It took an inordinate amount of thought when I decided to devote this blog to carers and/or support workers and their importance. It is a subject close to my heart, so I want to do it justice. In the end, I have decided to produce it as a personal account of how my carer or support person or whatever title you wish to bestow on them, came about to assist me to live my life as fully as I am able to. They are that important, as simple as that may sound. 

After my first SCI, I swore to myself that I would live as independently as possible and spurn any efforts that may, as I perceived it, work to diminish that effort. As a result, any initial support I relented to was more in the realms of housework; be it vacuuming, laundry, some food preparation for about 2 hours per day, three days per week. It was explained to me that by having support for these tasks the flow-on effect would be that of giving me more opportunity to pursue those hobbies for example that I enjoyed doing. 

As I entered into, what is now, an established relationship with my partner, who I absolutely love and enjoy being with, the role of my carer(s) evolved somewhat as it now involved my partner and the added dynamic that brought. No longer was it only about what worked best for me. It was about what worked best for us both. So, I am happy and relieved to say that this carer/client relationship is a successful one. 

However, this all changed dramatically a few years ago. Whilst out training on my Invacare TopEnd Force 3 handcycle I was run over by a 4WD vehicle. I sustained multiple fractures from head to toe, a traumatic brain injury, myriads of facial, leg and arm abrasions, lost teeth, half of my right ear torn off along with my second spinal cord injury. Having almost died twice while in an induced coma following the accident, I underwent a long and painful recovery and rehabilitation that in some ways is still ongoing. Initially at the Burwood Spinal Unit, in Christchurch, this rehabilitation was continued in the community once I returned home. 

Following a lengthy, rigorous and independent home-needs assistance survey, it was determined I required more hands-on assistance with a number of my day-to-day activities. This led to the appointment of four carers who worked on a weekly roster, a number of hours per day. The care support identified in the report was not just for in the home but out in the community as well. Even in circumstances I had not considered. I cannot stress enough the importance and benefit of the home-needs assessment process because as I pointed out earlier, it brought home to me aspects of support I hadn’t considered as required or even warranted. A case in point was getting ready in the morning. I believed I could do this myself without assistance, although it now took longer to do and required much more effort. The occupational therapist conducting the survey asked me “I’m aware you can do it yourself, but why expend all that extra time and effort when by having a carer assist you your time and energy can be better spent on other things?”. This simple philosophy fundamentally changed my approach to what I considered carer support to be and how important it is, can and should be. I firmly believe that regular scheduling of an independent home-needs assessment is of benefit to both the client and carer. 

Then Covid-19 happened. Swift lockdowns became the norm. Concern as to the spread of the virus was at the forefront of my and my partner’s minds. This concern then turned to the potential risk that having numerous people coming into our home posed, especially when they also interacted with others as part of their weekly occupation, despite taking precautions. Having been a mid-thoracic T3/4 paraplegic after my first SCI and now as a C6c quadriplegic following my second SCI any respiratory illness would spell disaster for me. After a spell of discussion with regards to this, my partner and I agreed that she would become my primary and sole carer. 

This was a dramatic paradigm expansion – not a shift. Adding the role of a carer to a loving relationship can and does create its own discussion points. Where and when does a carer role start and finish when your partner becomes your sole carer for one?

In my humble opinion, it doesn’t start and/or finish, they simply blend together. Sure, there were now added responsibilities my partner was expected to do as there were expectations that I had of carers that required clarification and, in my case, became a newfound appreciation for my partner for her willingness to give as much support as she could to help give me more opportunities to live my life to its fullest potential. For her, she already had love and concern for me and through this added ‘responsibility’ she is able to express that even more. Ongoing communication, an understanding and appreciation of what we both wish to achieve out of our fuller relationship with one another has ensured the importance and success, as we both see it, of the client/carer relationship. And the best of all is that we get to spend more time together than before and she still provides me with a daily list of things to do to remind me that I am still my own person with chores and responsibilities just like anyone else! 

About the author

Ian Walker is a C6 Quadriplegic Incomplete. Ian lives in Christchurch, New Zealand and has survived 2 separate spinal cord injury-related accidents over the past 14 years. He is a Motivational Speaker who talks about - how to face adversity, cycle road safety, living with a disability, being a 1 percenter . . .

Ian also enjoys life coaching which he utilises through his business BMotiv8d, to assist those with a disability, (or without), who lack motivation, direction and/or confidence, those who feel disorganised or unfulfilled, and/or those who need encouragement or need to set priorities, on how to realise their true potential.