of hell, you know, you sort of, did sort of dream up stupid things to sort of, keep you going, like sort of, I’d walk back from the station every night and I’d say, “If a number 36 bus doesn’t pass me before I get back home, Jane’s going to live forever.” You know, it’s that sort of stupid thing that you go through your mind, you sort of make up these silly mind games to sort of keep you going, and then the 36 bus hasn’t passed you by the time you got to the front door, you think, “Yeah.” You know, I know it’s ridiculous but it’s those kind of games I play with myself that kept me going. And, and also the determination, well, to see Jane right and also to, I wanted her children to know that, who also had been very supportive, to know that they were, that I was sort of there for her and doing my bit. And just because I’d had sort of a relative short, very few, very good years with her didn’t mean that I was going to desert her when she needed me. So that was very important to me for them to know that I was there for her.
Cassie found it helpful to have a space where she would not be judged for the anger she felt.
If we talk about coping strategies, did you feel you had any coping strategies for you?
I had, I was already seeing a counsellor and through my course that I was doing and that got me through a lot of it because I had a lot of anger towards the hospital and I had a lot of anger towards my dad, actually, for neglecting his body. And I think the main coping strategy for me was being able to have somewhere I could go to talk about it where I wasn’t, what I felt I might be judged for being angry at my dad. I was able to go and be angry at him.
Yeah, I think, realistically, that was probably the only thing I had. Kept a lot of it bottled up I think.
Georgina found the bereavement counselling provided by the hospice very helpful, particularly in...
After your mum died, did you have any counselling? Did you get any support?
Yes, [the hospice] provide bereavement counselling, which is on-going. I’m still a part of that and I find it useful, particularly in the early days when there wasn’t a lot that made me want to get out of bed in the morning. I was in a very, very sort of small place where nothing mattered and it was nice to know that there were people who would just let you whitter about it. Go over it again and again, talk about anything else, who didn’t judge you. Who weren’t trying to tell you, “This is how to grieve. This is how to be bereaved. This is what you need to do.” But would just let you find your way. Possibly, there were little nudges that I didn’t even notice but these are very skilled people so I imagine there were, but they were all good and it’s still good.
It’s nice to have that secure place. I know that for people who are unlike me, you know, completely, fully able or people who are elderly so I have a friend who they’re seeing. She’s an older lady and they go to their home. So it’s a, you know, it’s a comfortable environment. I like their room there. It’s just a quiet little room where you just sit and it’s your space. It’s your time. And there’s no judgement and it’s nice.
Did you have any counselling prior to your mum’s death?
No, so it was afterwards.
Yes, but, having said that, because all of the resources of [the hospice] were available to me I probably, I had a kind of counselling that wasn’t official, if that makes sense. You know, I had the consultant. I had the nurses. I had the other staff. Most of the other people were trained. They know how to look after you even if you don’t know that you’re being looked after and certainly, with, with people like the chaplain. There were probably conversations that happened that would have considered counselling in a real sense but that I wouldn’t even have noticed. So I think because I was in a slightly unusual environment I probably did receive it without knowing it.
Georgina is comforted by the thought that her mother is in a special place now and she feels...
Did you find that faith has sustained you during caring or subsequently, since you lost your mum?
Well, my faith is very similar to hers. Slightly potted but it’s very strong and I found that, yes, it, it helps me in the sense that I just know that she’s in a special place now. I don’t have a fear of death that I had before, which is very strange. I think it’s important to have something to believe in, if you have no faith you can believe in other things. There are other ways. It’s quite comforting to know that for us, there is a God however we choose to believe in that God and I know it, it gave her something that you can’t really put a finger on and for me, I would gain any comfort knowing that she was feeling comfort and happy because even if I hadn’t shared her belief, I would have been happy sharing it in a sort of slightly more distant way.
But I do know that the night that she died I felt that there is definitely a presence.
And I was blessed with having her in my arms when she died. So it was what she wanted.
And was that good for you to know that you were able to be there at that moment for her?
It meant so much to me. I was I was worried that I would be denied that by circumstances. Not everyone, not everyone would want it but not everyone would be given that chance anyway.
But it was beautiful because what I’d wanted and what I truly believed happened was that she went from one pair of loving arms, straight to another. They say you need to let them know that it, it’s okay to die because she was holding on for me, to an extent and I thought, “How, how do I do this?” This again, was earlier that evening and because my father died two months before I was born and I knew she always missed him I said to her that, I’d been a bit selfish having her all to myself for forty six years and maybe she’d like to go and play with him for a while. So I know who was waiting.
After his father's death, David became a patient carer advocate. He is now advising various...
You spoke briefly about your life since your dad’s death. Would you like to say a little bit more about how it has shaped your..?
About a year after my father died I was invited to a conference at a local university where patients and carers of cancer patients were talking about their involvement in cancer research and I was intrigued that as well as having some input to the way that cancer services were delivered that patients and carers could have some influence on the research world. So I went along to this conference with my wife and we joined the local group of patient carers who were involved in cancer research because we were interested really and that we hoped that our experiences would help to put something back that would influence things in the future for, for future patients and carers.
As a result of joining that local group I’ve since then been drawn into groups at local levels and at national levels within the country and that has led to me being chair of a couple of these groups, one national, one local group and being involved in several, many research projects around the country aimed at helping to improve the lot of cancer patients by offering them evidence-based, the best evidence-based clinical therapies.
It’s made a massive difference to my way of life. In fact it’s pretty much become almost a fulltime job and I spend most of my time now travelling around the country attending meetings, getting involved in research projects. I’ve even actually travelled internationally recently as well. I’ve been to a symposium. I took part in a symposium at the British Embassy in Tokyo recently and I’ve just come back from Washington DC in the United States of America where I visited the National Cancer Institute to give some input to a session about rare cancer research at the National Cancer Institute in Maryland. So it’s made a massive difference to my life.
What I hope is that people like myself who are patient carer advocates working in the cancer research world can help to make a difference to enhance the research as much as possible to just add the patient carer point of view to that research, to make sure that the kind of questions that are being asked in the research world are the important questions from the patient carer point of view. Is the question, the right question? Are the inclusion/exclusion criteria in the research project the right ones? Is the information that’s been given to patients and carers of the correct standard and is it meaningful and is it useful? And getting involved in that way has helped me to come to terms with what happened to my father and to make sure that there’s some benefit as a result of his experience that can be passed on.
Last reviewed December 2017.