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.

My dad is still in the hospital.  He is out of imminent danger thanks to a transfusion and a lot of medication.  But this experience is taking a toll on him physically and mentally. He gets confused very easily in this different environment.  He still can’t walk yet and it’ll be awhile before he can even go home.  The memory losses he goes through scares me.  He also gets depressed at the physical state he is in and being so helpless.  He depends on everyone for his well being.  If he needs to be changed, he has to wait until a nurse or attendant is available.  They moved him yesterday to another wing.  There are more people here that are “confused” and bed ridden.  It is a depressing place and I pull the curtains around dad’s bed so he doesn’t see everyone in his ward.

When I go home after spending a day at the hospital, I shower immediately. While the hot, soapy water washes away any germs, it doesn’t wash away my guilt, insecurity and fear.  At the hospital, I am the patient and filial son.  We hold his hands and assure him when he cries.  He has these huge fears of abandonment.  He worries incessantly about the financial burden and the toll it has taken on us.  We tell him we will still be there.  We also tell him that we’re trying to get personal care attendants too.  But I’m also the angry son who snaps back at my dad when he doesn’t eat.  I have become cold and emotionless.  It’s what I have to do to survive another day. 

I’ll soon leave for the hospital for my shift.  My siblings and I still provide round the clock coverage.  I caught myself thinking that I’ll get some sleep when this is over.  But that triggered another wave of guilt and sadness. 

It is hard to keep an elderly man hopeful and optimistic in a hospital.  My brother and sister continue our “shifts” so that there’s always someone with dad and to answer any medical questions.  He finally sat up in a chair one day and shuffled 5 steps yesterday. It exhausted him completely.  He can’t stand the hospital food so we have to always bring in food.  There’s so much that can go wrong with a body when it is bedridden.  We cut his food up, feed him and wonder what will happen next.  The staff here are patient when they change him.  We sometimes help when they are short staffed as it needs two people. 

I’m starting to see the flow of routine in the hospital. I know which nurses are better and which attendants are more patient.  I can sense worry and tension with other visitors.  When someone is scared and frustrated, they mask it with angry and sharp words.  You have to see through that.  As much as I’m fascinated with the rhythm and the inner goings of a hospital, I have no desire to stay here longer than necessary.  I have no idea when dad will be released. 

When I picked up some take out food for dad late last night, the restaurant had about 5 tables.  1 large table filled with kids and adults all happy and celebrating loudly.  Another table of 4 had a very quiet birthday dinner.  The singing of Happy Birthday sounded like a whisper.  Another small table with twenty somethings eating quietly but animatedly.  Conversations flowed back and forth.  No one had a smartphone out.  4 young people then walked in, all in black. No one was smiling, they just wanted to quiet their hunger.  They were all twenty somethings and maybe it was their first time dealing with death. 

The manager called me and gave me my food along with best wishes for my dad.  I walked out into the night with a mixture questions, worries, fears and hope.

My favorite aunt was recently diagnosed with lymphoma.  She’s my mom’s older sister and the last of the sisters on my mom’s side.  The sisters were tight and lived many miles apart.  But geography and time zones was overcome by their regular long distance phone calls.  As the years went on, we all got news the oldest sister in Hong Kong was on her last days. My mom couldn’t go back because of medical issues.  My favorite aunt and I flew back to Hong Kong.  We managed to see my aunt one last time before she took her last breath.  The phone calls continued but with one less sister. 

When my mom got cancer, my favorite aunt and my mom’s brother came over to visit.   They had a final reunion that was filled with laughter, food and solemn conversations.  It was a very teary goodbye.  After my mom passed away, my aunt flew in on the day of the funeral.  It was a very sad month for her.  Her husband had just passed away 2 weeks before.

Shortly after, I started to call my aunt about once a month to chat.  She had to put up with my limited Cantonese but we managed to chat each time for about 20 minutes.  Most of the conversation is just regular chit chat.  My cousin told me years later that her mom enjoyed my calls because I always made her laugh.  On months when I was really bogged down with work, my cousin would remind me that my aunt hasn’t heard from me in awhile.

I spoke with my aunt yesterday.  She’s undergoing tests to see where the cancer has spread.  She has other medical issues but they will have to wait.  Her first chemotherapy is in a week or two.  She sounded brave and determined.  But there was also fear in her voice.  She had told me just a few weeks ago she believed she had cancer.  Everyone told her that she was over reacting.  She asked about my dad, my work, and how every is doing.  I tried to sound optimistic but I also feared the worse.  

Last Sunday, I went to the cemetery to visit my mom.  I saw a pair of rabbits running after each other.  Sometimes they would stop and look at me.  One came with a few feet of me and stuck his tongue out before leaping away.  Above me a wood pecker was busy hammering at a tree trunk looking for insects.  A cool breeze fanned the evening air as dusk approached.  That night, I was able to sleep well for the first time in days without worrying about my aunt. 

We had dinner with my cousin and his family tonight.  On the way to the restaurant, my dad asked “How is C (my cousin) related to us?”  I told my dad that C is his nephew, the son of his youngest brother B.  “How is B doing now?  Is he still in Edmonton?”  I had to tell him again that his brother had passed away last year.  He paused as he grappled to understand.  He knew he forgotten.  He asked “What illness did he have?”  After I told him that it was cancer, he stopped asking questions and remained quiet for the rest of the trip.  My sister and I eventually made some small talk in the car.  It’s not the first time he has forgotten family members (including me) and events.  He remembers some things but will forget others.  It used to be he would remember the old days.  But that doesn’t seem to be the case anymore. 

As we were having dinner, he smiled and waved at my cousin’s baby girl.  He was genuinely delighted to see my cousin’s 2 young daughters.  He greeted the kids as if he was the proud grandparent.  He would occasionally wave at them, make faces and make them smile.  I wonder if he did that to me when I was a baby.  I watched as my cousin carefully pluck the lobster meat out for his daughter.  She giggled and smiled as she ate it.  I filled my dad’s bowl with food as he couldn’t reach the lazy susan.  My cousin and I were almost mirroring each others moves.  Except I watched him with a mixture of happiness and envy. 

I have to remind myself there is happiness and joy at all phases in the cycle of life.  It’s easy and apparent at the beginning when you have a baby.  It’s a lot deeper and perhaps  meaningful near the end with an elderly parent.

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.

The past few weeks have been a tricky balance between trying to enjoy life and keeping an eye on dad.  The last couple of times we saw his doctor, the wait was over an hour.  One time we had 3 appointments in the same day.  I even went there a day early to get an extra hospital card so I could check him on his second appointment while he was still waiting for his first appointment (blood test).  As luck would have it, the physician didn’t put in the requisition for his medicine.  I wasted 40 minutes trying to have him page and going through the usual hospital red tape.  It takes about an hour to two to prepare the medicine.  Because it’s expensive, they always wait until the patient is physically in the hospital before they can prepare it.  So we waited a good hour before he got his medicine.  Since it is administered in an IV, there was another 30 minutes of waiting for the medicine to empty and for the IV lines to be flushed.  By this time, my dad was exhausted and grumpy.  We went on to see his doctor.  We waited another hour or so.  When we saw him we were told his blood test results were not ready.  I said it usually takes 2 hours and we’ve been here a lot longer so the results should be ready.  The doctor went to the computer and just shook his head.  We had to come back in another month. 

So last week we came back and waited over 2 hours past the appointment time before the doctor was free.  I asked once why the wait was so excruciatingly long.  I was told he is only available 1/2 day a week at this hospital.  So they just overlay appointments.  If my dad’s appointment was at 1PM, there would be 4 or 5 people with the same time slot.  Each of the patients would go into another waiting room and wait for the doctor.  Some times the nurse would recognize us and would move us up.  But everyone else in the waiting room is also wary about that so she has to do it discreetly. 

My dad got a new prescription with some nasty side effects (loose bowels).  He missed Xmas dinner at his favorite restaurant and only nibbled at the take out food I got for him.  The next day my brother was hosting a dinner with the extended family and he missed that.  After a couple more days of not being able to eat, he got weak.  His doctor was only holidays and the message on his voicemail was to contact the operator who will then page the backup physician.  I did that but was told my dad’s doctor was not away.  So I left a message on his voicemail.  When he didn’t call back by the end of day, I simply told my sister to cut the prescription in half.  During this ordeal, my brother made daily trips to a restaurant to buy congee for him.  My sister made sure he drank more water and bananas.  He kept an eye on him at night when he went to the washroom.  The half dosage of his meds helped and he was able to start to eat more and kept his food in.  After persuading the hospital operator, I managed to get hold of my dad’s other physician who told him to stop the meds for one day and call him back the next day.  My dad got better and was more alert so he resumed the meds but at half dosage. 

In the meantime, I managed to squeeze in some dinners with friends but there is always this guilty feeling that I should do more.  I don’t know what the right level of balance is.  Guilt, even misplaced guilt can be corrosive and depressing. 

Forgive the rant (and any grammar / typos).   I wish our medical system (even though it has it good points) is more patient friendly. 

Peace and love for 2012. 

Oncologist (noun):  doctors who seldom have good news. 

I hope someday more and more oncologists can deliver good news. 

It’s hard to enjoy life right now.  There are pockets of good times that I cherish and that’s about it.  Inevitably something bad always follows every time I have a small moment of happiness or time to catch my breath.  Life is like that I suppose.  There’s nothing you can do but to suck it up and endure.  

Peace.

I’ve been working and staying at my dad’s place this week.  My sis is traveling on business.  It’s been tricky balancing work but it’s a quiet week (meeting wise) and most people attend meetings by phone anyways.  But it’s not comfortable working here and I have to walk around every hour to stretch my back.  My productivity is not that high when compared to working in an office so I work late to make up for it.  It just makes for long days. 

I was also very apprehensive as there’s only one spare bed left in the house.  It’s my mom’s old bed.  I changed the sheets (even though it has been changed since she passed away years ago) and was grateful I could fall asleep there.  Dad is spoiled whenever I’m here.  I chat with him during my breaks, get him tea, fruits, towel to wipe his face, get his mail, do his laundry, pay his bills and give him gentle reminders to brush his teeth and take his meds.  He gets 3 full meals as well.  He looked sad when I told him I am leaving Thursday night.  He also wanted me to swing by next week on a certain day but I couldn’t.  He has a couple of folks over to visit him and he was hoping I could help make coffee.  So I’ll have to figure out what to do.

It just overwhelming sometimes when I stay here.  There’s so much to do (e.g. cleaning, repairs) and I can’t get to any of them.  I keep telling myself I should enjoy the time I have with him.  It’s ironic.  I’ve always to have kids.  But my parenting skills are for my dad.  

This is by no means a comprehensive list.  But after watching my dad this past few years, I cringe every time I come across these. 

1.  Uneven sidewalks, roads, paths, stair cases, crowded elevators, escalators

2.  Doors that take a lot of effort to open.

3.  Fine print in packages – especially medicine (I had to use a magnifying glass for a cold medicine); or letters are in colors that don’t contrast well; small fonts in signs and call display on phones

4.  Phony invoices w/ threatening letters, scam phone calls.

5.  Boredom, loneliness & lack of companionship.

6.  Dimly lit areas.

7.  Clothes that take a long time to put on (small buttons, zippers, small openings for sleeves and head)

8.  Housekeeping duties

9.  Bathrooms that aren’t safe (e.g. lack of handles in bathtub, bath mats, chairs in tubs, rails for toilets)

10.  So many impatient folks out there… try walking a mile in their shoes.