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Caring for someone with a terminal illness

Helping with personal care

People rarely make a conscious decision to become a carer; rather the role develops gradually as a natural extension of the relationship they already have with the person who has become ill. At first it may only involve, for instance, supporting them when attending medical appointments and making treatment decisions (see Other caring roles’), but as the illness progresses the role will gradually increase to include things of a more personal nature. The term ‘personal care’ refers to tasks such as' washing, dressing, shaving, cutting hair and nails, toileting, incontinence management, food preparation and help with eating, moving and lifting, and administering medication.
 
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Heather's caring role evolved slowly to a point where she had to do everything for her husband...

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Age at interview: 66
Sex: Female
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I cared for my husband, Bill. He had pulmonary fibrosis and I looked after him for five years before he died. And I was the, I was the only person really and the proper person to, to look after him, so it just evolved.

Was there a point when you realised that you were actually providing mainstay care?

Yes, yes. I can’t really think that there was a definite point when I thought, “I’m doing I’m doing most of the caring here.” Because it evolved so slowly. He became ill so slowly that it, it was a gradual process. It was really when he became confined to bed that I found it so, so hard because the carers were coming in twice a day for half an hour. But they never really seemed to be here when the crises happened. So I suppose I was doing, literally, everything for him because he was at the stage he couldn’t he couldn’t move so, that’s, that’s it really.

It involved everything. Eventually, it involved everything I had really, was revolved around my husband. As I said, he couldn’t do anything at all for himself, except he could still feed himself , but it was from, from the moment I got up in the morning he’d be calling me and, obviously, through the night as well.
 

Meal preparation may seem like an everyday household task, but when someone’s illness or disability prevents them from preparing their own food, the responsibility for ensuring the sick person eats becomes part of the carer’s role. Some carers we spoke to said they’d always done all the household cooking, whereas others had increased the amount of food preparation they did or had to learn from scratch. It could be daunting trying to prepare enticing meals for someone who had been an excellent cook. Val arranged Meals on Wheels for her husband while she was at work.
Certain illnesses or treatments can affect appetite or limit the type of foods that can be digested. Several carers said that at times they had to serve only soft or pureed foods. Susan said that as her mother’s dementia advanced she found it easier to absorb hot drinks rather than cold. Some had to incorporate full fat foods or special protein drinks into the sick person’s diet to counter weight loss.
 

Katie’s sister-in-law needed to gain weight but had frequent nausea so often requested that Katie...

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Age at interview: 43
Sex: Female
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What about domestic things like shopping, cooking and that sort of thing?

I did all my shopping online. I did all the cooking but I did get a cleaner to help with the, to just make sure that the house got cleaned once a week because otherwise it, you know, I, it would, something might happen but, you know, you just never knew when you’d get round to doing anything. But yeah, the cooking was, the cooking was quite a chore actually, because Sarah, she lost a lot of weight and was very, was always very concerned about making sure that she was eating, you know, trying to eat enough and eat the right things. But then she also really suffered from nausea and vomiting so would often want something very specific so I often had a very kind of specific request for something that she wanted at that point, because there was only a little window where she’d feel hungry.

And would be able to eat before it kind of passed on to being sick or, you know, so meals were quite pressurised actually. Yeah, I was I was quite relieved to not have to cook such a kind of specific menu. I have to say that was one of things that did feel like a relief afterwards because, and also there were so many of us in the in the in the house and, you know, people, people would often come and stay at the, at the weekend so that they could visit Sarah, you know, other members of the family. And I’d end up, you know, cooking for twelve fourteen people but, on top of everything else. So that I don’t know the way round that but that was quite difficult, yeah.
 

Some people ate one or more meals in bed each day. Heather’s husband eventually had all his meals in bed, which meant he was unable to socialise with mealtime visitors. Her meals were often interrupted when he demanded that his tray be removed while she was still eating. While some patients could still feed themselves, others needed to be fed with a spoon or drink through a straw. Laughing while eating could cause choking in those with swallowing difficulties, so had to be avoided. These difficulties can be overcome by having a percutaneous endoscopic gastrostomy (PEG) tube inserted, which allows foods, fluids and medicines to be introduced directly into the stomach.
 

Anne’s husband can only eat mashed up food; when she visits him in the nursing home she sometimes...

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Age at interview: 75
Sex: Female
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What else do I do? Oh, well, I feed him when I’m there sometimes. I give him his lunch. He quite likes me to do that because I’m not sort of, you know, I can let him take his time and not, he has to be fed with a teaspoon as well because too much he, his throat, it will he will cough and it will go into the lungs and there’s a danger of respiratory pneumonia coming with that. So if you give him a big mouthful he can’t cope with it. So it’s usually a small teaspoonful at a time but he enjoys his food. He eats well. So and, of course, he has to have looks like mousse every lunchtime, as far as I can tell, but if he has, say, a sponge pudding, a syrup sponge pudding but there’s loads of custard on it, it’ll all be mashed. So he can have that or apple crumble providing it’s got lots of custard on it and you can smash it all up and he enjoys that. But ice cream, things like that, he can’t eat because it hits the back of the throat and it makes him cough and that then goes down the wrong way.  

 

Una’s husband Bill had a PEG tube fitted while he could still cope with having the procedure but...

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Age at interview: 62
Sex: Female
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I think looking back the thing about the PEG, having a PEG fitted was because, this was sold to us on the basis of, “You’ve got to be able to support an anaesthetic while it’s fitted and with your breathing so bad, let’s do it now rather than when you don’t have the choice, it’s a breeze kind of thing.” And what we didn’t realise I think then was that this is something you’ve got to maintain. You’ve got to flush it out every day. You’ve got to stop the stoma healing over.

It was fine actually. It wasn’t the, I mean there it was, it’s sort of like an alien that’s come in to live with you in a way. But it’s so commonplace now, it’s so used to it. In fact Bill was able to do it himself for some time and isn’t now and I do it and, you know, it was really no problem. He doesn’t actually take food through it. He doesn’t need it for that purpose. It’s just the other thing. And I think some of the people we’ve seen, we go to the sleep clinic at [city] and I think they were a bit surprised that we’d had it, it had been offered him so soon.
 

For many people their caring role included helping to wash and or dress their sick friend or relative. Washing people with mobility problems was challenging if they couldn’t use the bathroom. Some washed their friend or relative’s hair over a basin or bowl. Lynne sometimes washed her mother with baby wipes. Heather used to get her husband up and dressed each day until this became too difficult and he stayed in bed.
 

Georgina had to encourage her mother, who had dementia, to have baths and put on clean clothes;...

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Age at interview: 47
Sex: Female
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 I think I realised quite early on with the dementia that there was role reversal. Again, when things like that happen gradually, they, they I didn’t resent it. I just knew it was happening. I was aware that as things got worse and cert, certainly, once we knew about the cancer or a bit before then when she was having some small incontinence problems and there had to be more encouraging. The dementia takes away a person’s desire to wash. It may not be the case for everyone but every case I’ve close contact with, hygiene is something that falls by the wayside so, of course, this became something I had. We had a couple of battles, “Come on, Mum.” “I want to, I don’t know if I want to.” Then she’d be, “Oh, I do want a bath.”

 

Some, sometimes they block. They have a whole anti thing. I mean given their own devices, they will wear the same clothes day after day after day after day, underwear, everything. So, you know, you’ve got to take things away and surreptitiously replace them with clean things or suggest, “How about we wear that today.” Or, “Time for the wash, let’s...” You know, and but physical washing was, you know. So we just devised this system, you know, I’d run a bath and help her in and help her out and say, “Do you want your back scrubbed and so then you can do me.” And we’d, we’d, we’d make things a bit more like games sometimes but yes, you, you did become aware, sometimes I’d be thinking, “I bet this is exactly what it was like when I was a child.”

I’m sure that some of the things I’m doing I’m only doing because I know that she did them for me. It was subtle but, yes, I was very aware but I was also, because I was aware of it this was an advantage because it allowed me not to make her feel it.
 

 

Fiona had to lay out her mother’s clothes ready so she could dress her quickly because her oxygen...

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Age at interview: 55
Sex: Female
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She wasn’t initially in any pain. She was, she had discomfort with her breathing. She needed to be on oxygen all of the time even when she was lying in bed. So if she had to take her oxygen tubing off we, it couldn’t be for very long, so getting dressed and, and things like that were something that had to be done quickly. And it was a question of sort of preparing for that, having everything laid out ready and, and knowing which arm was doing what and so that I could get Mum’s sort of oxygen back on quite quickly.

Because it was it was just sort of trying to keep things normal, picking out your clothes. Mum liked to be neat. She, she, you know, would always want to get dressed in her clothes and it was only when she was very ill that she, you know, felt, at the last sort of week of her life, where she didn’t really want to do that so, quite so much. But we were able to put the necklace on and colour coordinate and decide what we were wearing tomorrow and, and do mother and daughter things.

You know, and that was very important.
 

Several carers said they had to help their sick friend or relative to get on and off the toilet or a commode, including at night. Sometimes it took two people to do this lifting. Heather’s husband still wanted her present in the bathroom when he had professional care workers helping him on the toilet. Peter said there had to always be someone at home in case his daughter needed the toilet. Fiona arranged for someone to sit with her mother while she went out but sometimes had to abandon her shopping to respond to a call from the sitter for help in getting her mother off the toilet.
Incontinence was a problem that some carers had to deal with, particularly towards the end of their relative or friend’s life. When patients wet the bed the additional laundry added to the carer’s workload. Savita’s husband had a urinary catheter fitted. Others used incontinence pads, although Susan’s mother, who had dementia, used to take them off.
 

Cassie helped her father get on and off the toilet. He repeatedly wet the bed after he had been...

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Age at interview: 26
Sex: Female
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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.
 

Needing help with personal care, and particularly toileting, can be difficult for people to accept. Sue said her father became obstinate because he didn’t want anyone, particularly his family, doing this. Carers often found it awkward or embarrassing at first; some said they had got used to it (see ‘Changing roles and relationships’). Lynne didn’t like washing her mother’s private parts but said she couldn’t leave her dirty. Peter said that washing his daughter was ‘a very intimate thing, yet it was something that obviously comes naturally to parents’. Sue said that because her father had dementia he no longer seemed like the man she had known, so she was able to ‘switch off’ when attending to his personal care.
 

Katie’s sister-in-law was always apologising to her about having to deal with her incontinence....

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Age at interview: 43
Sex: Female
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Did you have incontinence pads or were they supplied?

Yes, we had, towards the end of, again, from the hospice there we were then referred to continence nurse and then, and then that that sort of thing was provided. Up until then, we’d been buying it ourselves because we didn’t realise. Also I think there’s quite a lot of embarrassment around it so, you know, Sarah would kind of, “Can you go to the chemist and just get me some pads or something.” And we’d just kind of deal with it ourselves rather than make it into a, you know, a known thing but actually, it was a huge relief once someone else came in and, and said, “Okay.” You know, once it was out in the open it was much easier to deal with. So yes, we did the supplies and, and things like gloves because up until then I hadn’t had gloves or anything. I mean I suppose I could have gone and bought them but we didn’t we just kind of didn’t really think about it and Sarah said at one point, “I’m sure you should be wearing gloves for this.” And once we’d once that part of the care had come in then, yeah, gloves and aprons were provided for me. Yeah, but also it’s a kind of there was that, you know, do I, I kind of felt like I don’t want Sarah to think I’m putting a glove on to deal with her because, you know, it’s like when you deal with your children, you don’t put gloves on do you. So kind of it’s one of those things, it’s actually easier if a professional says to you, “This is what you can use. Use it.” As opposed to trying to, you know, be a carer who doesn’t offend a, I didn’t want to, didn’t want to make her feel dirty or any of those, you know, any of those things. So it was how to address it without making her feel bad about it.

Because she did feel bad about it and she’d often, often if I was cleaning her up she’d be apologising to me. But none that stuff matters it’s just, it’s the, like I said, it’s I think once somebody comes in and says, “Just use this and here’s this.” It was it was easier.
 

In addition to needing help getting to and from the toilet, people with limited mobility needed help to get in and out of bed and transfer from their bed to a chair. Some also needed to be lifted up or turned in bed to keep them comfortable, to prevent bed sores, or when sheets needed to be changed. Lifting and moving people is physically hard work especially where the patient is larger than the carer. Some carers had to summon help when the person they were caring for fell over and they couldn’t get them up on their own. As the level of disability increased people sought mobility aids and equipment to help them, such as wheelchairs, stairlifts and hoists. Although Bill used stairlifts, Una still had to help him transfer from one lift to another on the landing. Hoists were often loaned from social services or charities such as the Motor Neurone Disease Association. Hoists can take up a lot of space and not everyone who needed one could fit it in their home.
 

In the early stages of her MND Dick’s wife could not stand unaided and had several falls; as she...

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Age at interview: 55
Sex: Male
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So we spent some time over at the flat over there. And at that time Di started to, Di's paralysis started to, to really bite. There was the time when she could no longer stand alone. She always needed somebody with her. She was standing just here at one time in the early stages and suddenly just fell and hurt her arm and head and bruised herself. And she had several bad falls at that time. She’d been having falls occasionally and before that, before even we realised that something was seriously wrong.

We had a new dog and he kept pulling her over and we thought he was just a very boisterous dog you know. But in fact it was I think now it was just the first stages of the illness. So I was needed more and more. Very fortunately because of my training as a shiatsu practitioner I knew how to lift. And so I started a kind of long routine of lifting her and moving her and moving her from the bed to the chair, the chair to the commode, the commode to the toilet, moving her around and all that sort of thing. But at first it was manageable. It was okay.

And as the muscle wasting continued, she couldn’t get comfortable wherever she came into contact with the physical world it was painful and uncomfortable for her. She needed turning at night regularly because she couldn’t turn herself. And so I would have to be available all through the night to get up several times to turn her and take her to the toilet.

And yeah, there were all sorts of skills, like turning her, and finding out how to make her comfortable in bed as well, was, was an, you know, we tried all sorts of things. We tried using pillows this way and that way and we got some good tips from the hospice as well which sometimes worked, sometimes didn’t. Obviously it depends on different people. So, but we adapted and found ways of doing it and we were able to, I was able to show the carers how to do that. And largely they were able to reproduce that and, although it, the pillow arrangement got more and more complicated. It got to be quite a science in the end, how to keep her...
 

 

Despite having a wheelchair and a hoist, there were often circumstances in which Peter and his...

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Age at interview: 62
Sex: Male
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And so we continued to have a, a reasonable quality of life moving with the aid of the wheelchair, with the hoists, with personal lifting, right through until the time Olivia died. But to do that, my wife and I had to break all the rules. We had to lift her on all occasions. So there was no way that we could use the mechanical lifts to get her in and out of the car, to get her to a hydro pool. We, there were, we had all the OTs and physios coming out of our ears and they’ve, none of them could come up with a solution other than my wife and I lifting my daughter. I’m sixty-two, my wife is ten years younger but in any of those cases I mean I’ve got the strength and she hasn’t, so I was finding it was quite I suppose in a sense it was amusing but also frustrating that we’d have a very able bodied helper coming in to, to assist, you know, the Social Services helper coming in to assist. But when Olivia needed to be moved from her bed to the wheelchair I had to come and lift her. Because we couldn’t, we, the hoist wouldn’t get in we had one of these mechanical ones as well as the, the fixed one and we couldn’t actually get it into, alongside her bed to actually get her from the bed into the wheelchair. So whenever we were doing any lifts at all my wife and I would do it. We became quite proficient at it, but our backs did suffer a little bit, but they’ve recovered now. And to any parent I would suggest that, you know, for quality of life you’ve got to look at ways that you can do that. Even to the extent of when she went back in for further checks into the [hospital] my wife and I were actually lifting her in the hospital, much against the advice of the staff, in particular the OT staff, in the hospital. But it was the only way that we would ever get her from place to place.

An example of that was when we had to go back for a CAT Scan and we said, “Well we’re staying with friends near [city] if you don’t have the ability to have a bed downstairs or a bathroom facility downstairs for Olivia, so can she come in to the [hospital] for the night before?” So we delivered her to the hospital the night before so that she could stay there and the plan was that we would all meet up at the [another hospital] where this mobile CAT Scan was the following morning at nine o’clock. Well we were just driving into the hospital [second hospital] and we got a phone call from the [first hospital] saying, “Awfully sorry we haven’t been able to get an ambulance and we can’t get a suitable taxi to get the wheelchair in, could you come over and collect her?” By this stage we were well late on our appointment for this scan. But we did, we drove through [city], right across the other side, we arrived there. There was no lifting kit available instantly in the ward and we had to get her across to the [second hospital], so we simply said to the ward staff that, “We’ll do it. We’ve been doing this for four months now, we’ll just do it.” So we got her off the bed into a wheelchair and we got her out of the wheelchair into the car, as we had been doing for some months. We got her over to the other side and, and, to cut a long story short, it would not have happened had we not done that. And so we found ourselves in the position of making decisions about our own health versus our daughter’s health and in those circumstances there is no decision, and you just go ahead and do it.

I could go on for probably another twenty minutes about how they wouldn’t actually eventually do the CAT Scan until we threatened to call the local newspaper, and to get very senior management involved, and eventually, again, my wife and I were able to lift Olivia onto the scan bed, which then went into the scan and came out, despite the radioactive warnings that we’d been given and all of that, because

Some carers also helped their friend or relative to take exercise to prevent them from becoming bed or chair bound or to help them recover from a long hospital stay. Peter’s daughter was visited at home by a physiotherapist every fortnight but Peter felt this wasn’t often enough so he helped his daughter to do the exercises three times a day.
 

Roger’s wife needed frequent chest physiotherapy but no physiotherapists were available in the...

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Age at interview: 59
Sex: Male
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No, I’m going to think particularly in the first instance of physiotherapy. I think I’ve already said that in the early days in August of 2005 the hospital who did give Teresa some physiotherapy, chest physiotherapy indicated that they would like to see Teresa having chest physiotherapy in the community two, three, maybe four times a week initially but as a long term objective two or three times a week. 

occupational
When conversations took place with occupational therapy they seemed to be unsure whether a community occupational physiotherapy actually existed. There seemed to be a feeling that if that type of intensive physiotherapy was required to be done in the community then it would be a hospital based physiotherapist who would come out and perform the physiotherapy. Occupational therapists seemed to think that that sort of physiotherapy was outside of their remit. The problem was circumvented partially by the, the hospital physiotherapists, having referred to their seniors, educated me and instructed me on how to perform the necessary procedures and use the suction machines, the portable suction machines and the oxygen and all the rest of it. If there is a problem in the community for physiotherapy then the option of training a family member or carer is one that should be considered, looked at, perhaps at an earlier stage.

A hospital physiotherapist is a very busy person. They spent a lot of time more than one of them, spent a lot of time with Teresa. They were very patient with me and helped me. But some of the techniques are not techniques that are learnt in five minutes. The technique I could have done with a lot more time to practice and perfect under supervision within the hospital, they did not always have the time to do it. One or two physiotherapists came back after, when their duty had finished in their own time to give me time. I think that’s absolutely splendid but it should not be necessary. If we need to train people in families, if we need to train carers, then it needs to be recognised early enough and resources given to it. Or we need to ensure that the coverage for physiotherapy within the community is adequate.
 

Many carers also had to take responsibility for ordering, collecting and administering medication to their friend or relative. Cassie was frightened of making mistakes with medicines so used post-it notes and highlighter pens to remind her what to give when.
 

Georgina’s mother had dementia and sometimes didn’t want to take her pills; Georgina chose to...

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Age at interview: 47
Sex: Female
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I used to do dosette boxes myself and they can’t give pills unless they’re in one’s that have come from the chemist all sealed they couldn’t administer those. They can offer them but they can’t do more than offer.

So you’re actually limited in what you can do and when she needed mid-day pills as I say, you know, “You’ve got to try and get these into her.” But they’re not allowed to try and get these into her because they can only put them there and say, “Take these.” And if she just then fell asleep or pushed them away that would be the end of that. Whereas being her daughter, I could be a little more insistent, although I mean I wasn’t holding her holding her nose and ears and opening her mouth and throwing them down her or anything but I could just keep on, “Mum, you really have to. They are doing you this good.” “I feel sick.” “That’s why you need these pills. They’re the ones that’ll stop you from feeling sick.” So lots of explanation and cajoling, which is, you know, different with a carer.
 



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