I was at a hospice recently to attend a service.  It was my first time there although my sister has been there a few times.  We were there to attend a remembrance service to honour those that have passed away recently.  The service was held at the front lobby which the emcee described as a sacred place.  There were names of those who have passed on a large banner against the wall.  While my dad passed away at home, the hospice provided support for us.

After the service, I chatted with someone who lost her husband.  She told me this was a very special place.  It was small (only 1 floor) and there is a volunteer staff that cook homestyle meals daily.  She talked a bit about the wonderful staff and referenced back to the lobby as sacred and special.  I thought about all the names on the large banner and figured that was what she meant.  She then said the hospice’s philosophy could be summed up with this: “You come in through the front door and you leave by the front door.”  When someone dies at the hospice, the body is carried through the front door.   The staff wait at the front lobby with candles and there is a simple ceremony.   There isn’t a back door where death is quietly ushered away.

I never thought about death in those terms before.  It’s not an easy subject to write or to read about.  Maybe there’s a lot more on my mind than I want to admit to myself.

I held his hands and told him what an awesome dad he was.  I thought he moved his fingers a bit.  I watched as his breath grew shallower and slower.  I yelled for my siblings to come to the room.  We watched him take his final breath and said our goodbyes.  Just moments before I thought I could sense my mom but maybe it was my imagination.  He wasn’t in pain or discomfort.  We made sure the there were enough meds.  He had his last rites just hours before.  Our house is just a modest home but to him, it was his castle.  He loved it and died there.

Goodbye dad, I love you.  We’ll miss you.  Give mom a hug from all of us.  I’m happy that you’re with her now and free of the pain and suffering from your illness.

A few years ago, I lost my mom to cancer.  At least, that’s what I tell people.  She was diagnosed just before winter and passed away in the summer.   She knew she didn’t have long to live when she went into the hospital.  It was for a tracheotomy.  The tumor was creating a lot of pain in the neck area and slowly choking her.  All she wanted was just a few weeks – preferably at home.  I remember her laughing after the surgery. We tried to make the hospital room as comfortable as possible.  The nurses and staff let us use the second bed.  We brought in a CD player and her Chinese newspapers.   I would bring in my photography magazines so she could look at some of the wonderful outdoor & wildlife photography.  Everyday she would ask what day it was.  Eventually we would just tell her the date right once we showed up.  Her bed was too low and too far from the window.  All she saw was the sky.  We would describe the scenery to her.

One day, my dad  said “listen to this”.  In her new guttural voice, she said “Happy Birthday” to my dad.  My dad laughed.  It was the first time both of them laughed in the hospital.  I had forgotten it was my dad’s birthday.  She started to talk cautiously about coming home and to see her garden.  I wondered how we were going to handle this but was glad that there was a chance of her coming home.

Then the cruel daggers of reality struck.  Several times a day, her throat had to be cleared of mucus.  It was a tube sucked the mucus out.  She struggled and it was a painful ordeal.  The nurses wanted teach us how to do it.  Both my sister and brother tried.  I didn’t.  I couldn’t bear to see her struggle as if she was being choked.  There was also a rotten smell from the opening.  My mom’s sense of smell was very keen and I don’t know how she coped with it.

One day, my sister and I were with her.  She wanted to go to the bathroom.  I had done this before with my brother.  I held on to her while my brother wiped her.  I felt her shame.  This time my sister was there so I thought it might be a bit easier.  But as she went into the bathroom, she fainted.  I held on to her desperately and let her body leaned on mine.  I had the wall to support my back.  But my arms couldn’t hold on to her.  I slowly slid down the wall to the floor while holding on to her.   The nurses came in and took over.  I felt so useless.

When I spoke to my mom afterwards, she didn’t remember what happened.  A couple of days later, I got a call from my sister early in the morning.  My mom wanted to meet with all of us.  When we got there, she told us in that strange new voice “I want to die.”  I didn’t say anything.  I noticed my dad slowly walking out of the room.  He put his head to the wall and started to cry.  I walked over and just put my hand on his shoulder.  The next few moments are a blur.  A priest came in to give her the last rites.  I mumbled the Lord’s Prayer.  Later that day, a nurse removed the tube for her peritoneal dialysis.   Her doctor saw us afterwards and assured us the diabetic coma would be painless.  There was a part of me that was numb to all of this. One night, it was just me and her in the room.  She was asleep.  I started by rattling off the date.  Then slowly as I held her hand, I thanked her for being a wonderful mom and for raising me.  I struggled because I had to speak Cantonese.  I felt like a child again.  I told her she would see her mom, dad and sister.  Then I said she would see her beloved cats.  She suddenly smiled and held that for about a second.  I knew she heard me.   I just wanted her to know things would be ok.

She passed away while my brother and I were in the funeral home making arrangements.  I realized then why she kept asking us for the date.  She hung on 1 day past her wedding anniversary.  I knew she didn’t want my dad to associate that day with her death.  The cancer didn’t beat her.  She was brave to the end and died on her terms.

To my readers, I’m sorry if all of my recent posts have been grim.  I need to slowly get this stuff out of me.

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.

I had an odd dream the other day.  It shook me up for a couple of days.  I don’t remember a lot of the details, just the general theme.  I dreamt that I only had 2 to 3 months to live.  But the doctor had a lot of trouble telling me the news.  I pretty well had to pry it out from him.  I walked out of the hospital in a daze.  I wanted to tell someone but everywhere I went – people were just going on with their lives. There was a steady stream of pedestrians all going about with their business.  People going to work, kids going to school and humanity just going about their business.  It was a beautiful summer day but no one seemed to notice.  People were so busy with their own affairs.  I kept looking for someone to talk to.  I wanted to tell someone that it wasn’t business as usual for me anymore. 

But there wasn’t anyone that I knew.  Everyone just kept walking on.  I felt helpless and ignored.  I was just a silent extra in this movie of life.  It was very unsettling and that feeling lingered with me for a couple of days. 

Perhaps this is how my dad feels when he sees me and my siblings going on with life.  I thought I was an emphatic person but maybe this is Someone’s way of telling me to pay closer attention. 

The other weird thing is that I woke up with some red marks on my forehead.  It’s almost as if someone scratched it with their fingernails.  I stared at myself in the bathroom mirror trying to figure out what it was.  To my surprise, the reflection of the red lines looked a lot like 14.  It was still there after I showered and it slowly faded away by lunch time. 

We weren’t sure how to handle telling dad about his younger brother.  We had gotten news that he has liver cancer.  But we decided to tell him as it would be cruel to withhold the information.  On the way to dinner one night, dad asked if I had more information.  I told him everything I knew which wasn’t much.  “How could he have gotten liver cancer?  He never had any signs of it.”  He went on a bit and became quiet.  We always drive on the highway near the airport.  He likes watching planes too and I was hoping there would be something big like a 747 landing.  But the skies were empty.  Suddenly my dad said “We weren’t that close.”. That was the end of the conversation.

A couple of days ago, I gotten word that my uncle was moved to a palliative care centre and his condition has gotten worse.  His wife sent an email out and said that if anyone has a message to be read to him, she would do that.  My dad’s family aren’t that close and I’m not close to them as well (with the exception of one cousin).  Everyone is scattered across the globe but the gap in family bond is even farther apart.  It took me a day to write a short paragraph to my uncle.  

This situation has made me think about my own siblings.  We aren’t that tight.  We don’t hug, don’t talk much during the week etc…  I only see my sister when I visit my dad.  I see my brother when we take dad down to his appointments.  But we don’t have those heartfelt talks you see on movies.  While we aren’t feuding, I can sense that when my dad passes on, I’ll probably go my separate ways and see them only during Xmas or some holidays.  I have to admit there are days when I don’t care for any family presence at all.  It’s sad.  Mom and dad would be shaking their heads if they knew how I felt.

We’ve been keeping an eye on dad these past few weeks.  We received word that his brother in law (my uncle) passed away a couple of weeks ago.  He’s more like a friend to my dad and they have known each other for decades.  His brother in law lives across the ocean and my dad last visited him a few years ago when he was still able to get around.  They’ve always exchanged cards and phone calls.  I’ve only met him once and he was a very generous man with a big heart.  I dropped by the day after he heard the news to make sure he was ok.  He didn’t say much and kept to himself during our weekly dinner.  When I took him to one of his medical appointments, I broached the subject.  He wanted more details about my uncle’s death.  I told him as much as I know about my uncle’s illness.  At the hospital, he was unusually calm and patient even with the long wait. 

The next day though, he exploded in anger on my brother for something very trivial.  I was surprised when I heard about this.  I think my brother understood that it wasn’t anything he did.  My sister on the other hand has a somewhat tense relationship with my dad.  She’s the primary care giver so the stress is high.  While she cares for him very much, they have a tough time communicating with each other.  Sometimes I try to tell my sister that dad’s gradual dementia can get the better of him and she shouldn’t take it personally.  But we all have very different relationship with dad.   He worked long hours and it was mom that really raised us.  When mom passed away our “cushion” from dad was removed.  So each of us approached this in our own way and had to rebuild new bonds. 

I’m sure dad senses his mortality each day.  He failed an eye test as well which meant he had to stop driving.  It was something he had stubbornly refused despite our pleas and stern discussions.  It was the last vestige of a former life that he clung on to.  A life where he was independent and in charge.  The news of my uncle’s passing and his ill health are stark reminders.  I try to take all of this day by day but the days will soon run out.  There are still some difficult and tricky discussions that I need to have with him. 

It’s been a tough two days looking after dad.   He picked up a pretty bad infection in his foot.  He says the pain is unbearable and he can’t walk.  It’s been tough on my sister who bears the primary burden of home care.  I help him get dressed and with washroom duties.  He’s got other health problems as well.  A recent change in medication has ruined his appetite and made him nauseous.  He can only eat a couple spoons of food before calling it quits. 

At his age, his body is beginning to fail him.  Incontinence is just awful both physically and mentally.  I was hesitant to write about this.  It’s humiliating for him.  But each of us will deal with it so be warned.   I worry about his mental state.  He doesn’t want to be put in any type of a retirement home or facility.  So he keeps pretending that all is well and doesn’t tell us anything until it’s too late. 

So for the next few weeks, we will deal with things like home care assistance, special walking carts, frames for toilet… and stuff like that.  The other week at the hospital I picked up brochures about Power of Attorney, palliative care, living will and stuff like that. 

Death – I can hear your faint footsteps coming again.  But for now, he’s still in our hands. 

I visited someone at the hospital the other night.   It was clear that she wasn’t going to make it out.  Her eyes were sunken in.   Her mouth was dry and her lips were chapped.  Despite the oxygen tubes, her breathing was very laboured and fast.  I chatted briefly with her and other members of her family.  The machine that dispenses the IV buzzed quietly and regularly. 

Her daughter watched anxiously and gently rubbed her mother’s foot.   She began to fall asleep but would wake up suddenly and look around at all the people by her bed.  She did this a couple of times but eventually fell into an exhausted sleep.  Her breathing remained quick and shallow.  I felt for the family. 

When I drove home that night, the rain was pouring hard.  I gave J a quick call, showered and tried to sleep.  I thought about my mom from a few years ago.  I remember watching my aunt die even earlier.  I remember saying goodbye to my grandmother as a young child not understanding what was going on.  I thought about dad, my family &  J.  I wonder about my future.  I worry about dying alone.  I said a silent prayer and closed my eyes. 

The traffic was surprisingly light even though it was in the
middle of the rush hour.  My radio was on
the all news station hoping to catch the latest traffic report in case there
was an accident up ahead.  But I got
across the city without even hitting any stop and go traffic.  I thought that was the strangest rush hour I’ve driven in.  As I made my way down to my dad’s place, I
kept thinking what I was going to say to him.

I had called him just before I left work to see how he
was.  I knew he had just found out from
his brother that his sister had passed away. 
It was not a surprise as she had been ill.  He told me he was still in shock and very distressed.  When I pulled into the driveway, he was
sitting out on the porch.  I asked him if
he wanted a tea or some hot water.  He
said no and just stared straight ahead. 
I dropped my laptop bag inside and got a bottle of water.  My sister was already home and on the phone
with a relative.  I slipped back outside
to be with him.

I told him we were fortunate to have visited her couple of
weeks ago.  He said yes, that is of some
consolation as was finding out that she passed away peacefully.   He started talking about his sister and the
old days.  I am not close to any of my
dad’s relatives at all.  They weren’t a
close family.  My grandmother wasn’t
exactly a doting mother.  She was cold and
distant.  But dad told me that he was
closer to this sister than the others. 

We spent about an hour out there in the cool air
chatting.  I was starting to get cold but
he had his fleece on so I hung in there gamely. 
During one moment of silence, I noticed across the street a woman
dragging a recycling bin back to the garage. 
Before she got halfway, her son came out to meet her and gave her a long
hug.  She just dropped the bin and her
purse and held on to her son.  That’s
what I wanted to do to with my dad.

Every so often he would continue talking about what life was
like back then.  I gently pried him with
easy questions but let him guide the conversation.  Maybe it was my imagination or wishful
thinking but his voice seemed a bit stronger as he continued to talk.

He asked me if I got the thank you card from my aunt.  I said I did but I haven’t opened it
yet.  He showed me the thank you card he
got from his sister.  It was short and
sweet.  I was surprised that her
handwriting was still very good.  I
stayed for dinner to make sure he ate. 
As I pulled out of the driveway, he stood by the door and waved goodbye
– his usual routine.  When I got home, I
saw the card from my aunt.  In it, she
thanked me for “bringing my brother here to be with me.”  I said a silent prayer for her.  Good bye Auntie N.