Interview 35
More about me...
During this time, she was visiting the hospital every day as well as keeping everything as normal as possible for her daughters. She had two weeks off work, and had a lot of support from her colleagues and husband.
With hindsight she felt that relatives of intensive care patients would benefit from more support. She has sometimes felt angry about having very little support after her mother was discharged from hospital. Shortly after her mother's illness, her father died. Since then, she has changed her working hours. Her mother's health is good and she has regained her independence.
Her husband was very supportive when her mother was ill and they grew closer as a result.
Her husband was very supportive when her mother was ill and they grew closer as a result.
Was your husband working throughout that time?
Yes. He took a couple of days off initially and one day when I had a bad day and came home from a visit and cried, he came home. But apart from that he went to work. He was just there at the end of the phone if I needed him. He could get home quite quickly. But, as I say, we really tried just to carry on as normal.
Was he quite supportive or was it difficult because he didn't quite understand how ill'.?
He was actually very supportive. It brought us a lot closer together. Generally I keep things to myself. But no he was very supportive and he actually said, one day when my Mum seemed really bad, he said, 'Oh she will have to come and live with us.' So I wasn't even worrying about how will I broach this subject, if need be. You know he had actually suggested it. No he was very good. Didn't cook. He can't cook. So he didn't take any of those responsibilities on. But he was there if I needed him, which was very good.
Her colleagues were very supportive and going into work helped take her mind off intensive care...
Her colleagues were very supportive and going into work helped take her mind off intensive care...
Were your colleagues supportive?
Very supportive. Yes. Very supportive. We had actually had a bad year at work. A number of people had had tragedies. My close colleague, her father had died of a heart attack in the June, and then my manager had a car accident that she was lucky to escape from. And as I say my managing director had had a serious accident, so actually 2003 was a very unlucky year for us all and I think, because we had all suffered something, they all knew what support I needed. And because I have been there a long time and I don't take time off sick or whatever, I am quite a loyal employee, there were you know exceptions made, rather than just three days compassionate leave. I was given two weeks off and that really helped. And then I found going into work I didn't dwell on things. You know I got on with my work. I put on a happy face and that for everybody I didn't take it into work with me. So that I think helped a lot as well rather than, like I say, sitting at home or sitting in hospital for 24 hours a day, just thinking about what was going on really, and what could happen.
She felt very alone in hospital as she tried to get medical staff to treat her mother's pain, and...
She felt very alone in hospital as she tried to get medical staff to treat her mother's pain, and...
It was about 11 o'clock and we all went to bed. Didn't notice on our answer phone that there was any messages or anything and then in the middle of the night we could hear it beeping, telling us that there was a message. We hadn't heard the phone ring. And my husband got up and was playing the message and I was semi awake in bed and I could hear my Mum's voice, saying, 'Help me, please come and help me, I need your help. Please come round.' And then another message exactly the same pleading with me to go round. And then another message, which was the local out of service doctors centre informing us that my Mum had been taken by ambulance to the local hospital.
We quickly phoned my Dad who lived nearby and he came over to sit with the children, because we didn't know how long we would be. And we drove to the hospital to find my Mum in the casualty department, in a lot of pain. She'd been violently sick and had very severe stomach pains and was waiting to be seen to. A few doctors came and they all kept asking the same questions and we kept telling them what had happened and they gave her a little tablet, a painkiller tablet which didn't help at all. She was still in a lot of pain. And we just felt that we were very left alone in casualty. She wanted to go to the toilet and I had to go and get her a wheelchair and try and take her to the toilet. Nobody, they were so busy, nobody was coming to see to her. She was screaming in pain.
Eventually we were told that they were going to take her for some x-rays. They couldn't diagnose just by feeling her what was wrong. So they'd take her for an x-ray and a porter came along eventually and said, 'Oh I am here to take you for your x-ray. Oh you're notes aren't here.' So he disappeared for another few hours. Nobody came again. She was still left. I kept going and saying to someone, 'Is there anything else you can do, she is in so much pain', but they were very busy and we were just left to cope with it. Eventually it was about 6 o'clock in the morning and because we realised there was nothing we could really do, my husband came home to be with the children when they woke up. And I stayed at the hospital and we were there all day and eventually she was taken for a scan or an x-ray and they bought her back, still not really sure what was wrong and had to transfer her into a cubicle used for resuscitation. That was the only spare cubicle they had. And again different doctors came and asked the same questions again and again.
And a doctor came along and he tried to sit her up. She was laying down and he tried to sit her up and she was in absolute agony and they decided that they were going to keep her in over night and do some exploratory work on her to see if they could find out what was wrong. So she was transferred to a little bed in the back of casualty, where I then left her and I came home to get some clothes and see to the children and explain that I was just going to take Nanny's clothes back and then I would be home, which I did.
As well as visiting ICU she tried to keep life as normal as possible for her children and,...
As well as visiting ICU she tried to keep life as normal as possible for her children and,...
During the time that your Mum was in hospital, you went to the hospital every day?
Yes.
And life revolved very much around what was going on in the hospital?
Yes.
Did you feel that you had any support yourself?
Not really. But I don't, I didn't really feel I need support. I was so busy, I think if I hadn't have had the children it would have been a completely different story. Because I was so focused on keeping their lives normal, I still took them to their after school clubs and swimming and, as I say, did things for Halloween and that. So life was still 'normal' for them and then we just visited Nan, it was just a part of our life now, just a part of routine each evening. But if I hadn't had the children then life probably would have stopped. You would be so focused on that, whether I would have felt like going into work I don't know. I was still going into work, which took my mind off things. But I think if the children hadn't been around, it would have been a different matter. I would have been a lot more focused on being at the hospital and probably then would have thought I need support. But I just became this mad woman fuelled by some magic power to just keep rushing around and going and doing everything that was normal really for the children.
At the time she desperately wanted to know if her mother would survive but doctors couldn't tell...
At the time she desperately wanted to know if her mother would survive but doctors couldn't tell...
Eventually somebody came along and explained she was very, very poorly. They thought she had pancreatitis and that it really was touch and go. And my first questions was, 'Is she going to die?' I needed to come back and talk to my children and they couldn't promise me yes or no. Couldn't answer me. It was going to be a roller coaster ride, she is going to get worse, then she will get better and then she will get worse again and just really the next twenty four hours were crucial.
It is very hard because you want the doctors to give you a sign that things are getting better and looking back I can see why they don't. At the time that was very difficult. I wanted to know 'yes she is going to live' or 'no she is not'. And I can see now why obviously they can't give you that answer because anything else could go wrong and it is just, just really trying to accept that. They don't know really. They are just working their hardest to make things all right but other things can still go wrong any way. And to take each day as it comes. And it is going to be a roller coaster. There are going to be good days and there are going to be bad days, but just because you take a step back doesn't meant that the end result is going to be a bad result. You may get there eventually. But really you have to take each day and if it is a good day, great. If it is a bad day, don't dwell on the bad day so much. Don't feel that is a real set back because it may not be at all.
She was devastated when her mother had to have further surgery because she could have died during...
She was devastated when her mother had to have further surgery because she could have died during...
When I got there [ICU] I was called into the relatives' room by a doctor who explained pancreatitis to me in detail. And she told me that Mum was very, very ill and there was still a very high chance that she was going to die. Which really was a shock because I had seen her getting, what I thought better, and then to suddenly be told that again.
Went back into the ICU to see Mum and a consultant wanted to speak to me and he took me into the office there. He explained that they thought that the enzymes from her pancreas had leaked into the cavity in her stomach and that they were destroying her stomach lining. They couldn't get to the affected area last week to operate but they were now going to try and remove the affected tissue. And if they couldn't remove it, then Mum would die. It would kill her. Then they asked me for consent for tracheotomy which they explained, this was a high risk procedure, that she could actually die from doing this procedure. But because I had seen how uncomfortable she was with the oxygen tube going down her throat, I knew that I had to take that risk, it was to make my Mum more comfortable. You know, even if it was a risk of losing her. So I gave permission. And that was really difficult knowing that you are giving permission for something that could effectively kill her really. When I got home I was really, really upset and phoned my husband and he came home from work.
Although her mother had good and bad days, she was overjoyed when she saw her sit up, smile and...
Although her mother had good and bad days, she was overjoyed when she saw her sit up, smile and...
Day eighteen was incredible, walked into her little bay in ITU and there she was looking at us and smiling at us. She recognised us and I just burst into tears and said, 'I have missed you so much.' She was fully conscious and when I say smiling, it was more with her eyes rather than her mouth at the moment. And she nodded yes, and no, to our questions. She squeezed [my older daughter's] hand. She smiled at them [two daughters]. It was excellent and I thought it was one of the best days of my life. It is lovely to see her again.
The following day she was still conscious, still the same, but she didn't so bright eyed today. The doctors or the nurses explained that she was probably tired. They were trying to wean her onto the ventilator where she does all her work rather than one where she does some work and the ventilator helps her. And it was making her tired. So she wasn't quite so good then. And the next day again, still very tired, didn't answer many of my questions. It was almost like she didn't want us to be there. She couldn't be bothered. She was so tired and that was really upsetting.
Day twenty one was an excellent visit. She looked brilliant. She smiled a lot. She kept winking at the girls, being quite cheeky almost and she tried to tickle the girls as well to make them smile. She was pulling lots of funny faces in answer to our questions, trying to communicate with us and she started to kind of mouth questions and answers, rather than just nodding and shaking. She was now responding a lot more and as we left, my Nan was with us, and when we left she pulled my Nan down to kiss her and mouthed at my Nan to take care. So that was just a real big step forward.
The next day again, a step back, very tired. Not so bright. Not so full of energy and I was having to lip read which was really frustrating because I couldn't understand what she was saying. And she was getting frustrated because she couldn't make herself known. So we took in a notepad so that she could actually write, but because she hadn't used her hands for so long she couldn't really write either. So it was a very frustrating time over the next two or three days really. It actually got to the point where I wasn't sure if I wanted to go in and see her because it was upsetting, because it was almost like she was really angry with me. 'Why can't you understand me' and she was getting so frustrated and I thought I don't want to go in because I don't know what she is saying to me.
The following day, day twenty six, I dropped my eldest off at Brownies and I just took the little one in and she was fast asleep in her pushchair. And I pushed her into the ward and my Mum said, 'She is fast asleep.' And I said, 'Yes.' And then I did a double take. I said, 'Was that your voice, you know you have spoken to me.' And she said, 'Yes'. She was grinning her head off. Again I was so excited I burst into tears and we then spent the next hour talking non stop.
She was very honest with her two young daughters about their grandmother's illness and about how...
She was very honest with her two young daughters about their grandmother's illness and about how...
I involved the girls in everything. They knew there was a high possibility she [her mother] would die. I explained everything to them. Whether rightly or wrongly. And they were absolutely fine about going in. And one of the consultants said to me, 'They are very confident in ITU'. They would go off, we'd would get in, they would go and get chairs for us all. They knew were the chairs were kept. They would put the chairs out for us, they would wash their hands. They would sit and talk to Mum. We would talk about the machines. They were completely unfazed.
There was a gentleman opposite on a rotating bed, which looked quite scary. They would ask questions about what was happening. They were more interested in what was happening rather than being scared by any of it. But, as I say, kind of the older generation thought I was doing wrong by taking them in. But they are so close to my Mum that I couldn't just leave them out of it. They needed to know what was happening and they coped absolutely fine with it.
Yeah. And did they ask questions later as well or even now, do they talk about it?
Very rarely. They were obviously here helping when Mum came home. And they knew that she could and couldn't do things. And occasionally they referred back to it. Generally her pulling funny faces and things. They don't seem to remember any of the scary stuff because they accepted that so well. They just remember the funny moments and we talk about it. If it comes up we talk abut it. And they tell my Mum things that she was doing while she was in there, which she doesn't know about. But yes they have accepted it quite well.
And did they see how upset you were or did you try to keep that back a bit?
No. If I was upset, if I needed to cry, then I did it with them as well. Because I believe that they needed to know it was all right to cry. Don't keep it all inside, so if they cried' and [my younger daughter] was too young, but [my older daughter] did keep saying is she going to die, is she going to die, and I was honest with her. We don't know. When we went to see the doctors or the consultants I would ask them in front, if a child was there, I would ask them as well, you know, 'Do you think she is going to make it?' So they heard from the doctors as well that they weren't sure what was going to happen. And I just explained everything. As I say, obviously in more basic details for them to understand. But they knew everything that was going on and they would ask me about all the other patients as well. What was happening. They weren't frightened. If I took them to the toilet, there was a lady that had been a long time, and we stopped and talked to her and they were quite happy. She had had a tracheotomy and ventilator and things and they were always quite happy to talk to her as well. Because they just weren't scared by anything.
She slept better at night when she had a pager, knowing that any calls to her landline wouldn't...
She slept better at night when she had a pager, knowing that any calls to her landline wouldn't...
I was, as I say, worried each night going to sleep, for some reason I was convinced it was going to happen in the night and I would get a phone call. But ITU gave me a pager, which was a lifesaver because I knew that if the phone rang, it wasn't anything to do with my Mum. You're still kind of thinking is that going to go off in the night. But the phone ringing wasn't a worry, every time the phone rang, to think, oh my God, I have got to' something has happened. But once I got the pager that was - that pressure was gone as well. And I slept fine.
She received lots of calls from her mother's friends when she told them she was critically ill,...
She received lots of calls from her mother's friends when she told them she was critically ill,...
One of the things I did do, which probably wasn't such a good idea in hindsight, I wrote to a lot of her friends. I was so convinced we were going to lose her, I wrote a general letter and sent it to friends to let them know what was happening and that is when I then started getting so many phone calls each night, which I just came home and I didn't want to talk to people. So my husband would be answering the phone and he didn't really know what to say, and that is when I then thought I am going to put a message on the answer phone.
Did they also want to visit?
No not really, a lot of them are quite far away but it did actually bring her, there was a friend of hers who she hadn't seen for 30 or 40 years. And they have kept in touch with Christmas cards and they have said every year in the Christmas card, 'We must meet up'. And this friend actually turned up at the hospital to see her and their now in touch, they generally see each other every month, so that is nice. There was another friend who she has known since she was at school who was very, very upset and she did come and visit. But generally everyone else was just kind of phoning for, you know how are things going.
She kept notes on her mother's ICU stay and turned them into a diary, which she gave her mother...
She kept notes on her mother's ICU stay and turned them into a diary, which she gave her mother...
I started it not long after she had gone in. My managing director at work in June 2003 had had a very serious accident while in Spain and he almost died. He had been in Intensive Care. And when he returned to work he said, he was missing a huge chunk of his life. He didn't know what had gone on and I decided to write the diary for my Mum, so that if she did come out we could fill in those missing chunks. But it also became quite important for me to be writing down my feelings. I didn't actually write the diary up, I just wrote notes each night when I came home and I actually finished writing the diary up on the second anniversary of her illness and I gave it to her.
I did ask when we were in Intensive Care if I could take some photos of her to put in the diary, so that if she ever wanted to, she could see, especially when she was so swollen and bloated, you just can't describe to anybody how bad they looked. But I was told that I couldn't take any photos, which I was really quite disappointed about. But when I gave my Mum the diary, she read it. I gave it to her on the second anniversary of her illness. And she read it, took it home and read it on her own and she was really upset. And when I went round she said, 'I am so sorry what I put you through', you know, she only really knew what she had been through and didn't really fully understand what we had been put through - how it had changed our lives so much as well.
Her mother has made a good recovery but still has good and bad days.
Her mother has made a good recovery but still has good and bad days.
I would check her in morning and I would phone her during the day and then I would come home and go straight round to make sure everything was all right. I was doing all the cooking. But I knew, she was so determined, I knew, I had to help her with the bath and actually that is one of the things that determined how better she was getting. At first she couldn't even get in and out the bath herself, and I was having to bath her and wash her hair. And then gradually she would phone me, 'I am getting in the bath, if I haven't phoned you in fifteen minutes, come round and check on me'. And that gradually petered out as well. So she just now gets on with her life but that was an indication of how she was improving and getting better. Going up the stairs to start with, she would have to go up and down on her bottom. She couldn't walk up and down stairs and then gradually she progressed.
But eventually she progressed.
She got herself a dog in May of 2004. So she then had to go out with him, rather than just sitting at home feeling sorry for herself. She takes him out three times a day. And just gradually, it is now coming up just past her third anniversary, and she is really back to normally as much as she possibly can be. She is cooking. She does the shopping. She is driving. She takes the dog out. She goes to keep fit. She goes swimming. So really is back to normal as much as possible.
Thank you very much, is there anything you want to add?
She is grumpy [laughs]. She has turned into a grumpy old woman because she can't do, she gets frustrated she can't do everything that she wants. But she has also still got a sense of humour and we do have a good time. She has down days. In the early days she felt like she was taking one step forward, two steps back and that really frustrated her and she was very, very down. And she still has them. She has her off days where she is really tired and she gets very frustrated but then other days are really good now. So' it does take time but eventually you have more good days then bad days I think.
When her mother was recovering, she sometimes felt angry and forgotten because there was so...
When her mother was recovering, she sometimes felt angry and forgotten because there was so...
Sometimes when I think back about what happened with Mum I get very upset recalling it all and kind of all you know, kind of angry I had to deal with, how did I cope with dealing with so much and keeping it all running.
Is the anger coming from doing it all by yourself?
I don't really know. I think it is still this anger at once they are better it is all then the patient still. And the relatives are forgotten about almost. Nobody said well done, you did a good job there, or you know you have come through all right. And you have looked after your Mum or whatever. There is no praise, no gratitude. I mean obviously my Mum is grateful but you know suddenly it is then just all the patient and concentrating on them, and 'oh you are looking much better' and not, 'and how are you feeling now'. So I think it is probably that, that is the anger. I don't dwell on it. It's I not eating me up all the time, but sometimes when you think about it, you think, you know I went through all that and didn't get an award or a medal for it. You know you feel like you have done a really good job for somebody and' it's forgotten almost.
She feels there is no help for the relatives of ICU patients, even though they have been through...
She feels there is no help for the relatives of ICU patients, even though they have been through...
I felt quite angry because afterwards all the support and all the attention was for my Mum. And I know she went through all the horrible side of things but for the family it is more emotional and you are there every day and see, you are very up and down, you see, and I personally feel that more support is needed for the family. Mum went for a follow-up and I went with her because I felt I needed something.
But there wasn't anything. You know whether it is just someone to' the doctors and the nurses are lovely and they give you as much information as they can. But yes, I think you need some support, you need someone to say yes we have been through this and that is quite normal or just to listen to you. It is very hard, even though my husband is supportive, it is still a very difficult time for you and probably somebody who has been through it or who knows what they are talking about to say, 'That is quite normal to feel like''
Like I say, me feeling angry, you know, is that a normal feeling for people to feel like that or am I a really awful daughter for feeling jealous and angry with my Mum for putting me through that. So I think there could be more for the actual relative. It is all patient, everyone is focused on the patient, to get them well and through, which of course is natural. But you do kind of get a bit pushed out and a lot of waiting in the relatives' room, not knowing what is going on. You know alarms have gone off, you are put in the relatives room and you can sit there for two or three hours not knowing what is happening and that is very difficult as well.
Did you talk to any other people who were in the relatives' room or'?
There was never anybody else in there when we were there. The gentleman opposite, on the rotating bed, kind of got a bit of relationship going with his wife. Just saying hello and that and how is he doing and how is my Mum doing. Whenever we were in the relatives' room, we were generally on our own. As I say the nurses were very good, you would go in and they would give you an update and tell you everything. But they were obviously concentrating on the patient and I have always felt since being there, I think more should be done for the relatives. Whether the patients survive or not because there is still almost a feeling of grief even if they do survive. You have still gone through a life changing, and luckily for me, my Mum is virtually back to normal. It could have been a completely different story, you know my life could have been changed completely, and it is a very emotional time. So yes, I think there could be more for relatives.
Leave updates for other people on the answer phone so you can rest, and try and maintain balance...
Leave updates for other people on the answer phone so you can rest, and try and maintain balance...
I think the thing that I did with the answer phone I would probably say to everybody, you know, because you need to come home and have rest and have peace and the last thing you want to do is be phoning every one up or talking. Even people talking to me, I just didn't want to talk to people. So I think leaving a message, an update on the answer phone, worked really well.
I think trying to keep your routine as normal as possible. So that the whole thing doesn't take over your life, because then when it is over, whether it is a good ending or a bad ending, some how you have got to get back to normal. And if normal had been staying at the hospital for 24 hours a day, it is going to be even harder for you to get back to normal. If you try and keep some normality, plus putting your visits for hospital in as well. It depends. Obviously I was lucky because Mum was nearby. If you have got to travel then that is going to be life changing. But if you can try and keep things as normal as possible, so when you get to the end of the situation it is a bit easier to get back to normal life again, rather than it all being completely different.
Having understanding colleagues, work you know, if you are expected to be in work every day that may not be possible. It's having understanding work colleagues and support from family and friends. And I guess, which I didn't really do, is thinking about yourself as well. You are so wrapped up in, or I was so wrapped up with everybody else, making sure everybody was fine and that, that I didn't actually think about myself. I didn't let any of my emotions or anything out' because I was keeping happy and normal for everybody else. And that probably would have hit me later on.