Living With Carers: Making It Work

Yesterday, a friend asked how I go about trying to live a normal life with very little space to myself. They were referring to the fact that I’ve now lived in care for 15 years. By that, I mean I have required physical assistance from another person to carry out one or more daily tasks essential to my life (in my case, pretty much every aspect of my life). It has been 24-hour, round-the-clock care since April 18, 2020, so I’ve had to learn to constantly share my living and personal spaces with at least one other person. This has been anyone from some of my closest friends and family to complete strangers. Sometimes, I meet the person in question for the first time as they walk through my front door, and straightaway, my health and life are in their hands until a preassigned time has passed.

It’s not the first time I’ve been asked about this: always having someone physically with or near me regardless of my choice and how I learned to be okay with it. I usually struggle to put it into words, partially because it always sounds like the unspoken part of that question is, “How should someone else in that situation handle this?” But my circumstances are just that, my circumstances, and not necessarily a template someone can apply in their own life. I wouldn’t want to give advice that isn’t relevant to the person needing it just because it is what works for me. But the question is also tricky to answer because I’m not entirely sure how, when or if I’ve learned to be okay with it. Not completely anyways. I now have a lot more clarity on the answer to that question, although I may just believe I do because things are pretty stable for me at the moment. Anything could happen, and I’m back to square one, trying to figure things out. That said, I’m taking advantage of how good things are at the moment with my care. So regardless, this is “How I manage living with carers, 24 hours a day”.

At first…

For the first year post-injury, I don’t think I actually ever saw myself as someone who “lived with carers” because, frankly, I didn’t. My first 6 months were in the safe bubble of a specialised rehabilitation unit. Everyone who wasn’t a patient knew more or less how to interact with me and help me achieve my needs. In contrast, the care company that took over my care after my discharge from the hospital had never had anyone with my profile: a 20-year-old kid who knew almost nothing outside the walls of university life, originally from a different country, a different culture, who had ended up in their care following a traumatic near-fatal car accident and now needed around-the-clock complex care. Unlike most of their other clients, I had no brain injury or learning disability, I wasn’t elderly, and I was fully able to understand everything around me and communicate accordingly. In other words, it was probably not what they were trained for or even expected before meeting me. On the one hand, most of the poor carers were well out of their depth with me. Still, on the other, either through inadequate training, a fear of doing the wrong thing or plain ignorance, I feel every person I came across from that company could have done a bit more to help me feel like I was actually living a life and not just staying alive. Don’t get me wrong; they all tried to connect with me to different extents and at various points, and I probably wasn’t the most welcoming social butterfly at the time. But regardless, it always felt like they were just people who happened to work around me. I only ever really felt any kind of bond with a couple of them. Not much changed until shortly after the first anniversary of my injury when I was able to move house and, with that, change care companies.

The Big Change

This was when I felt for the first time like I “lived with carers”. For starters, it was the first time I felt like I was actually living and not just going through the motions. The most significant change was that this new agency specialised in “live-in care”. The first company covered my 24-hour care needs by stitching together three roughly 10-12 hour shifts. But Live-in care meant someone actually moved into my home for at least a week, sometimes up to a month, and was my primary carer. This was also supplemented by carers who worked regular shifts each day to share the workload and give the live-in carer time to sleep at night without worrying about me. This was a win-win for everyone involved. Despite many changes in and around that core setup, I have maintained the same basic structure for my care package until today. The effect this had on me was that I actually got to know the people who had my life in their hands on a daily basis. Maybe it was the shared workload or the necessity for a different mindset required to live at work where you can’t really be looking forward to work ending in a few hours only shortly after it starts, so you have to actually make the best of it because you have to be there for much longer. Whatever it was, I found myself making lifelong friends among my carers. It finally felt like I was “living” “with carers”.

Still figuring it out

You may have picked up by now that I have a fairly positive outlook on my current living arrangements, and you would be right. Maybe having had such a negative experience first and then moving on to what I have now helped. Perhaps the fact that I attended a boarding school from the age of 10, swiftly proceeded by moving to a different country for university, made me a bit more comfortable sharing my living spaces with people who weren’t family. Regardless, it wasn’t always smooth sailing. Even with the new core setup, there has been, is, and will continue to be some friction with carers occasionally. Of course, there’s friction. Regardless of how well things are set up, two different human beings sharing the same space for extended periods will always create some friction. In my case, it has been everything from my very hands-on approach not suiting everyone who works with me, to balancing that fine line between professional and social relationships or interactions. The fact that I am also now the employer of every carer who works with me adds an extra layer of complexity to the whole dynamic. So how can I “manage living with carers?” It has taken a lot of practice, and what has worked for me might not necessarily work for others. But I have a few rules of thumb I always try to stick to.

1. The better the job is for a carer, the better the carer is for my life.

I’ve heard many times that a happy wife means a happy life. As dated as that sentence might sound, the logic applies to me and my carers. I am dependent on them for so much. Whether it be keeping me alive or helping me live my best life, if I can make a carer look forward to helping me achieve my goals, it becomes much easier to focus on the “living” part rather than constantly managing employee performance. So I might not pay the most or offer the best perks of the job, but I won’t rest easy if my carers don’t feel welcome, appreciated and looked after as their employee. Suppose, for any reason, this can’t be achieved. In that case, something needs to change, or the working relationship cannot continue, in my opinion. By the same token, I also expect the same level of consideration from them, but more on that later.

2. Always be clear on what a carer’s job entails.

This one took me a long time to grasp, and it evolves as my needs change over time. If, for example, my carer’s job is purely to meet my healthcare needs, then I need to have an alternative plan for my transport. If I would like my carer to drive me around in my car when needed, that must be made absolutely clear before anyone signs on the dotted line. That is a basic example, but it explains my point very well. There needs to be complete agreement on what is expected from both parties. Whether that’s in the form of a written contract or an extensive discussion and verbal agreement before any work begins. I’ve had situations where I asked a carer to do something, and they rightfully pointed out that it wasn’t what they had signed up for. In those cases, I have had little to no leverage and conceded to finding another way around that particular need but making sure it was then discussed and covered for any new carers joining me after that point. Even when I have not been a carer’s direct employee, say, in the case of a care company, those discussions still needed to be agreed upon with said company. If it isn’t a task within reason of what has been agreed with a carer, it ideally shouldn’t be met by said carer. This one is simply how employment works but not every carer-client relationship is also an employer-employee relationship.

3. It might be their job, but it is, firstly, my life.

In the 15 years I have lived in care, it has always surprised me every time I have had to explain the significance of something to a carer by getting them to picture the same or a similar thing within their own lives or the life of a loved one. There are too many examples of this to choose from. From little things like why my teeth should be brushed in the specific way I like them to be brushed to bigger things like why it is highly inappropriate as a live-in carer to sneak out the window at night after pretending to go to bed to spend the night with their partner. That second one was both comical and infuriating when it happened. Or the time a carer couldn’t get her head around why she couldn’t watch TV with the volume up while everyone else in the house slept. I even once had someone insist on having their hours changed after I had explained multiple times that the hours she wanted had already been allocated to other staff members, but then she got upset when she found her hours had been reduced. I could go on, but recounting these is honestly becoming too negative a tangent. But believe it or not, there were times in the past when everything I’ve listed in this paragraph would have been too difficult for me to speak up about, and I would have just let them go unaddressed. Whether that was due to a lack of confidence to stand up for myself, fear of not having suitable replacements in case someone got upset and left or just having no clue what I could and couldn’t speak up against. My important takeaway has been that everyone needs to value both their personal and professional lives, and that also applies to me. So, my personal life does not need to suffer to enhance someone else’s job satisfaction.

Ultimately

All in all, it isn’t an exact science—it never is when human beings are involved. However, having strict principles, good practices to maintain those principles, and the humility to reflect on and improve said principles where needed will go a long way to putting you on the right path to help you or a loved one manage life with a carer.

Till next time, stay blessed.