Thursday, July 15, 2010

the music never ends.

Mom was feeding Dad his lugaw today when she told him out of the blue:

"Hindi mo na ako kinikindatan. Dati lagi kang pakindat-kindat sa kin. Kaya mo pa ba ngayon?"

He winked.

She responded by playfully nudging his right arm with her fist. Then he said in a toothless murmur,

"Payakap naman."

Mom hugged him as best as she could, she with her stiff lumbar belt and he with his permanent chest dialysis catheter. She jokingly asked him if it would lead to something else, which prompted me to go to the bathroom. Not that they could do anything else, but I wanted them to share an intimate moment together, for these moments are golden and don't come too often.

One other reason, the more important one (than that of a learned patience of a mother) that keeps my Mom willing to sacrifice for my Dad is, well, love. It is not just the general sense of love for family, or the marital obligation to stay "in sickness and in health", or just plain compassion for a loved one. It is the feeling of being in love, and to be able to show your affection for your beloved in any condition.

They are still very much in love. In Dad's moments of disorientation, the only clear memory is that of my mother. Mom, in turn, never fails to make him smile when she is at her goofiest especially when he is difficult to care for. They look at each other with such sweetness that it clearly explains why any of us children could never be enough to fill his loneliness, which I suspect is frequent when he falls silent, only opening his mouth to ask when she will be with him again. I try to make small talk with Dad and update him on current events, but he seems to be more interested when Mom asks him if the soup is too hot. There was one evening when he refused to eat dinner, and only agreed when we put Mom on speakerphone to remind him to eat. It's not just love between spouses, it's as if they were "going steady" again.

I totally understand how it is to feel lonely for a specific person. I haven't seen Joe for quite a while, and airborne bacteria in the hospital is such an inconvenient risk for us to meet. Watching over my Dad is a full day's work with almost no chance for "me" time, and even phone calls are cut incessantly due to Dad's restlessness when he coughs or complains about any discomfort. We will be remembering our second anniversary next week, but we are unsure if circumstances will allow us to celebrate it together. As the date approaches, I take time to think about how we have been friends for 11 years, and pray that we never forget to be friends in the years to come. After what I've seen today with my parents, I include a P.S. in my prayer to keep us in love as well.

My parents' love story is bittersweet, but its joys have always triumphed over all its sorrows. It was not easy to keep it going, but they have shown us time and again that they are right for each other. They are each other's favorite friend, the one with which they enjoy sharing the day's series of events, and the one they would say goodnight to last. Their passionate devotion to each other has evolved countless times, and I'm glad to have been there through all that. That is, of course, until they start their private jokes which sends the cue for me to exit the scene. Beautiful music seems to pipe in the room, and I am confident it will never end.

night is day, day is night.

A typical day at the hospital goes like this:

5:00 PM
Dad wakes up and waits for "breakfast". We feed him plain congee and a soup-based dish, preferably fish since he recently misplaced his dentures and could not chew any hard food. He relaxes while the physical therapist stretches his limbs for him and makes him move from side to side while on his bed. He talks a bit with Mom and waits for the news on TV.

7:00 PM
Dad watches the news with Mom and me. Mom starts to pack stuff that needs to be brought home while Dad looks at her intently, as if trying to capture the last moments with her before my Kuya picks her up to bring her home. Sometimes Dad eats dinner while Mom is here, other times he chooses to eat a bit later.

9:00 PM
I've finished eating dinner myself but could not begin my evening ritual yet since Dad is wide awake and subsequently is coughing more often. I channel surf to look for other interesting channels than the usual telenovelas on local fare so Dad won't be bored while Mom isn't around. The hospital nurses do their rounds and give his medicine, change his nappy and do the intermittent catheterization to drain his bladder.

10:00 PM
I try to squeeze in a call to Joe but more often than not it gets interrupted because of Dad's unbearable cough. The pulmotherapist enters the room for Dad's nebulization, which is supposed to ease his discomfort. It ends in about 20 minutes. I try to call Joe again, but I either fail to get a signal or he will have lost his, which means he has already begun his work. I take a bath and brush my teeth, careful to lock the room door lest Dad would call for me while I'm lathering...

12:00 MN
Dad is still wide awake. The nurse gets his last blood glucose reading for the day. He constantly asks for mom and shows no signs of sleepiness. I desperately look for a boring channel but he ends up watching everything from the Asian Food Channel to Euromaxx. Maybe tonight I will try the Manila Jockey Club channel. Makataya na rin sa karera :P

3:00 AM
I have been falling in and out of consciousness for the past 3 hours or so, and I find Dad's eyes open like a baby's, in awe of his surroundings. He asks me what time Mom will be back. I tell him she'll be here once he wakes up, but he has to sleep first. The pulmotherapist returns for another nebulization session, and now Dad is grumpy and I have to hold the vapor mask in front of his face just so he doesn't skip it. He complains of an itch and I see dry bits of talcum powder and dead skin under his back on the bed. He tells me he needs a diaper change and I manage to do it all by myself because the nurses are nowhere to be found at this hour. On "lucky" days when his diaper is full, I draw warm water from the tap, mix it with bath soap in a basin, dip a washcloth and give him a sponge bath to refresh him.

6:00 AM
2 hours of deep sleep is rudely interrupted by the "good morning" courtesy call of the morning shift nurses. They have a litany of reminders about Dad's meds, his meals, his fluid intake, and the nebulization/PT schedules for the day. They leave without remembering to turn off the lights. I get up and shut them off myself. Meanwhile, Dad is awake again and asks if Mom is on her way. I tell him that she will be here soon. He tells me he will wait for her and not sleep anymore. I sigh and hope that she rode with Joy and Mitch so that we don't have to wait too long.

Between 7:00 and 9:00 AM
I will have had my hurried breakfast of bread and Milo while Dad is lightly sleeping. Mom arrives and he suddenly opens his eyes. He is finally relaxed, and will either decide to eat with her or go back to sleep. The morning round of meds, urine catheterization, linen changing and adjustment of his IV access point begins, and he feels as though he had been roused from his evening rest, which is not a happy event. He gets into a fit and the hapless nurse/attendant ultimately makes more mistakes than usual. Mom then goes to her own PT session while I watch over Dad who is finally sleeping soundly after tiring himself out with his tantrums.

12:00 NN
We turn up the volume so Dad could hear Eat Bulaga on TV, which wakes him up. It is time for his heaviest meal of the day, which is lunch for us, but seems like "dinner" for him. This would be our happiest 2 hours, as we are all eating almost at the same time, or at least, very much awake and interacting with each other. The attending doctors do their rounds, and see Dad in a very alert state, confirming that their treatment is going well. Of course, we tell them of his restless nights, his moments of disorientation, and his annoying cough that takes forever to relieve. The doctors respond by reminding Dad that he needs to be awake in the day and asleep at night, to which he agrees with enthusiasm. I wish they would see him a few hours before dawn.

2:00 PM
Just when we think all is well, a violent cough brings out all the food Dad has consumed in the past 2 hours, including a few tablets left unswallowed in his mouth. His gown would need changing, but it will take a while before he agrees. Good thing the most important medicine he needs to take is administered via IV. We decide to let him get a "good night's sleep". I go get myself a cup of black coffee, knowing that my day will begin once more in a few hours.


It's tough adjusting to Dad's new body clock. A few days ago, I thought my own health was already compromised since I was getting chills and bouts of vertigo, and I may have even unconsciously thrown his tissue-wrapped dentures into the trash. A quick checkup by the nurse proved my temperature was normal, and it all may have been due to just fatigue. It seems my body was telling me not to teach my Dad to sleep at night and be awake in the daytime; it was telling me to do as the Romans for the time being.

I realize that he will not get back to his usual rhythm while he is still confined here at NKTI, as nurses would come and go at odd times all day and night, and his pneumonia is bothering his evening sleep too much. I just hope that when we get home, we could ease him back into the regular schedule of active days and restful nights. Till then, I will have my trusty mug with me to perk up my mornings with Milo and energize my evenings with black coffee. I'm crossing my fingers that my extended wakefulness these days would compensate for my painful absence in the UP oval, weight-wise :) I can't wait to run again!

Tuesday, July 6, 2010

fever, firetrees and high noon.

Dad and I are now at the hemodialysis center at the NKTI. He's got 3 hours and 20 minutes to go, says the magic machine, before we return to his room on the 3rd floor. He's sleeping peacefully in his bed, on the slot next to the window where we could see the firetrees on the parking lot, with its orange blooms flaming like the bright noonday sun. A few hours ago, he was also fired up with a fever that shot up to 39 degrees that would be one of the scariest nights of my life.


It had been Day 9 here at the hospital, with Dad finally agreeing to undergo dialysis to help filter out the toxins from his blood that had been the cause of his fatigue and weakness. It was the second of three sessions that his nephrologist ordered, and we were preparing to sleep. I got out of the shower at 1:30 AM when I heard Dad mumble something. I couldn't understand since he had no dentures on and his cough was really bad. Finally, after a guessing game of context clues he nodded that he wanted to sleep and asked if the aircon could be turned off. I shut down the aircon and decided to put off blog writing for the next day.

After a few minutes of light slumber I felt a poke on my shoulder. Dad's arm went through the bed bars, nudging me awake. I asked what he wanted and he replied with such incoherence that I wanted to call the nurse to check if there was anything stuck in his catheters. As I checked the access point bandage on the side of his neck, I noticed his skin was warmer than usual, and he was shivering. I threw my blanket around him and knew instantly he had a fever. I called for the nurse and when she came she checked his temperature. it was 38.1 degrees Celsius. Yup, he had a fever.

The nurse went back to get paracetamol but I told her Dad's throat was too weak and congested to be able to take medicine orally. She said she had to wait for the doctor's endorsement to allow administration via IV. We waited for 20 minutes. By now Dad's eyes were wide open and he was asking me so many things I couldn't understand. I crept by the side of his bed and curled by his back and hugged him. He resisted at first but eventually moved his back closer to me, shaking with chills.

The nurse came back not with an endorsement but with a rubber tube to use to suction Dad's throat to clear it of all obstructions for oral medication. The annoying intrusion of a long plastic tube down to his throat was too much for Dad that it barely got out anything. The nurse advised his temp was not high enough to make IV administration urgently necessary. I told her to take it again. It rose to 39 degrees. She immediately rushed to the station to inform the doctor on the phone. After another 20 minutes of shivering restlessness, a syringe of paracetamol was injected into Dad's IV access tube. I then decided to call Mom and send an SMS to my siblings and to Joe about what happened.

Within minutes, the fever seemed to break already. Dad was profusely sweating and I lifted all the blankets and towels I swathed him in. I dipped a towel in warm water and wiped his face and limbs. We changed his gown and flipped his sweat-soaked pillow on the drier side. It was almost 5AM. He rested while I waited for Mom and my brother to come but I didn't get to see them as I blacked out in exhaustion.

By the time I awoke, it was already 8 in the morning and Mom was attending to Dad's needs. I felt bad that she had to miss her PT session again because of the emergency, but she told me that she was making arrangements to have it here instead. Eventually she found an available slot, and she told me to look after Dad on the first hour of his dialysis so she could take my place when she's done and I could do some errands for them.


As I was about to go online, Dad opened his eyes to me and I told him to look out the window and see the firetrees and the bright sunshine that had been hiding for the past few days. He glanced nonchalantly and tried to tilt his head to the other side but the nurse stopped him and told him to face the side to the window to allow his dialysis tubes to function properly.

I put down my laptop and got closer so I could catch his words. He is still difficult to understand when he speaks, but his eyes are calmer now. I fed him juice and water as he requested, then he breathed deeply and whispered,

"Could I sleep now, here? I feel tired."

"Yes, Daddy. Sleep all you want."

"OK. Thank you."

My eldest sister came after an hour to tell me I could use her driver for my errands while she watches over Dad. Mom called to say she would be done in half an hour for us to have lunch before we do our separate duties.

Everything seems be back the way it had been for the past week, but we are praying for better weeks to come. We know it will not happen overnight, but we are hoping that Dad will be patient enough to wait, and be willing enough to be healed. After all, even if the rains and cloudy skies of the season have arrived, there will be bright sunny days like this every now and then, with gleaming firetrees waving by the road on the way home.

Thursday, July 1, 2010

i scratch your back, don't scratch yours.

I do not know how to give a massage. It's something I've not been accustomed to giving (or receiving, for that matter). My hands are a pressure FAIL because they are small, light and too clumsy to recognize the right bumps on the back (how do knots feel, anyway? and how do i know i'm not harming the spine?), and I tire easily. When I'm the one getting the massage, I always feel like meat being tenderized for a barbecue, or bangus being laid out to be deboned for daing.

But ask me to scratch your back and I will gladly oblige, to labor and ask not for reward :P I am an excellent backscratcher, with more than 24 years of experience in this field. I'm surprised that there are no scratching services available in a spa; the salt backrubs are a poor substitute for the real thing. Nothing beats freshly cut fingernails clawing back and forth along one's largest and thickest skin area to ensure a good night's rest.

Daddy always loved having his back scratched before going to sleep. I was such an eager beaver when I was little, thinking that whatever grooming chore Dad asked me to do was a sure sign that I was growing up. I would help shine his boots, pluck tiny stubble from his chin, and scratch his back with the force of a mountain cat. Still, my tiny hands would never be enough. I tried using a hairbrush, and purchased those handy wooden backscratchers from Baguio. But nothing could compare to the long, polished nails of my mom, which Dad preferred over anyone or anything else. Later on I would realize that more than the force or precision of movement, the value of her gesture was that of intimacy, akin to a romantic massage.

When I scratch someone's back or (try to) give a massage, my arms tire easily, and part of the weariness is the effort to hide it from the recipient. There is the need for rhythm and direction to create order and mask the difficulty of the task. It speaks of selflessness; it is a simple way of taking pains to take away another's pain. That is also why I feel extra grateful when I am the one receiving the backscratch -- knowing how tiresome it is to give it, I feel the giver makes my personal comfort a priority over his own.

In the days prior to Dad's confinement here at NKTI, he had been complaining of an itchy back. Mom refused, saying that he had bed sores and his back already had little wounds from constant scratching. He was groaning like a child, pleading Mom to ease his discomfort, to which my mother tried to turn a deaf ear. She could only move so much, with a lumbar support belt preventing her to twist to Dad's side. He then asked for me to do it. I chose to scratch on the shirt he was wearing to protect his back from bleeding, and applied alcohol and baby powder to soothe him. We were informed by his nephrologist later on that the itchiness was not due to bed sores; it was an accumulation of toxins in the blood due to the poor filtration of the kidneys which went all the way up to the skin, causing it to itch. We never would have thought it by ourselves to be a sign of renal failure.

The itching has since subsided with medication that helps balance the chemicals in the blood. We would have been cleared for discharge today if only we didn't have to bring him home with a catheter still attached to his ureter for about 4 more days since his prostate is still 450% larger than normal. What used to be a secondary concern -- his creatinine levels -- has become a potentially life-threatening danger, and immediate dialysis looms in the horizon to become more of a need than an option.

Watching over Dad almost every night in the hospital while Mom takes care of her own health needs does not feel like a burden any more than scratching his back when I was a child. I am merely giving back the love he has given to all of us for most of his life. It is not easy; I falter, I lose my temper, I forget to be kind at times. But I hope that despite my shortcomings, I can help enough, and love them enough, so we can all live through this and we could all be home again.