Jacqui & Terry ' Interview 28
More about me...
Jacqui’s husband Terry was diagnosed with emphysema and over the next 16 years his condition gradually worsened until he died. At the time when he received the diagnosis, Jacqui believes that Terry was unaware of how serious emphysema is. Jacqui remembers how they were not given much information about the illness, but believes that Terry preferred it that way. During the next few years Terry’s condition remained relatively stable, but after a few years he deteriorated and needed fulltime care. Terry had to use a nebuliser and 24 hour oxygen.
Throughout their marriage, Jacqui describes how Terry had always been the strong, supportive and dependable one. However the roles reversed as she started caring for him. One day Jacqui went to the hospital for a routine examination and ended up in intensive care after complications. She had to spend a month recovering in hospital and organised carers to come in and look after Terry. When she returned home she found their care to be poor quality and unreliable and so she cancelled their services. When Jacqui had to return to hospital she organised care from another agency which was much better.
Terry’s condition continued to worsen and at one point it was recommended that they got him a hospital bed at home. This devastated Terry and Jacqui because sharing their bed provided them both with comfort. A nurse from a hospice started to visit and explained to Jacqui the options that she did not realise they had, one of which was to get rid of the hospital bed. Jacqui did not realise they had that choice, and immediately got rid of the hospital bed.
As time went on Jacqui often became worried about Terry, and doctors frequently visited. They warned her that Terry may die soon and advised that he should be taken into hospital. However Terry was adamant that he wanted to stay at home. During a particularly bad episode Jacqui called for an ambulance and Terry was taken into hospital. Once in hospital Jacqui describes how he smiled, fell asleep and died. She remembers how his death was peaceful and he had his family around him. Jacqui does not regret taking him to hospital because it would have been difficult for her to cope if he had died in their home.
Jacqui explains how she used to spend all her time with her parents and husband, but now they have all died she often feels very lonely. After Terry’s death the State benefits they received stopped and Jacqui now struggles financially. Jacqui feels very lucky to have such supportive children, who are always there to help her with any difficulties.
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.
Even though Jacquis husband did not like hospitals, when the time came she decided to call an...
Going to, and Terry had this fear he didn’t want to go into hospital. So whenever the doctors came out and they’d say, you know, “You should be going to hospital.” He’d go, “No way.” So like he was always at home. But the, this last night, I’d been watching for a couple of days, phoned the doctor said, “He’s not good. Something’s changing.” And because I’d seen it happen a few times with lack of oxygen to the brain it, it’d happened a few times over the last year. That he didn’t know where he was or he’d be talking about things and like and like you’d, you’d when, when a person’s that, you get to know these sort of changes but this particular night I said to [my son], I went, “Daddy’s not good.” I said, like, “I’ve just got this bad feeling. We need to get an ambulance.” I’d come in here to phone the doctor. [My son] had gone into the bedroom and he was going, and [my son] was trying to get him and just sort of keep him alert and awake till the ambulance came. They was really quick and I don’t regret him going into hospital. I always thought that I wanted Terry to pass away here. I’m glad it was taken out of my hands. I am. Because he didn’t like hospitals. He never wanted to go in and I always respected that I knew that I could do whatever I could but when it came to the end, I don’t know. It’s hard to explain. They came and they took Terry in. I stayed there all the time. I never came home and they were so nice to him. They couldn’t have done any more than what they done and part of me was glad that it was the hospital and oh, I don’t know. It’s hard to explain. The decision was taken out of my hands and it wasn’t here. I don’t know if that makes sense.
Jacqui used the time when the care workers were there to be with her daughters. She thought it...
So I had to go and have another operation and they put us in touch with another carers association and they were lovely. They came in. They we chatted, chatted with Terry and, and they sent in carers and from then on, the carers were fine. They, they really helped. I think the first lot was because it was all an emergency perhaps, nothing was set up. By the second lot, we’d got it all set up. So yeah, from then on Terry had a carer coming three times a day and also respite care that I could actually go out for a couple of hours like whether it be to visit my daughters or just go and do a bit of shopping and that was nice. And Terry was happy with that because him and the carer got to know each other and it was they made a point that it’d always be the same carer, so it wasn’t just different coming in and out and that made a lot of difference and we, he became quite a nice friend in the end as well, yeah. So...
So was that second carer organisation, was that the charity or a private company or something as opposed to social services?
No, it was it was social services but it, I think it was a company they actually used.
Yeah, that it was it was still done through the doctor and social services but it was a company that they used. Yeah.
So they came from a different place.
Than the original ones.
Yeah. And they were really lovely.
And this was a male carer you had.
Yeah, I did ask if it would be possible for Terry to have a male carer because I was thinking of him like and it’s like dignity and like being proud and I just thought it’d be important to him to have a male.
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.
Jacqui had always known her husband as a strong and proud man. She renewed his driving license...
What about your relationship with Terry? Did his illness and the fact that you had to look after him alter your relationship? You mentioned, I think you mentioned early on that it changed the roles in your marriage.
It did, yeah because I always depended on Terry. It’s like probably a bit old fashioned like the bread winner and, you know, whatever he said went and if he said no, it was a no and things like that. But, and he was always the stronger one of the two of us but as he got ill I became the strong one and I became the one, the more dependable one, if that makes sense. I don’t know if that actually makes sense or it’s the right word but I became stronger and more dependable, right, so and I tried not to let him see that because I didn’t, it’s so, it’s so hard for, like it was so hard for Terry because oh, it he couldn’t, when he couldn’t drive no more, you know. Towards the end, when he was driving, we was at the caravan and my son would drive us down there, dro… like come and pick us up or my daughter and we was down there and we and he said, “I want the car down here.” So I went, “Oh, okay.” He said, “Yeah, we’re going to go out in the car.” And I thought, “Oh God.” I thought, “What am I going to do?”
Because I knew he didn’t have the strength and I didn’t want to tell him that he couldn’t. So I said to my son I said, “Look, Daddy wants to drive the car.” I said, “And I’m scared, to be honest.” I said, “I’m really worried.” I said, “Would it be possible if you come down at the weekend, you and Daddy go for a drive but let Daddy drive the car, you know.” With his oxygen and things like this and I said, “See what, you see how you feel and then if you think that’s okay then.” But we didn’t let Terry know this. I didn’t want him to know because it’s like, you know, he’s gradually, couldn’t do so much that I, oh, it’s like chipping away what he could do. Anyway, he went out with [my son] and he drove the car and he did take me just only down a country lanes but he said, “I don’t think I’ll be doing that no more.” And I went, “Well, it’s up to you, you know. If that’s how you feel.” He went, “No.” He said, “It’s too much for me.” But I, you know, and he had to find that out for his self because it’s quite sad when, you know, you can’t work no more. You can’t do this no more. You can’t now you can’t drive now more. His driving license ran out and I renewed it. I knew he’d never use it again but I didn’t want him to think he hasn’t got that. You know it’s, silly things really but I, you know, at least he still had it. He wasn’t going to use it but he had it, you know.
It’s like he’s a proud man and, you know, I think that was one of the saddest things when someone so proud, so strong and you just see him, just little bit by little bit. So...
That was part of his manhood, wasn’t it?
All that stuff.
During Jacquis husbands illness they were managing financially with the benefits they received....
So were there any financial implications from all this? Because presumably, all that care, you didn’t have to pay for. That came from the state.
No, I mean luckily, Terry got disability living allowance. He was a pensioner so pension, pension credit. I got carer’s allowance. It was fifty something pound at that time. So and yeah, we was managing quite well, yeah.
Did you have carer’s allowance before when you were looking after your parents?
Yes, you can’t claim it for [laughs] with Mum I didn’t claim it. With Dad, I claimed it, but when I was looking after Dad, Terry was still working so it didn’t affect us because like I was looking Mum and Dad full time. Terry was still working. Thing was, once Terry stopped working, he couldn’t work no longer, we had to claim benefits. So I had to stop claiming carer’s for my dad and start claiming carer’s for Terry. So I wrote a letter and they, they sort of, it was a book, at that time, and they just sort of just changed the book from my dad to Terry, although, I was still looking after both, you, you can’t claim for both. So yeah.
So I got carer’s allowance for all that time and the biggest shock was when Terry had passed away I must say and it’s still going on now, a year after, is that obviously, I notified everybody and all the benefits stopped. Well, what savings we did have we spent like because I didn’t work no more and things like that and they gave me fifty pound a week and if it wasn’t had been for my children, I don’t know what I’d have done to be honest. So I think that’s a big, like no one prepares you for after like and you, you don’t even consider about after because you’re too busy worrying about the day but, yeah so a year down the line I’m still cold sores because I’m stressed out because of like the benefits system now, you know, but.
So you’re struggling financially now?
Oh, yeah. Yeah, because the bereavement benefit finished. You get that for a year, which is fifty pound a week. They paid the rent and council tax but I didn’t have no central heating in here so through the winter I was spending the fifty pound a week on the heating.
And still being cold and so, luckily enough, I’ve got good children and they all, all helped me. I wonder if what would happen with people that are on their own and older than me that, you know, didn’t have somebody to help them because it’s a struggle.
Just having a few hours off from caring now and then can make life a lot easier. The local carers...
Do you have any advice for other people who might find themselves in a caring situation like yours?
Don’t be frightened to ask for help and don’t wait until, until you’re, you’re sort of down there and ill or, you know, you’re worn out because I could have got a lot more help earlier on and I and I thought, “No, it’s just me and Terry and I can do this and...” But really, you should take the help because like I found once the carers were all set up and I had that little bit of time, couple of, not long but couple of hours or an afternoon, it just makes you that bit more stronger and a bit more fresher to deal with it. So yeah, I’d say ask for help because there is help out there and it makes life a lot easier.
How can people find that help though and where would they start?
I found out after it, doctors, Carers Association, Carers Associations, they’re the people. I’ve recommended them to other people because they will help you fill forms in. Forms are like their booklets, you know, and so Carers Association definitely.
Jacqui didn't have a social life outside the family. Although her three children keep her busy...
So what are you doing with yourself? What are you finding to do?
Decorating. It might sound silly but cleaning and decorating got me through a lot of different things over the years and three days a week I’m at my daughter’s. I’m decorating her house. I just finished decorating my son’s house and I spent the last year, I suppose decorating [laughs]. But once, once I get everything sorted with the pension and everything I’m going to do something voluntary. That what I’d like to do. I don’t know what yet.
I’ve been thinking of a few things but, yeah so.
Do you think all this caring that you’ve done has had an impact on your social life at all or did you not really have a life outside of family?
No, I never did. I think I regret it now because I get lonely now. See I’ve got three lovely children and they keep me busy but it’s lonely [laughs]. You know.
But I never needed friends like yet I’ve always said to my children, “It’s so important to have friends and keep friends.” From like and they’ve got friends from when they was little but I never done that, yeah. They’re trying to encourage me now. They say it’s my turn now. I should be out there enjoying myself but I will I suppose but it’s early days, yeah, so.