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.

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.

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 saw this tip from godisinthewind  but didn't know how to like or reblog her entry.   So I'm just cutting and pasting until I figure out a better way.

• Name Link not Working?

  If you notice that names in comments are no longer clickable and the avatars lead to a ‘not found’ page, do this: Top right, of your screen where your cute lil avatar is, chose Edit Profile. Scroll through and look for the space next to Website. Add in your xanga address (eg. http://myname.xanga.com) and this make it so that your name becomes a clickable link. It still does not work with your avatar image however. Now going to look and see why that is.

Finally - it took ages for the internet to work its magic before I can get in. I guess the estimate of 12 to 36 hours were correct after all. So who else made it over?

And who are all these people I'm following? Where are the themes? And where's that picture I posted of myself? (just kidding...). I thought it would have all those themes that I have in my WordPress account. But I think I'll just take a few days to figure out how things work here.

I hope everyone is doing well and I hope Xanga will find a way to grow.

Why can't I comment on people's blogs?

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. 

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. 

I managed to create a backup blog on WordPress. I have no idea how to enable comments yet.  It looks like the future of Xanga will be a cliffhanger.  In case we don't get to Xanga 2.0, here's where you can find me:

 http://NocturnalTwins.wordpress.com/

I will see you soon. 

Finally, I want to thank all of you for the support, the kind words of encouragement, your prayers and keeping my dad in your thoughts.  It means a lot to me and I'm grateful to all of you.

Take care everyone.

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.

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.