Ever since I began life post-injury, I’ve been in one form of care or another. Surprisingly, since I started sharing my experiences here, documenting that aspect of my life has proven elusive for several reasons, even though the entirety of my life in a chair has also been my life in care. The truth is, living in care has been a very interesting and educative but complex weave of many varied stories, moments, people, experiences and life lessons.
For starters, my care set up has changed and evolved over the years and still does creating an almost constant state of flux that could change the moment I put any aspect of it in writing. Then there’s the fact that my experience on the topic has never been outrightly positive or negative but has always slid back and forth along that spectrum making it tricky what tone to write about it in. To further add to the mix of complexities, life in care is a very broad subject so what aspect do I write about?: The actual carers/caregivers themselves; the institutions that have provided said care at different points in time; the most influential/pivotal experiences from my life in care… etc. The list goes on with every single one of the aspects above rich enough to warrant their own articles. So, this post is going to be an attempt at a chronological summary of my life in care so far. And hopefully I’ll be able to hone in on more specific aspects in future posts.
I have to start by reiterating and emphasising that everything within my account of living in care is purely and specifically from my perspective and own individual experiences. I’m very well aware of the extremely unique nature of the circumstances that have made my care what it has been through the years and is today. This is based solely and unequivocally on my personal journey receiving care and does not reflect the majority of cases of life in care in general.
I’ve essentially been in care since April 18th, 2010, the day of the accident and first admission into hospital for spinal injury. The next 6 months consisted of care aimed primarily at keeping me alive and through surgery; then care to establish a baseline for what my level of health/independence would be going forward and finally; care to help me adjust to what life would be like after leaving hospital. This was provided by a combination of nurses, healthcare assistants and doctors, to mention but a few. I then got discharged into the care of an agency to begin life in the community.
This was where I first encountered the basic framework for what would truly be my life in care. I was blissfully unaware of what to expect from care in the real world, only certain that it would be different from what I had grown used to in hospital. I was discharged into the care of a “care agency”. It would be an understatement to say this initial arrangement was not an improvement by any means. Admittedly, many factors worked against the possibility of enjoying this new set up such as the tiny living space I now had to call my home, the limited funding available to provide what should have been the ideal standard of care and most importantly, my then fractured and fragile state of mind. All that said, knowing what I know now, this agency did not come close to enabling me to live the best life I possibly could in spite of my injury, as should have been their main charter. All that said, there were a couple of staff on my assigned team who were, at times, a small glimmer of hope that things could be better and to a large extent, their presence in the team opened my eyes to the room for improvement across-the-board. The bulk of the issues I had were systemic and embedded into the companies modus operandi, which unfortunately trickled down to the individual staff members. I learned a lot about what I didn’t want in my care from my experiences with that agency. I was in their care for approximately a year including a 2 month transition period after which I moved on.
I began working with a 2nd agency in August 2011 and the improvement in quality of care, and by extension, my life, could not be more significant. The transitionary period between switching agencies meant I got to see carers from both companies work side-by-side with me for 2 months making it extremely easy to compare and contrast. For the first time, I saw an active effort to aid me in living life as I wanted. I saw a drastic shift in the level of work ethic displayed by staff from the new agency. And most significant to me at the time, I finally felt like these people, with whom I had no choice but to spend the majority of my life with, finally saw me as a fellow human being and not a job. I got to know their likes and dislikes, things we shared in common, who they were, outside work and they showed the same interest in me as a person in return. Regarding their capabilities at their job, I realised I had no clue about the majority of the responsibilities that came with their position. Everyday I learned something new that should have been in place since my discharge from hospital but wasn’t, simply because these carers didn’t think twice about putting those things in place. Things I always thought I needed to take permission for from my carers all of a sudden became decisions I could make whenever I wanted, for them to provide assistance with where possible, and to the best of their abilities. For the first time in a while, I felt free to just be myself rather than constantly try not to upset “the structure” within which my carers carried out their duties. I had previously, whether intentionally or not, been given the impression that the service they provided to me was a privilege to which I should have been grateful for, no questions asked. But now I was being SHOWN the value of the service provided on a daily basis and naturally learned to appreciate how lucky I was. My gratitude had gone from being expected, to being earned. This 2nd agency was by no means without fault. We are still talking about human beings here and there were issues that would crop up every so often, but those became the exceptions to be addressed as they arose and not the norm for me to silently live with. Eventually, I had to part ways with this agency primarily due to financial constraints and my growing need for more independence. But I had learned a lot about what I wanted in my care from my experiences with this agency. I was in their care for just under 2 years after which I moved on.
In July 2013, I finalised the frightening but necessary decision to switch my care from an agency to direct employment. For the first time, I had full control over who was employed to provide my care, how my care was provided and how much it would cost financially. In theory, it was the best case scenario for everyone involved. The annual cost was greatly reduced, I could pay my staff better than most agencies at the time and the bulk of their work practices could be tailored around my specific needs not the general practices of a whole company. The reality was not so simple. The benefits of the change still came as expected but there was so much I had not anticipated. The stark contrasts between being purely a “client” receiving care and an employer were way more than I could have ever expected. I had gotten so used to only ever focusing on the social and personal relationships between me and my carers that I underestimated the complexity (and in many cases difficulties) of managing them as my employees. Now I had to recruit suitable staff while looking out for red flags or possible strengths; deal with HR on an admin level; learn when to discipline someone to curb bad practice; draw up staff rotas every month; even learn basic employment law. For at least the first couple of years I was way too unprepared, informal and unprofessional with them. Something that reared its head as a problem any time I had to be stern or assertive. For the preceding 3 years I had looked at my carers more as friends and almost overnight had to redefine and enforce boundaries. This took A LOT of adjustment and safe to say some of the carers employed in those first few years got away with murder because I had no idea how to be their employer on a day-to-day basis. As the years went by though, it became easier to set and stick to boundaries, readjusting them as I went along; read and predict behavioural patterns to spot red flags early or even encourage potentially desirable attributes/characteristics; and eventually, even find the right balance between the employer/employee dynamic and a relatively social/friendly relationship with my staff/carers on an individual basis.
Today, I manage my care with a combination of everything I have learned and continue to learn from my experiences over the last decade of living in care. I would like to think I am at least an adequate employer. Both I and my carers have a positive working relationship in general which I think anyone who’s met them can attest to. Every now and then a new problem crops up but I now have a good foundation to be able to pre-empt issues or address them as they occur without destabilising the rest of my care. Things are at a point where negative experiences in small doses can be very positive in the long run as everyone learns from them. I actually look forward to interviews and handle almost all my admin myself. All this makes focusing on what’s important: my health and independence, a lot easier. I have been fortunate to even be able to have my care very much on my own terms and will never take that for granted. The people who have cared for me over the years have ALL played a crucial part in leading me to a very balanced, healthy and efficient setup that enables me to carry on day-to-day, not worry about so many things and instead focus on living my best life. There will always be one thing or the other to improve. Things that necessitate change over time and new things to learn. I’m confident I at least have the foundations to continue perfecting living my life in care.
As I said at the start of this, there are way too many facets of living in care to fully explore in one post. So if there is anything specific you want to know or just want more detail on, feel free to get in touch through any of the avenues here, and I’ll either get right back to you or write a full post with the answer.
Till next time, blessings, and stay safe.