It's been emotional
In the fifth part of her series on social care, Victoria Brignell explains the emotional effects of
To my family and friends I am a 33-year-old radio producer. In the eyes of Her Majesty's Revenue and Customs, I'm a small business with an annual turnover of more than £90,000. That's roughly the amount I will spend on care this year (the exact figure will depend on how much sick leave my PAs take). Like any business, I have paperwork to handle. But while employing PAs does entail taking on a certain amount of administration, it is the emotional impact of requiring care that can be far more overwhelming.
Being paralysed from the neck down, I need assistance with most aspects of daily living. However, the truth is I've always found it hard to ask for help. I became conscious of this aspect of my character when I was about nine years old, a couple of years after becoming disabled. I have a vivid memory of one afternoon at junior school.
I was in the school hall with the rest of my year group taking part in choir practice (at my junior school everyone was included in the choir regardless of singing ability). As I sang along, the brace that I wear to support my body began to dig in under my arm. All I needed to do was to tell the teacher that I was uncomfortable and she would have sent a message to my carer who was on call in the staff room. That would have been the logical and sensible thing to do. However, I couldn't bring myself to do it. My instinctive reluctance to ask for help together with my desire not to interrupt the choir practice proved to be a lethal cocktail.
Gradually the pain grew worse. Still I kept quiet. I tried to ignore it but the pain just kept growing. Eventually it became so bad that I burst into tears. At this point the teacher jumped to the conclusion that something serious must be wrong. Not only was my carer summoned but also the school secretary and my mum was rung at home. Trying to avoid asking for help caused more disruption than if I had simply asked for help in the first place.
Despite the fact I've been disabled for 27 years and using carers full-time for 16 years, it doesn't get any easier psychologically. I still don't feel comfortable asking people to do tasks for me. There are people who seem to relish ordering other people around. Well, I'm not one of them. If I had a choice between doing something myself and asking someone else to do it then I would opt for the former, not the latter. By instinct I like to be independent. It's therefore rather ironical that I've become tetraplegic.
The relationship between a disabled person and a PA is unlike any other. On one level it's a business relationship - the relationship between an employer and employee or client and service provider. But a PA may also spend time in your home with you and help you with the most intimate aspects of personal care, so you need to feel a sense of companionship as well.
The relationship is full of contrasts. For example, one moment you may be having a formal meeting with a PA to voice your concerns about how they are doing part of their job. The next moment you will have to ask them to help you go to the loo. A PA may only stay in the job for a few months but in the course of that time they may find out more about you than most of your relatives who have known you all your life. You may spend more time in the company of your PA than your friends, but that doesn't mean your PA is automatically a friend as well.
Every PA I've worked with has had different strengths and weaknesses, and different likes and dislikes. Some PAs are able and willing to transfer me from my wheelchair to my bed by doing a manual lift whereas others will only use a hoist. Some PAs have strong practical skills but will struggle to write notes or cards. Other PAs may be experts on word processing and typing but less proficient with hands-on personal care. Some of my PAs prefer to wear gloves whenever they do something which involves touching me, others only wear gloves when helping me with toileting, others hardly wear gloves at all.
Each week I'm helped by at least six PAs and in the last decade I've known 28 different permanent PAs. I've had to become accustomed to working with people with a range of personalities. At this point in time I'm lucky enough to have a team of top-class PAs whose company I enjoy immensely. Over the years there have been some PAs I've clicked with almost immediately and other times when I've had to work very hard to develop and maintain a rapport with a PA. As I look back over the list of PAs who've helped me, there are some I have loved being with and others I would prefer never to meet again. But during the time they are in my employment I endeavour as much possible to treat all my PAs the same. It would be unprofessional of me to show favouritism.
When my friends and I were about to go off to university for the first time I remember one of them saying to me, "At least when you start at Cambridge, you won't have to worry about being lonely. You'll always have your carers with you". What this friend didn't understand was that it's perfectly possible to have people around you and still feel alone. In our private lives, most of us choose to be with people we have something in common with - we might have been to the same school or university, have the same employer or occupation, have similar beliefs and values, the same sense of humour or pursue the same interests and hobbies. I spend much of my private life in the company of my live-in PAs and there have been periods over the years when I've had very little in common with them. This difference between us can make me feel isolated even though my PA is physically near to me. It's partly my fault for having unusual interests. I'm keen on history, politics, art and theatre but it's very hard to find carers who have an interest in these subjects as well as the right practical skills.
A few years ago I saw an amazing play in London. It was full of profound ideas, clever dialogue and perceptive characterisation. As I left the theatre I was so excited by what I had just witnessed. My head was buzzing with thoughts and emotions. In the taxi on the way home my PA asked me what I thought of the play. I said: "Fantastic. What did you think of it?". She replied: "I didn't like it. It was too long and dull". Suddenly I felt like a balloon that had just been pricked by a needle. The joy of the evening vanished. I really wanted to share my excitement with my PA but I knew that was impossible. Her tone of voice, her facial expression, her body language - everything about her exuded boredom. I've never felt more lonely than I did at that moment.
In contrast, I was delighted to discover that another PA and I shared similar musical tastes. I love going to classical music concerts, especially to performances of choral works. When I told this PA that I had booked tickets for a performance of Rachmaninov's Vespers, she exclaimed: "I love Rachmaninov!". It was such a relief to know that I wasn't making my PA sit through a concert that she would hate.
When people ask me if I live on my own, I'm never quite sure how to answer that question. I usually answer yes because I don't live with a partner, relatives or friends. But I do have a live-in PA and for most of the day time hours I'm at my flat there is a part-time PA present as well. During the last decade I've enjoyed the company of many of my home PAs, but I must admit there have been times when I've wished I was genuinely on my own.
I once had a live-in PA who liked to play the same pop music track over and over again. Eventually it became irritating but as she was a generous and caring person I didn't have the heart to ask her to stop playing it. Another former live-in PA often used to cook soup which had the most revolting smell. I normally love the aroma of cooking but this smell just made me want to throw up. To this day I'm not sure what the ingredients were. Frankly, I'd rather not know. Again, I didn't say anything about it. I decided that it might create ill feeling between me and my PA if I asked her not to eat that soup again.
In the past, the TV and radio could pose an issue. I used to have only one TV and sometimes my PAs and I wanted to watch different programmes at the same time. There were also occasions when I tried to listen to a programme but found it impossible to hear what was being said because my PAs were chatting to each other or to me. You can't ask people to stop talking without it sounding very anti-social. Eventually I solved this problem by acquiring a second TV and radio for my bedroom. If there is a programme I want to listen to without any disturbance I disappear into my bedroom and watch it in there.
Sometimes I have found myself having to choose between what my carers want and what is in my own best interests. This is a horrible predicament to be in. Many years ago, the two PAs who were with me on Guy Fawkes night asked me if we could go and watch the fireworks display in the local park. My heart sank. I like fireworks too, but I also need to avoid becoming too cold. When I'm out in the winter, my feet can quickly feel like blocks of ice. Sitting for a long time in the open air on a freezing November night was not an attractive prospect. However, if I didn't go then my PAs wouldn't be able to go either. After hesitating a long time I came to a decision. As tactfully as I could I replied that it would be best if I stayed indoors and I explained why. I hated declining my PAs' request. I knew they would be disappointed but I hoped they would understand. Although they didn't complain explicitly, for the rest of the evening there was a distinct coolness towards me. My body might have stayed warm but the atmosphere in the flat that evening certainly wasn't.
One of my strengths (and weaknesses) is that I am very sensitive to the emotions of the people around me. I can detect when a PA is angry, worried or sad without them saying anything. When you have spent a large amount of time in someone's company you can tell from their body language and their tone of voice how they are feeling. I have a tendency to assume that if a PA is unhappy it must be the result of something that I have done or said. I blame myself and start fretting about which one of my actions might have been the cause. It therefore comes as a relief if it finally emerges that the PA has been upset by an event in their private life that has no connection with me.
If a PA is having difficulties in her private life it is helpful if they mention it to me. I don't expect them to tell me the details. It's just reassuring to know that it is not me that is making them unhappy. If a PA is concerned about anything related to their job, I prefer them to tell me rather than bottle it up. Sometimes I can't change what is troubling them but sometimes I can come up with a solution. The worst thing is not knowing why a PA is unhappy.
Dealing with PAs' concerns and complaints is one of the hardest aspects of needing care. Sometimes I think employing PAs is good preparation for a career with ACAS or the diplomatic service. One morning a few years ago I was lying in bed waiting to get up. At 7am my PA came into my bedroom with a face like thunder and her first words to me were: "Victoria, I'm pissed off". I braced myself for what was about to come next. What had I done wrong? "I'm not pissed off with you," she quickly added, as if she had read my mind. "But I am pissed off".
She then explained that she was annoyed with another one of my PAs for, in her opinion, being late too often. I took a deep breath and explained as calmly as I could that I didn't have the power to make someone punctual, that the lateness had not resulted in her working any longer or doing any tasks outside her job description and, finally, that there were acceptable reasons why the other PA had not arrived on time. My words seemed to help defuse the situation. After that, the PA didn't mention the issue again. But the conversation left me feeling emotionally drained.
Sometimes I hesitate before asking a PA to help me because I am nervous about what they will think of the request. You can feel sometimes as if your PA is judging you and your actions. I've had to teach myself to ignore what might be going through a PA's mind otherwise I wouldn't be able to do everything I want to do. There are times when a PA will query why I'm asking her to do a particular task and I'm obliged to explain and justify why I want to do the task in question. This can be frustrating if it delays getting the task done or if you sense that a PA is trying to avoid carrying out the task. On the other hand, it can be helpful as occasionally a PA will come up with a better way of achieving the same objective. At its best, the relationship between a disabled person and their PA is a partnership with each contributing the benefit of their experience - although ultimately it must always be the disabled person who makes the decisions.
When I'm trying to do tasks quickly I'm always struck by the contrast between my mind and my body. While my mind might be racing with activity, my body remains motionless. This is the time when my disability becomes the most frustrating. The speed with which I carry out tasks is mainly determined by the speed of my PA. An experienced PA who has worked with me for a long time will inevitably be quicker than someone who has only been with me for a few days. But PAs with the same level of experience will also vary in their speed. Some people are just naturally quicker at doing things than others.
When you become tetraplegic, you effectively lose most of your privacy. It's difficult for me to do anything without one of my PAs knowing about it. In a way, I live in my own version of the Big Brother house. I may not have millions of viewers monitoring my every move but there is almost always someone around me who is aware of my actions. Most people are able to hide at least some of the errors they make each day but my PAs know most of my mistakes.
As privacy is a rare and precious commodity in my life, I take whatever measures I can to preserve it. My PAs have a confidentiality clause in their contracts and whenever a new PA starts I always stress to them the importance of not passing on to other people any knowledge they gain about me, my job and my family. I've positioned my telephone in the hallway of my flat so that if my PAs are in the living room or kitchen they can't hear what I'm saying. And if I want to keep post private I open it with my PA who has difficulty reading without her glasses.
I also believe that confidentiality works both ways. I have a policy of not repeating anything my PAs tell me about their private lives to my other PAs, unless I have their permission. Some of my PAs have had very traumatic experiences in their personal lives. There have been times when PAs have revealed to me intimate and sensitive details about themselves and treated me like a kind of counsellor.
Many years ago, a PA (who is no longer working with me) told me while she was cleaning my teeth that she had been raped by a manager at one of her previous jobs. I was the first person she had spoken to about the incident. I didn't know what to say to her. My school had taught me how to conjugate a Latin verb but not how to counsel a rape victim. With hindsight, I realise that I was helping her simply by listening to her story. Why she chose to open up to me I don't know. I sometimes wonder what happened to her. I hope her life has improved since then.
My disability is the same today as it was when I was at school but the number of times I ask people to help me is much greater now than it was then. The reason for this is simple - I try to pack more activities into my day now than I did in the past. On a typical weekday I'm in work for at least eight hours and much of this time is spent giving intensive directions to my PAs. In addition to my full-time job, I also do charity work, serve as a school governor and have an active social life.
My busy schedule is something I celebrate rather than regret. I believe in living life to the full, giving something back to the community, and making the most of the opportunities that come my way. However, there are times when I'm overwhelmed by what I call "request overload syndrome" or ROS, moments when I simply can no longer summon up the motivation to ask a PA to help me or explain to them how to carry out a task.
ROS is most likely to hit me when I'm being helped by an agency carer who hasn't worked with me before and who therefore requires a high level of instruction. When ROS does strike, I try to choose an activity which doesn't require much input from my PA, such as watching TV, reading a book or chatting with a friend on the phone. This gives me a break from giving directions and trying to explain what help I need.
I must confess that I love the moment immediately after I've gone to bed, when I've said goodnight to my PAs, they've shut the bedroom door, and I'm left alone in the dark. Sometimes an immense feeling of relief comes over me. Although I normally need assistance three or four times during the night, it's usually only for a couple of minutes each time. When I go to bed I relish the knowledge that for most of the next eight hours or so I won't need to ask anyone else for help.
At night I experience a kind of psychological freedom. I do enjoy other people's company and I'm eternally grateful to my PAs for everything they do for me. However, I also love solitude, something that is difficult to come by when you're surrounded by carers for most of the day. As Alexander Pope once wrote: "...quickly bear me hence/ To wholesome solitude, the nurse of sense/ Here contemplation prunes her ruffled wings/ And the free soul looks down to pity kings."
In this series on social care, Victoria gives her personal views on how the system works for her. These are not the views of the BBC.