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Caring for someone with a terminal illness

Juggling caring with other aspects of life

Becoming a carer for a family member or friend can have a profound effect on the lives of those who take on this role. Many carers talked about the challenge of coordinating looking after their ill relative or friend, with other aspects of their daily lives, such as work, childcare, housework, social life and hobbies. Those who were caring from a distance had the added problem of judging when their help was needed and having to travel.
 
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David was not the main carer of his father and he sometimes found it hard to know how to help...

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Age at interview: 58
Sex: Male
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But towards the end of his illness, as I said, there were times when we had to offer, give him some very personal help for him to be able to cope and at the end of his life that became more and more difficult particularly with him being in and out of hospital three or four times and eventually into a palliative care centre at the local hospital where he eventually died. Those revolving door scenarios in and out of institutions that was very, very difficult times.

For you or?

Obviously mainly difficult for my father and for my mother but it was difficult then for the other family members to manage around their needs. Not always wanting to interfere, realising that we weren’t the primary carers for his illness caused some sort of problems.

Can you speak a little more about that?


I mean some of the care problem were a result of distance in geography and the fact that we didn’t live particularly near. We, I guess in sort of global terms five or six miles which is how far away we were from my dad isn’t a massive distance. It’s not as if we were living in Australia or Canada or something like that but it’s still, it’s still a distance that you’ve got to, you know, it takes half an hour or an hour if you’re in the middle of the night to make that journey to get out of bed and to get dressed. And as I was saying my parents were loath to ask us to get up and jump every time they needed some help. Obviously we offered to help in any way, shape or form that we could but it wasn’t always easy to, to glean from my mum and dad exactly what position they were in, how ill my father was.
 

While some people we spoke to had retired from work before becoming a carer, others had tried to balance their caring responsibilities with holding down a job. Some people said that working provided a sense of normality and allowed them to forget their caring responsibilities for a while. However, tiredness resulting from caring roles could impact on work performance. Sleep deprivation was a problem for those who had to help their friend or relative in the night, such as with toileting. At one time Val’s husband had to get up in the early hours in order to be ready to be collected at 6.30 a.m. by hospital transport for his dialysis sessions; Val found it difficult to continue sleeping when he was up and about, and this impacted on her ability to work.
 

Emma’s mother wanted her to continue working as that was normal; Emma found that teaching allowed...

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Age at interview: 44
Sex: Female
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Yes, the impact on work was quite dramatic really I think. Working in an environment with children, in lots of ways was good because the kids don’t know, do they? The kids, I’m just their teacher. I can throw myself into my job, and there were periods of times during the day, I could forget that I had a terminally ill mother. And that was great because I had that release from it. So, on the whole, it was good. What it has impacted on me, I didn’t take any time off work. The only, I had one day off to go to one meeting, but because I finished at three, in lots of ways it gave me time at the end of the day to do the mum bit. I think Mum wanted me to be at work, because that was normal, wasn’t it? We were all doing what we always did. So the encouragement from there was strong to be at work.  

Jane found that she didn’t want to continue her job in social care once she became a carer herself; she spoke to her managers who allowed her to change her role. Georgina had found it difficult to know how to manage her work because she didn’t know how long her mother would live. She engaged live-in care workers and continued to work, but with hindsight, if she had known her mother would only live three months she might have chosen to take unpaid leave instead and not employ care workers.
 
Caring duties had to be fitted around work, or vice versa, and many carers had to take some time out of work to deal with medical appointments or emergencies. Some said their employer had been understanding and allowed them flexibility, although pay could be lost by taking time out. Reducing working hours or working from home were other ways of juggling work and caring responsibilities. The working environment made it difficult for some to deal with personal phone calls connected with their caring role, although calls to and from medical professionals were often unavoidable.
 

Lynne lost pay whenever she took time out of work to help her mother; she sometimes had to make...

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Age at interview: 53
Sex: Female
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And my mum was getting worse. And I couldn’t get her to the doctors and her legs started to swell, so I was coming home, but what was happening was, we all work full time here. There’s myself, my husband, my daughter, her husband and my son, we all work full time and my mum, she wasn’t particularly bad, at that time. This I’m talking January, but she wasn’t good.

And she’s eighty four and quite frail, very tiny. She’s only four foot ten. So I used to get up in the morning, make her, her breakfast, make sure, and sit her here, move the coffee table to her side with the phone on so if she needed me she could call me. And then I’d come home in my lunch hour to see if she was all right then go back to work. And then one of us would ring her on the hour, every hour all through the day just to make sure she was okay. And she was obviously being in pain and getting worse and having terrible trouble with her medication because she couldn’t swallow. So we tried to get her liquid medication.

And one day I came home, one lunchtime, and her leg was really swollen and it didn’t look right. So I called the GP, who eventually, came out after three hours and she had a look at it, phoned the local hospital and made an appointment for her to go that day and my mum went there. I had to take her, have a, obviously, a half day off work. If I don’t work I don’t get paid so I’ve lost half a day’s pay. We sat round there for about four hours but it they diagnosed her with a clot in her leg. So I had to take her every day to have an injection in her stomach at a fixed time, so it was either mornings or afternoons. Again, every, all the time I’m having to go to work, come out of work, lose money. I mean my work were really good, when I think back, because I had an awful lot of time off. Every day I was having to have at least, taking my lunch hour at ten in the morning and then trying to make the time up or just not getting paid for it.

Well, what about your colleagues? You said you had to make phone calls sometimes in an open plan office about difficult subjects. What were your colleagues like?

They were really good. When it was, it got, got a few, bit hairier on occasions and one of the, my colleagues suggested I go into accounts and shut the door, use the phone in there but couldn’t do that all the time and, at the end of the day, I’m at work, I’m supposed to be working not making personal calls all day.

So yeah, you know, that was good. It’s just sometimes when you’re discussing your mother’s personal illnesses with a Macmillan nurse is not good really. It shouldn’t happen. You shouldn’t have to be put in that position and really, the whole thing revolves around money because I shouldn’t have had to be at work or I should have been at work and somebody should have been looking after my mum. You know, trying to sort of keep the home going, feed the dog, cook dinner for the men, keep up with the washing and making sure that there’s food here for everybody and then look after my mum and keep a job and drive her backwards and forwards to here and there and everywhere. It was really, really traumatic and really who helped me? Nobody. Nobody helped me.
 

Those who worked freelance had greater flexibility over their working hours and could fit in their work at unusual times of day or night or reduce work commitments during periods when the patient needed more support. Lesley and her husband were business partners but the uncertainty over his life expectancy made it difficult to produce business plans for the years ahead. Saba was working abroad so had to deal with aspects of her mother’s illness by phone and come home frequently to accompany her to medical appointments.
 
Some people took extended periods of leave from work. Others decided to retire or quit their job in order to care full time. Cassie left her job both to help care for her father and run the family business. Sue took voluntary redundancy while caring for her father. Roger reached retirement age about six months after his wife’s illness was diagnosed.
 

Saba was working abroad on a freelance contract and decided to take a month off to spend time...

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Age at interview: 45
Sex: Female
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She started to obviously sort of get weaker and I think the sort of couple, the last sort of two or three weeks before she passed away, no, I think, sort of two weeks before she passed away, I’d taken, my work in Germany, I was working in Germany and I’d, because I was a free, on a contract, I was a freelancer, I had, they were very much aware of my mother’s situation and they’d said to me whatever time you need to take off to support your mum, you know, that’s fine. I had sort of tried to sort of speak to my doctor to find out at what stage things would get worse for my mother, and then I’d sort of made the decision when I thought that, you know, the doctor was sort of saying, you know, it’s been nine months now and, you know, she is starting to deteriorate. I had made the decision that that next month I wanted to spend with my mum, so I told them at work and they were, they said whatever time you need. I said, “You know, the next month I want to just spend that month with my mum because I feel that we are probably coming to the final stages now of her cancer.”

So I had, you know, it was great for me to be able to not have the, because that’s the hardest thing, having to deal with the stresses of your work commitments plus, you know, the bigger stress of, you know, trying to keep your mother alive and also wanting to just spend those last few moments, you know, with your mother as well, and doing what you can to make her last few months on this earth as comfortable as possible.
 

 

When Maggie’s husband’s mental confusion worsened she realised that he couldn’t be left alone, so...

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Age at interview: 57
Sex: Female
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So how did you, because, obviously, you, your world changed.

Yeah.

You took, did you say you took time off work? How did you find dealing with his illness and caring for him?

It, it was very difficult. I mean the fact that he, it soon became obvious that you couldn’t leave him for any length of time on his own because he got very confused. Now, I’ve got a very small kitchen and one day someone had popped in to see him and they couldn’t find the fridge to find the milk and we I gave notice, I gave them three months’ notice at work in September because it was obvious that he was, and they were very grateful that I wasn’t going to go straight away and then about a month into this, I, one day I’d arrange for Donald, someone was going to come and pick him up at eleven and take him to a friend’s house. And as I was leaving he just got so confused that I rang my friend and said, “Look. Can I bring him now?” And when I got into work I said, “Look. I’m sorry. I can’t do this anymore. I’m going to have to finish today. I’m really sorry.”

And once I was here he wasn’t so bad but he would wake up in the middle of the night, there was, he would wake up in the middle of the night and he wouldn’t know where he was. He wouldn’t know how to get out of bed. He wouldn’t know where the bathroom was.
 

Caring for small children was an added responsibility for some of the people we interviewed, often in addition to paid work. Emma had to get someone else to mind her children during the school summer holidays when she had to attend to her mother.
 
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Katie was caring for her sister-in-law Sarah and ended up looking after Sarah's young child as...

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Age at interview: 43
Sex: Female
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You were you had to organise childcare for her child and yours?

Yeah, yes, because initially, when Sarah first came, and she was having all her treatment and stuff, she spent a lot of time in bed but I was kind of able to leave the house and so I took the children out a lot to try and keep the house quiet because, at that point, we had, she had a three year old, I had a three year old and a baby and then the rest of the children as well. So we had six reasonably young children in the house and somebody who felt very unwell and didn’t want a lot of noise. So I spent a lot of time out with the kids, at that point, would come back and do the, the meals and the, you know, anything else that needed doing. But it was more a kind of coming and going.
 

Keeping up with housework could also be a challenge while busy with caring tasks. Those carers who did not live with their sick relative or friend had to cope with running two households. Some people paid a cleaner to help with housework, but not everyone could afford to do this. Where the sick person had previously managed the household finances, carers had to take this on too.
 

Mary kept cleaning the house so it would be nice for John when he came home from hospital; she...

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Age at interview: 68
Sex: Female
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When we look at time, do you feel you had time yourself? When John was ill, did you have time for you at all?

Well, that’s one of the things that I feel guilty about strangely enough. That because I thought he was going to come out, because I didn’t realise that he’d gone in there and he would never come home again, I tried to keep a balance of things. So I thought, “When he comes out I don’t want him to find that the house has fallen apart.” So I tried to do my housework within reason obviously, because I had to be there every day. I didn’t once, I needed my motor to be running because I was the one in charge now. So I belonged, both of us belonged to various groups and organisations and classes and what have you, so I tried to keep up with my work for those things so I would try to find time in the day to do those things. And so I wasn’t at the hospital at the crack of dawn every morning and there, you know, but then I suffered guilt afterwards because I didn’t know he had such a short time and nobody had said to me, “Your husband is on palliative care and this is a terminal illness and you know, you need to make the best of your time.”

There was no dialogue like that going on. There was no dialogue at all so I was spending my time, doing, looking after the house or, or catching up with my bit of work, you know, my embroidery for my next class or whatever and then going in and then spending time into the evening and so on. And it wasn’t really until the last couple of days that I spent the sort of time I should have been spending there but in time, I’ve come to terms with that. In time I have realised that John lived his life very fully, right up to the end, and I guess that’s all I was doing. I was living my life as fully as possible.
 

 

Anne’s husband had always managed the household finances; now that he is in a nursing home Anne...

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Age at interview: 75
Sex: Female
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The finances and everything, which he had always dealt with and that is the most difficult thing and I’ve said to friends, you know, that if, you know, for goodness, that they’re still a couple, for goodness sake, if you don’t do any of the family finances, learn how it’s done so that when and if you’ve got to do that. It’s better, if my elder daughter didn’t get me on the computer and teach me to do everything on the on the computer with it, I still make mistakes even after all this time, after two years. I said, “Well, I can’t make my account balance.” And she, “Oh, I’ll come and sort you out.” And, of course, fees have to be paid every month so I’ve got to make sure there’s enough money to cover that. I think that’s that, that most difficult thing.

So what kind of things do you feel you have to keep control of now that he’s in the nursing home?

Well, the finances, for a start. Learning how to live alone for the first time ever. I married from my parent’s home and where I lived, twenty two, then lived with Jim, so I’ve never lived alone. That’s not easy. Sounds as though I’m terribly dependent on people, doesn’t it? But I’m, I’m trying , I’m not but there are things that I, you know, I can’t cope with and blessed PC is a, you know, if you hit the wrong key it, I think, “Oh, crumbs. Now what do I do?” And inevitably, I have to phone up one of the girls and say, “I’ve got such and such. What do I do?” Things like that, you know, and it I suppose it, I get, I’m annoyed with myself for not being able to do it or controlling that. On the television, this switch over that we’ve just, digital thing we’ve just done this week and I haven’t a clue what to do. Okay. I could have paid someone to come in and do it but I, that goes against the grain because Jim’s always done it. He’s always been able to do these things. I’ve never wired a plug in my life. That’s an example. I can’t get up in the loft because I’ve got two knee replacements and I just haven’t got the strength in my knees to get up the ladder into the loft. So I’m reliant on sons-in-law, when they come, “Would you mind?” I mean I’ve got to ask my son-in-law this weekend, “Would you mind going up in the loft for me?” You know. I hate having to ask. But I’m learning.
 

Like work, hobbies could provide a temporary release from caring responsibilities, but many carers felt they had little or no time to engage in hobbies or any sort of social life. Some said that friendships had suffered and that any social life they had necessarily revolved around the person they were caring for. This could mean either continuing to do social things with the sick person, where possible, such as trips out or holidays, or inviting family and friends to visit the patient and carer together.

Susan occasionally got people in to sit with her mother so she could go out. Those who found opportunities to go out or have a holiday often felt guilty about doing so. Some said they never drank alcohol when out with friends because they were always ‘on-call’ and might have to drive. Poppy felt there would be plenty of time for socialising later, as she wanted to spend as much time as possible with her dad while he was alive.
 

Dick and Di were determined to keep their lives as normal as possible; Dick took Di for trips out...

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Age at interview: 55
Sex: Male
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And I think important that we continued and we had days out. And Di was always fairly adventurous and so we’d think of ways of taking that in the wheelchair. We’d get her in the car and some friends…I don’t drive a car…so I’d started learning as soon as she got ill but friends said, “Don’t worry. It's another stress, we’ve got a car. You know, we will help you out.” Lots of friends offered use of a car. And we used to take Di out and we used to have the most wonderful days out. And we went up to one…the autumn of in 2004…we went up to Hertford Lock near Huntington to the river. And there was a boat offering pleasure cruises there and we thought we wondered if we could get the wheelchair… there’s only a little plank. We wondered if we could get the wheelchair in and we asked the chap and he said, “I’m game for anything”. So we kind of levered the wheelchair up and out and over and everything and she was laughing and everything. And we managed to get to jam her in somehow into the boat. We nearly tipped her out on a couple of occasions. But we managed to jam her into the boat and we went for cruise up the river and you know how lovely it is on the river, you know, it so peaceful and lovely and, and she loved that.

And we continued to go to the theatre and to the cinema. And we, we were determined that we would have as ordinary a life as possible. And despite Di’s problems with eating we still went out to restaurants, you know and she would readily choke and there was difficulties.

And we thought well okay but there was some embarrassment you know there. But we kind of said…thought to ourselves well okay, it is embarrassing or can be, but let’s do it. It’s what we’ve always done and we still enjoyed doing it you know. So we did go out and we did go to restaurants and we did go to the cinema, you know.
 

 

John sometimes felt guilty about spending time on his hobbies that could have been spent with his...

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Age at interview: 78
Sex: Male
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I mean I have got a lot of involvement in various activities that I’m involved with in the church and in the, and in an aid project that I’m involved with, food aid project. And so, so actually, looking back, I was able to continue with that involvement and sometimes, I sometimes think to myself, when I’m feeling really guilty, “Should I have dropped everything and just spent the time with Joyce?” But I mean I think, truthfully, taking a balanced view, I was probably able to give her care that she needed and still, and she would still release me to, to be involved in, in things that I thought were important. And I suppose, truthfully, that was a good thing actually for me. Yeah. 

 

Georgina occasionally found time to see friends but felt guilty about it. Friends would sometimes...

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Age at interview: 47
Sex: Female
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When we were talking briefly at the start, and you were saying, you know, about your social life. Did you have time out for yourself during your period of care, towards the end when you were your mother was ill?

A couple of times. I did feel very guilty about it. As I said, there was the one time, when she was in hospital, I thought I’d be okay and didn’t, didn’t work out but I did, at weekends I would sometimes go and see Mum in the hospice or the hospital in the morning and then maybe meet someone at lunchtime and then go back. Or in an afternoon I’d have sort of afternoon out to do something, well I still had to do shopping and household chores. Some of my friends, many of my friends were very, very fond of her so they were quite happy to come to [the hospice] so Mum would be asleep and we’d be sitting in the room and we would socialise that way. One of my friends came over from America and spent a week doing mostly that, just sitting with me there and then taking me out in the evening for a meal.

So yes, but I didn’t want to do it too much. I didn’t miss a day. I didn’t take a whole day off ever, not while she was, not once I knew she was that that sick. I mean prior to that.

Is that a comfort now? Is that a comfort to you now to know that you were there?

Yes. I would have hated something to have happened while I was enjoying myself. It’s not that I didn’t enjoy myself. My friends were wonderfully supportive, really supportive and they understood.

And if I could go over for a couple of hours and a cup of coffee somewhere, fortunately, some friends of mine live very close to the to the hospice and I would often go over there afterwards for a evening meal or a chat. They’ve got a, a little girl who was, what, about two and a half at the time so I’d go for what I’d call, her name’s [Name], I’d go for [Name] therapy because when you’re when you’re with a child of that age they’re just pure joy and sometimes you just needed that, something just completely different, this total innocence who’s reaching out to you.

And that was lovely. So yes, you look for things and, and, and friends were, were extremely supportive. I mean sometimes I would stay overnight at the hospice, when, when it got silly and then they’d say, “Well.” They’d, they’d bring me bring me sort of fruit bars and things that they know I like and little treats for Mum.

So yeah, we, we found, we found an enormous amount of relaxation and enjoyment but within the caring role. I wouldn’t have wanted to… I mean the, the holiday that I was supposed to have gone on with my mother, fortunately, even though it was booked online they allowed me to defer it and because again they said, “Well.” I thought, “Well, I could go. I could go while Mum’s sick.” But I had no intention of doing that. That wouldn’t have been right. I would have felt really, really bad about being on a holiday that we should have been on together without her alone or even with a friend, while she needed me.
 



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Last reviewed December 2017.
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