Katie ' Interview 13
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Katie cared for her sister-in-law Sarah. Sarah and her daughter came to stay with Katie’s family for the first 6 months of her illness. She was feeling very unwell and struggling to cope with her health and the needs of her young daughter. Then during the last 11 months of her life Sarah stayed with Katie intermittently. Sarah did not want her daughter to know what was going on and it was very difficult for Katie and her family to keep up a pretence that Sarah would get better.
When Sarah first stayed with Katie, she was having cancer treatments and so she spent a lot of time in bed. Katie would take the children out as much as possible to give her a quiet time, but it was occasionally quite stressful trying keep the children quiet so Sarah could rest.
Once Sarah became very unwell and was receiving palliative care, she returned to Katie’s home. The occupational therapist arranged for the home to be adapted to help Sarah. A wheelchair was also delivered but it was difficult to use in the home. Later Sarah had a hospital bed installed in her bedroom.
Katie undertook most of the caring needs for Sarah, washing, dressing, cooking for her and helping with toileting. As Sarah’s condition deteriorated Macmillan nurses helped Katie with her care. Katie also found the Macmillan nurses were very supportive of her. Often Katie was able to talk to the Macmillan nurses about her concerns, which was a huge relief as she was trying to ‘keep it all together’. The family was also given a social worker to help the family talk through their fears and concerns.
Katie felt it was very important that she was a companion to Sarah, especially when Sarah became more ill and was no longer able to get downstairs and so spent nearly all her time in her bedroom. Sarah needed a lot of reassurance most of the time, although she didn’t really accepted that she was going to die until the last few weeks, despite being given information by her medical team.
Katie had to rely on a number of friends to help her to get children to and from school, and taking them out to the park or to play. Katie did all her shopping on-line at this time. Whilst Katie still did all the cooking, she did get a cleaner in to help with the housework. Cooking for Sarah could be quite stressful as she had little appetite and Katie would cook something she fancied as quickly as possible, so she could eat it before she started to feel nauseous. When Sarah had people visiting Katie would often end up cooking for 12 or 14 people, which was a strain on top of all her caring activities.
Katie made sure that she had a couple of hours away each week to meet up with her friends. She found her friends were very supportive during this time and she was able to talk through her concerns and feelings.
Sarah was in a great deal of pain and went into a local hospice for 10 weeks to get her pain under control. Once her pain was controlled and she returned to Katie’s home, she seemed to be able to think more clearly. It was much easier for Katie to be Sarah’s companion when she was pain free and thinking clearly, although she still had mobility problems.
It was only in her last few days that Sarah felt so unwell that she didn’t want to continue and she realised that she was going to die. Once Sarah had accepted that she was dying Katie was able to talk to her about her wishes in regard to funeral arrangements. It was a relief for Katie to know Sarah’s wishes so there were no family pressures regarding how the funeral should be.
Sarah died in the night and Katie arranged for the undertakers to collect her body before the children awoke. The family then told the children as they got up in the morning. The undertakers were in the same road as Katie’s home so she was able to visit Sarah several times before the funeral, which she found comforting.
It was hard for Katie to move from being responsible for most of Sarah’s needs to suddenly not having to care for her. She also missed the nurses coming in and out of her home every day.
Katie feels it was a privilege to care for Sarah, to share the best and the worst of her as she battled with her cancer.
Katie's sister-in-law needed to gain weight but had frequent nausea so often requested that Katie...
Katie's sister-in-law needed to gain weight but had frequent nausea so often requested that Katie...
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.
Katie's sister-in-law was always apologising to her about having to deal with her incontinence....
Katie's sister-in-law was always apologising to her about having to deal with her incontinence....
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.
The Macmillan nurse was a great support for both Katie and her sister-in-law Sarah and sometimes...
The Macmillan nurse was a great support for both Katie and her sister-in-law Sarah and sometimes...
Were you aware of support you could have in caring for her?
The Macmillan nurses were very good at speaking to me separately. When they came they were obviously here for Sarah but there were a couple of points where I, one particular terrible weekend we’d had with, with out of control pain and Sarah had got the point where she said she couldn’t do this anymore, and I rang the Macmillan nurses about that and they realised how upset I was. They then I kind of, we kind of had a second they they’d see Sarah but they’d also talk to me about stuff and that I found that very useful.
Katie was relieved when the equipment was removed after Sarah's death as it meant they could...
Katie was relieved when the equipment was removed after Sarah's 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.
As a full-time carer for her sister-in-law, Katie became less available to her husband and children.
As a full-time carer for her sister-in-law, Katie became less available to her husband and children.
Did it change your relationships with your husband, your children?
Yeah.
Can you talk a little bit about that for me?
Well, rightly or wrongly Sarah kind of came first, especially when we knew that she was dying, I put her first all the time because I thought that was the right thing to do but… I know the children did, they didn’t suffer but they knew I wasn’t the same mother to them and I certainly wasn’t the same wife. I wasn’t available to my husband in the same way although, you know, Sarah was [Name]’s sister and she came here because they have a very close relationship. And, initially, I was the one that was like, “I can’t do this. You’ve got to be joking.” But, you know, [Name] was like, [Name] [Name] was the one who was, “Come to us. We’ll look after you. We’ll help you. Just come here and it will be all right.” But, you see, as it as it went on and it wasn’t going to be all right he struggled.
He became very angry and that all came out sort of within the relationships within the family and I found that I, you know, I was Sarah’s advocate and I always came down on whatever I thought was best for her. So yeah, it was our relationship, luckily we have a very strong relationship and we’re all right but there were times when it was very difficult between us.
Katie found it difficult to switch off when she and her husband had a weekend away from caring...
Katie found it difficult to switch off when she and her husband had a weekend away from caring...
We managed to go away for a weekend but actually, I found it incredibly difficult because one of Sarah’s sisters came to look after everything over that weekend and she was, she did a fantastic job but she they did phone me a couple of times and just as you’re starting to kind of relax I’d get a phone call and it’d be, “[huh] What’s happened?” So it was incredibly difficult to switch off, even though we were away. I was constantly thinking, “Is she all right?” It was still very, it was just before they managed to get the pain sorted as well so yeah, I just knew I kind of knew what was going on at home. I knew what it was like at home and I knew what would be going on here and how stressed my sister-in-law would be in my role and yeah, it’s difficult to it’s difficult to really take a break from it.
Caring for her sister in law and her young niece was expensive. Katie was grateful that her...
Caring for her sister in law and her young niece was expensive. Katie was grateful that her...
Did you find that caring for Sarah had an impact on your, you financially?
Yes, it did.
In many ways actually, because I think, you know, when you’ve got somebody unwell at home you’re spending all your time in the house. You’ve got the heating on. You’re running out buying x, y, z that they fancy for tea or x, y and z that they need for, you know, for personal care or, so yeah, it was a very expensive time actually.
And yeah, I mean I dread to think how that how that impacts on, luckily, we’re, you know, my, my husband was happy to go out and just keep earning the money and, and for us to all sit here and spend it. But for some people they don’t, obviously, you know, if you’re, if you’re caring for your partner and you can’t work, that must, must be really difficult. Because yeah, it definitely, we really noticed the, the kind of drain on our on our finances but the, you know, you try not to, you try not to kind of think about that too much because it feels like it’s not the right focus, if you know what I mean. But yeah, Sarah, Sarah was unable to work for the last few years of her life really.
Katie wishes her sister-in-law had made use of the hospice services earlier on, but Sarah had not...
Katie wishes her sister-in-law had made use of the hospice services earlier on, but Sarah had not...
I would say to kind of access as much support as you can right at the beginning. I mean I really wish that we had accessed the, the hospice much earlier on in Sarah’s illness because we were offered that, well, Sarah was, you know, offered that but because of the difficulty she had in coming to terms with the fact that that this was a terminal illness she was very, very reluctant.
And I just, you know, with, with hindsight, it’s very, the care that she got there was very differently focused to the care at the hospital so even if you’re, you were still having, you know, even while Sarah was still have the active treatment I would have somehow or other, tried to work it that we had, we had that, that other, you know, maybe tried to get her in for respite or something like that. And, and that would have just opened up all these doors that kind of came and felt, in some ways, felt slightly too late for, for some things. It’s like there was there was a lot of stuff that Sarah could have got involved in that might have helped her process. The things that she was going through or even helped her use, you know, use the time that she had where, you know, she was always trying, trying to find things to do that she could do just lying in bed.
And again, they have all these things going at the hospice, which she could go and join like art classes, whether you’re in a bed or not in a bed, it doesn’t matter. Talking groups where you can just go in and talk about your experience with other people who are going through the same thing. I just I think a lot of those things would have been really beneficial for her but also would have opened up more support for myself or and the family for kind of the situation that that we found ourselves in.