I often encourage people to be proactive in managing their own healthcare. No one knows your body better than yourself. We can only try our best to care, but it‘s no easy job. Caring for another requires willpower to maintain consistency. We need to be persistent when the one under our care becomes dependent and passive. Once you take on the role of the caretaker, you can’t say, “I can’t help you unless you help yourself.�
The same is true when the person under your care is your own father. It seems that my own initiatives in managing NF has not done much to change my parents.
Dad’s cataracts have advanced to a stage that he no longer feels motivated to do much besides sleeping all day. One would expect him to feel the urgent need for medical intervention and the fear of going blind. But when I woke up late this morning, Dad who took his time getting ready became agitated and shouted at Mother when I hurried him. He still shouts at me, but thank God I can’t hear him. While I hurriedly gathered my things, Dad burned jossticks at the altar, unperturbed by the lost of time.
Dad would turn 67 come August. At that age, surgery is risky, thus requiring additional tests to determine his suitability. Bringing Dad to the hospital is often tiring and stressful, and today was no exception. We arrived at UMMC around 10:00am and headed straight to the Ophthalmology clinic. We were charged RM40 for follow-up consultation. While waiting for our turn, Dad who suffers from incontinence got lost going to the nearby toilet a couple of times. I could walk to that toilet with my eyes closed, but Dad never remembered the way. Suffice to say, the stress of bringing dad to the hospital was partly caused by worrying and tracking down his whereabouts. Why didn’t I just take him to the toilet, you ask? Firstly, I need to watch out for his number being called. Second, I want him to use his brains.
Our next destination was the radiology department where Dad underwent some scans. I got frustrated at Dad’s inability to take down instructions and remembering them. A staff told him to wait until he was given a yellow card, but he couldn’t communicate the message to me accurately and was constantly at a lost, not knowing what to do. Whenever he got impatient waiting, he asked me about the card and I told him, again and again, “Go ask them yourself�. When he asked and came back to me, unsure and lost in thought, I had to probe him, again and again, to draw out his memory “What did he say?� all along with him struggling to speak his mind. As if the answer would just vanish if I didn’t probe.
Next stop, Dad underwent ECG which cost RM20, followed by a return to the Ophthalmology clinic where Dad, again got lost going to the toilet. This time, I was standing about five feet away, but he turned left instead of right, and ended up at the Pediatric side. That caused us more time away than expected. The worried nurse was relieved when we finally returned to the clinic.
Back at the clinic, the operating surgeon ran some tests on Dad and became concerned about his irregular heartbeat. She scheduled his surgery to be done on the 26th February 2008. We were then instructed to four different places in the hospital. The nurse tried giving instructions to Dad, who listened intently. What frustrates me is that people often prefer talking important matters with my parents, unaware of their inability to register them, and my parents would never admit their shortcomings or volunteer to let me take charge. So I often have to interrupt, explain my parents’ difficulties, and take over the conversation. That was exactly what I did this morning, and indeed, the information proved taxing for even myself to remember without writing them down.
Our next task was to take blood samples from Dad, followed by a stop at the admission office, then the pharmacy to order and pay for an artificial lens that cost RM740, and finally to the Cardiology department where an appointment was scheduled on 21st February. On the referral letter, it was reported that Dad denied having cardiac symptoms despite showing irregular heartbeats. He also repeated the denial all the way to the clinic. I said, your heartbeat is irregular. You need to get it checked before undergoing surgery. If he had refused again, I would say, “Look, you might DIE in surgery.“
I must remind you that we were at University Malaya Medical Center. Some tasks took us 15 minutes to another building, and back again later for the next one. Making my way through the crowd, holding different letters and documents, finding directions, I often had to make sure Dad was following me. If those alone weren’t hard, I couldn’t turn to him for help in any mental task.
At the Pharmacy, I realized that I didn’t bring enough cash, so I had to walk back to the main building, go outside and get money from the ATM machine. I told dad to sit down and wait for me. Another peculiar thing about Dad, is when you ask him to hold onto things, he can’t wait to give them back to you when he sees you later. It could be a bag, a marker pen, a card, anything. Just like a child trying to rid himself of responsibilities.
All was done before 3pm. We took a cab home, myself slumped tired in the backseat. I let Dad pay the taxi fare with the money his friend gave him few days ago. I told him to keep them for his surgery, but of course, he didn’t listen. Over the years, I learned not to expect Dad to pay for anything, even the important expenditures. But for the taxi, I allowed dad to pay the small amount and share my responsibilities.
At the clinic, Dad struck up a conversation and talked about my deafness and brain surgeries with a stranger. Dad himself underwent surgery when a vein in his brain ruptured years ago, which he can never wait to talk about. But whenever he talked about me, the kind of information he chose to share could be so needless, that it came out pitiful. So this man, upon hearing about my tumors, stared at me in pity. I mean, he STARED.
I wanted to slap him. “Move along, you idiot. I’m here taking care of my dad.� The kind of patients you can find in government hospitals is amazing.
Tuesday, May 13th, 2008
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Posted by Yvonne in Charity 
