Cassie ' Interview 16
More about me...
After a period of illness Cassie’s father was diagnosed with cancer of the tongue and throat. Cassie left her job to help her mum run the family business and to help look after her dad. Her father had an operation which meant he couldn’t communicate and often only Cassie and her mum could understand him. Cassie took her father to many hospital appointments, including his radiotherapy treatment of which he was very frightened.
After some difficult times in hospital Cassie’s father decided that he wanted to be looked after at home. Cassie and her mother looked after him. Cassie often felt that her role had been reversed and that she felt like a ‘parent’ to her father. She often found the responsibility of looking after him exhausting, especially when his medication left him sedated.
Cassie found that the responsibility of caring for her father affected her other relationships, whilst she grew closer to her father, she found that she did not have time for herself or her friends.
Cassie felt that the help from the GP, Macmillan nurses and district nurses was very supportive. However Cassie felt let down by the doctors at the hospital and felt confused by the information about options for her father’s treatment from different departments within the hospital. Cassie felt that the Doctors were pressured and did not have time to answer all her questions.
Cassie commented that there was a centre for cancer patients at the hospital offering different services, but there was little information or support for carers. When her father died her mother was offered counselling, but Cassie wasn’t.
When things started to go wrong Cassie asked the doctor if her dad was going to die and was...
And then he had hundreds of things that went wrong. His lungs kept collapsing. I was, at one point, he was in hospital and he was so ill that I thought he was going to die that day. I took him to hospital and he was being sick constantly. He looked like he was dying and I said to the doctor at the time, “He’s going to die isn’t he?” And the doctor said, “I don’t know.” And it was just the realist thing anybody had said to me because we’d always, we’d constantly been told, “Hold on, hold out hope. You can survive it. You can survive it.” And this doctor said, “I don’t know.” And, although it wasn’t conclusive, it wasn’t giving me an answer, it was real and so, at that point, I spoke to my dad and said, “Do you think you’re going to die?” And he said, “Yeah, I won’t get through this.”
And that was such a difficult question to ask and I was really nervous about asking it and a bit sort of embarrassed and, oh, you know, and when he said, “Yes.” I thought, “Oh, right well, if he thinks he’s going to die then, you know, that’s really it.”
Cassie helped her father get on and off the toilet. He repeatedly wet the bed after he had been...
But I think what was probably the hardest, well, was definitely the hardest, was when he lost loads and loads and loads of weight and was in agony and he couldn’t go to the toilet and he had to be helped everywhere and his body was just skeletal, nothing of him at all. And it got to the point where I would have to help him go to the toilet and I knew that crushed him because he was a very proud man, and he was very much a protector as a father and, you know, very strong and I just hated knowing that it was crushing him, that I had to help him go to the toilet and put him on the commode.
And then it got really bad at one point, when he was put on some medication that just completely sedated him and he was just like a different person. It was like he turned into a child and I, although I know he wasn’t aware of it because he was so heavily sedated, when I was having to change the bed because he’d wet the bed for the fifth time that day, it was so exhausting and I ached all over from lifting him out of bed and having to change the sheets and having to re-dress him again and put these sort of pads on.
Cassie had to take her father to hospital for radiotherapy and chemotherapy and found it...
And then one day a man came through and burst into tears and my dad went up to him and took his hand and just said, “I know it’s scary but they can give you some sedation.” And that’s when he told me that he had to take some medication before that would sedate him because it was so terrifying and to help me understand, he said, “Do you want to come through and see what it’s like?” And so I asked the nurses and they said, “Yep, no problem.” And you sort of go through this corridor into this room that’s absolutely huge and there’s just this machine and it just is huge. It’s like a spaceship and they turn it on and all these green lights and it starts moving around and there’s this little bed and my dad, who at this point was probably about eight stone maybe less, sort of climbed up on there and then they just put this big plastic shield over his face and clipped him down. And then, at that point, he couldn’t he looked so vulnerable and I could tell he was scared, they tell you, “You have to leave now.” And so I had to turn away and leave him there for twenty minutes and afterwards he said to me, “Do you understand why it’s scary?” And I just, I don’t understand how he did it every single day for I think it was three months because he kept getting ill and he couldn’t continue.
And, eventually he started his chemotherapy at the same time that I started going to university and it was on the same day. So I said, “Oh, that’s fine, you know, I’ll manage. I’ll take him to chemotherapy and then I’ll pick him up on my way home.” And that was another horrible, it was like a role reversal. I was turning in to the parent and he was the child. I was taking him to hospital and leaving him there when he was upset and scared and frightened and ill and not wanting to be there and I was sort of like the parent going off and leaving him and saying, “I’ll be back later on today.”
And like the whole day I was just worried about him and sort of ringing up and seeing if he was okay and making sure I had all the paperwork and everything that he needed each day.
Being responsible for her fathers life during his final days was a heavy weight sometimes...
He also decided never to go back to hospital for anything and not to be resuscitated. So any of the sort of equipment, the medical equipment that had been left there was taken away and so I’d say it got more intense to the point, where I think I definitely felt more responsible and scared because I thought, at least, before, although I didn’t like it when he was in hospital, at least before if I was scared or worried I could have taken him to the hospital and gone, “I’m really scared. I don’t know what to do.” But at this point I thought, “Oh, I’m really responsible for his life. If I get something wrong, I could kill him” was how I felt, and my mum and I had this very sort of stringent way of how we gave his medication every day and we had highlighters and post-its and everything to make it really organised and particular because there was this fear of getting it wrong and if we got it wrong, then we’d be the reason why he died. So I think it changed to the way that it was even more intense to make sure that he was okay all the time because there was a fear that we’d be responsible somehow or feel responsible for his death.
Sometimes it was so overwhelming and I remember standing over him sometimes, like changing the bed and just being in floods of tears because it was almost like I was full to my neck with all of this emotion that I felt and just all I could do was just let out a few tears and it would just about alleviate it for a minute and then it would go buried again. But there was once or twice when I had to just call I’d call my mum and I’d just have to leave and just go into my room or something for a bit or I’d go and see a friend for an hour but not long enough, I don’t think.
So I, yeah, it got, he got progressively worse and worse and worse and the day before he died, he had a stroke when I was, he was on the commode at the time. I was sat with him and he called me to help him and so I went in and I was just getting everything ready, getting my gloves on and this routine that I had to a tee of getting him all sorted. And his arm just flopped and he fell, nearly fell off the toilet and I remember getting really cross with him because I thought I just thought, “I can’t cope with this. I just need you to just sit still.” And again, it was like the child sort of messing around and just wanting to say, “Just sit still.” And I got really frustrated with him and I bent down and looked at him and I saw that one side of his face had fallen and I remembered those adverts where it says, you know, “If you’ve had a stroke, this might happen. Your face might drop, your arm might drop.” And I thought, “Oh, God. He’s had a stroke.” And I just had this wave of guilt that I’d got angry at him and sort of stood there cuddling him for a minute, calling out for my mum, who was downstairs and couldn’t hear me. And just that was probably the moment when I felt the most alone because I just thought, “There’s nothing I can do and he’s my dad and he can’t even help me and I’m calling for my mum and she’s not around.” And I think that was when I felt probably the most alone, that this is too much. I can’t take any more.
It was frustrating for Cassie to get advice from her siblings about how best to look after her...
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.
Caring for her father took up all of Cassies energy, time and emotion. She rarely went out...
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.
The Macmillan nurse told Cassies father that he could have a disabled parking badge at the...
We were told once by one of the Macmillan nurses that we could have a disabled badge for the car, but that was it. That was all we were told about.
Yeah, that was it. She sort of toyed around with a few other options but said that that was something she could definitely organise for us and she would look into the other things, which I don’t think ever we ever heard any more about.
And did you get a disabled badge?
And was that helpful?
Yes, it was for the amount he was in and out of hospital because the disabled spaces are right next to the door and without that I think we would have really struggled because I would have to go and get a wheelchair, you know, walk from the car park to the hospital, get a wheelchair and come back again and when he was strong enough to walk, I think that would have really tired him out. So yeah, that was helpful.
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.
Cassie discussed what her dad wanted in terms of future care. She found the doctor very clinical,...
Were there any family discussions about a plan for the end with your mum?
Yeah, my mum and I and my dad all sat down one day and said, “So what I’d like.” I said to my mum, “So I’ve had a look at what Dad’s notes are and when he’s supposed to go back to hospital. Dad doesn’t want to go back so Dad, what do you want to do? Do you want to go and have another scan? Do you want to see or do you want to just leave it?” And my Dad, “Yeah, I’ll have one I’ll have one more scan.” And I remember it was the day, one of the days when there was loads of snow. It was January 2009 when there was loads of loads of snow and nobody could get out their house and I called the hospital and got through to voicemail and I thought, “Oh, nobody can get in probably.” And left a message saying, “I just want somebody to ring me and let me know whether my father can be seen.” And we didn’t hear anything back and so I went back to my dad a week later and said, “I’m still waiting, Dad. I’ve been trying to get hold of them.” And he just said, “Just, just let, just let me die.” And I spoke to my mum and said, “I can keep trying.” And she said, “No, he just wants to go.”
So that was when we spoke to the doctor.
And then it was all very sort of clinical. It was sort of like a clinical way of just saying, “This is how we’re going to let him die now. We won’t do this. We won’t do that but we’ll continue to give him like fifty, you know, millilitres of this and continue to give him this pain relief but we’ll stop these ones.” So it was there wasn’t a lot of emotion attached to it really.
How did you feel about that?
I wanted, I suppose I wanted there to be a bit more emotion actually.
I think without there being any made it a bit easier not to break down because it was right, “This is how we do it then.” But I think it disconnected me from the reality of actually, from now on it’s a ticking bomb. It’s going to end and it’s going to slowly start to get worse and worse and worse and he’s going to drift away more and more. And there was something about making it quite clinical that sort of disconnected me from any real or raw emotion or numbed me to it perhaps. And I think sometimes I think I did want to just scream and just say how I really felt and ask my mum how she felt and ask my dad and ask them what they wanted and I kept it all very well packaged and together and organised.
Cassie knew her dads condition was deteriorating and she told him it was OK to let go.
He was probably about five stone, I’d say, at this point. And he’d gone completely grey, from having dark hair, to completely grey and he just looked like a, just did not look like my dad anymore and I hadn’t had a conversation with him for probably about three weeks. I’d said things to him and he might have sort of grunted or made a sign to me but I hadn’t heard him speak to me for three weeks.
So I knew that I was losing him and that day I just I knew he was going to die and so I lay with him all day and said to him, “It’s okay. I know you’re in pain. We all know you’re in pain. We can’t imagine how bad it is, but it’s okay to let go. You don’t need to hold on any more.” And I sort of said this quite a bit to him and talked about what it was like watching him being in pain and how difficult it was to see him in so much pain when he didn’t need to hang on. And then my mum and my sister were there and I kept insisting that nobody left him. Nobody can leave the room because something might happen and so they sort of respected it for a while and, you know, probably rolled their eyes at me a bit that I was trying to be, I was being controlling again, about his care.
Cassie felt it was important that she took the responsibility for registering her fathers death,...
Did you have to sort out all the legal stuff, the death certificates and that sort of thing?
Yeah, yeah. I remember I think it must have been the next day or the day after, there was this just this huge anxiety that was hanging over my mum about, “There’s so much paperwork. There’s so much paperwork.” And I just knew that I wanted to help and I still wanted to have some control over everything. I didn’t want to sort of lose any of the control that I’d had and, probably, filling that gap of where I was sort of like there to help and there to care. So I did the best I could, and I’m not very good with the sort of legal work and the paperwork stuff but because they had the business together there was a lot of and the bank cards and there is so much stuff that a lot of that my sister helped do. And my mum did the best she could and I said, “I’ll register the death.” You know, straight away and everyone said, “Do you want me to come with you? Do you want me to come with you and hold your hand?” And I said, “No, no, no. I’ll go on my own. I’ll do it by myself.” And I think I wanted to have my name on the death, on the death certificate, daughter, [Name]. I don’t know why but I think there was something about me being able to do that and certify that he was gone, that he was dead, that sort of was a bit therapeutic for me, in a way, I think.
Cassie had been helping to care for her father until his death but counselling was only offered...
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.