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.

It’s been awhile since I’ve posted anything.  It’s partly because I don’t really have anything good to write about.

These past few years, the long, dark days of winter have dampened my mood.  I’ve also gotten way out of shape.  When I’m stressed, I tend to eat more.  When I’m at my dad’s place, I snack like crazy.  It doesn’t help that my sister leaves a lot of junk food around.  Dinners there are usually take out food.  No one really has time to cook.  I downloaded a fitness app only to find out how far out of shape I’m in.  I don’t sleep enough.  I know I’ll pay dearly for this.

My dad’s health is declining rapidly.  We used to celebrate minor victories.  He ate well.  He slept well.  He had a bowel movement.  There wasn’t any pain.  It’s hard to find those minor victories now.  I stayed over the other night.  I told my sister to go to bed and she did around 1 AM.  My dad called out frequently when he is asleep – not deep sleep.  I had to keep checking to see if he was really calling out or just talking in his sleep.  He did wake up a couple of times and I gave him some water.  I would hold his hands to give him some assurance and told him to rest and go back to sleep.  I think the hardest part is watching him grimacing in pain when he is being changed.  I finally got to nap for an hour around 4.  My sister woke up a few times to check.  She eventually got up around 5.  It’s like this for her every night.  I left the house just as the rush hour started.  When I got home, I fueled myself with caffeine to get me through the day.   My brother came over later that day with food.

Is this heroic? No.  I’m just doing my bit to help.  I have no idea how previous generations handled all of this.  How do the people living around the poverty line manage with elder care and dementia?

Writing is one of the few things that keep me sane.  I wish I had more time for this.

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.

Dementia has got to be one of the most cruel diseases around.  It’s reduced my dad from a very intelligent & articulate man to one that lashes out (verbally and physically), cries and hard to manage.  It escalates at night turning bedtime into a nightmarish situation.  I don’t understand his mind.  He seems fine during the day and during the night – this other person comes out.   My sister bears the brunt of this.  I’m able to go home and wallow in guilt.

There’s some odd things happening in my condo.  A couple of weeks ago, in the wee hours of the night, I heard creaking sounds.  I tell myself it’s the temperature change that’s causing the hardwood floors to creak.  But this time it sounded as if there was someone walking inside my unit.  I got out of bed and looked around my unit.  There wasn’t anyone of course.  But a couple of my kitchen cupboards doors were opened.  Hmm…. I have left them opened before but I had no idea if I left them opened that night.  Needless to say, I left the lights on when I went back to bed.

A few nights ago, I was washing dishes when I heard a loud noise behind me.  A box of plastic food containers fell and spilled open.  This box has been sitting on top of a case of water for months.  The only way it could have fallen if someone walked by it and caught the edge of the box with their foot.   I’m sure there is a logical explanation but I haven’t figured it out yet.

Strange…

Update on my dad:  He’s not doing that well.  He got a bit violent, pushing the personal support worker, swearing and throwing things. I had to keep calm when I talked to him.  The doctor at the hospital told us that when the dementia gets worse, some of the patient’s fears and behaviours gets exaggerated.  If the patient was a cautious and suspicious type of person, that behaviour might become dominant.  In my dad’s case, he is a solitary figure.  He just kept telling us “leave me the f*ck alone!”.   I know something is bothering him but I couldn’t get it out from him or he wasn’t able to express it which made him even more frustrated.  The home care is still best for him now despite all the challenges.

My dad was a typical Asian father.  He was in charge although we knew mom was the bedrock of the family.  Dad sacrificed a lot and made sure we had a roof over our heads, food on the table, clothes on our backs and an education.  When I started to work and gave money back to my parents, it was always to mom.  I pretty well used mom as a buffer.  It wasn’t that I was scared of dad.  It was just the way it was. 

Mom was always the one who would speak to dad.  She understood my father, his way of thinking and knew how to talk to him.  No matter how tired they were, they always made time every night to sit together and chat quietly.  Because dad was older, I always thought he would pass away first.  But that wasn’t the case.  Mom had a lot of illnesses and contracted a vicious form of cancer.  She passed away a few months after.  Dad was shaken to the core.  I didn’t know what to do with him and I never knew how to really talk to him.  But since mom’s passing, our relationship slowly grew.  He can be stubborn and annoying.  But I gradually enjoyed my weekly dinners with him.  He became my “date”.  We went to bookstores.  He would pass by the “Romantic Novels” section and proclaimed loudly that it was “garbage”.  We got a few glares from those faithful readers.  I helped him with his banking.  He never stopped giving me advice. 

When he started to get more and more confused, I started to get worried.  My instincts were to simply gradually bring him back to reality gently rather than act shock or confused.  He got me my first jock strap when I started high school.  I was too embarrassed to buy one myself for gym.  I got him his first adult diaper.  He told me he was too embarrassed about the problem and didn’t know what to do.

Every day at the hospital, I would make sure I hold dad’s hand or stroke it gently.  I joke with him.  He told me he was scared and that he prayed very hard.  He wasn’t sure if his prayers were answered.  He thought his prayers weren’t eloquent.  I told him prayers are prayers and they will be heard.  I keep telling him that we will be here and won’t abandon him. I never knew he prayed.  I never seen him this scared before.  

I don’t know what each day will bring.  Right now he just wants to go home.  So that’s what we’ll work towards.  Maybe the doctors will let him go home.

Mom was indeed the bedrock of the family.  She gave me one last gift when she passed away.  It was an opportunity to know my father a bit better and to see him in a different light. 
Thanks mom. 

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. 

It’s been a struggle trying to sort out dad’s finances.  I’m not exactly very organized and neither is my dad.  His desk would always be covered with mounds of papers.  In the past few years, I’ve been paying his bills online.  There are some bills that he pays by cheques (or checks to my American readers) and they are mostly magazine subscriptions.  But I’ve noticed he  is also paying for a few things that he doesn’t really need to (e.g. multiple payments to the same charity, useless CDs that he doesn’t want, books that he didn’t order…).  He does keep a cheque book (thank goodness).  But I’ve also found that he will pay a bill and then give me the statement afterwards and I pay it too.

So in my free time I’m trying to organize both our financials, carefully sorting them out and documenting everything.  This is painful, mind numbing and just stressful to an artsy fartsy guy like me. But I know once I get this done, things will be a lot better.  I’ve also asked him to tell me where he stores his important documents like his will.  I know it’s in his room somewhere…. unless he decided to keep it in a safe place that I don’t know about. 

While I was at his house a few weeks ago, I came across a note book with his handwriting.  He started to keep a journal for a few weeks and then stopped. One of his entries was about visiting my brother and sister in law.  There was a scribbling – “no kids” or something like that.  And then the line underneath was something like “same with Matt”.  That one hit me hard.  I closed the notebook and shoved it back in the cabinet.