Interview 14

Age at interview: 63

Brief Outline: She has cared for her husband full-time since he had a heart attack and life threatening infection that meant he had to have his leg amputated.

Background: Retired accounts manager, married with two adult children. Ethnic background/nationality: White British.

More about me...

In 2006 her husband had a heart attack and a life threatening blood clot and infection. In order to save his life, he had to have surgery to amputate his leg from below the knee. During his surgery and the next two days, she felt as if she was in limbo because she didn't know whether her husband would survive. 

In total he spent 5 weeks in ICU and gradually improved. He was then transferred to a ward for patients who'd had amputations. After having rehabilitation he was discharged from hospital. At home he needed full-time care until he was strong enough to have a prosthetic limb. 

While her husband was in ICU she visited him every day, from morning until evening, and was emotionally exhausted. On the advice of the ICU nurses she returned to work in the mornings to take her mind off her husband's illness. She then visited her husband every afternoon and returned home in the evenings. 

When her husband came back home, she gave up work to look after him. This has had a big financial impact on them. She has adjusted her daily life so that she can care for her husband, and has had a lot of emotional support from her family. At the time of interview, her husband was building himself up physically so that he could have a prosthetic limb. 
 

She felt emotionally exhausted and work helped take her mind off her husband's illness for a few...

In fact the nurses in Intensive Care said to me, 'Why don't you go to work', because I worked at that time, 'And for a few hours each day take your mind off it. And then when you come in to visit you won't be so exhausted.' 

That is the only thing while I was going to the hospital all day, every day, I found it very, very tiring. I would come home in the evening and just have something to eat and then go to bed because I was so tired. Though I think the tiredness was from emotional exhaustion really rather than doing anything. But I did go to work in the morning and then I went back into the hospital in the afternoon until the evening, and I was a lot better then because I felt stronger and more able to help or do whatever was necessary if the situation changed. 

Up until the time that I returned to work, I really was, numb I think is the best way that I can describe it. I used to come home from the hospital and then my sisters, and my brother and my sons would phone. I would have something to eat, although I didn't feel like eating. I never wanted to eat, but the nurses at the hospital, they used to say to me, 'Make sure you eat something. I shall want to know what you had in the morning'. And sometimes I would come home and just have a jacket potato with something and that was enough. And then I would go to bed and then I would be up early in the morning about half past six. I didn't sleep very much and it was very good because I could phone intensive care at any time of the day or night. 

They said if I can't sleep and wake up in the early hours, phone by all means, but I used to phone about half past six, seven o'clock and they used to say, 'He has had a comfortable night.' 

And I used to go down in the morning before I went to work for a few hours and leave about half past twelve. And because they like them to rest between a certain time and I then would go back at 3 o'clock until 8 o'clock at night, purely on the advice of the staff, because they said, otherwise I would be drained for when he did come out of it and when I needed to be strong. 

Her husband's leg amputation was his only hope for survival but he might still have died during...

The chest infection unfortunately became really bad, and he was taken to Intensive Care. I think that was about the 10th February and in Intensive Care obviously he was monitored very closely and they kept an eye on the foot, but because he had had such a severe heart attack they were concerned about another operation and the doctors kept me informed as to progress, but the toxins in the gangrene started travelling and I was told that my husband would die if he didn't have the operation or he could die during the operation. They were no guarantees and obviously the choice was mine. 

Both my sons do not live locally, one lives abroad and one lives north, and I made the decision but obviously phoned my sons at the same time and the hospital said they would leave it as long as possible in the hope that my sons would both get there in time. Which they did and obviously I told them the situation on the telephone and they said there was only the one decision. You've got to go for the operation to give him a chance to live, which he did. And on the 14th February he went down to theatre and they amputated his leg. It was a long operation because apparently there were complications during the operation and I think probably that time was the worst time, waiting, because you were thinking is he going to come through, is he not going to come through. 

How long was this waiting? How long was the operation?

During the operation we decided we would go for a walk and we could have stayed in the relatives' room but they told us it would be two to three hours minimum and we decided to go for a walk, my two sons and I. We went out to get some air and we had a coffee and walked about and then we phoned the hospital to see if the operation was finished and they said no it was taking longer than anticipated, but we decided to then go back to the hospital and we went back and waited in the relatives' room until they said that we could see my husband. 

Obviously after the operation he looked awful because he was on a ventilator, sedated and tubes and everything else everywhere so it is quite distressing at the time, but we were all thankful that he had come through the operation. And the doctors said he has come this far, you know, he is obviously a fighter. So it was a - it was a big relief, but I think we were all full of apprehension as to what the next two days would bring because they had said the next forty eight hours would be critical. 

When she talked to her husband about their grandchildren, she noticed tears rolling down his cheeks.

I used to sit for hours talking to him. And then eventually, one day, tears rolled down his face. I was talking about our grandchildren, so I thought perhaps he can hear what I am saying. And then another day he squeezed my hand, so you know gradually he began to come out of it. And then while he was in Intensive Care he had physiotherapy because of the collapsed lung. You know they had to try and clear it and everything and they inflated his lungs and other things that they do. And I mean, they were very good. I can only speak as I find. But everybody was extremely helpful to me and comforting, I have to say. 

Doctors gave her husband a brain scan and reassured her that, though he was hallucinating, there...

Fortunately he improved and gradually improved and they decided to take the ventilator away and get him to breathe on his own. After one or two hiccups eventually that was fine. He did. But he was totally disorientated, absolutely, totally disorientated. He knew who I was, but he didn't know where he was. And he said weird and wonderful things, really weird and wonderful things and to such an extent that it frightened me because I thought he had lost his mind. And it didn't seem to get better, and I asked the doctors about it and they said it was because he had had such a lot of different drugs, because of the different things that he had gone through that this had' with him being on sedatives whilst he was ventilated. This is what caused it. 

And eventually he was released from ITU and was taken to the Cardiac Care Unit again and he was there for about a week I think it was. And because he was in Intensive Care for five weeks, that is a long time, he went to Cardiac Care and there I mean obviously they were looking after him because of the heart and that stabilised and they were happy with that. And then he was sent to a different ward after that, where the other amputees were, and he didn't really know much about it because he was still very, very muddled. And I was extremely worried because I thought he had lost his mind, and the doctors kept saying that he should come out of it, but because I was worried about it, they decided to do a scan and they did a scan and they said there was nothing wrong with his brain. It was just the tablets and the aftermath of the anaesthetic and it would all clear. 

She asked lots of questions and wanted to be kept informed but was surprised when she spoke to...

I think every test he had done I wanted to know the result and what that meant. When he had his scan I wanted to know what was the result of that, does that mean that he will be fully compus mentus. Or will his memory be impaired or anything like that. Ask all those questions. If you don't ask, you won't be told. Because the doctors have to know if somebody wants to know the worst scenario or just wants to be told yes he is okay. 

So I think it is really up to you what level of help and information you want, but if you want to know, ask. I made it very clear to the doctors, really very early on, that I wanted to be informed all the way and that if he was going to die I wanted to know, and they were very good. They did everything I asked. But having met other people in the relatives room who said, 'Oh  we don't know what is going on', and I have said, 'Well have you asked', they said, 'No.' So I do think that if you want to know everything then you have to ask and you have to tell them the depth that you want to know by asking the questions. And if you have got any fears or worries then talk to the nurses and the doctors and they really will tell you exactly, sort of how you can sort of help, how they can help you, or how you can obtain help. But you need to ask. That is what I would say. 

Her family phoned her every night and was supportive, though she also valued some quiet time...

Did you have a lot of support around you from family and friends? 

I did in respect of family and friends really. I was very lucky. My sister, everybody lives away from us here you see, unfortunately. My son lives abroad and my other son lives in [place name], so you know it is over an hour's journey for him and of course they have all got families. And life has to go on, so.. but they phoned every night and my sisters and my brother phoned every night and my friends sent me emails and things and said if I needed company I knew that they would come. And my sister used to come at the weekend when she wasn't working and things like that. So yes, I did have the support there if I needed it. 

My son and my daughter-in-law and the children came from [place name], but I found as much as I love my grandchildren, they are only small you see, as much as I love them I couldn't cope with the noise and the hustle and bustle. And it was better when they went home. But I mean they said if you need me, call me, they would come any time of the day or night. So I think, because I knew the support was there if I needed it, it made me feel more comfortable. I like to think I am a reasonably strong person anyway and can cope reasonably well on my own. I think it was just the not - the time when it was not knowing if he was going to live or not. And because he was so very ill and with all the other complications we didn't know what that would entail. And I knew that I wanted him to have a reasonable quality of life and I think that was the biggest thing for me.

She felt that, although the nurses were very busy, they did the best they could and were very good.

Did he have one-to-one nursing on the surgical ward as well? 

Not in the surgical ward, no. The surgical ward is a bay of three wards each containing five patients, and there is a staff nurse and auxiliary nurses. And in actual fact while we were there they were very short staffed and actually had to rely on agency nursing and, you know, I think it was very difficult for the nursing staff, because they had fifteen patients to look after in various stages of illness and really they didn't have enough staff I have to say. But I mean they did their best and they were very good. If you buzzed the buzzer they would come as soon as they could and with my husband, because he was on heparin and other drip feeds, when they run out, I sort of had to sometimes go and find them and say it had run out. And then once they knew, it was fine. 

She gave up work to look after her husband full time and encourages him when he feels depressed...

The routine at the moment is - I mean I am always up first anyway. I can't lay in bed once I am awake, but my husband sleeps in if he can, because the only difference I will say is, I think because of the heart he gets tired. So normally he is up about 9 o'clock and he gets up and it really just depends, because obviously he still has some good days and some bad days. And on good days he can get up and get himself into his wheelchair upstairs and into the bathroom and wash, shave, and dress himself. And then I always hear when he is on the move and sort of make sure he is okay coming down the stairs and then have the wheelchair at the bottom of the stairs ready. And then once he is on the ground floor, he is to a certain extent independent, although obviously I do his breakfast etc etc. And I of course make sure he takes all his pills at the right time of day. When we go to the hospital then we usually have to be there by 10 o'clock, so we go down to the hospital. 

Do you drive to the hospital? 

I drive him down, yes. And then I usually come home and when they phone me I go and collect him.

He was very quiet when he first came home and a few times I have said to him what was the matter. And he said, 'Oh I can't do this, and I can't do that' and I said, 'No, but you are alive,' I said, 'What you have got to remember is that you nearly died, but you didn't, you are here, so you have got to say to yourself now every day is a bonus.' So we live life to the full. I gave up working and I finished work on the 19th May to look after him, which is quite a full time job [laughs] but it is a labour of love really isn't it. 

She gave up work to look after her husband full-time and, because neither she nor her husband are...

The financial aspect I think is the biggest thing of all because we have gone from having two incomes to having none. I have been, or my husband has been awarded Disability Living Allowance, but we are still fighting for Incapacity Benefit. He is not 65 yet so he doesn't get the old age pension. And although I am 60 my state pension is very low because I have always paid married woman's stamp. So that really leaves us with just my private pension that I've claimed early and his private pension that he has claimed early and they are not very big because we have only had them for a short space of time. 

So I think until such time as he gets his old age pension or we know if we are going to get this Incapacity Benefit we have to think about what we are doing with money. You know because we still have a mortgage which I am going to hopefully clear with the lump sum I have got from my pension, but until I actually get that lump sum I can't actually clear it to see if it is enough. So yes, it is a worrying aspect, but I have been inclined to deal with all the money rather than worry my husband about it I think probably because I was an accountant anyway, so you know it helps to be able to you know manage. 

But long term, once he has finished his hospital appointments, and we know about his leg definitely and how much mobility he will have, obviously because we have such a very large garden, I think we will probably look to downsize and therefore realise some of the equity in the property which will alleviate the money problems. But I mean there was no option. I could not carry on working because I would have had to pay a carer and the amount it would cost it just wasn't worth it. I would rather do it myself. So that is what we are doing. 

Support and encourage the ill person, including when they feel low or frustrated and it feels...

I think the only advice I could offer would be to say, give them a week, ten days to see how they settle down. If you see signs that they start feeling sorry for themselves then you have got to be cruel to be kind and give them a pep talk. And I think you will find they will respond. I mean my husband did, you know, he said 'Oh I can't do this, can't do that', and I said to him, 'Hey look, you are alive. You weren't expected to be but you are alive' and I think that is the thing. And when they get impatient you have just got to try and soothe them. I think you have got to be very patient yourself really. Because they don't mean it but some days they will get ratty or whatever you want to say, they are not nasty but they get impatient and they are frustrated and they take that out on you because you are able bodied and you are the one doing everything. So you are first in line and they do take it out on you. They don't mean it. They really don't mean it. 

How have you dealt with that, the frustration and everything...?

The frustration is really just talking and saying to him, 'Look we have come this far, what is another month'. And this was because when he had the MRSA his appointment at the [hospital name] to have the cast for his new limb to be taken, was put back a month and he was disappointed and frustrated. And as I said to him, 'We have come this far, what is another month. It gives you another month to build up your upper body strength'. And that is how you have to deal with it. You have to find something that is going to trigger them into saying, 'Oh yes she is right,' you know, and sometimes it is easier than others. I feel I have been lucky because of the weather really. Because he has been able to get out and that has given him encouragement. So yes. That is the thing.