It hasn’t been easy putting my thoughts on paper.  I thought I was better able to handle  end of life care, palliative care, DNR and stuff like that.  But when doctors ask me (and my siblings) at the hospital “Does your dad understand what Do Not Resuscitate mean?  Have you looked into palliative care? Does your dad prefer to die at home or at a hospice?”

I thought with my dad at home, we could manage the visits from the various people (everyone from nurse to social worker).   But they just tell my sister they are coming over.  The house is just an extension of the hospital.  I guess surprise visits are part of the routine.  It doesn’t matter that my sister has to stop work for an hour or two to deal with them.  So she now bears the brunt of the questions.   They insist on asking my dad questions about end of life care.  I wish they would just f*ck off.  While dad knows he doesn’t have years left, I don’t want him to think he only has days to live.  In his current mental state, I don’t know how he’ll react.

Recently we got word that my favorite aunt passed away.  My siblings and I have different views on whether or not dad needs to know and what to tell him.  It hasn’t created a rift or anything like that.  I told them if he ask, I’ll tell him that she passed away.  I was the one that told him at the hospital about signing consent forms for applying to a hospice / palliative care centre and that the entire program of living at home is part of the hospital’s palliative care.  He paused and listened attentively.  I tried to keep it as simple as possible.  It seemed to work. He asked a few questions and was fine with it.  I think he was just glad to be going home.

I’m going to miss my aunt.  I spoke to her before she started her chemo.  Then everything fell apart.  She never made it back home.  I’m just glad she’s no longer in pain.

If you read this far down, you must be made of stern stuff.  I know a lot of my  recent entries have not been easy to read or even comment.  A blogger who I respect wrote that he was at a lost for words and felt helpless reading my recent entries.  But he wanted me to know he still read them even though he didn’t leave any comments.  I thanked him, not just for his honesty but for making the journey in life a bit more bearable.

I don’t know how to close this messy entry.  I know I’ll be fine and make it through this.  I’ve been down this road before.

An update to my previous pulse…

It’s just heartbreaking seeing dad in the hospital bed and crying out in pain.  While the pain is now manageable, he is still bedridden.  He finally started to eat some solid foods.  He has no idea why he is in the hospital and we have to slowly reorient him back to reality.  We have to do this daily.  There’s always one of us with him.  I’m there during the daytime.  My brother leaves work early, gets our dinner and anything else we need and relieves me.  My sister comes in later at night and stays over.  She goes home, does some work and gets to sleep in the late afternoon.  My dad’s grasp of reality is sometimes good and sometimes delusional.  He tried to pull out his IV one night and climb out of bed.  My sister and the night nurse stopped him. 

He forgets that we are there, forgets that he had tests, alternates between being angry to the staff and being meek.  Sometimes he’ll wake up and has this look of utter panic until I walk over and hold his hands.  He is appalled & humiliated that people have to clean and change him.  He is too frail for a bedpan. 

We have no idea what happened to him but believe the problem was caused by a fall.  After being in bed for so many days, he’ll have to slowly get his strength and balance back.  A social worker and others will recommend what we need for home.  I’m sure he’ll need around the clock care.

This afternoon, my brother and I were talking outside his room while he was asleep.  If I’m outside the room, I usually check every couple of minutes and this time, I saw him trying to sit up.  He said he needed to get out of bed and start walking.  I explained he was still too weak and a physiotherapist is seeing him tomorrow.  He kept saying he wasn’t an invalid and we shouldn’t just abandon him like a discarded log.  I had to slowly explain what happened and why he was so tired today after 2 painful trips downstairs for testing.  After many minutes of assuring him that we want him to get well and we want him to come home, he felt a bit better. 

What’s really odd is as I was talking to him, I suddenly had this feeling of my mom telling me “I told him that he needs to get out of bed.” 

In a rare moment of candor, he said he thought he would be spending his remaining years quietly reading his books and enjoying the time at home.  He can’t believe he is suffering in a hospital.  He’s already told us that retirement homes and seniors homes are where people are dumped before they die.  While I try to stay positive, there are many moments when I fear he will not go home. 

I took a walk after work to get some air.  I thought the walk would brighten my mood a bit but it didn’t.   I dropped a letter in the mailbox.  Everyone on the street seemed to have a specific place to go.  The restaurants were slowly filling up.  The sport bar was getting busy for tonight’s hockey game.  I did a bit of window shopping, looking at eye glasses, clothes, shoes and food.  I notice a lot more Asian guys in my neighbourhood now… young, good looking and stylish.  One walked past me and I could smell his Gatsby hair gel.  But my mind wasn’t on eye candies tonight. 

I went to the park and sat down on a bench.  The air was getting cool but still comfortable.  I thought about work.  I took out my camera and felt sad that I haven’t played with it for some time.  I debated going to a coffee shop to read.  But I already have insomnia and even the smell of coffee will keep me up.  I looked at a group of women exercising in the park. Maybe I should join them and get in shape.  The evening air started to get a bit colder.  Should I pick up some food, drop in for a quick bite or should I cook?  I past a few restaurants.  I didn’t feel like spending any money tonight.  I decided to go home instead.

On my way, I past by the mailbox again.  The letter I dropped off was for the renewal of my dad’s lawn care service.  He got very worked up on the weekend about the dandelions and the length of the grass.  There was some dandelions but it wasn’t the end of the world.  When I got home on Sunday, I found the renewal form from the lawncare people in my dad’s pile of letters that I keep for him.  I called them on Monday and left a message.  They called back and said they are already booked for the summer but will squeeze my dad in because he is a previous customer.  I called my dad to let him know.  He sounded pleased.  The next day my sister emailed me.  Dad is very agitated about the lawn.  My dad kept trying to phone me but I was in meetings.  I called him back.  “The dandelions have now covered the front lawn.  Can they send someone over now to pluck them out?”  I called the lawn service back again.  No they don’t pick out dandelions.  But I added the service for fertilizing and weed control.  I called my dad back today. He sounded stressed out.  “When will they show up? The grass is very long!”  I told him they are trying to squeeze him in as they are booked up for the summer already.  “What do you mean squeeze me in?  When will they do that?”  I told him not to worry but they will show up.  He grumbled and muttered something.

So this is my dad’s world.  Instead of worrying about his health, his swollen feet or his hygiene, he worries about the front lawn.  Deep sigh.  I went back to my condo, cooked some scrambled eggs for dinner and went back to work.  Maybe I’ll feel useful.

Dad wasn’t in a great mood when I picked him up for dinner.  We had originally intended to go to my brother’s place to celebrate someone’s birthday.  But my sister told me dad didn’t want to go because there would be too many people there.    As dad was putting on his socks, I noticed it had a large hole in the heel.  He began to complain about it while I quickly went downstairs to the dryer.  I found a new pair and also got him to put on some moisturizer for his feet as the skin was very dry.  He grumbled about my fussiness but I got what I wanted. I help him with his jacket and shoes and head out.  As we slowly made our way to my car,  Dad thought I left my car running.  I told him it was a motorcycle revving nearby.  He paused to listen to the rumbling engine. 

As we drove away, I asked him about the Harley Davidson he used to own.  He retold me the tales of his Harley and how he installed a siren on it.  His mood improved as he recalled those good old days.  I could picture him reminiscing about riding with his friends.  The siren was loud he recalled.  He would turn it on so that cars would move out of his way.  I asked him how many horsepower his bike had.  He didn’t remember but he told me speed wasn’t a problem.  He always rode in the front of his pack.

He struggled to remember his friend’s name who gave him some tips on how to handle the bike.  All he could remember was that his friends was a policeman.  “I had some good times.  I can’t complain about those days.”  I told him about a show about pickers who search and collect old stuff.  Anything Harley was always good – including a bike frame, gas tank etc…  As I drove to the highway, the light turned red.  Dad smacked his hand.  I’m sure he was imagining his old Harley flying through the intersection.  “Wasn’t your bike heavy?”  I asked while we were waiting for the green light. 

“Not if you know how to handle the bike.  It wasn’t a problem at all.”  I could feel his pride.  We soon hit the highway and I floored it to pass some cars.  He didn’t complain as my VTEC screamed.  I was careful with my precious cargo and settled into a nice leisurely pace to the restaurant. 

We ordered 3 dishes and he ate quite a bit.  Since I’m a fast eater, I finish my dinner.  I watch in contentment as he slowly ate.  When he put away the small bowl of dessert, he groaned about how full he was.  I tell him “You have a good appetite tonight.”  He nodded. As we leave, I hold on to him as we slowly weaved our way to the door. 

It’s not easy to put my dad in a positive frame of mind.  Tonight it worked.  Tomorrow – who knows.  But I’m glad he ate well tonight and I’m also glad he remembered his Harley. 

* * * *

It’s past 2:30 AM and I can’t sleep.  I’m didn’t check the grammar or do any editing with this post.  So pardon any errors.  I just hope sleep will soon visit me. 

When my siblings and I were young, my mom would tell us that dad used to sing to her when they were dating.  She giggled and laughed when she told us the story.  We all laughed at this unbelievable story.   We’ve never heard dad sing before.  Then one day, she was telling the story again when dad was in the room.  So he sang the song and pretended to chase after her.  We were laughing so hard at the two of them.  It was one of the very few times I saw dad out of his typical Asian father role.   He continued singing while we laughed hysterically.  After he finished, they both went back to whatever they were doing. 

I’m not sure why I thought of this tonight.  I had a tough time remembering which version of the song they liked.  I chose this version because dad also had a deep voice.

Did you sing to your loved ones or vice versa? 

I took dad to the bookstore the other day.  He’s always told me his books are his friends since he doesn’t have any close friends.  The last time I took him there, he leaned on his cane as he crouched gingerly looking for books that would interest him.  He hated the cane and didn’t want to use his walker.  He staunchly declared “I’m not like those other old folks.”  I would suffer minor heart attacks as he shakily bent over and peer at the titles.  This time though, he came prepared with a list.  I was surprised.  We soon found a salesperson and my dad gave her the list.

The list was carefully written with his must have books by 10 authors.  He was also clear that if that book wasn’t available, he would consider others.  The sales clerk looked at the list.  The first name was Albert Camus.  She asked “Albert Camus is the first author?”  “Yes, Alber-kamu”, my dad gently corrected her (and me too).  She went to the computer and searched.  His handwriting was clear despite a couple of fingers gnarled by arthritis.  I see the others on the list  Descartes, Gibbon, Cicero and more.   While I recognized some of the names – the others were a mystery to me and I have already forgotten them by now.  I feel like such an illiterate idiot.  

Some of the books were at the store and some weren’t.  She went to the shelves to get the books while we sat down and returned within a few minutes.  He got his prized “The Rise and Fall of the Roman Empire – Volume 1 to 6″.  I warned him that the price was a bit steep (over $150 for the 6 volumes).  But he said it’s six books so it’s not that bad.  I lugged the books with one hand, held his arm with the other and we both shuffled over to the cashier.  The bill was over $200.  He feigned surprise and hinted at a seniors discount.  I almost told the clerk that he buys these books with what’s left from his measly pension.  He pulled out his Amex and signed it with a deep sigh.  But I knew he was almost giddy with joy. 

As soon as we got home, I put the books on the table by his chair.  Within minutes, he pounced on the first book.  I went off to the kitchen to make dinner for him.  During dinner, he told me about the author Edward Gibbon.  He practically gave me his bio.  I checked online afterwards and was it matched.  He has a lot of books so I asked him if he might already have these books somewhere.  He said he didn’t.  He told me he came across an article about one of the books and realized how much he wanted to read them.  He said a lot of these books are classics that scholars have prized.  He was kicking himself for not getting these books earlier.  I keep thinking though that he probably has some of these books before.  But I didn’t really mind.  I realized in some ways, this was his bucket list and he was happy getting these books.

He lamented to me that none of his neighbours were serious scholars and readers.  After dinner, I washed the dishes while he went back to the living room sofa to be with his new friends.

I accompanied dad to another of his medical appointments.  It’s a huge waiting room, a bit dark and lined with seats.  Dad was quiet and for once was reading his magazine.  I had an old paperback science fiction novel.  I would discreetly glance at dad every so often to see if he had nodded off.  There weren’t a lot of folks in the waiting room and the nurses would come out and call out the next appointments.  Dad and I quietly settled into our reading, each of us trying to get comfortable in the firm and narrow seats.  I heard a gruff and hoarse voice of a new patient wandering in.  A woman’s voice quickly retorted “Dad!  Will you stop talking so loud! Why do you have to yell?”  I looked up.  The father was an stout man with a well tanned skin.  He was probably in his late 60′s, balding and had a cane.  He stopped, turned to the woman behind him and said “I wasn’t yelling.”  He had a deep, gravely voice with a slight accent that I couldn’t place.  The woman was in her mid to late 30′s, long brown hair with one hand texting on her phone.  She had a frown.  She looked and sounded impatient.  

They eventually sat down after another brief exchange.  The man started a conversation with a person sitting beside him.  “I wasn’t yelling.  I used to be a miner.”  While his voice was loud, I didn’t think he was yelling either.  While the man was going on with his neighbor, the woman was talking to someone on her phone.  I stared at my book and tried to regain my concentration.  Twenty minutes later, a nurse came out to talk to them.  The woman held a finger out to the nurse and told the person on the phone “I have to go now, the hospital lady wants to talk to me.”  Her hand gestured dramatically as if she was conducting a concert. “I’ll call you back.  Yes… I’ll call you back in a few minutes.  Right… ok… yes, she’s here and needs to talk to me.”   The nurse quietly told them that one of the scanners is down and they need to reschedule their appointment for the next day.  They agreed on the time to come back.  The father looked a bit confused but got up to listen to the exchange.   

“Come on dad!  We have to go now!”  The woman was already 15 feet ahead.  The father slowly moved to catch up “Yes, I’m coming.”  “Stop talking so loud!”  The old man said to no one in particular.  “I used to be in a mine.”  He pointed to his ears, “I can’t hear too well.”  He noticed me staring at him.  I smiled back and waved goodbye to him.  He smiled at me and slowly walked off. 

I glanced over at dad and felt bad for all of us.  I wonder if I sound that way when I’m impatient. 

I took dad down for a couple of medical appointments the other day.  The first appointment was uneventful.  There was a 3 hour wait between them so we found our way to a coffee shop.  I had cautioned dad about the long wait and told him to bring a book or magazine to read.  He brought along a section of the New York Times instead.  I had a magazine.  He didn’t feel like reading.  I wondered how patient he’ll be today. 

So we chatted and the conversation twisted and turned through his memory lanes.  We spent most of the time at prewar talking about his relatives.  I learned a bit more about my great-grandfather and also my grandfather.  I knew my great grandfather was an entrepreneur who started the family business despite being illiterate.  He went on to make lots of money (none of which got passed down to my grandfather – a long sad story in itself).  

Dad showed an early interest in business and commerce.  He wanted to go to the US to study even though that was prohibitively expensive.  I asked him which university he wanted to go to.  He replied “Wharton… did you know it’s part of University of Pennsylvania?”  I said I didn’t.  He proceeded to tell me that he had already corresponded with the registrar.  They assured him that his marks were good enough to get in.  Dad was also taking a night class at the local university as well.   But my grandfather told my dad that he was too young.  He asked my dad to work at the family business for 2 years before going to university.

“After those 2 years, my dad promised me I can go to the US to study.  But he never got a chance to make good on his promise.”  Dad started to look away and became silent.  I knew his life would have been completely different if he was in the US at that time.  He started to talk again about the war breaking out.  It killed his dreams and changed his life forever. 

After I got home, I looked up Wharton and read a bit about the school.  I don’t know why I did that.  Maybe it was just a chance to connect with one of his dreams. 

It’s tough watching dad age.  He took a tumble the other day as we were walking from the parking lot to the restaurant.  He uses a cane but despises it.  He waves me off when I walk beside him and prefers to stay a couple of steps behind.  I slow down and he’ll slow down.  So far it’s been uneventful until the other day.  His foot caught on the edge of the curb and he fell.  I grabbed at him but it was too late already. 

He shrugged it off as if nothing happened.  Throughout dinner I asked if he was fine and he said he was.  He had a couple of scratches.   I checked with him a few days afterwards and he said there’s no pain anywhere except his fingers are a bit stiff.  He reluctantly allows me to walk beside him now.  When I was checking his hands the other day, his fingers were gnarled – just like mom’s was.  But he says there’s no arthritic pain.  I don’t believe him and wishes he wasn’t so stoic about it.   

His appetite wasn’t there when we had dinner the other night.   But it was the most he ate in several days.  After I got home from work yesterday, I made a minced beef with salted preserved vegetable, ginger and oyster sauce that was steamed over rice.   I took it over so he had some home cooked food the next day.  He seemed tired and was getting ready to sleep. 

Anyways… I’m just venting. 

As I was driving my dad to dinner, he told me he had a nightmare the past week.  This is the first time in my life that he’s ever talked to me about any bad dreams.  He keeps a lot of his emotions and thoughts inside.  I don’t know how my mom dealt with him.  I think her patience coupled with gentle prodding and active listening skills helped.  My dad said in his dream, there was a man standing in the porch.  He was looking into the door and the dining room window.  My dad kept trying to tell him to go away but he was scared of opening the door.  The man just stood there and waited without saying anything.

I got goosebumps when I heard this.  The symbolism was so clear in my mind.  Dad told me he woke up because of the dream.  He slowly went to the door and checked just to make sure there was no one there.  I told him there was nothing to worry about.  But for the rest of the drive, I gripped the steering wheel tighter.  As soon as he said he had a nightmare, I just had a feeling it was going to be something along these lines. 

Well – maybe I’m just reading too much into this.