Caring for someone with a terminal illness

Because all these other consultants actually, the neurologist for example, there’s nothing they can do. You trail twenty miles to the hospital, you see the effort of telling all the things that’ve happened since the last visit, back you go. You kind of have a vague hope it’s a two way street, that somehow you’re contributing to some pool of knowledge, you know, that’s made it worth your while, but actually there’s nothing coming back to be honest. The respiratory people in the other hospital, it’s terrible because you don’t see the same, you don’t see the same doctor, you don’t see the consultant and I think with MND people actually it might be worth looking at something like that. You see a new doctor who isn’t familiar with the file, and you see your partner wasting all that energy, telling that same story all over again and you think ‘what is this about?’, you know?

And you give them the eyes though, you know, that’s what I’m thinking, I’m telling you what I’m thinking, you know
 

The care that she had from the, the replacement consultant on the oncology unit, not, not the consultant who’d originally gone against her wishes, but the, the new one was very, very good and Chris was always very complimentary about the way she was treated by that consultant and the way she was spoken to, the conversations they had, the information that she was given, the help she was given. She had very, very high respect for that.

She was then put in touch with the staff at the other hospital and again, she didn’t have an issue with the care but she felt that it was a little bit focussed on, “We want to make you better come what may.” Or, “We want to treat you the best way we know how regardless of how you may be reacting to it.” The, “Regardless of the actual palliative care that maybe we should be beginning to address.” They were more concerned with the medical outcome rather than the actual care that she was experiencing and I was aware of that because I met with the consultant there as well with Chris and I got the feeling that it was, although she was very nice and, you know, we could understand each other on an intellectual level, I felt that it was just slightly focussed on something that that didn’t seem appropriate to Chris.
 

I went in one day and there was a nurse. She was a she was a proper, what I would call a Sloane Ranger, beautifully spoken, and she came bustling up to me and said, she’d been talking to Donald and she’d been trying to get him to look on the bright side and she said... I think he we must have had the results of the biopsy by then, pretty much, but we were waiting to speak to the neurologist about it because, she said, “He should he should think positively. He should he might be able to go home.” It wasn’t a bad diagnosis. And I looked at her and she said, “Well, actually.” She said, “It’s not a wonderful diagnosis.” She said, “But, you know, with a bit of positive thinking he might be able to go home and get some radiotherapy and it’d give him a bit longer.” And I just looked at her absolutely amazed because that wasn’t what I’d been told.

So but before we could do this, because the surgical staff were still hanging on to him and weren’t ready to give him up and wanted him to have radiotherapy and they had to ask, Donald had to agree that he didn’t want it. They came and all sat round his bed and asked him the question and the first time they didn’t get the answer they wanted, because he was confused sometimes. So they tried again and this time he was very, very definite he, he said he wanted to finish it and, and so it was agreed that he could be moved to a local hospice but, because once again it was Friday, they couldn’t do anything over the weekend. So they got all the paperwork in place and he was going to go in Monday morning. Then there was a hiccup because one of the oncologists at the hospice had said that Donald didn’t sound as if he was ill enough.

So our neurologist re-presented the case. It was agreed that he would go. Saturday, he was fairly, he was fairly quiet because the palliative, no, palliative care hadn’t taken him on because he was going to go to the hospice, that’s right. But he could have, they were advising about his medication so they’d got the medication a bit better and he, he was fairly quiet and reasonably peaceful, wouldn’t eat or anything. And we had the odd raving, when he was cross with us and he couldn’t understand why he was still there and why weren’t we helping him.

And then Sunday, he wasn’t too bad either. In fact, he was he fell asleep on Sunday and so I left early because he was he was asleep and they were going to give him sleeping tablets so he’d go through the night and then the phone went at about ten to twelve. I was in bed and one of the nurses said that his breathing, he was having difficulty with his breathing and his condition was deteriorating and I said, “Do you want me to come in?” And she said, “Well, I can’t, I can’t say that.” So I said, “Well, okay then. I’ll be in a little while.” So I rang my stepchildren to say that, “I will go myself.” And I was getting ready and at first, the stepson rang me and said, “No, stay there I’m coming to get you.” And then my stepdaughter rang and said she would meet us at the hospital. So we got there and we sat with him all night and his breathing was really label laboured but he did rally round and he got through the night.

Come Monday morning, we were still there. The neurologist’s registrar, new registrar, came to see us and they’d said that he was too ill to move. They could move him but it would be very traumatic so I said, “No, no, let’s not. Let’s just leave him where he is.” So they moved him into a side-ward. Palliative care were alerted. They came to see us. They were really lovely. They put him on something called the Liverpool package, which meant they would stop all unnecessary treatm

Going to, and Terry had this fear he didn’t want to go into hospital. So whenever the doctors came out and they’d say, you know, “You should be going to hospital.” He’d go, “No way.” So like he was always at home. But the, this last night, I’d been watching for a couple of days, phoned the doctor said, “He’s not good. Something’s changing.” And because I’d seen it happen a few times with lack of oxygen to the brain it, it’d happened a few times over the last year. That he didn’t know where he was or he’d be talking about things and like and like you’d, you’d when, when a person’s that, you get to know these sort of changes but this particular night I said to [my son], I went, “Daddy’s not good.” I said, like, “I’ve just got this bad feeling. We need to get an ambulance.” I’d come in here to phone the doctor. [My son] had gone into the bedroom and he was going, and [my son] was trying to get him and just sort of keep him alert and awake till the ambulance came. They was really quick and I don’t regret him going into hospital. I always thought that I wanted Terry to pass away here. I’m glad it was taken out of my hands. I am. Because he didn’t like hospitals. He never wanted to go in and I always respected that I knew that I could do whatever I could but when it came to the end, I don’t know. It’s hard to explain. They came and they took Terry in. I stayed there all the time. I never came home and they were so nice to him. They couldn’t have done any more than what they done and part of me was glad that it was the hospital and oh, I don’t know. It’s hard to explain. The decision was taken out of my hands and it wasn’t here. I don’t know if that makes sense. 

Well, the first person to get to my husband, because I was away in France, was my daughter, our, our younger daughter, and she found that he had been admitted on a Friday and here she was on Saturday morning and he was on a trolley. He wasn’t on a ward and he was wearing the clothes that he had been admitted in and, at that point, when he was admitted, he had a urinary infection, so he was actually lying in wet clothes, wet and dirty clothes.

And he had tried to get up and go to the toilet and he wasn’t able to co-ordinate, at this stage, or walk properly, so he had fallen and he’d broken his glasses and gashed his eye, and then that had been put together with a couple of butterfly stitches. And there was food and drink lying about. It had been brought to him but he had been unable to feed himself and so it was taken away again or just left there. And so finally my daughter started to agitate for things to be done and she said, “When, I’m going to take his glasses round the town to get them repaired and when I come back I want to see him on a ward in a bed.” And that’s what happened.
 

He was there for nearly three weeks, by which time he’d lost four stone in weight, because the food went to the end of the bed and if he didn’t eat it, it was taken away and nobody asked him why he wasn’t eating or drinking. But as he had permanent diarrhoea he couldn’t do either. He was on a drip a lot of the time, he was having platelet infusions and anti-biotic infusions and quite honestly, the even the consultant said he didn’t know what to do. He didn’t know what to do. He didn’t know how to cope with where he was and what he was, symptoms he was giving off.

So, eventually, after talking to the consultant, I suggested that he came home because he was getting no further then. He was losing weight. The weight was just falling off his, although his myeloma had ostensibly, according to his blood test, gone. We, we know that it’s treatable but not curable so, obviously, it was hiding somewhere and we later discovered it hides in the bone marrow and it’s very difficult to detect. So you can’t detect with a blood, just a blood test, which is what he has having. He really should have had a bone marrow aspirate but he didn’t get one of them.

So he came home. He’d only been home a few days and he actually, fell out of bed and calling in the doctor, he suggested he went back to hospital, which David refused, point blank, would not go back to hospital under any circumstances at all. Our own GP came in the next day and said, “Will you go to the cottage hospital?” Because we have a local cottage hospital, which the people round here fought to keep, and he said he would and in ten days they’d put nearly two stone back on him and looked after him the way, I felt, he should have been looked after all, all along, and got him back on his feet and able to cope with himself and what he needed to do, dress himself, feed himself, look after himself.
 

And I think you do need to be very clear with the hospital and I think you have to be much more proactive with hospital staff because it seems to me they’ve got a lot more distractions. And the understanding I felt on an acute ward about terminal illness was, was lacking I felt. They didn’t really understand, because we had limited visiting and under no circumstances would they relax that. So that’s why I was quite pleased to get her home because it, you know, I didn’t want that to carry on for too long. Yeah, I, I just feel that nobody seemed to appreciate that that, you know, that how ill she was and, and what she was going to need.  

 My first bad experience that I suffered at that point, was that the surgeon, who was a female surgeon and very, very nice and very sympathetic to us, had said that I and two of Jane’s children, her sons who had both grown up, could go and see Jane in the in the, now, which ward was it? It wasn’t intensive care but it was something similar to intensive care, and although it was two in the morning, she said, the surgeon rang through to the this ward and said that arranged for us to go down and see Jane. We got there and it was quite clear that the young doctor there did not welcome our presence at all. By the way, we were now in an NHS hospital. I should explain that. We’d gone from private, second, second operation was done privately. The third operation, because they’d had a different surgeon, was done in a, in [Town] in an NHS hospital. The young doctor made us all feel terribly uncomfortable. He clearly didn’t think we should be there and he was very hostile and it was very, very upsetting. And I’ve never mentioned that to anyone before but I did feel that, I almost wrote to the hospital and said, you know, “This is not the way to treat people who’ve not gone through what the patient’s gone through but who the nevertheless are going through absolute hell and who’s, who need to keep their strength and their spirits up in order to be able to help the patient.” So that was my first bad experience with a doctor.

The, typical breakdown in communications in our experience was actually to do, where we saw it the most starkly was actually to do with oxygen administration that we….The consultant with a physiotherapist examined Teresa and came up with a treatment regime. We actually got a white board put up and the physiotherapist actually wrote what they had agreed on the white board. So if she came back later and wanted to alter it the consultant could see it and the consultant if he wanted to do the same, the physiotherapist could see it. Because the notes weren’t always available. And we had incidences of ward sisters wiping the white board clean because it didn’t fit in with her protocols, but I’d written it down.

Sometimes the treatment regime had to change fairly swiftly. And sometimes changes indicated were not carried out because we had a shift change and it was not communicated. It wasn’t in the notes and, or the notes weren’t read by the, the second shift and it wasn’t picked up on.
 

He was admitted and had to be taken in a in by ambulance up to up to the hospice, which is only a mile away. And that was a that was a, that was a relief because it just felt so out of control and I did need somebody, at that point, to step in and say, “Okay. I’m taking over now. You know, you’re his wife, just you be his wife.” And I think the three weeks that we had with him in the hospice gave that back to us, in some way. It kind of gave, you know, even though it was, you know, there were lots of people around us and everything, it actually did give me back time, permission to be his wife and not his carer. 

Once we got to the hospice, it was another world. I can’t praise, I cannot praise [the Hospice] highly enough.

Can you talk a little bit about that? Why, why do you feel they deserve so much praise? Can you?

Well they’re a small ward but they are dedicated to end of life care so it’s something they completely understand. Nobody else is calling for attention except those people there with those needs. Having said that, it is extremely busy because everyone has different needs and there’s an awful lot of buzzer pushing.

And my mother had this added complication of dementia. She couldn’t push a buzzer for herself. If she needed to go to the loo she, unlike patients who have a good mind, can’t ring the bell for the nurse to come and assist them and sometimes she would try and get up and go on her own and she’d fall.

And the rooms and the bays all had huge windows with, they’re French doors. You could get a whole bed out. So if someone’s bedridden but still wants to go outside onto the patio in the sunshine, you can push them out.

We had tea parties outside with this other lady. We she had dogs and they were allowed to bring the, brought the dogs in to see her and we had pat dogs coming round. It’s extraordinary. The level of care is absolutely incredible. Also, they’ve got alternative therapies like art therapy, music therapy, reflexology. There’s a lady who’d massage Mum’s feet at night, which helped relax her for going to sleep.
 

Talk about the hospice because some people don’t know what a hospice is like.

Yeah well. I, you, I think I probably had a view that it would be a bit like a hospital but with more flowers. So it’s still very medical kind of minded. It wasn’t anything like that actually. It’s a rather nice building, really quite modern. The décor was nice. The décor was like, like the, like it was people for as opposed to functionality and pushing through, pushing kind of people through a medical process. So you go… it was homely. It’s not going to be exactly what you have home but, there was space. Food was good. For those who aren’t effectively the patient, the food was good as well.

And you can be there for much of the time, most of the time. So it’s not like a hospital and you’re chased away and things like. The boys joined us.

The boys were…now the boys had been good throughout. I say they’ve been good, they…they, it sounds a bit daft but to have travelled this journey they had done remarkably well. So it was, to Fiona and myself, it was obvious that boys are going come to the hospice. There was no kind of, oh perhaps they shouldn’t go.

And at the hospice we could stay the night. The room she was in was a family room. So one night all four of us were there.