Caring for someone with a terminal illness
Seeking help with care
Caring for someone who is dying can present people with huge emotional and physical challenges. Getting the appropriate support at the right time is particularly important when facing the end of life. Experiences of the process of seeking help varied enormously among the people we interviewed. Some carers found they received help as and when they needed it without having to ask, whereas others felt they were left to struggle and fought hard to try to obtain the help they desperately needed.
After Keiths wife returned home from a hospice, local agencies organised care and equipment...
And it was very well done indeed in terms of the equipment and the other items that were necessary kept coming. There, there was never any delay, never any kind of, “Oh, we haven’t got that.” It was all available.
And when she came home from the hospice, you said lots of equipment was supplied. Was that organised by the hospice or something else?
Coordinated between the hospice and the local, there’s a, like the, the bed was from one sort of source. One of the things I, I can’t make clear, there was a coordinator at a town outside our own town who, again, was in contact with me and explaining about what the availability of services and equipment. So again, no, I didn’t have to ask for anything. It was like a package. Now, if you remember, I referred to, it would be perhaps, of some help to have a kind of a list of things, things you need but with those kind of very important and large items, it, again, the logistics were very, very good indeed. So the bed appeared, then the hoist and then bed pan, not bed pan, commode, all those kind of things. Didn’t have to ask for them. It’s remarkable really. I mean we hear so many complaints about the National Health Service but I can’t, again, there’s not, not one thing in that, of that kind of organisation that I could in any way, adversely criticise.
Saba and her father fought for help to care for her mother, but this was denied time and time again.
And then, I ‘d say in December she, by that time she was really weak, she couldn’t walk, she was bed-ridden, she was getting bed sores. We weren’t getting, you know, the District Nurse was only coming in once a week. We were fighting to get more. It, it then became, for my father and I, a fight to get more care for my mother on a daily basis. The District Nurse refused to let my mother have more care. They felt that she was fine and that we had enough between my father and I, even though I was working in Germany, there was enough of us around. That was a really horrible period because it was just about fighting to get as much care for my mum.
I felt that a lot of the time was taken up fighting to get proper care for my mum, and fighting just to get things on a day to day basis, to even get the doctor to come out and see her when she had a symptom that we couldn’t deal with, because you still had to go through the same process as somebody that’s got a common cold. You still have to wait as long. You still have to go to the surgery, or if you can’t go then you have to wait for the doctor to have time to come to see you. So sometimes she couldn’t come on that same day, she’d come the next day.
Factors that affect the availability of help and support include entitlement to state benefits (see below), the number of care agencies in each locality, the condition-specific needs of the patient and carer and their personal attributes. An independent review of social care in the UK, published in 2011, found that there is little consistency and clarity in the amount of healthcare and residential help that people are entitled to; the current funding system was described as ‘confusing, unfair and unsustainable’. Money spent on care may vary between local authorities, which means access to care may depend on where people live. Some people were very aware of the amount and quality of help they received and how this compared with others and their own expectations. Keith felt he and his wife had received good care at home whereas he had relatives living elsewhere who had experienced poorer care.
Sarah believes the healthcare services they received were particularly good in the small town...
But yes, I think this is one of the reasons I like living where I do, because it’s a small market town and we lack a lot of things but in terms of people being interested in people and local professionals and networks are sort of closer. You somehow trust them more than, it’s easier to get, we had a consistent GP, for instance. We just about, Mum and Dad just got, always had the same person do the home visits and we never took them to the GPs. They always did home visits and very quickly when you asked them. So it was actually a fantastic service that we got.
Free care at home is available to people on lower incomes who have limited savings. However, people who did not fall into this category often struggled to afford care and felt disgruntled that they did not have this same access to care.
Roger felt that the system let him and his wife down when they had to use their savings to pay...
The package system all went wrong because the social services don’t talk to the finance people. If you’ve got 20 K in the bank, then they won’t fund anything. So the downside of the, of the, all the care packages was the social services. But really the people that staff it aren’t to blame, it’s just the system.
Somebody who screws and scrapes and, to have a comfortable latter life if you like, well retirement, we’re both in our retirement age and needed those savings to, to live on, you know? And they take all that away, well they just won’t give you anything.
If you’ve got 20K, the person that’s ill, if they have 20K savings then they won’t give you any financial help at all.
Lynne lost pay whenever she took time off work to help her sick mother; she was angry that her...
I mean, you know, we don’t earn huge great amount amounts of money. I mean I don’t earn a lot of money and I was losing half a day’s pay every day. Care costs a fortune and we couldn’t afford it and to be quite truthful, I don’t see that you should pay for it not when you’re tax payers and you’ve paid in all your life. I just think it’s all wrong.
So that’s a bit of a slap in the face and there’s my mum, eighty four, worked all her life, paying tax on her pension and can’t get help.
In the UK there are no clear guidelines on how carers can access help there is some information on NHS Choices but there is often a lack of communication and continuity between care agencies. Voluntary organisations and charities also provide support to patients and carers but people are not always aware of these. As a result many people we spoke to were confused about what help might be available to them and how to access it. Some people only found out by chance about certain kinds of help that were available. For instance, Savita was sleep deprived through attending to her husband at night and only found out that night time help was available from a remark made by a nurse, and Anne had been unaware that her husband could attend a hospice daycentre until chatting with a neighbour who was a hospice volunteer (see ‘Finding information’).
Lynne assumed that help would be organised for her but it wasnt, so she tried to find some...
So when you were told that she didn’t have very long left what were your expectations of what kind of help would be provided and what care?
Well, naively, I thought it would all be organised through Macmillan. I just assumed that they would arrange for somebody to come and help but it doesn’t work like that or not here it doesn’t anyway.
Well, everybody, every number you get given you ring and you’re told, “Oh, no. We don’t deal with that here. You’ve been given the wrong number. Try this number.” I think I had six different phone numbers that different people in different departments of social services gave me.
Well, I would have liked somebody to have sat down with me and explained, you know, what would happen later on. What medication they would give and when’s, you know, what’s available and how you get it. What the disease can do to, to people? What to expect? You know, I didn’t kind of expect it to be so quick. And guidelines, just some, any information would have been good. Nobody gave me anything, just a book from the hospice, which was a bit late. Could have done with that before.
Health care professionals can provide information and advice to carers and may be involved in referring people to care agencies or coordinating the care provided by several agencies. The quality of care provided by individual healthcare professionals and the standard of communication between agencies sometimes helped or hindered people’s access to care. Una was happy that her husband’s doctor made sure they had access to all the services they needed. She said, “He hit all the buttons that the co-ordinator said you must hit. He linked with the community physio, with the hospice, with the speech and language therapist, and so suddenly we had all of these things happening. It was amazing.”
Poor communication between health professionals meant that Teresa did not receive the...
The people that are concerned with these, these matters really do need to look at the community support side of it. Because one of the frustrations that, that I found was we have community people who are not even aware of what the other community services are, whether they exist or whether they don’t exist.
This is probably jumping the gun a little bit but one of the things that was fairly early on was stated for Teresa’s needs was that she needed physiotherapy to help her with her breathing. The hospital did what they could and they said what we needed was help in the community. When we spoke to community health professionals, most of them said, “There is no such thing as a community physiotherapist”. There are community physiotherapists. The community physiotherapy was required urgently. That was in, first requested in August of 2005. They actually arrived at the front door here the week Teresa died in January 2006. That is dreadful.
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.
But the communications within the community were bad. As I said we wanted community physiotherapy in August and got it in January a week or so before she died, far too long, far too long. And when the physiotherapist came to this door and got an explosion. She in actual fact had not been, had only just received a communication. It wasn’t her fault. So what had happened in the pipeline and why the pipeline was so long and tortuous I do not know.
Jacqui was disappointed with the standard of care from some district nurses and the lack of...
And one day in particular, Terry had the tube going into his stomach for the catheter and I used to clean it and things like that and I used to change the catheter and the district nurses, it was part of their job to change it as well, and one, one particular day it didn’t look too good and there was a terrible smell. And I didn’t want to worry Terry and it was the morning the district nurse was coming and so I said to her like, “Would you look at the catheter going into the stomach because it doesn’t look good and there’s there was, I could smell something and realised it was actually coming from there and she looked at it, she and she done and she said, “No, that’s fine.” I said, “Are you sure because like it don’t look good to me.” And it turned out he had an infection in it and landed up in hospital with that. And I was disappointed with the district nurses other than a couple, yeah. So...
What other kind of things were they meant to be doing for him?
Well, they never really did, they’d come in and really just change the catheter. They were supposed to flush it through. They didn’t do that a lot of the time. They were supposed because they were supposed to put a like half way down there was like a little thing and they were supposed to flush it through and they most of the time they’d only do it if I asked. Yeah and supplies. It was a nightmare trying to get supplies of them because Terry, in the end, had to wear like a paddy pad kind of thing and forever asking and another one would come and I’d go, “Well, where’s the supplies?”
“Oh, well, I haven’t been told.” And I went, “But, like it’s in the book.” They had a book and like, you know, you just drive yourself mad.
When Janes husband became very breathless she had to call an out of hours surgery; she felt...
We had a terrible out of hours experience with the GPs. My GP is was part of the out of hours, the doctors who did the out of hours work and he had ensured that all the information was on the system, that it was really clear that George had motor neurone disease, that he was terminally ill and, and what his needs were. And he had reassured both of us of that and he’d seen us very regularly. He was fantastic. Our GP was lovely and, and I rang the out of hours GP when George had been breathless for about four or five hours, no, possibly a little bit longer than that.
So I rang the out of hours GP. The triage doctor, who answered the phone, insisted that I had to take him to the out of hours GP centre, which is about a mile away. It would have taken me an hour to get George dressed and ready and into the, into our van that we had and, and I knew he wasn’t well enough to do that. And in the end, I kept saying to the doctor, “I can’t bring him. I cannot bring him. He’s not well enough. He needs to be seen here. He’s terminally ill.” And I must have said it three or four times to this GP on the end of the phone. Who was the, who was the triage and he was definitely a doctor because I complained afterwards and, and he insisted, absolutely insisted that I had to take him to the out of hours centre.
I in the end, put the phone down because I just didn’t know what to do. I was absolutely at my wit’s end. I just felt so out of control. My, the whole thing was out of control and this is… it was the first time really, that I felt utterly and completely out of my depth. And I just came and I said to my mum, “I don’t know what to do. I don’t know how to manage this.” And then I kind of pulled myself together a bit and I thought, “Okay. He’s been going to the hospice for day care. Ring the hospice. They’ll be nurses on overnight. So ring the hospice and see what they say.” So I rang them up and I said, you know, “I don’t want to take him to A&E. The GP is being absolutely useless. Can he come into you?” And they said, “No, we don’t have, he’s never been in as an inpatient so we can’t admit him.” So that was, she said, “You’ll have to phone the GP, out of hours GP back.”
So I had to phone the out of hours GPs back because I had no other choice. In fact, they rang me when I put the phone down, the phone rang and he said, “Oh, you put the phone down on me.” In some surprise and I said, “Well, I put the phone down on you because you weren’t listening to me.” And he again, when I said I needed a visit, he again said, “You need to bring him to the out of hours.” And I said, “You are not listening to me. I am telling you he is not well enough.”
Anyway, they did finally agree that he could have a home visit and about an hour later, it was like something you hear on the radio and you think, “No, they’re exaggerating.” About an hour later the other GP, who was doing the visit, rang me up and she said to me, “I’d like to listen to his breathing down the telephone.” And, and I said, “He’s on a breathing machine.” I said, “All you’ll hear is a machine.” She said, “No, no. I’d like to listen to his breathing down the phone.” And through gritted teeth I had to say, “You are not listening to his breathing down the phone. You absolutely are not. I refuse to let you listen to his breathing down the phone.”
And anyway, she came. She came out. She was absolutely useless. She wanted to admit him because she said, she said she thought he had a plug of mucus stuck, which he didn’t. He had respiratory failure and, and I said, “No, I’m not having hi
Sometimes carers were forced to seek help when they themselves became ill and could not perform their usual duties. Roger (Interview 32) needed a hernia repair and was not able to lift his wife, so the practice nurse helped him find respite care for her in a hospice. A social worker arranged for Jacqui’s husband to be cared for whilst she was in hospital after having complications from a routine procedure. Another way of coping with this kind of emergency is to use the Carers Emergency Services available via many Local Authorities. This service allows carers to register a contingency plan in case they are unexpectedly unavailable to provide care, such as due to an accident. None of the people we interviewed discussed this service, which suggests that many people may not be aware of it.
Whether knowingly or unknowingly, carers’ and patients’ personal attributes may affect the way in which they seek help and their access to care. Carers who had a background in healthcare or had previously cared for other family members were often more familiar with the healthcare system and believed this knowledge gave them an advantage when seeking help. Sue and her sister had both worked in social care, which Sue believed helped them in accessing help for their father when they needed it.
While waiting for her husbands suspected MND diagnosis Jane used her previous knowledge and...
While we were waiting for the diagnosis as well, the other thing that, because my sister is a specialist nurse she said to me, “Jane, for goodness sake, they can’t just leave you hanging for four months waiting for this next appointment. You need to contact the neuro-nurses and, and, you know, just get some support from the neurology nurses.”
And so, at that point, I myself, you know, as an articulate intelligent individual felt it, I just phoned them and I, and I said, you know, “We’re waiting for a diagnosis. We know he’s got a neuro-muscular degenerative disease, but we need some support.” And so I facilitated that myself and I was, and one of the things for the, through our journey, through his disease was, was the fact that I did know my way round the services. I did feel able to ask and how, I just question how many people would feel able to say, “I need some support or I need you to come and just give me a little bit of an idea of what’s going on here and, you know, how we can manage this and if there’s anything that we need to be doing or we need to be thinking about.”
So I actually, involved the neuro-nurse myself and we asked her to be at the appointment and I don’t whether or not the consultant asked her to be at the appointment when we actually got the diagnosis or whether it was because we’d asked her to be there. But she came into the diagnosis with us and, actually, for us that was really good because we were then taken out of the appointment with the consultant into a different room with the neuro-nurse and, and we were allowed sort of time to ask her questions as well about, you know, how things would be.
Some people preferred to take on all caring responsibilities rather than seek help from other agencies or even friends. This may be because they had previous healthcare experience and did not trust the quality of care from others or they felt it was easier to care themselves than organise support. Jane wanted to keep care for her husband within the family and it took a long time for her to ask for help from friends.
Val found it easier to help her husband with personal care herself than try to organise help...
No, no. No, none at all. I had contacted social services I must admit and that’s when we started the meals on wheels and it was case of, you know, “Well, can Fred wash and dress himself?” “Well, yes he can but I have to be there to supervise.” So it never really worked out and, in the end, I used to think, because I know I have a job to get things out worked out for, you know, some of the residents, so I knew it was going to be difficult for me for Fred.
So in the end it was just easier for me to do it. You know, I saw to him before I went downstairs to work, give him his breakfast when he wasn’t on dialysis and then, as I say, I’m in the house so it was always a case of, but no, I didn’t get in any help.
Some carers said that the person they were caring for had been resistant to having help from outside agencies. This could make it very difficult for their friend or relative to get support, and mean that they were left with all the care responsibilities. Lynne asked a Macmillan nurse to make an unplanned visit to her mum because during planned visits her mum put on makeup and tried to come across as less ill than she was. Having help with personal care was particularly difficult for some people to accept. David (Interview 08) thought it was obvious his father needed personal care at home but both his father, and his mother as the main carer, were resistant to this. His father eventually ended up in hospital.
Tricia was relieved when a woman from the care agency convinced her mum to accept a care package.
So what my, my brother lives in [town name] and what we did was we, we telephoned round to try and get a package of care for my mother at home, which we found a really good care agency locally and the lady came round and had an assessment with my mother and my mother was really reluctant to have anyone coming in the house. That was a huge obstacle to get her to agree to it. It was really hard to get her to accept that she needed any help because she’d, I’d say, “Well, you know, they could help you with having, having a bath.” “I don’t need anyone to help me have a bath.” “They could help you cook and make sure you have a meal, cook a meal and make sure you have something to eat because you’re losing weight.” And she would say, “Oh, I’ve only lost weight because I’ve been in hospital.” But she couldn’t concentrate enough to sit down and eat a meal because she’d start to eat it and then just wander off and you could see the weight dropping off her. So it was really hard to get her to agree to have a package of care but the lady that came round was really skilled and, and sold it to her really but she, so we had carers coming in twice a day. So that that did, it reduced my stress levels knowing that this, someone was coming in.
For further advice and tips on seeking help see ‘Finding information’, 'Financial issues' and ‘Messages to other carers’.
There are a number of benefits that people can apply for that can help with the cost of providing personal services see Gov.Uk for more details.
For more information resources see our resources section.
Last reviewed December 2017.
Last updated December 2017.