CAREGIVING is primarily about caring for an ailing loved one, regardless of age, illness and disability. What could possibly be so complicated about that, right? All you have to do is take that person to the doctor, get their medications and schedule for treatment or therapy, keep him or her clean and happy.
It all sounds so simple and clinical. Alas, life isn’t like that. Neither are diseases and most importantly, people who are in pain and suffering from uncertainties. Like everything else in life, caregiving can be fraught with all kinds of problems you – the sort you’d expect, and oftentimes, the unexpected.
From the word go, your role as a caregiver includes being an organiser and a problem solver. You’re also supposed to understand a new “language” that I call “doctor speak” because suddenly medical terms enter your vocabulary.
You don’t only know words like IV or intravenous because you also see it being done. Catheter, pods, swab, Code Blue, NPO (a Latin short form to mean nothing by mouth), benign, malignant, biopsy, and carcinoma in situ are just some of them.
STAYING STRONG
Being a caregiver is also like being a mother but so much more! As mothers, nurturing your children and seeing them grow and blossom can bring so much joy. There would be challenging moments but somehow you can still have some time to yourself.
For caregivers, intense days of caring for someone sick and disabled can turn to weeks, months and even years. The loved one you care for may survive their medical ordeal. Sadly it’s not always the case when you’re caring for a terminal patient or an ailing elderly loved one. You know what the outcome would be; yet you’re still shocked and devastated when it happens.
You have to be strong. And along the way, you do become stronger if you don’t let stress, burnout and depression get the better of you. You need to understand the gravity of the situation and assess your role. There’s so much emotions involved - not just your own and the one in your care, but also those around you like your immediate family unit and the bigger circle too.
Sometimes one person does everything almost 24/7, and sometimes family members take turns. Even with the best of intentions of wanting to help, things can go wrong and the primary caregiver needs to rush back from his or her break. Sleep becomes a luxury. At some point, you’d need to work out how you can get some rest before you fall ill.
I remember years ago when my late father was hospitalised because he suffered from a ruptured aneurysm and underwent surgery. My sisters and I took turns to be at his side in the hospital. Some volunteered for the day shift, others for the night. We also had to take turns taking care of mum who wasn’t too well either and needed to go for haemodialysis thrice a week.
Each of us had school-going children, day jobs and family to care for. Our entire routines were scrambled for those few months from illness, hospitalisation and then home care.
We were lucky that we had that support system between us. We were organised and united. We had to be because there were so many visitors – family members and well-meaning friends – who not only visited but also told us how things should be done. It’s tiresome and suffocating especially when our culture is such that you have to defer to your elders, smile and never complain. Sometimes people forget that one can never go wrong with kindness in thought, word or deed.
OF DUTY AND LOVE
People always ask the caregiver how his or her loved one is doing, but forget to ask how the caregiver is holding up. I recall when I first cared for my late parents. Back then I never even knew the word “caregiver”. My parents had been ill for a few years and were taking turns going in and out of the hospital. I was running ragged. Mum was in a coma. The doctors were uncertain if she’d recover.
When a close family friend asked me how I was and said, “Are you ok?” I just burst into tears. I was just so tired, sad and scared. She opened a floodgate and quietly listened as I poured my heart out. I’m eternally grateful for her patience and understanding.
When caregivers complain, it’s not because they want to run away from it all (even if they say so). They just need an avenue to vent. You don’t have to solve their problems; just patiently listen without judgment. If you can help, that’s a bonus. But just being there is the support they so need.
Even after so many years of being a caregiver and writing about it, some people still cannot imagine how challenging this job is. It’s one you never really applied for or get paid for. It’s a job you do out of necessity, duty and love.
Putri Juneita Johari volunteers for the Special Children Society of Ampang. She can be reached at juneitajohari@yahoo.com.