Caring for someone with a terminal illness
Home adaptations, equipment supply and transport
Caring for a person at home until their death can require the use of specialised equipment including hospital beds, hoists, wheelchairs, commodes, walking aids, stair lifts, and medical equipment such as drip stands, oxygen and feeding equipment. Most of this equipment was provided to people free of charge although sometimes there was a small fee for the installation of stair lifts. Some bought their own smaller items, such as wheelchairs. Some people felt that the equipment took over the house particularly when they had tried out different pieces of equipment which were then not removed when they were no longer needed.
It is sometimes possible to get a grant towards making adaptations to the home or building extensions to accommodate equipment and to make the house more wheelchair friendly. People had mixed experiences of getting alterations done, some had been very successful and were done quickly; others had run into delays with getting planning permission and felt frustrated that they had been poorly advised.
Dick and Di had their home modified so it was suitable for wheelchair use. However, with all the...
So social services contacted us and we find out that we could get a grant to modify the home for wheelchair use. So for three months we had this part of the house remodelled. A bigger bathroom put in, a special bath that Di could use when, when she began too paralysed to actually use an ordinary bath, Closomat toilet.
But we had then to move out for three months while that was happening. Very fortunately there’s, there’s a just across the road here, there’s some alms houses attached to the church. And there was a bed-sit going spare. So we, they allowed us to rent that for the period while were out of the house. So I could pop back in as necessary and it was quite convenient. But to be honest with you if I had to made the decision again I wouldn’t have, I wouldn’t have bothered because in fact by the time the work was finished, in the time Di actually got back into the house, she only got a couple of months of use out of it. The bath was uncomfortable. It didn’t really do the job and an ordinary toilet would’ve functioned with a, you know, a chair with a commode, a mobile commode which we used.
So it was a degree of disruption in our lives that you know we could have perhaps done without. But we didn’t know that at the time. We made the best decision that we could and we had a lot a very good help from social services. And the occupational therapist was particularly helpful. And they were errors made and things didn’t go according to plan. But that happens with any kind of building work you know.
Equipment was loaned from different sources including social services, hospices and some charities such as the Motor Neurone Disease Association and the Red Cross. Various professionals had advised people on equipment. Most people are entitled to an assessment by a social services occupational therapist or social worker who can advise on equipment. The Macmillan nurse had helped Henry to obtain equipment when his partner Jane was diagnosed with terminal cancer.
Roger was impressed with the occupational therapist who was good at predicting what equipment...
Did they come at a time that you needed them? Sometimes they all come together.
Well, we had two people that were outstanding and that was the occupational therapist who seemed to be one step ahead of the, of the game if you like, and, and the neurologist special nurse, and these two ladies were absolutely fantastic. So that if Luise, for argument sake, needed a, a more comfortable bed, then the occupational therapist would get the wheels in motion.
And, you know, just, as soon as I got this standing hoist and what a wonderful piece of equipment it was that I just, didn’t bother any more. We managed that ourselves. But I have to say that, without these pieces of equipment we would’ve been snookered really because, and the, as I say, these two, the specialist nurse and the OT, got it all, well just they were one step of the game really. You know, if Luise needed a, a wheelchair in a month’s time. You know, three months before they’d make the arrangements. So they're very clever really how they did it.
Simons wife eventually had to use a hospital bed which they had in their front room.
She was in our bed, so basically I was sort of spending half the time in a spare room, just to make sure that I got some, some decent sleep. And she was given a special sort of mattress to sit on because it got to the point where she was on a lot of morphine for the pain. And spending so much time in bed obviously is, is bad for you because you get these sore points. So she was on a special mattress.
And, and then gradually she got more and more ill. Then we got a hospital bed brought in which you know, for, which had an electronic lifting mechanism. So that they could, because her positioning was painful. She still had a very distended stomach, but they couldn’t really drain it anymore.
So there was a lot of discomfort and also the nurses were struggling to sort of deal with her. So gradually it moved from the bedroom to the spare room to the hospital bed, and then eventually downstairs, in the, in the front room on the hospital bed.
Jacqui was relieved to find that they did not have to keep using the hospital bed because she...
I used to try and cheer him up and like make him laugh and things like that but for the last few years, it was like carers, district nurses. Not only the emphysema but he also had to have a bag in his stomach so like he like it was sort of pipes everywhere because he couldn’t pass water. He, at the end he really couldn’t do anything and it was hard. I think one of the hardest things that happened was district nurses, they wasn’t very helpful, and I, I didn’t realise that I was losing control. But I had a lovely nurse, a Macmillan nurse came in, [nurse’s name], and she was like a breath of fresh air, and the district nurses said I had to have an hospital bed in the room.
So not only did we have all these machines but we had this hospital bed come in. I was sleeping in the front room on a blow up bed and that was finishing Terry off, because we always had each other. He was, he was the main person that I always leant on, like always I could always depend on him. He was strong and the roles changed. I’d become the strong one for him but when they brought this hospital bed in he said to me, “It’s like.” He said, “I feel it’s over.” He said, “If we haven’t got each other in bed of a night.” And I, I didn’t know I could say no and this lovely nurse came up, [nurse’s name], and my daughter was here with us, and she said, “is there anything that’s worrying me?” And I’d been trying to stop my children to see how I was feeling about everything because, you know, you try and be strong for everybody. And like I said to this nurse and I broke down and I said, “He feels it’s the end because like at least we could comfort each other. I’d go to bed early just so that I can hold him, show him how much I loved him, and felt it was all taken away.” And she said to me, “But you don’t have to have that. You don’t have to do this. You can tell them you don’t want that.” And I didn’t realise I could do that. I thought, you know, they’re telling me I’ve got to do the best for Terry and I thought, “Okay.” Like, “You know best.” But she said, “No.” That I knew best and I thought, and it was a turning point, and I thought, “Yeah, you’re right. I know what’s best for him” And we got our bed back and got, they, they the put like it was a bit of a performance but we got the hospital bed back out and it give Terry that lift again because I always tried to make him laugh and like just to just to cuddle. Like I used to cuddle him, just feel like I wanted my strength to go into him, to like make him strong again.
Emmas mum fought against using a hoist but eventually the care workers could not move her...
Did you have to make some adaptations to your mum’s home so she could manage at home? I mean was she still doing the stairs for instance?
Very quickly she couldn’t do the stairs, so yeah, almost, almost immediately we put a bed downstairs for her, and she had a grab rail next to the toilet but, you know, my mum wouldn’t use it, even though we put it in. So very quickly Mum just lived in the living room and she used to, in the early stages, be able to walk to the kitchen, because Mum was a heavy smoker and I think her attitude, perhaps quite rightly so, was, “It doesn’t matter anymore.” Because, not that she said that, but because she didn’t, but I think, you know, she was never going to give up her cigarettes at this point in her life. So she used to walk with – they’re called Zimmer frames aren’t they? - but she’d only walk with me standing behind her because she was frightened about falling, because a couple of times she’d fallen and had to call 999, and, obviously, that’s not a good place to be. So because I’m half an hour away from her, they always got there before me, and I obviously got there and picked up the pieces. But for security she’d get me to walk behind her. And again, we’d got into this routine of that’s what we did, but God I hated doing that, because, you know, I was as frightened as she was, thinking that, you know, she was a bigger lady than me and what was I going to do? I couldn’t pick her up. And, in one case, she did fall down, and she was just about strong enough to help me get her up then. But that was in the early days, you know.
So yes, there were some adaptations but not as many as was offered to us, because Mum fought against things like that.
Because she’d done this, she’d plateaued and, occasionally, she’d go down a little bit and would always have this fight, particularly with something like a hoist, you know, and it’s so totally undignified. It’s not what anybody wants to do. So mum fought against it. And the carers, again, you know, all credit to them, they would lift Mum when they shouldn’t have done, and I know they were doing it. They always, you know, I always went out of that room but I knew things were happening and they were just doing the right thing to help my mum, rather than what it said on their bit of paperwork they should be doing. But it got to a point where they said they can’t do this anymore, and we persuaded Mum to have a hoist and things.
People who are dying sometimes use oxygen towards the end of life, or people with neurological conditions such as Motor Neurone Disease may need a ventilator. This requires the use of specialist equipment which can be noisy, although some people commented that it was possible to have the oxygen condenser in another room.
Removal of the equipment after the person had died was sometimes an issue. A few people had calls about equipment and warning letters about missed appointments after the person had died, which they found insensitive and upsetting.
Una’s husband’s equipment took up most of the room. After he died it was removed quickly but she still had enquiries about maintenance after his death.
Sarah was slightly sad to see the equipment go after the death of both her mother and father...
You said before they came that you’d managed to get some equipment in from various agencies. How quickly was that collected afterwards?
I think I phoned up for some of Dad’s and that was collected pretty quickly and my mum’s, I was less inclined to ring. It was like, it was the bed she died in and I didn’t, and it was Christmas and it was snowy and I didn’t sort of rush to ring up because it was also, I mean things like the, the toilet aid and the shower stool and some things were joint anyway. And, in fact somehow word got to them and they rang me up. I hadn’t got round to making that so, fair enough, because obviously a hospital bed could, was an expensive thing and could well be wanted elsewhere. But actually, the hospital beds we were given were better than the ones in the hospital I think. They had more buttons on for, they were really good. I couldn’t believe when the chap called, he had this pantechnicon, like a removals van, and his job is to collect up the aids around the place and we had, we got it all into Mum’s bedroom. And it was it was a bedroom full; wheelchairs, Zimmer’s, toilet seats, you name it, you know, shower stools, the bed and he came and collected them all and that was very bizarre. And for me, I mean just because that had been like the accoutrements of our lives for so long but then it didn’t belong to us and they’re not pretty anyway. And we didn’t need them so they went but it was it was a sort of, it was hard seeing that go off, which, because it was, you know.
Katie was relieved when the equipment was removed after Sarahs death as it meant they could...
So if you could tell me a little bit about the process after Sarah’s death of having the equipment removed and so on, that would be good…?
Yeah, most of the equipment that we had came through the community service and it all has like a number on it, and they were always brilliantly quick at delivering it and they were equally quick at taking it away. We did we rang them on the on the Friday to, to explain that Sarah had died and they booked us in for first thing Monday morning. So we were able to, to kind of turn that room around from, because it at the end, we had, Sarah was in a hospital bed. We had you know, drip stands with the epidural equipment on, oxygen cylinders and all the paraphernalia for that. It was, the room was very medicalised so, in a way, it was good to kind of get rid of all that medical equipment and stop kind of thinking about the situation that Sarah had been in at the end, and more and be able to kind of focus on Sarah as a person that she was rather than this, rather, rather than being the sick person that she was and kind of remember the, you know, the, the person her personality and, and better times.
Although it was it, it did leave a big hole in the room because we’d had to get rid of the bed, we’d had to get rid of our bed to fit a hospital bed in. So then, of course, there was this very kind of bereft room so, but I think for the children especially, all that medical equipment was good to get rid of, yeah.
Jane was annoyed to receive a bill for a missing piece of equipment and a letter about a missed...
And what about, after George had died, was it collected in a timely manner as well?
That’s a really interesting question. It was, it was one of the things, I had a, a contretemps with the city council because George had had an alarm system, which we’d never used. I’d paid, we had to pay for it, I, but we’d never used it, ever, or test, we’d done the testing because it had a little thing that went round his wrist that he could press a button and they would call through and say, “Is everything okay?” Anyway, he so because I gave up work fairly quickly after we got that in, he we didn’t ever, we didn’t ever use it because he was never on his own. Anyway, everything was collected because it was a few days after George died, I have no idea, George died inconveniently on the Sunday of, of the August bank holiday weekend, so there was a bit of delay in kind of getting things rolling because we had to wait for the Tuesday.
The, so social services came. As far as I know it was social services, I’m sure it was social services, came, picked up everything including this bit of kit that was from the city council, and they charged me because they, because they hadn’t got it back. And I’m sure there is some mechanism that could have been used for the, for social services to say, “Actually, we’ve got this piece of equipment that belongs to you.” And, and nobody could find it. They couldn’t find it in the equipment stores, social services’ equipment stores, city council had no record that it had been returned so I ended up having to pay for this piece of equipment. And, and as if I would have sold it on e-bay, because what use would it have been to anybody, because it couldn’t have been attached to anything, a call system for somebody who’s disabled. And as if you’d have the energy when you’ve just lost your husband and you’ve got three children and all that goes on with it. So that was, that was a, that wasn’t good.
The other thing that wasn’t good was the, that we had a the wheelchair and everything, George had a, a whizzy electric wheelchair, which was all picked up after he died, very promptly, and then he’d had, he’d been due to have an appointment at the wheelchair services clinic that September. So he died at the end, towards the end of August, they’d picked up the kit, and I got a really snotty letter, or he got a really snotty letter saying, “You didn’t attend your appointment. This is, you know, this is really valuable time.” But, you know, and, and I rang them up and I said, “Would you have liked me to bring him in his urn?” Because I was so angry with them and I said, “You have a record that he died because you’ve picked up his equipment. You’ve picked up his manual wheelchair and his electric wheelchair. So you’ve got, you’ve got a record that he’s died so why did you send out a letter that said, you know, ‘Why haven’t you come to your appointment?”’ It’s pretty difficult to come when you’re dead.
I think I’ve got, kind of got a reputation with me as being fairly blunt.
But yeah, so yeah, it was, kind of everything did get picked up very quickly but actually, I really wasn’t in a state of any kind of awareness of who was picking up what and there needs to be an understanding from statutory services that, actually, you know, somebody could pick it up and sort it out because it’s, when you’re organising a funeral, you’ve got everything going on that goes on after a death, which is enormous and, you know and organising probate and you know, just it’s, you know, and you can’t plan for that. You can’t, you know, even when you know somebody&rs
When Roger could no longer get Luise into the car he used a local dial-a-ride service that could...
I mean she was a wonderful character, and I, I think that’s what really got her through, through her illness. Yes so, as, as things went on, we were, after this extension we, we could gather round a, a bit more and, probably six months before she died we lost the use of our car, because we could no longer get Luise into the car. So we, so we used the sort of a dial-a-ride system where you, you phone them up in advance and you sort of say, “Oh could you pick me up say nine-thirty on Wednesday?” And they would, because they, it, it’s like a pick up and drop off system which takes wheelchairs and elderly people around the neighbourhood. I think so we’d, we’d say half past nine one day. They’d come at ten o’clock, another day they come at a quarter past nine so you, we’d probably have to get Luise ready half an hour beforehand and just hoped that they, that they came on time you know.
See 'Practical matters'
Last reviewed December 2017.
Last updated September 2014.