I'm 'Just' a Caregiver
By: Antony Pinol
Tags: Disability, Caregiving, Careers, Equality, Care

"I'm just a Caregiver at the moment but…"

I was talking to an old university friend I hadn’t seen for several years when I spoke this familiar sentence. I then gave my friend a half-hearted excuse for my current occupation and a vague description of a “proper career” that I would be pursuing once I was finished doing this “caring thing”

I’ve been my older sister’s full-time Caregiver for nearly three years now (she has a Learning Disability, Epilepsy, and a whole host of mental health issues) and in that time, whenever someone asks me what I do for work I always find myself uttering the above sentence along with some kind of half-hearted excuse for my current job.

There’s no reason why being a Caregiver shouldn’t be considered a proper career, the amount of physical and emotional work that I, and other Caregivers like me, face daily is a testament to that.

Helping my sister to wash, get to appointments on time, cleaning her bedroom, cooking for her, laughing with her, trying to make her smile, hugging her when she’s crying, listening attentively to the countless different doctors that are trying to help her, filling in forms on her behalf, lying in bed at night, unable to sleep, worrying about what the future holds for my sister, praying for my sister every morning…

The list of things I do for my sister — physically, emotionally, and spiritually — is pretty extensive. I know all this but I still find myself feeling that I need to make excuses for my current job, slightly ashamed that the young boy who got straight A’s in high-school and a decent university degree has ended up living with and caring for his disabled sister at twenty-nine years of age.

Why do I feel this shame?

Part of the reason is my lack of confidence and self-belief. I spend too much of my time comparing myself to other people — it doesn’t take long of snooping at the LinkedIn profiles of the friends I had at university, for me to start to feel that my role as a Caregiver is pretty pathetic compared to the Lawyers, Bankers, Psychologists and Managers that my old friends have become. The truth is, I need to stop comparing my life to other people’s, I need to stop thinking that just because my current vocation is slightly different from the norm (especially for a man my age) that means that is less than the norm.

My own insecurities aside, the opinions of other people have also played a role in perpetuating the shame I sometimes feel about my role as Caregiver.

A lot of people don’t seem to consider being a Caregiver to be a legitimate career or a worthwhile way to spend one’s life, particularly being a Caregiver for a family member as I am. People seem to think this a free pass for me to stay at home with my family, avoid all forms of true adult responsibility, doing whatever I want, while getting paid for it, when none of this couldn’t be further from the truth. I have spoken to countless ‘friends’ who have expressed such an opinion:

“But Antony when you are you going to get a real job and have your own life”

“Right, you’re a Caregiver, but what’s the future plan? You don’t want to get to forty and realize you’ve wasted your life staying at home”

“Wow, that’s cushy, you must have so much free time, what do you spend your days doing, just watching TV?!”

All such comments, and many others similar, from people who I have told about my current job, have led me to feel ashamed and inadequate for what I’m doing. Sure, I need to be less sensitive to the remarks of other people and more confident about what I’m doing, I know that, but I also know that if these people were less judgmental and more appreciative of a Caregiver’s role I would feel a whole lot better about what I was doing.

What can Caregivers do to be proud of their work?

When the comments of other people, or my own self-critical mind, start to get me down about my current form of employment I find it helpful to reflect on what I’ve been doing in my role, all the tasks I do day to day as a Caregiver, and remind myself of how this work is positively impacting on the person I’m caring for. Often, I’ll make a list of the things I did on a specific day (sometimes I write them down, sometimes it’s just a mental list). I then use this list as I reminder of all the hard and much-needed work I’m doing as a Caregiver.

When you care for a family member it’s easy to forget about a lot of the work that you do in your role — irrespective of how hard a task might be (cleaning up my sister’s vomit for instance after she’s had a seizure) I tend not to think of it as work because, in my mind, I’m just being a good brother to my sister. The problem with this is that I’ll often get to the end of a day and wonder what I’ve actually done in my role, I’ll start to doubt that I’m having any kind of positive impact on my sister. By writing a list of all the things I’ve done it helps me to become fully aware of the amount of work I’m doing and its worthwhile nature.

This is a list that I wrote for my activities yesterday:

I spent half an hour in the morning trying to get my sister to fill a test tube with urine so that the doctor could test her for a urinary tract infection. My sister was extremely reluctant to do this, and after repeated knocks on the bathroom door and prompting my sister to “please just fill the tube”, she eventually managed to do it.

I cleaned my sister’s bedroom, removing dirty clothes from her wardrobe and putting them in the laundry, and taking clean clothes out of her laundry basket and putting them back in her wardrobe (my sister finds it hard to distinguish between dirty and clean clothes).

I went into my local town and bought my sister an MP3 music player to try and occupy her when she’s having periods of sadness — music is one of the few things that distracts her. I took the MP3 player home and then downloaded some of her favorite music (Atomic Kitten and Westlife for anyone who’s interested)

I rang up the pharmacy and ordered my sister’s medications.

I helped my sister interact with our dog (she has a habit of hugging him too tightly if she isn’t supervised)

I laughed with my sister as we stroked our dog.

My mum had cooked my sister lunch and dinner, I encouraged my sister to help me wash the dishes after she had eaten.

In the evening, as we sat on the sofa watching TV, I hugged my sister when she said she felt that “life wasn’t worth living”.

I laid awake at night worrying about my sister, worrying about the new anti-psychotic medication she’s on and whether they will turn her into a walking zombie. I worried about her persistent bouts of sadness and her difficulty at managing to engage in pass-times. I worried about what she would do if me and my mum weren’t there for her.

Looking at this list now, what does it tell me?

Firstly, being a Caregiver is certainly not an easy job, it’s faraway from watching TV all day like one of my friends presumed. As a Caregiver, the simplest of things can present incredible difficulties — take my attempt to get my sister to do the urine test, something that would be so simple for most people, was incredibly hard for my sister due to her mental health issues and Learning Disability.

The list as a whole reminds me of the wide variety of tasks that I face as a Caregiver, you have to be able to turn your hand to pretty much anything and at any time of day; being a Caregiver of a family member you live with is more than just a 9–5 job, it’s a 24/7 gig. Sometimes I even have to get up in the middle of the night to help my sister if she’s had a seizure.

Looking at this list also gives me a sense of pride to know I’m helping my sister with so many things she couldn’t manage on her own and it reminds me of how essential a Caregiver is for someone like my sister.

The list also reminds me of the emotional work involved in being a Caregiver, laying awake at night worrying is a common occurrence for me. Each day I have to work towards limiting the effect that such worries have on me so that I can maintain a decent quality of life myself. This type of emotional work is faced by the majority of Caregivers I’ve spoken to, particularly those who care for family members, with whom close emotional bonds make you worry all the more. This emotional work goes unseen, but it is an important part of the job.

Lastly, the list reminds me of some of the joy that I bring to my sister’s life through the work that I do; remembering how my sister smiled as we played with our dog warms my heart and tells me that my efforts are truly helping to improve my sister’s quality of life which motivates me to persevere with what I’m doing.

As you can see, this method of reflecting on a list of the things I’ve done helps me to find the value in what I’m doing and gives me the motivation I need to keep going in my job, it reminds me that I am making a difference and that I am doing something incredibly worthwhile with my life.