Heather & Bill ' Interview 09

Age at interview: 66

Brief Outline:

Heather cared for her husband who had pulmonary fibrosis. Heather talks of her role as a carer and also the need for some activities to help relieve the stress of being a carer.

Background:

Heather is a retired GP practice manager. She has two adult children. Heather is a widow. Ethnic background' White British

More about me...

Whilst the consultant was somewhat reluctant to say that Bill had pulmonary fibrosis and that it was terminal, Heather insisted on knowing; based on what she had researched on the internet she was able to ask relevant questions and how long Bill had got. The consultant gave Bill between 4-5 years. Heather felt she wanted to make the most of their time left together, but she felt Bill gave up a little.

At the time Heather felt it was easier to know a timescale rather than to keep wondering is this terminal? However Bill lived well past the 4-5 years that the consultant had originally expected and this was a difficult time for Heather. Caring was becoming very hard and she no longer had a time boundary to work within. Both Heather and Bill both found it difficult to see each other so distressed. Heather now wonders whether in fact it was a good thing to have a timescale.

Heather’s expectations of care support were met. Because of Heather’s job she knew many of the health carers, district nurses and GPs and she feels they had great care even out of hours. There was never a time that she felt they were waiting too long for care. All the care team were very supportive of her as well as Bill. Often the nurses took time to have a chat to Heather and to make sure she was Ok.

Heather often felt that she struggled to be the perfect wife and the perfect carer. A lot of the time she felt exhausted as she was never able to completely relax in case Bill needed her. Heather found it most difficult to cope on the days when she was tired after a disturbed night looking after Bill.

Whilst Heather had plenty of information about Bill’s health she found it difficult to know about and then access any benefits they might be entitled to. In the beginning it was very frightening to think they would have to pay for all the care they needed as it would take every penny they had and then Heather would have nothing to live on in the future. Fortunately the care manager helped with all the applications but they had to go to several panels before they were approved, which was a very stressful time for both Heather and Bill.

Bill had a bed downstairs and during the day Heather would spend most of her time sat with him. Bill, loved watching News24 and as Heather was not keen on the news programs she would go into the lounge to watch the soaps which she enjoyed. However her viewing was often interrupted by Bill needing attention. Heather still slept upstairs in their bedroom and if Bill hadn’t called her in the night she was always scared that she might come downstairs and find he had died in the night.

The Macmillan nurses and the respiratory nurse who visited to take care of Bill also took care of her and would listen to her and reflect on how much care and support she was giving Bill who they knew could be impatient and difficult, due to his declining health.

Bill was often lonely. Heather’s local friends would often visit her, but Bill’s friends did not visit so often. Visitors could be another strain for Heather. Although some would visit for a short time, bringing her magazines and having a chat, others stayed too long and interrupted her care activities. Visitors who lived a long way away would need to stay when they visited and again whilst it was lovely to see them, the additional pressures of caring for them as well as Bill made Heather feel stressed.

The Carers Centre supplied Heather with a ‘sitter‘ for Bill three times a week, so she could go out for a couple of hours. However, Heather used to get into a panic going into town. While she was out she would be constantly checking her watch, making sure she had her car keys and parking ticket. So although Heather appreciated the time off, she found it hard to enjoy the break as she was always worried about Bill and getting back on time. Heather also joined a local health club, to help her get out of the house and to help her relax. The health club is also a place where Heather has made several friends who have been very supportive.

Bill had respite care on a few occasions. Heather spent a lot of time every day with Bill while he was in the hospice, but was able to have a break from caring and get a good night’s sleep at home. Bill was in respite care in a nursing home when he died. Heather wishes she had kept him home at this time but also feels that he was holding on so he didn’t die at home and make it difficult for her to live in their home afterward.

When Bill died Heather missed all the nurses and carers visiting or telephoning. It was very quiet around the house. It was very hard to get used to a new routine which did not revolve around Bill’s care.

Initially Heather thought she would move after Bill died but in fact she is still in their home and enjoys her happy memories of her life there.

Heather loves swimming and continues to swim regularly and meet with her friends.
 

Going out on your own and doing things you enjoy may make you feel guilty. But it is important for your own sanity to stay connected to people and things not related to your caring duties.

And I joined our local health club. It was just something for me really to get out and to do and relax and eventually, we had carers in from continuing care, who were also brilliant because they were they were trained in to what to do if anything happened to Bill and, of course, they had my number. But I used to go swimming, well, I still do and it was really good because I met so many people up there that knew me for me not as part of a couple. It was like the start of what my new life was going to be like. So supportive it was the best thing I ever did to make myself go out and just do something for me and I would say to anybody, however guilty you feel about it, you must do that. You must go out and do just something for yourself and, you know, these ladies that I met I’m still really good friends with them and it’s a year on and again it’s, they’ve been my lifeline because again, because they know me for me not for not as part of a couple. Which I think is a good a good move to move on after someone’s died. 

Heather had always wanted her husband to die in a hospice or at home but it happened in a nursing home. Heather still wonders what Bill might have thought about dying while in the nursing home.

For the last two weeks of his life he was in a nursing home and I feel, had I known it was going to happen, I might have kept him at home but you don’t know do you. I think he was afraid to die here because he knew it would upset me.

But he went in and he was only in there two weeks and he died and I’ve often thought that had had I known it was only going to be two weeks I would have kept him at home because he loved his home. And then I thought he just went in there and gave up. Then I thought he went in there and I broke his heart taking him away from his home and then I also thought maybe he went in there and thought, “Well, this is it. I can give up now and go because she’s not going to come down one morning and find me gone.”

When you think about Bill’s death would you say that it was how it should be?

No, I wanted him to be in the hospice and he wasn’t. He was in the nursing home. I’d have had, right from the time that we started having help from the hospice I think we both said that we would want him to die there. My mum died in the hospice and it was it was made so, not easy, but less traumatic then I’d say. I mean it wasn’t traumatic in the nursing home but I was disappointed that he wasn’t where we had wanted him to be. But you can’t always, as I’ve been told, [laughs] you can’t always choose. You can’t always choose it. Some people don’t want to go in the hospice and they do.
 

Heather's caring role evolved slowly to a point where she had to do everything for her husband except feed him; it was a 24 hour job.

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.
 

Heather enjoyed having visitors but found some stayed too long, which made her feel uncomfortable; she wishes she had been able to ask them to leave.

He used to love ‘News 24’ and I didn’t like ‘News 24.’ I got fed up with it so I used to go in the other room and watch the soaps but he would call me because he said he was lonely, which obviously he was. You know. People used to come and see me. I don’t know whether it’s a man thing but men didn’t seem to visit. People came to see me not Bill and I think he used to resent that a little bit.

And I think I had various friends that used to come. Some used to flit in and out, keep me amused with magazines, be here for half an hour and that was great. And then there’d be other people that would come and sit all day and I’d think, “Oh, will you just go.” And then he’d call me. He’d need the loo and they’d say, “It’s alright. You’re my friend. It doesn’t matter. You go off and see to him.” Well, I could be an hour looking after him when he needed to go to the toilet and I was, it made me uncomfortable because I was aware that this person was sitting in the other room, and I really think they should have got up and go but I was too much of a coward to say, “I think you should go.” But I suppose they were just trying to be kind. And then we had other people that used to come from a long way so they’d stay over. That was really hard because he must have felt really out of it, because we three of us would be sitting ‘round the dining room table and he’d be having his meal on his own. Because we couldn’t all eat in the same in right in the bedroom.

No.

And he used to call me. I used to give him his meals first and as soon as he’d finished he’d call me and I wouldn’t, wouldn’t have finished mine and then I used to say, “Bill, will you please just wait a second?” He would say, “I can’t bear this plate on me.” So I used to end up not eating my meal because I’d have to come in here and take his plate away and then get him settled again, and then mine would be cold and if people were here they used to get cross with him and say, “Bill, let her have her dinner.” And then I used to get cross with them because I thought, “Bless him.” You know. So, you know, it’s, it was visitors were quite difficult. It was lovely to see them but it was lovely to see them go and leave us to our own little world, which we seemed to be in a in a little capsule on our own.
 

Heather had a close relationship with the Macmillan nurse and the respiratory nurse who visited her home. She felt they understood that her husband was not always easy.

At the time, were you did you feel you were able to kind of express your feelings about, about caring, about Bill’s illness? Were there times you felt you could kind of express all that?

Yes, I used to talk to the Macmillan nurse. She was brilliant, and my friends. I think the Macmillan nurse was the only person really that knew, and, and the respiratory nurse, although she had such a huge area to cover that we didn’t really see very much of her, but she was always at the end of the phone if you needed her. She would always ring back. But I used to feel sometimes, “I’ve got the Macmillan nurse, why do I want to be bothering another nurse?” But it was because she was the specialist nurse in his condition I guess, whereas the Macmillan nurse is obviously a cancer specialist. Yeah, I was able to tell them. I think they, they realised. I mean they got to know Bill because it was so long and they got to know they got to know he wasn’t always easy, and they I think we had such a close relationship with, well, I had such a close relationship with the Macmillan nurse and the respiratory nurse that I was able to sort of tell them. And, and they, they sort of never said anything bad about Bill, but I just knew that they knew that he wasn’t always easy.

And that was a comfort.

And it was a comfort to me.
 

Heather found the house seemed very quiet after her husband died, not only did she miss the nurses calling in but also the regular 'phone calls from the care manager.

Thinking about having a relationship with the nurses, how did you find it after Bill’s death because, obviously, they were visiting less?

I missed them. I really missed them because I just didn’t see them. I see one of them up at the pool and we, you know, we have a chat now and again. But you’re a patient. You’re the wife of a patient and they’ve got loads of other patients so obviously, they move on to the next person but it was so quiet when, when Bill had died and my son had gone. Nobody dashing in at nine o’clock and half past five to wash him and see to him. No care manager ringing. No Macmillan nurse coming in and I really missed them all. It was just very, very strange and I think that’s quite a common thing.
 

Heather's husband attended a hospice to give her a break but on one occasion he became upset by another person's death and had to come home.

Can you tell me a little bit about respite care? We haven’t talked about that.

Respite care. Because Bill was terminally ill, we were able to avail ourselves of the local hospice and Macmillan nurse. Lots of people think it’s just cancer but, of course, it isn’t. It’s anyone that’s terminally ill. He started to go to the hospice to the day centre again to give me a break. He didn’t like it. He didn’t like going anywhere apart from at being at home. And the nurse in charge of the day centre, after he’d been going there a couple of months, took us both aside and said to Bill, “How would you feel about coming in here for a week to give Heather a rest, because look at her, she’s exhausted?” And he was quite happy. He said yes, he would and he went in and he was fine. In fact, he had a side room that particular time he went in. And he used to go in there one every three months or so, but one time we had to bring him home because he was in a ward and there was a guy at the end of his life and it upset Bill a lot, so he was really distressed so we had to bring him home. And then I think the demands on the hospice became rather heavy because there was an awful lot of people that that needed respite. They suggested we try to get him into a nursing home in between times.
 

Heather worried about discussing a care home with her husband Bill; the Macmillan nurse was going to help but she did it alone and he took it well.

Well, I had to make a decision really whether or not Bill went into a nursing home and it was our Macmillan nurse really that, and the doctors at the hospice that said, you know, “I really think it’s time that he went into a nursing home. He’s getting beyond you being able to care for him.” And we found a nursing home quite close to home and I was afraid to ask Bill because I, anytime he’d been for respite he, he didn’t like it. He hated it and he couldn’t wait to come home. My son went and looked at the nursing home and he was very impressed but I couldn’t imagine trying to ask Bill whether he was happy to go or not so the Macmillan nurse said she would come along one afternoon and help me broach the subject. And then I thought, that morning, “It’s not right. It should be me that is speaking to Bill about the nursing home.” So I said to him that how did he feel about going into a nursing home and I was really surprised because he said, “Well, why didn’t this happen before? Why have you had to do all this caring if that option was available.” And I said, “Well, it wanted really because they were, any ones that were available were too far away.” And I wanted him to be close to home and, anyway, I wanted to look after him for as long as I could. But I was really surprised that he was quite happy to go there, but I wonder if it was actually because he could see that I was at the end of my tether.  

Heather's husband's equipment took up most of the room. After he died it was removed quickly but...

When we spoke a little earlier you were talking about this room became his room when he couldn’t make the stairs. Did you have a lot of additional equipment that you had to have?

Yes, we had, we had a hospital bed. We had a table that came across the bed for him to eat from. He, I forgot to say earlier, he was on twenty four hour oxygen, so there was an oxygen concentrator. Thank goodness not in this room because it was noisy. It was out in the, the utility room. They talked about putting a hoist in, but he didn’t want a hoist so we had a, a pull thing that he could just grab hold of and pull himself up the up him up the bed, but he never got to grips with that. We had to get one either side of him and pull him up the bed. So yes, the room was quite full of medical things.

And did you find that you had to change everything else around to accommodate that?

Yes, yes, everything else everything else went out the room apart from his television. One chair for me, one comfy chair for me to sit in and a table for him to put his things, he was into collecting stamps and he used to have a book case for his stamps.

Okay but generally, everything else.

Everything else went out the room.

And then after Bill died did you find that that was collected and taken away fairly quickly for you?

No, actually, it wasn’t taken away quickly enough. The oxygen was. The oxygen, they were very efficient, they came, they came quite quickly but the bed was here until well after his funeral and, in fact, on the day of his funeral we had a telephone call from the company that supplied the bed, although we had informed them that he’d died, to say could they come and service it. So, ah, expect that sort thing. So it was it was, took me quite a while to get the room back how it was before.
 

Heather used to worry about whether she would find her husband still alive the next morning. Perhaps it's better not to know how much time is left.

I think our consultant, or my husband’s consultant, was somewhat reluctant to actually say, “This is terminal.” But I think it was me really that insisted and as I sort of knew him slightly, I felt I was able to say, “Well, is this terminal? Is this pulmonary fibrosis and how long has he got?” And he was very straightforward and he said, “Anything between four and five years.” And, in a way, it was easier. It was easier to know that this had what is what we’d got left and really I wanted to make the most of it but I think my husband gave up. But it was easier to know than to keep wondering, “Is is it this? Is it terminal?” It was much easier to deal with when we actually knew.

A sort of a timescale but, of course, he went way past the timescale that he was given. So once that time was up, it was really strange because I kept thinking, “Well, he shouldn’t be here now.”

“He shouldn’t be here now.” And because it was getting very hard I began to think, almost think, “Well, I wish it would happen because life is so awful for both of us.” That I didn’t like to see him so distressed and he didn’t like to see me so distressed and it was just really very hard to accept that perhaps it’s better not to know how long someone’s got. I don’t know really. It.

May or it may not be but I think if you’re given a timescale you expect to go either before then. You don’t certainly don’t expect to go past it.

Did you feel you were under a lot of stress?

Yes. Yes, I used to come down in the mornings if he hadn’t called me and I didn’t know whether I was going to find him dead or alive and that was absolutely awful.

For the last two weeks of his life he was in a nursing home and I feel, had I known it was going to happen, [tut] I might have kept him at home but you don’t know do you.
 

Heather felt exhausted most of the time and her own wellbeing was affected.

How were you emotionally at that time?

Sometimes I coped really, really well. It was the nights that, it was the days when I hadn’t slept at night because he’d called me a lot that I used to sort of lose it a bit. I used to sit in the chair and I’d doze off and he wouldn’t really appear to know that I’d dozed off and would ask me to go and get something trivial and I think, “Oh, no. I was in a lovely sleep then.” [Laughs].

But no, it’s I think I was exhausted. I think I was really exhausted most of the time because, although you’re asleep, you’ve still got one ear, Bill had a bell and I had the receiver.

And he used to call me. I used to give him his meals first and as soon as he’d finished he’d call me and I wouldn’t have finished mine and then I used to say, “Bill, will you please just wait a second?” He would say, “I can’t bear this plate on me.” So I used to end up not eating my meal because I’d have to come in here and take his plate away and then get him settled again and then mine would be cold and if people were here they used to get cross with him and say, “Bill, let her have her dinner.” And then I used to get cross with them because I thought, “Bless him.” You know [laughs].
 

When Heather took time away from caring for her husband she was afraid that something might happen to him while she was gone.

We did have the carer’s centre supplied us with a sitter and he was a guy that had also been in the RAF so he and Bill had a little bit of something in common. And he was a lovely man and I felt quite safe because he’d been a nurse in the RAF so I felt quite safe going out and leaving Bill on his own with, with this guy. And but I used to get in a panic.

I knew I had two hours and I used to have to try and go down to the town and do the banking, any shopping, the supermarket and I’d be constantly looking at my watch. Looking in my bag to see where my car park ticket was. Looking in my bag to see where my car keys were. It was it was like it was lovely to get out of the door but I just couldn’t, I had to be, I felt I had to get back in to feel safe again because I was always afraid I wouldn’t get home, something would happen to him. And it took a long a long time to get over that. Even after he’d died, I used to go out and I used to used to feel, “Gosh. I’ve got to dash home. Oh no, I haven’t.” And then I’d be home anyway because I’d think, “Oh, I’ve done what I needed to do. I’ll just go home.”
 

Heather and Bill were concerned that all their savings would be gone, but with the support of...

But it was difficult when it came to benefits. What benefits you’re entitled to, when someone was ill the way Bill was ill. It was it was very frightening in the beginning, when we knew that we’d got to have carers and sitters to enable me to go out for a little while, [when we thought that we may have to pay for all of that and I think we were worried that when Bill died, if we had to pay out some of the sums that were quoted to us from Social Services we thought that every penny we owned would be gone. And he was worried that I would be left with not enough money to live on.

It didn’t happen. We were lucky because we had the support of our GP and nurses that pointed us in the right direction and a very good care manager. I couldn’t speak highly enough of her, although I know I can’t say her name, [laughs] but she yeah, she was absolutely brilliant. But they can’t promise you anything because everything has to go to panel and then it has to go to another panel, yeah, and so we were some, some way down the line before we actually realised that fine, this is going to be fine because he is terminally ill, we have had this thing called continuing care.

Apparently, it’s very difficult to get because you have to reach certain criteria’s and they’re quite difficult to reach. I guess they’ve changed again now but it was a huge relief when we knew that actually, we haven’t got to pay for this, which I can imagine it would, a lot of people would be very worried and it would add to all the stresses and strains that you’re already going under so.