A-Z

Kay Y

Age at interview: 38
Brief Outline: Kay’s brother was diagnosed with MS in 2000 at the age of 25. He is now profoundly disabled and lives in a care home. Kay visits him two or three times a week and thinks of herself as his champion and advocate since both their parents died. [Kay’s brother died in January 2012, after she spoke to us].
Background: Kay, age 38, is a communications officer for a housing association. She is white British, lives with her partner and has no children.

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Kay’s brother was diagnosed with relapsing remitting MS in 2000 at the age of 25. His health concerns (impaired vision and clumsiness in movement) were dismissed by his GP but, following investigations through private medical insurance provided by his employer, his symptoms were confirmed as being caused by MS. For some years his symptoms were not all that noticeable and Kay began to feel that his life with MS might not be too bad. He began to decline, though, in 2004 and soon became wheelchair bound. He is now profoundly disabled and is fed through a PEG tube. Kay recalls how much he used to enjoy eating a Chinese takeaway on her visits to see him at their parents’ home.

Kay is a champion and advocate for her brother, who now has secondary progressive MS and has been living in a care home since both their parents died in the three years between 2005 and 2008. Kay’s mother asked her to promise that she would not put him in a care home but she felt this was too much to ask and was relieved when her brother made the choice to live in a care home near her, rather than be looked after by her in the family home. Kay’s brother moved from their family home to a care home in 2008. The financial arrangements for this have been complex and are still unresolved. 

Kay has had to manage all of this alone and sometimes wishes that she had another sibling to share the responsibilities and burdens of caring for her brother. In talking through her experience with a bereavement counsellor she noticed she talked more about her brother than about her parents. She reflects on this as grieving for the brother she didn’t have and for the impact that caring for him has had on her own life. She feels that she has had to postpone indefinitely starting her own family, for example. 

Kay also talks about a ‘plus side’ of caring for her brother. They have, she says, developed a much closer relationship because of his MS. ‘If there’s any positive sides of my brother’s illness, I would say that in terms of our relationship I think that that’s strengthened and, and we’ve bonded a lot more than we might have done if he hadn’t been diagnosed with MS’. Kay talks about the importance of finding someone to talk to; family and friends, but also people who share your experience. She recommends taking advice on legal aspects of caring for someone with MS. She also says, ‘Don’t give up hope.’
 

Family life changed ‘dramatically,’ when Kay’s brother with MS went to live with their parents. Kay wonders if the stress of looking after him, however willingly, contributed to their own ill-health.

Family life changed ‘dramatically,’ when Kay’s brother with MS went to live with their parents. Kay wonders if the stress of looking after him, however willingly, contributed to their own ill-health.

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It’s quite difficult being the person responsible for their sibling in, in terms of making sure their well-being is catered for. I suppose it’s become a lot more in my world since he moved back home f-, after he moved back home with my parents. Then things became a lot more real, because then it was clear that he was quite disabled and, you know, the family life changed dramatically. My parents were both getting on. And having to have their son come and live with them and for their son to need their support all the time, that was quite difficult, to see the toll it was taking. I mean I know that they wouldn’t have even dreamed of him living anywhere else but, you know, that was quite difficult. 

My mum died in August 2006, which was just over a year after my brother moved back home. She’d had cancer on and off for twenty years. But I think, I don’t know, I’m not a medical professional, but obviously the worry and the stress and the strain of looking after my brother and then the worry about what might happen to my brother when she could no longer look after him in some ways I feel exacerbated her illness and made her decline maybe a bit more rapidly than she might have. 

She was only in her early 60s when she died. She’d been fairly active and, you know, had a very fulfilling life. But the sort of, es-, I suppose the, the last few years of like worrying about her son with his illness and especially the last year or so of taking care of him must have had an impact on her health. And again as my mother declined, my father was running between my mother and my brother making sure both of them had all the support that they could have. Which was quite difficult. And my mother was often the referee in the constant difficulties between my brother and my father sometimes falling out over silly things and my mum trying to keep the peace and tell them to not be so nasty to each other or be s-, having arguments with each other all the time. 

I think my brother, my brother’s, once my, after my father lost my mother I think, you know, he was totally devastated. They, you know, were married for forty years , nearly, and hardly ever a cross word. It was a pretty normal family life. My, my parents both sort of m-, their lives revolved around their children and making sure that we had support and got educated etc. After he lost my mother I think my father kind of lost the will, but I think he carried on for the sake of looking after my brother because I know that for mum’s sake he would have looked after him. And he did look after my brother for as long as he was physically able to, even though he suffered with arthritis and constant pain in his arms and legs, struggled on. How he used to hoist my brother off the bed single-handedly, I don’t know. I’ve done it a few times and it’s hard. Even with somebody else helping you, it’s a hard thing to have to do. But for a man in his mid 70s with ailing health, he just got on with it. And I think you do. You, you just get on with it.

But, and I think also worrying about my brother and what might happen to my brother also meant that my father didn’t have treatment that he maybe should have had. He was diagnosed with prostate cancer in the March before he died less than a year later. They wanted him to go into hospital and have some treatment. He mentioned it to me. I said, “That’s fine. When you need to go I will come, I’ll take time off. You go, you do what you need to.” He then got the doctor to just give him some tablets. Everyone kind of says that prostate cancer is one of those ones that’s quite treatable, and after my father died they said, you know, “It’s quite rare for somebody to be diagnosed and die in less than a year.” But again I, I wonder whether having, the sort of the caring for my brother and the worry about everything around that again may have contributed to my father dying maybe a little bit earlier than he might have if he’d been having a comfortable retirement with no stresses and strains of caring for a disabled son. That’s, you know, things that you think about. 
 

Kay’s family was a bit ‘head in the sand’ at first when her brother was diagnosed. She thinks her mother expected the worst because her cousin had died with MS and so didn’t really want to talk about it.

Kay’s family was a bit ‘head in the sand’ at first when her brother was diagnosed. She thinks her mother expected the worst because her cousin had died with MS and so didn’t really want to talk about it.

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I remember when I found out about that. My mother called me at work to tell me the news. She was very upset because she had a cousin who’d died of MS when he was 28 years old. So she immediately thought of the worst-case scenario. I was obviously upset but didn’t really understand what MS was, what it could mean, and how it might affect my brother and my family as well. Fortunately a member of my work had got some research for me and, and found out a little bit more, got some information from the Internet so I could read about it. 

And then the next time I went up to the Midlands we, we talked about it a little bit, but in that kind of way that families do sometimes, you don’t talk about all, all the detail. And, and because my brother to most intents and purposes seemed quite, quite fine, still his happy, cheeky self, it seemed like, “Is it, is it really something that’s that bad?” So I think heads, head in the sand was probably the situation with our family for some time. I think my mother didn’t really talk about the things that she’d seen with her cousin, so I wasn’t really thinking that it could be such a terrible, terrible thing to have.
 

Kay has done some physical caring for her brother, but the most important thing at the moment is that staff in his care home know that she is responsible for him and that they need to keep her informed about his care.

Kay has done some physical caring for her brother, but the most important thing at the moment is that staff in his care home know that she is responsible for him and that they need to keep her informed about his care.

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Do you think of yourself as his carer?

I suppose there’s two kinds of carer, isn’t there. Sort of there’s, you know, you can have the carer who’s obviously doing the practical feeding, washing, wiping of things and then the carer who’s looking out for their interests. I mean I’ve certainly done some parts of personal care for my brother and obviously when I go and see him I’m wiping, wiping up dribble or changing something or looking after, looking after something for him probably on most visits. And I used to feed him when I could feed him. But, yes, I mean I care, I’m caring for his well-being. I’m making sure that the people that are being paid to look after him are doing that to their best of their abilities. And the only, you know, the only way you can tell that is if you’re paying attention. Because if I didn’t see my brother from one year to the next then anything could be happening to him, you know. 

I mean I’m quite confident that he’s in a good home and obviously I researched that and I went to visit that and I met the staff. It was the only home that I actually visited but it seemed to tick so many of the boxes. And also I went to see the home a couple of years before my brother actually had to move into the home because I’d read about it in an advert in my father’s paper, like a charity thing. And I’d looked into it as a possibility and thought, “Well, you never know.” And because of all the problems we had with, with sorting my brother’s care out after my father died, and obviously grieving for my father, I didn’t feel like I had the strength to go round to lots and lots of different care homes when there seemed to be one right on the doorstep that did everything that we needed it to. And I kind of thought, “Well, we’ll try it out for six months to a year and see how it goes.” 

But I, you know, I attend resident and family meetings. I speak to the nurses and other staff all the time and they know, you know, that I want to be kept informed about everything that happens to my brother, and they do that. We’ve had a few times over when things have got missed, but, you know, on the whole they know that I’m the person responsible for my brother and they need to keep me informed. And so, yes, I do feel like I am my brother’s carer because I’m looking out for his best interests.
 

Kay sometimes feels like her life consists of home, work and visiting her brother. Even when she is out with friends, he is always at the back of her mind.

Kay sometimes feels like her life consists of home, work and visiting her brother. Even when she is out with friends, he is always at the back of her mind.

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I do try and switch off. I’m quite a sociable person and, you know, go out with friends and, and spend time with people. And I mean I love my job and I, I, you know, work probably longer than I should do at work sometimes. And sometimes, well, sometimes I feel like I’m going from home to work to [name] to home to work to [name].

But it’s always in the back of your mind, I suppose. I’m, you know, every time I get, I was at, last Tuesday, was it last Tuesday? Which day was it? Yes, it must have been. Last Tuesday, or Monday, I was at work. I went to lunch with two friends. We had, we had a nice lunch. We got up at the end to leave and I just picked, picked my phone out of my bag and it was on vibrate. And I had a voicemail message and it said, “The home” on the voicemail message and I said, “Oh, it’s the home. I’d better, I’d better phone.” So I just walked away a bit to phone back and they told me that he wasn’t very well and they’d called the GP in to have a look at him and they’re going to put him on antibiotics. 

Well, my friend, when, when I went back to my friends and they said, “Everything okay?” and I said, “Yes.” I said, “He’s, it sounds like he’s got a bit of an infection and they’re giving him antibiotics.” She said, “I could see the way your face changed when you realised who’d, who’d tried to phone you.” Because like, you know, your heart skips a beat, thinking, “Is this, is this when, are they phoning to say something awful has happened? Or are they phoning to say this is it or...?” you know. 
 

Having to meet her brother’s needs is a strain in the background of Kay’s relationship with her partner.

Having to meet her brother’s needs is a strain in the background of Kay’s relationship with her partner.

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What impact does it all have on your relationship with your partner?

My relationship with my partner has obviously been quite affected by everything that’s happened. We’ve been together for nine years as of yesterday. We moved in together about a month after my mum died. So in most of the time that we’ve been together he’s been involved in, you know, my family. Obviously he was at my brother’s wedding. And he’s obviously, he’s seen, he’s seen my mum decline. He’s seen my brother go from a chap who used to speed round in a sports car to somebody who’s bedbound with all the problems that he has. It’s been very hard on our relationship. 

We you know, try to get on with, with stuff and, day to day. He’s given me a lot of practical support, taking me up and down to the Midlands before I learnt to drive, then helping me clear out my parents’ house, helping me with my brother when we’d go up and visit and, and my parents were both alive. He would help me get my brother in and out of bed or help me feed him and, and that kind of thing. Be another person to, for my brother to have a laugh and a joke with as well. He likes ganging up with my brother to pick on me. 

But, you know, I can’t say that it hasn’t affected us, because it has. You know, it’s bad enough when you lose a parent and, and maintain a relationship, but obviously having the situation where, you know, we’ve got another person to consider. I mean my partner’s got two siblings and a mother. He’s got a father who, his parents are divorced and his father is abroad. But his family are quite close and they don’t live too far away from us. But, you know, you can come and go and see them as and when. They can come and see us as and when. 

But we obviously have to go and see my brother and, you know, having to think about things like, “We need to go and get him some toiletries” or, “Can you go and visit him because I can’t visit him tonight?” or... Yes, I mean we’ve had a lot of problems and a lot of arguments over all kinds of things, I don’t think specifically to my brother, but the strain of, the strain of having that at the back, you know. And sometimes that can come out in arguments like, you know, you know, “You don’t have to do the things that I have to do, you know. You don’t have to worry about your brother” and all kinds of things. It’s, it doesn’t make you feel like a very nice person sometimes when you say things like that.
 

Since 2004 Kay’s brother has gone from walking with a stick to being mostly bedbound and fed with a PEG tube.

Since 2004 Kay’s brother has gone from walking with a stick to being mostly bedbound and fed with a PEG tube.

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Generally his health seemed to be okay, apart from these little episodes where he might be very, very tired and have some fatigue. It probably wasn’t until 2004 when he was unwell in the beginning of the year that, you know, we started to see a little bit more change in his condition.

He got married in July 2004 and he got through the day very, very well, except for being a-, not being able to carry a birthday cake to a little boy whose birthday it was on the wedding day, which I did with my brother’s wife. You know, he managed and got through the day and even danced a little bit at his wedding. And it was just such a lovely, happy, happy day and everyone was just so happy to see him looking well. He went on honeymoon after that. And then towards the autumn, after the honeymoon, that’s when his health started to decline a lot more rapidly. 

He’d been diagnosed with relapsing-remitting MS and I’d read about other kinds of MS and hoped that he’d just have relapses and remittances continually and things would always right themselves. But by winter of that year he was off work, unable to go to work because he just couldn’t. He was just pretty much stuck in the house most of the time. The following February was his 30th birthday. I’d come up from London to have a celebration with the family. I can remember him walking up the back garden. He had a stick but he was still walking. We had a lovely weekend. 

A couple of months after that he really started to decline and in the May sadly his marriage broke up and he came back to live with my parents in the Midlands. He was very sick, maybe some of it brought on by his personal difficulties, and shortly afterwards in June went into hospital. He was unable to walk by this point. He was in the hospital for about three months and then moved to a rehabilitation centre where they spent a lot of time trying physio and other things to, to hopefully get him mobile again. Sadly this wasn’t the case and he’s been in a wheelchair ever since. He moved back home with my parents in the autumn of 2005 and lived there for the next three and a half years until my parents had both passed away at separate times. Following that he moved to a care home in London to be closer to me as his only sister, and he has declined even more since then.

He’s now, it’s been confirmed that he has secondary progressive MS and that was confirmed at a hospital trip before he moved to London. Which was, came as quite a shock to me. I think there was always some feeling in the back of my mind that he would come out of his relapse in some way. But to hear that’s what he had and then find, looking and finding out a bit more about that, that was quite difficult to see. He’s, in the last three years he’s been in hospital several times with chest infections. He’s lost all mobility of his legs. He’s got very little mobility of his arms. His speech is incredibly poor. He’s doubly incontinent and relies on care for all aspects of living. He’s mainly bedbound and therefore prone to bedsores and, and has to be cared quite, quite carefully to monitor and manage his condition. He’s been fed via a PEG tube for just over two years now. 
 

Kay visits her brother several times a week but sometimes feels she doesn’t go often enough.

Kay visits her brother several times a week but sometimes feels she doesn’t go often enough.

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But, yes, there’s eternal guilt for feeling that you can’t do more, even though people say, “I couldn’t do what you’ve done” and things. But I think, “Well, you, I bet you could. They’re, they’re, you know, they’re a family member.” But then I, you know, I go and visit my brother as often as I go, two or three times a week, and I walk past rooms and I, some, I’ve never seen people visiting in some people’s rooms. And I wonder, “Does anybody go to these people? Do they have family? Do they have friends?” you know. And, you know, when you feel guilty because you’ve only been twice in a week, and then you think, “Actually, maybe some of these people never get a visitor or very rarely get a visitor. So maybe it’s not as bad as, you know, you think you are.” But I think there’s always guilt, yes.
 

Kay’s brother used to phone and email celebrities to ask them to pay for his treatment. She says this was difficult to manage.

Kay’s brother used to phone and email celebrities to ask them to pay for his treatment. She says this was difficult to manage.

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And then dealing with the changes in his personality. Even though my brother still is a cheeky chappy and, you know, as much as he can communicate he’ll always, you know, have a joke and, and be silly and, and wink at people, he has, he has changed quite a lot. He used to be quite hopeful about being able to walk again and constantly looking for, for ways to try and do that. Hence going for stem cell treatment in 2006. 

But the last year or so he’s become much more, I don’t know whether the word is institutionalised, or whether he just doesn’t think about the possibility of that any more, and I wonder whether he’s lost all the hope. At the same time the things that he used to do to try and to contact, he’d send emails to famous people asking them for money, all kinds of behaviour, phoning up people asking, asking them to help pay for treatment to help him walk again. And it was, it was quite difficult to manage.
 

Kay went to bereavement counselling after her parents died but found she was talking more about her feelings of grief about her brother’s MS than about her parents.

Kay went to bereavement counselling after her parents died but found she was talking more about her feelings of grief about her brother’s MS than about her parents.

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I went to bereavement counselling last year because I was finding it quite difficult. I thought, and I, I guess it was to a degree obviously about grieving for my father and to some degree my mother, even though that had been a bit of time before. I found myself talking about my brother probably 60 per cent of the time, even though he’s obviously alive. And it is a bereavement in a way because I’m grieving I guess for the brother that I don’t have any more. I’ve still got my brother, but he’s a different brother and it’s a different relationship, in some ways good, in some ways bad. 

But it was quite helpful to me to actually sit down and talk about some of the things that you feel you can’t say to your friends or your family, the feelings that you might have about being almost forced into a position of, of being responsible or as a carer for a sibling. Obviously having to sort of deal with that on top of your parents dying quite, you know, within three years of each other is, is quite difficult, and, and trying not to feel resentment for your parents for leaving you with this and, “Why, why didn’t you have another child?” so I had a back-up child, a back-up sibling to help me. But, you know, you are where you are and you have to deal with what you have to deal with.
 

Kay recommends going to counselling to ‘have an outlet to talk about the things you sometimes feel that you can’t say,’ about your experience of being a carer.

Kay recommends going to counselling to ‘have an outlet to talk about the things you sometimes feel that you can’t say,’ about your experience of being a carer.

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And I actually wish I’d had the counselling after my mum died. Because there were a lot of things that, you know, I hadn’t really talked about, about my mum and my relationship with my mum, and then my dad, and then obviously my brother and how my brother and his health has, has impacted so much on, on everything in our family, especially over the last seven years, but, you know, in the ten, eleven years since his diagnosis. It’s always there at the back that, that, “[name]’s not well and he’s, you know, what’s going to happen?” 

The going, yes, going to counselling I, I can really recommend. Because even if you’re, you’re going to counselling to talk to, and it’s not about bereavement, but you, you can be mourning for the person that, that has been diagnosed with MS and, and how they react and the behaviours as a result of having MS. There’s definitely a personality, there’s definitely personality changes in my experience, and having to sort of cope with that and, and come to terms with the fact that you have a different relationship with that person now. We’re not, we’re not a brother-sister so much as a parent-child. 

And, and having an outlet to talk about the things that you, you sometimes feel that you can’t say because people might think you’re, you’re cruel or wicked or selfish, “How can you say that about, you know, your brother?” You just think, “Oh, well, you know.” You know, I feel like I need somewhere to be honest sometimes. And, and that’s been, that’s been quite a useful thing for me, having, having got that off my chest about the feelings of, you know, feeling a bit resentful maybe. To think that like, you know, I’ve had to put things on hold in my life, um you know, starting a family of my own, you know, that's, I can’t even think how I would have coped if I’d had children and looking after my brother. And I know I’m not looking after him in the sense of he’s living with me and I’m doing day-to-day care, but, you know, I never stop thinking about him, I never stop thinking about how things that I do might have an impact on him.
 

Kay talks about her brother’s symptoms being dismissed by the GP as hypochondria. He went to a private doctor instead and was diagnosed.

Kay talks about her brother’s symptoms being dismissed by the GP as hypochondria. He went to a private doctor instead and was diagnosed.

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It was eleven years ago roughly. My brother had been having some issues with his vision. He’d also been experiencing quite a lot of clumsy occasions like walking into doors or doorways. So first of all he, he went to get his eyes tested and although he’s short-sighted he was wearing the correct prescription. So then he went to see his GP and told him about some of the things that had, he’d been experiencing. His GP unfortunately called him a hypochondriac and told him to go away. Fortunately for my brother, as he was a, a senior manager for a retail company he was entitled to private health care. So he, he went and had some tests at the hospital and they did an MRI scan and discovered that he’d got MS. 
 

Kay travelled with her brother to Holland for him to have stem cell treatment, because ‘you just want to do anything to try and make them better.’

Kay travelled with her brother to Holland for him to have stem cell treatment, because ‘you just want to do anything to try and make them better.’

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There’s all kinds of treatments talked about out there and indeed some of them we have tried. We went to Rotterdam in 2006 for stem cell treatment. My father and my brother and I travelled there. It was quite a difficult trip, getting on and off planes and trains and into hotel rooms, and even up to the clinic. But we went and tried it because you try anything and you just want to do anything to try and make them better or at least improve their quality of life. We also tried another treatment, a spray treatment, which initially seemed to have some improvement in his cognitive actions, I don’t know if that’s the right word, but, you know, after a while it seemed like it really wasn’t doing anything. So that was stopped. 

[Name] doesn’t have any kind of treatment now for any of his MS apart from things to, to deal with the symptoms, things to help with spasm pain. He had some Botox in his legs earlier on this year to try and help with that as well. And apart from day-to-day painkillers and paracetamols and antibiotics as required that’s all the treatment and, that my brother gets now. I feel it’s felt that there’s nothing that they can do, and they’re basically managing him and managing him towards the end. And that’s quite difficult when you read magazines from the MS press talking about this amazing treatment and that amazing treatment and there’s all kinds of people featured that are, “I’ve got MS but, hey, I can climb a mountain.” And they don’t tend to feature so much of what it’s like to live with having such, having it so severely. 
 

Kay discovered that finding out who should be responsible for paying her brother’s care home fees was very complicated.

Kay discovered that finding out who should be responsible for paying her brother’s care home fees was very complicated.

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Shall I talk about care and funding?

I mean this is still going on. But after, well, just bef-, when my father got quite sick I’d never really looked at sort of the legal situation and if someone needs to go in a care home how that’s paid for. My parents made their will in the 90s when both my brother and I were both healthy and well, showed us the will, s-, “Left to both of you. You know, if you’re not around, your cousins, and so on.” Basic, standard will. Well, I think it was probably left to each other, and then us. When my dad was getting sick we had a conversation about if [name] had to go into a care home and worrying about my parents’ house and whether that would have to be sold to pay for [name] care. My dad immediately said, “Call the solicitors. I’ll change the will. I’ll sign everything over to you.” 

So I phoned the solicitors, who said, “No, we can’t, we can’t really do, we can’t really do that. But what we can do is set up a disabled person’s trust. So your brother’s part gets left in a disabled person’s trust. And that will protect that, any equity or money from being paid for, to be used to pay for his care. And this money would then be for anything he needs other than that.” And I thought, “Well, that sounds great.” So we made an appointment. Unfortunately my father passed away two days before the appointment was supposed to happen. 

So we went into the situation with the will as is, being left to us in equal shares. My brother’s social worker immediately after we discussed the whole [name] going into a care home situation was like, “Well, you’ve, you know, the house will, you know, have to be sold.” I was quite upset about this. I was like, “It’s half my house too.” And I’d started to do a little bit of research about this and said, you know, “I don’t think you can force me to sell my parents’ house if I don’t want to.” 

Not a lot more was said for a little while, because I think there was a feeling then, once it became apparent about moving to London, that “if it was [name]'s choice to move to London” and those were the words, that the council that he was under would not be responsible for his care anymore. So, you know, “You’d have to go off and do your own thing and it’s nothing to do with us anymore.” The home that my brother was in as a temporary respite, there was a key worker there who had another client who had moved, not as far away, but to another borough and found that, “No, actually that’s not true. And you would be responsible still as the home council, even if you choose to live in another council.”

I wish that I’d taken legal advice, you know, before that point. Because I’ve had to stumble my way through for quite a lot, quite a lot of the first year I stumbled my way through trying to understand the care system, trying to understand the rules, trying to understand, you know, what we’re responsible for, what we’re not responsible for. 
 

Kay goes with her brother to hospital appointments and sometimes has to speak up to ensure that he is properly cared for. Having power of attorney gives her authority to act more widely on his behalf.

Kay goes with her brother to hospital appointments and sometimes has to speak up to ensure that he is properly cared for. Having power of attorney gives her authority to act more widely on his behalf.

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And being his champion and being his, you know, the person who, when we go, when we go to hospital or when he’s in hospital, making sure that, you know, people are taking the best care of him and giving him as much as they can do. We recently had to go to hospital for an appointment in outpatients. We went, we went in patient transport. Obviously the patient transport people need to take their stretcher away with them when they’ve dropped you off. We got into outpatients, I went to reception, they said, “Have a seat.” I said, “Well, my brother needs to be transferred on to a bed because he, we’ve come in patient transport and they need to go.” 

They ummed and ahhed for a while. We went, we went into a little room and they pointed at, a bed like you’d have in the GP surgery, with no arms, no way of getting him on. There was no hoist in the room, no, no slide board. I was like, “I’m glad I’m here. Is [name], are you moving, you know, how are we getting him, you know, we can’t put him on there” first of all was the first thing. You know, “There’s no support, there’s no, he needs arm rails, he’s completely immobile.” “Well, we’ll push the bed against the wall and you can sit on the other side and, you know, that will be okay.” I was like, “No, it’s not.” And I’m thinking, “Imagine if I’d not come with him. Would they, would they have stuck him on this bed?” I was like, “I’m not putting him, having him put on that bed.” I was like, “I’m just not having it.” Eventually it transpired that the appointment was a false appointment and we had to go home. But it was just as well we hadn’t moved him off the stretcher because we managed to get back with the same patient transport people. 

But sometimes it, it astounds me that people don’t have as, especially in hospitals, as much regard for how disabled someone can be. That’s not the first time where I’ve been somewhere and he’s had to go for a scan or something and they’ve said, “Oh, if you can just slide on to this bed.” And it’s like, “Have you read the notes of this person that you’re seeing? Can you, can you not see how disabled they are from the fact that they’ve come in on a stretcher, you know, would suggest to you that they can’t even sit up in a wheelchair?” It is worrying sometimes. But then on the other hand there’s lots of occasions where he’s had, well, excellent, excellent support and care in hospital. And, you know, the fact that he comes in on a stretcher sometimes means he jumps the queue. Which is always good when you’re going to hospital.

Do you have lasting power of attorney?

I’ve got enduring power of attorney. They’ve changed the power of attorney since, I think, the last couple of years. It must have been in 2006, I think. My, I don’t know really whose suggestion it was but there was a suggestion in the family about getting power of attorney. And I think my brother had wanted my father and my mother to have it. And my father decided for some reason that he didn’t want to have power of attorney for my brother. So my mum asked if I would do it with her. Fortunately we had it set up so we could act jointly and severally, because otherwise we would have had to do it again after my mother died. 

So I’ve had power of attorney for my brother for all that time, the last five years. I’m at the moment trying to debate about whether to go for the lasting power of attorney because of a legal matter that I need to have resolved. Because of what [brothers' name] neurologist has said about the amount of time or the amount of time he might have left and the fact that the solicitor says that it can take some months to do, I’m not sure whether to do it or not. And so I’m waiting to try and speak to my brother’s GP about whether they think my brother has capability to be able to understand what I’m saying to him about this legal matter that we need sorting out. But everything is always so complicated. 
 

The doctor implied to Kay that her brother might die within 12 months. She appreciates that both the neurologist and the GP have been open about this. The conversations are upsetting but it helps to be a little prepared.

The doctor implied to Kay that her brother might die within 12 months. She appreciates that both the neurologist and the GP have been open about this. The conversations are upsetting but it helps to be a little prepared.

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I said to the home where my brother is quite recent, like at the beginning of the year that, you know, I want to go to any regular appointments that he has. And then he had an appointment with the neurologist, so they told me when the appointment was and it was at 2 o’clock on a particular day. So I’d arranged with work that I’d go straight from, I’d go straight from work and I’d meet my brother at the hospital. I got into the room where the waiting room just on 2, to be told that he’d been and gone from the appointment. 

Because, because he came in on a stretcher, they saw him as a priority at half past 1. And I was devastated because I wanted to speak to the neurologist because I wanted to find out like what the situation was and how he’d deteriorated. So I asked if I could speak to the neurologist and immediately I got, “Data protection, you know. Can’t speak when the patient’s not there,” and all that kind of thing. 

I mean I happened to have, and I said I’d go and get it if they really wanted it, a copy of power of attorney in the back of my car. Eventually she told me to wait, the nurse, and that she’d speak to the neurologist when he came out of his next appointment. Fortunately, the neurologist was quite happy to speak to me and that’s when I went in and was told that, you know, his condition had got a lot worse and that he’d given him some Botox. And, and then he said the words, “I’ve made an appointment to see him in twelve months’ time. If I see him in a year, great.” So I was basically thinking, “So you’re basically saying to me that my brother has about a year to live.” 

I don’t know which way you can deliver news like that that makes it any, any easier. But he did offer to, if there were situations where [name] was in hospital in the future, you know, I could contact him and get him to, you know, go and have a look at him. He also talked to me about if there’s a situation in the future where [name] might have to have, oh, what’s the word for the machines? The neurologist also talked to me about if [name] had, would have to go, if he had to go on a ventilator in the future and, and what his views were about whether or not that would be useful to [name]’s health. It was quite useful to have that conversation although it was quite upsetting, sort of understand the practicalities. Got a bit of time to prepare for it then. And even though, you know, it may be less than what, the time he’s given, or more, it makes you, I guess, be able to take stock of, of the situation and, and try and prepare yourself a bit more. So, so, yes, I found the neurologist that we’ve seen quite useful.

His GP, as well, is quite nice. We had an end of life care conversation as well this year. There’s been a lot of these sad conversations going on and I’m sure they hate it just as much as the relatives. So it’s quite, it’s horrible, but I think sometimes you need people to be honest with you as well. My mum was quite private about her illness and didn’t really let us know how bad it was. It’s a different situation with my brother because obviously you can see it more obviously what’s wrong with him. I think it helps to be a little prepared. I don’t think you’re ever prepared for losing somebody you love, but I think it helps to sort of know, and also feel that you’re making the right decisions. 
 

Although she feels, ‘quite macabre’ thinking about funerals, Kay has to plan for the future, because she is her brother’s next-of-kin. She finds it hard to ‘engage him in thinking about it without depressing him’.

Although she feels, ‘quite macabre’ thinking about funerals, Kay has to plan for the future, because she is her brother’s next-of-kin. She finds it hard to ‘engage him in thinking about it without depressing him’.

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But I mean sometimes I think about funerals and things because, because we live away from where we are and I think about the practicalities and, you know, “Would we have a funeral in London? Would we have a funeral in the Midlands?” And, and then I feel quite macabre thinking about funerals. But, you know, I had to plan my father’s funeral. I kind of helped with my mother’s, though my father was trying to do it all by himself. I’m quite glad he let me in a little bit so I knew what to do a bit when he died. So, I suppose I have an understanding of things that have to happen. 

But then I found out the other day at a home meeting at my brother’s that if you’re moving someone out of a borough, then there’s different procedures that have to happen if you’re moving a body out of a borough and different things that have to happen, and if you are having a burial or a cremation like about the number of doctors that have to sign off the death certificate. Then obviously my brother has a relationship with some of the carers at the home and then I think about, you know, “If they wanted to pay their respects to him, how would I do that?” And thinking, start thinking about me bussing them all up to the Midlands or doing something down here and, I don’t know, my mind wonders sometimes. 

And it has, I’ve had to think about it as well recently because the home that my brother lives in has changed management and they’ve brought a waft of forms that, that need filling in, and obviously I’ve had to fill in most of them because my brother can’t. And some of them were about end of life care, some were about what kind of funeral you’d like, things that, you know, most people don’t talk about to anybody. So having to kind of try and engage him about thinking about it but without trying to depress him, I suppose, is quite a hard thing. 

Because like, you know, when people, you know, some people will make off the cuff remarks to you about, you know, “When I go I’d like this song playing.” My mum did that. My, my dad said to me years ago about having a, a jazz band at his funeral and I arranged for that to happen. But I don’t really have any clue about my brother and what his wishes are, and he doesn’t really want to talk about it. And then you worry that you might not do the right thing. So I do, I think about, I suppose, that side. 
 

Kay highlights a dilemma in the timing of decision-making for people who choose assisted dying. Her brother would now be incapable of making the decision.

Kay highlights a dilemma in the timing of decision-making for people who choose assisted dying. Her brother would now be incapable of making the decision.

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Obviously I’d miss my brother terribly. But at the same time I’d probably th-, I know what I’m going to hear a lot of already, I know a lot of people are going to say, you know, “He’s at peace now. He’s resting. He’s not in pain anymore and, you know, he’s, he...” almost like he’s better off dead. 

And maybe part of me would agree because I don’t, as I said, I wouldn’t want to be bedbound in bed with the way he is. I just wouldn’t want that. I watched a programme a little while ago, Terry Pratchett, where he was looking at Dignitas and the clinics. And there was a young man who wasn’t as disabled as my brother who had MS who, who went there and decided to, to end his life there. And part of me was like, “Well, you’re not, you’re not as bad as my brother. Why are you going yet? Why are you going now?” But if he got to the point where he was like my brother and then couldn’t make that decision, and so obviously he was trying to, you know, nip it in the bud. But whether he went too soon, I guess no one will ever know.
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