Carers Rights Week…

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. Much of this blog goes about celebrating the accomplishments, the perseverance and generally the attitude of people who have survived brain injuries. As I have covered in previous posts, a brain injury changes so many lives. What I have not touched upon thus far is the impact it has on the people that take it upon themselves to care for us patients throughout the recovery process.

This week, as carers rights week, seems like the appropriate time to give credit where credit is due. I feel it would be appropriate to talk candidly in this entry and highlight the things that our carers do for us, the sacrifices they make, and how much credit they deserve. I often think that this is glossed over within the mainstream discourse regarding head injuries. Of course, the discussion that is being had within groups (i.e. charities, organisations, care groups and medical services) are well aware of what is required in the day-to-day care of patients, regardless of injury type, because they see it everyday.

The purpose of this post is to hopefully make more people, those who are not directly involved with patients on a regular basis, more aware of the kind of things that are required of carers every single day.

What Do They Do?

Well, as the name suggests, they care for the patient. That is putting it in a very simplistic form, but in essence that is the job description. What the job entails however is much, much, more than that. Reliance and trust are key components to the carer/patient relationship. At best the carer can be relied upon to do simple household tasks or other fundamentals such as grocery shopping, at worst they can be required to help the patient use the bathroom, clean and feed themselves, it purely depends on the severity of the condition.

My carers (i.e. my mother and father) help me with many of the things, which have to be done in day-to-day life. The reason I live at home with my parents is because of the necessity for care. Living at home, while certainly not ideal for a 26 your old man, takes much of the pressure off of me, pressure I find difficult to handle when living alone. The things that tend to stress me out are often what would be considered as fairly standard tasks, or tasks that you need to get used to as you progress into adulthood: the complex issue of setting up and paying bills, my newfound impulsive nature meant I was not very good at handling my finances, I had (and still do have to a certain degree) issues with socializing and engaging with people. As well as these, I generally needed to be reminded about basic everyday issues such as taking my medication at the right times, eating healthy meals at the correct times, washing and showering and basic hygiene as well as cleaning up after myself. My parents have helped me, and still help me, with all of these issues since I suffered my brain injury. It just goes to show the extent and effect brain injuries have, when six years later I still have a high degree of dependency on my parents. After everything they’ve done, the love, patience and support, I cannot thank them enough.

What Do They Need?

This is an intriguing question to me. It is one I have pondered over many times. Is there any way I could make their life easier? Is there something I could get for them that would ease some of the pressure? Do they need help? It has only really dawned on me recently that what they really need, what they want and what they are struggling for, is to see us, the patient, progress and get better.

I have said many times in previous posts that with the right attitude, mentality, work ethic and support, things can get better. I do believe that, as patients, we do have a certain obligation to our carers in some ways, to try every single way to improve our situation. Not just for our own well-being and health, but also because an improvement in your health is exactly what everyone involved in the recovery process is working towards. I do not mean to miscommunicate my point. The point is with carers that they tend to do it not for any tangible reward, but for our benefit. It is, in essence, a selfless act. What I mean is, there is always that danger that we (the patient) can slip into a state of self-pity or depression where you do not want to do anything. Trust me when I say, when you’re in that state of mental health, progress is nearly impossible. I believe that the people who are caring for you, who are really trying to help you towards improvement, deserve better than that.

On that note, I suppose it is just as relevant to mention gratitude. I realise this may seem a very obvious thing, however it does go along way, as does simple politeness. Simple pleases and thank you’s will go a long way to improving the patient/carer relationship. Knowing that you appreciate them will give a carer a sense of importance and gratification, which will go a long way to boosting their confidence and self-esteem.

Taking A Break

When we consider this, what it is they need and all that our carers do for us, I think we also need to consider the consistent pressure they are under. They are there for us every day, whenever we need them. They give up a lot and make sacrifice, after sacrifice to ensure that the patients are in the best position possible to continue down the road of recovery. Thinking of having to make such a large commitment to something or someone boggles my mind. I would also add to that that it cannot possibly be healthy to continue that kind of lifestyle relentlessly with no respite.

I think it is essential therefore; that carers have the opportunity to take a break from their responsibilities. A couple of days away with a partner, just had a little time to themselves can be so valuable and so important to the patient/carer relationship. Having space away from each other prevents tensions from rising and can decrease the feeling that you’re smothering one another. I can speak from experience and say the both of those feelings are familiar to my parents and me and having time apart from one another will make spending time together and living together all the more bearable.

I realise that many of you will be asking how it is possible the carers to spend time away from the patient when it is very rare that there will be people whom you trust with both the time, the personality, and the knowledge to take on the task. My advice would be to go to the many charities and organisations that revolve around brain injuries. They will be able to give you advice and contacts to ensure that a patient will be well looked after if you should need some time away. Speak to those charities about this very subject and I’m sure that they will tell you the same thing: personal space and recreation is incredibly important.

I will sum up this blog post by sending out both gratitude and respect to those who take on the task of caring for anyone with any illness. Where we can’t, you do! You make our lives easier and more livable for which we cannot thank you enough. I would ask you that, during carers rights of week, you do take some time to yourself and try to have a day that is just for you. God knows you deserve it.

Thanks for reading this weeks post. I hope it has been helpful and informative. Please, follow me here on WordPress and if you are after any additional information on the blog, follow me on Twitter (@ABIblogger). Thanks again and be well.