Imagine you are on your honeymoon, sitting at a candlelit table with your new spouse, watching the sun as it disappears into the ocean’s horizon while contemplating the enormity of your recent promise to share your lives together. Now imagine that around that romantic, candlelit table, sit you, your spouse, and your personal assistant, Joe.
While regaling me with the conventional reports of romantic activities, hot weather and glorious food, my friend, who I will call Sam, revealed that he spent his post-nuptial holiday with his bride and his full-time live-in care assistant. While this may sound like the ultimate third wheel awkwardness, without this support Sam, who is a full-time wheelchair user, would have been denied this marital rite of passage.
Naturally, curiosity made me probe a little deeper, not only because interest compelled me to, but because this unconventional dynamic is one that I will have to manage in my own future.
In an era when wellness articles advocate the importance of solitude, the irony of my life is that, in order to be independent, I will never be alone; in fact, I am rarely alone for more than 10 minutes. Born with cerebral palsy, I employ daily personal assistants to work for me in my childhood home. Indeed, it is only with their help and the use of my voice-activated computer that I am sitting here writing this article.
The cruelty of the paradox I am in, deeply desiring to be left alone, but finding that in solitude I am rendered unable to do anything, is glaring. A sociology research project conducted at the University of Sheffield entitled ‘Living Life to the Fullest’, found that “for some, 24 hour or live-in care is experienced as a feeling of not having control, being dictated to, and can bring a loss of spontaneity”. No kidding.
More widely, hearing Sam’s story made me wonder what the implications of having a live-in PA are on the family unit, and how those who live with the person who requires care deal with this necessary and permanent intruder. For most people, homes are sacred places, accessible to others by invitation alone, and only for determined periods of time.
Sam also told me this: his mother cried twice when he broke his neck. First on the night of the accident itself. And second: upon hearing he was to be discharged from hospital with full-time live-in care. She had never shared a house in her life and feared the desecration of her privacy.
Describing a perpetual state of unease, people with a live-in carer cannot leave rooms untidy, nip downstairs wearing only underwear, or walk from the bathroom to the bedroom in just a towel, for fear of judgement from, and awkward encounters with, the worker living in their house. And it’s not just getting used to one person: employing live-in PAs means welcoming multiple strangers into your home, contorting your private space into a workplace. I have found this stressful. My family, while very supportive and fond of my support staff, candidly acknowledge that having carers work in the home can be intrusive. However, they are quick to qualify that they welcome this necessary intrusion as it enables me to live a more independent life.
This feeling of infringement upon family privacy must only get more complex at times of uncertainty and vulnerability, whether introducing a new romantic partner to your life or when bringing your first child home. Even Prince William was afforded the privacy to drive his wife and firstborn son home from the hospital alone, a seminal journey which cements the transition from being a couple to becoming a family. For my friend Sam, this pivotal journey following the birth of his first child included his care assistant, detracting from the intimacy of the moment.
Yet when you need a live-in carer to facilitate your independence so that you can reach these milestones, the depth of this privacy conundrum is cavernous. Indeed, many living in this situation recount how inadequate management of their live-in assistance has jeopardised such crucial times of personal growth.
The psychologist Dr Christopher Alan maintains that “it is important that the person with the long-term condition remains in control of the process of using a PA to assist them”. Excellent advice, which I could have used when I became an employer, aged 18.
As it was, I received no guidance on how to navigate the daunting employer-employee relationship. Questions regarding boundaries, preservation of my own space and the interaction between my staff and family were left to me to answer through trial and error. Through the same experimental process, my friends with live-in care have found that if they are fortunate enough to build a self-contained separate annexe on their property for their assistants to live in, they can achieve a semblance of a private life. However, this is not a financially viable option for the majority of those who require this type of care, which is commonly funded by social services, the NHS or a combination of the two.
Sam, for example, recently moved, in part to give his assistants their own self-contained living quarters, after discovering that they had become reluctant to use his kitchen, often going without food, for fear of impeding upon his family’s privacy. This made me wonder whether pressures of constantly being responsible for the welfare of employees also adds an additional stress to family life.
Film portrayals of carers and their disabled employers inevitably constrain the relationship to the universally comprehensible categories of romantic affairs and life-affirming friendships. In “Me Before You”, Will, the wealthy quadriplegic who lives in a castle, drives his wheelchair onto the dancefloor with his carer, Lou, strewn across his lap in a semblance of an embrace. The flirty exchanges which follow are supported by the impassioned lyrics of Ed Sheeran.
This scenario of a romantic entanglement has happened to exactly no one I know who has a live-in PA. The film omits the more unsavoury elements involved in care of a quadriplegic, for instance the changing of a catheter, allowing Lou to completely occupy first the role of a friend and then love interest. This offers a comforting tale for an audience which, for the most part, is oblivious to the realities of this relationship.
That isn’t to say that you cannot become friends with your PA. Because of the very intimate nature of the relationship between carer and employer, meaningful relationships do occasionally form. Indeed, my former care assistant, who is now a close friend, travelled hours to witness my graduation from university. Sam credits one of his assistants with being pivotal in his successful courtship of his wife.
So apart from respecting each other’s privacy, what does it take to make this unusual family dynamic work? According to another friend, finding the right people to employ is key. I know this to be true, having employed both amazing and dismal individuals, one of whom stole my car. The “right person” will differ for each employer, and is often only found through a combination of luck and perseverance. For instance, when I was at university, I looked for an assistant who would blend in and be easily mistaken for a fellow student.
Talking to people who have live-in care, it is clear that the best care assistants will learn the ways of a family, tuning in to the times when they should make themselves scarce, whether for a family argument or an intimate moment. Once you have struck gold and found an employee who fits into your home, there is often pressure to retain this person, potentially unbalancing the employee employer relationship.
But that gift for sensing the mood or perspective of a family doesn’t always happen. And employees come with their own prejudices and sometimes fantastical beliefs. Robert, who is paralysed from the chest down, told me of the time a new employee told him: “The only reason you are unable to walk is because you don’t believe you can”.
Initially stunned into silence, Robert eventually retorted: “I’m disappointed that someone so intelligent would think that for the 26 weeks that I was flat on my back following my accident, I did not lay there for hours trying to move my feet, my legs, my hands”.
Robert was then forced to live with this person’s ignorance until their three-week live-in placement was over. If there’s a personality clash, or an ideological one, people like me don’t have the luxury of immediately dismissing a problematic assistant because we are dependent on their support. Nearly all of those who require live-in care will have periods where they are forced to live in situations that are at best uncomfortable, at worst hostile.
Another minefield for those with live-in care is navigating the boundaries that need to be set. What do you ask your partner to do for you, and what do you ask your assistant to do? For instance, making a cup of tea is an activity that you would expect your partner to do for you as a small token of affection. Do you ask your assistant to do this instead? When does your care assistant’s interaction with your baby cross the line of helping you to help your child and transition into the role of a nanny or even a surrogate parent? The answers to these questions vary in each family and are often based upon the personal informal arrangements each individual makes. For example, Sam describes his care assistants’ role in relation to his baby as “acting as his hands”. While he would never leave his son with them, when he is home, they help him to prepare bottles and nappy bags.
As I look to my future, when I will be moving out of my childhood home to live independently with live-in carers, I am struck by the contradiction and struggle between being independent but needing support to live independently. If managed in the correct way, establishing privacy for all involved, setting boundaries and having good levels of retention of employees, a live-in care assistant can enable a disabled individual to positively contribute to society whilst fulfilling their true roles of son, daughter, husband, wife, father or mother without them feeling like a burden on loved ones.