Preparing for departure

Half of a year already passes

2010-01-17T16:31:00.000-08:00

It's January 17th and in just about 5 days it will be 6 months since my Father died.

I am checking in because there are some important components for those who are still living:

Coping
Reasoning
Acceptance

I believe that I picked a poor way to manage the post-death experience I have had in these 6 months. Each person will deal with death in their own way and no single path is right for everyone.

For me, I have been running as fast as I can not from the death, the event, nor because of fear but because it was the easiest choice. My life is chaos with moments of bliss sprinkled in there like hidden coveted gems in a favorite ice cream.

It was just a week ago when I really made some important realizations. I spent a Friday in the Emergency Room in a local hospital. I had been suffering from abdominal pain and reluctantly went in to have them check to see if my gall bladder needed to come out.

I laid on the gurney in my hospital gown and felt such loneliness. I was wheeled to a nearby department for an ultrasound. While in motion I just watched the acoustic ceiling tiles, lights, and it hit me.

I wasn't sad that my Father had died. It had been 14 years of sheer hell for him and to be honest, for all of us in the family. There are few things worse than being on edge and thinking that each medical challenge meant it was his time to go only to find that it wasn't. The tragedy is that he never got better, there were no days where he felt normal again, there was never a day free of pain or complications.

What did make me sad was how lonely he must have been during all of those hospital stays. It filled my soul rapidly while laying there and my eyes welled up with tears.

An administrative office employee came in to gather information from me while I awaited the results of the ultrasound. She asked me a series of questions and obtained all the information they needed from me. When I explained my situation (i.e. no medical insurance, a son with autism, unemployment, mortgage, three people counting on me) I also had tears streaming down my face. I felt bad for the woman because she felt awful.

Not a day goes by where I find myself regretting anything I fought for or did for my parents in the summer of 2009. It was as if I received cosmic signals as early as June that I needed to take the role of advocate and assume my old position as the 'voice of reason and calm' in my family.

Now that I have been able to empathize with my father, it is time for me to seek out some other therapeutic ways of coping with the experience. I think that I should observe my mother and her courage as she had been seeing a counselor to help her through the grief process.

So, as I mentioned above, I think it is important that people take some time AFTER the death of a loved one and find out what you're going to be doing to cope, what you are going to do to reason with this situation and last, accepting that it happened and that you cannot change it. What you can do is LIVE. Move forward knowing that it is your job to hold that spirit in your heart.

We'll see how this goes. I'll check back soon to let you know.

Departure

2009-07-23T10:20:00.000-07:00

I finally went to sleep around midnight.
I never seem to sleep deeply.
I was in the middle of a dream where I was at the beach with my family when my mother came into the guest room.

"Rob... I think things are not going well. I'm sorry to wake you but I think you should come out now."

It was 3:55AM.

I came in and my father was fading. At this point, he seems to be exhibiting all of the signs that were written in the book given to us by hospice.

His eyes were slightly open.
He was unresponsive.
His breathing was labored, as if he here a fish out of water. It seemed to occur every 1.5 seconds.
He did not look like he was in pain.

We sat on the couch, holding hands, and watched silently.

4:09AM arrived. His breathing intervals began decreasing. Each breath became more and more gentle and less 'fish out of water' like.

And then, at about 4:13AM the breathing stopped.

As I began to get up, he jolted slightly and it startled my mother and I. We could not help but find humor in that split second - like in the movies when a character dramatically dies and sits up for one last moment kind of thing.

He didn't move.

We watched him until about 4:17AM and did not see him breathing. We tried to feel his pulse, nothing. My mother then grabbed the blood pressure monitor and we tried to get a reading.

There was nothing.

He was gone.

His body was still, the life, the energy, the spirit and soul seemed to have departed from the vessel.

I sat with my mother. It hit her hard. The grief came in waves.

I remained so calm. I am still calm as of 10:48AM today.

I made my way to the kitchen and picked up the phone. I called Hospice and alerted them that it appeared he had passed away.

I called Jen. I told her. I miss her so terribly, again, as I did the previous weeks of being here and away from my heart's home.

I called my brother. He decided to come immediately.

After he arrived and processed his grief a little, we sat as a family around my father and filled long periods of silence with happy memories.

The hospice nurse arrived and pronounced him dead (officially). She and I worked to remove his T-shirt and replace it with a football jersey (San Jose State Spartans) a gift from one of his fraternity brothers. My parents lived, ate, and breathed football and this was their passion since graduating from San Jose State in the early 60's.

After my mother retreated to her bedroom, I went for a walk to the coffee shop to load up on caffeine.

After some phone calls to family and friends, my brother called to let me know they were there at the house to remove my father's body.

I walked back quickly and set my hand on his shoulder. I smiled. I saw him in my mind by the side of a creek with a fishing pole in hand and a roll of toilet paper in the other. There is a long story about that, but it brought an even bigger smile to my face.

I was relieved that his pain and suffering had ended.

Now I am immersed in phone calls, arrangements, restoring the house to its original condition...

I have a timeline and the clock is ticking.

I have to be at the airport in 5 hours. Wish me luck.

Checking out

2009-07-22T11:56:00.000-07:00

It's now Wednesday.

I did not sleep much last night.
My mind is filled with the endless list of things I need to do, things that need securing, plans needing to be made, phone calls to make, and on... and on... and on...

My Father's pain seems to have once again been met by the powers of serious meds. We have been given the green light to double the quantity of his base level pain meds.

He has been retreating. Food is becoming more of a burden than a desire or a treat. His weight is at an all time low. I am guessing we're at or below 100lbs, or I am getting stronger and able to lift him easier.

His voice changed before I arrived. It is an almost robotic mechanical sound now.

He coughs, but it isn't the kind of cough you or I are used to. This is a gentle cough because he simply does not have the energy. It is wet and I imagine his lungs are full of fluid.

I was nervous about leaving tomorrow, but I really have to balance between my family in Portland and my parents now. I have come to the realization that there simply isn't more that I could do. Everyone will have their own personal feelings about my departing and likely not being present when my Father does go, but then what other people think really does not matter to me in this particular case.

No one can interpret, experience, analyze what I have done. The conversations with my father, the words, emotions, feelings and concerns he shared with me - all of them are treasures that I will hold close to my soul for the rest of my days.

I really need to sleep. I really think I need to look into some pharmaceutical help with sleep once I get back home.

Back to the grind now. Phone calls, arrangements, rescuing the security my mother should feel and has earned.

Rock hunting

2009-07-21T16:44:00.000-07:00

One of the most miraculous things about spending this time with my father is the power of his brain.

At this point, he is accessing areas of the brain that have been on 'hold' for some time. Memories from his childhood, from my childhood, seem like they are just minutes old.

I recall last week the moment when my father was moving his hands while he was not very conscious. He had his hands in front of him and he mumbled "I want to cut this rock."

I leaned in and said "What rock are you talking about?"

He spoke, without opening his eyes, and smoothed one hand over an invisible rock held in is stationary hand and said "I found this rock and want to cut it so I can see the cross section of it."

He proceeded to go back into silence.

My father used to be a rock hound, a hunter of rocks and gems with his father. When I was a young child, before my grandfather passed, I remember looking forward to visiting the trailer park where they lived and having both my father and his father show me some of their amazing finds; poppy jasper, thunder eggs, the list was seemingly endless.

Today I returned to San Jose.

Like the previous times before, I received a call of some bad news. My father is deteriorating quickly.

He has not eaten today, as his throat is hurting more than ever before. He complained of having difficulty breathing, which is another step we knew would occur. He is on 5 litres of Oxygen up from his standard 2 and is still having difficulty.

His pain level spiked to a high level. Now we're at 10 on a scale of 1 to 10. This is new.

I had been in contact with my mother and with hospice and we tried a few adjustments in hopes of managing the pain better.

Then, this afternoon, the social worker from hospice said "You need to be a squeaky wheel."

This was all I needed to get the ball rolling and up the baseline pain medication. If by tomorrow he is feeling pain, we'll push for even more pain medication.

I was able to take some photos this afternoon. Living with an amazing photographer means that I feel a need to capture images in a way that shows what I might be seeing from my own perspective.

Pain management

2009-07-20T09:17:00.000-07:00

The weekend is over.
I have been home since last Thursday afternoon.

Family time, play time, weekend work, and a date night with my lovely Jenny.

Today is a mad scramble kind of day. I am having to catch up on important things I have neglected, we've got Sam in school, errands to run, a computer to get ready for me to take to San Jose, playtime with the family, more errands... It feels a little overwhelming.

My father's pain has been getting worse since I left. He is now suffering from the discomfort of constipation from the pain medication.

The increase of pain medication has made him retreat more; less lucidity, more unconcious deep sleep... drugged.

I checked in daily, on a few days twice. I was pleased to see that the 9 days I spent getting in-home care arranged seemed to go as well as I had hoped. My mother sounds relieved and is thankful.

Another challenge has appeared. Blood sugar levels, insulin, and just how difficult it is to keep him in a range that is 'safe'.

We'll see how that goes this week. I am only able to be there for a short visit this week.

Taking its toll

2009-07-13T08:20:00.000-07:00

The weekend arrived. My exhausion, combined with the emotional strain from missing my family is meddling with my ability to sleep.

I have been making an effort to step out and away. This is really important and I would offer this advice to anyone in this position. You need to have contact with people outside, be in the fresh air, to connect to humanity.

It would seem that my realization of needing to connect with humanity was like some kind of cosmic beacon sending out an S.O.S.

I began randomly running into people from my past.

The most amazing coincidental run-in was with my childhood best friend. We have lost touch for years and I have had him in my mind and heart many times over the years. It was on Saturday afternoon that I ran into him at a store in the old stomping grounds, the city where we grew up together.

I went to a party saturday afternoon and soaked up the positive loving energy from the group there. It was really what I needed to feel recharged.

The reality sets in...

2009-07-11T14:31:00.000-07:00

Hospice (n) - 1.) a lodging for travelers (especially one kept by a monastic order). 2.) a program of medical and emotional care for the terminally ill.

The reality of having my father at home sets in.

My mother and I attempt to take in the immensity of this task, as his caregivers.

I see in my mother fear and great anxiety. She is overwhelmed and I am too. The first night with him home found both she and I getting 3 to 4 hours of 'sleep' each.

We both know that there is no way in hell we're going to make this happen, even with relying on my physical and mental strength to assist. It has become very clear to me that I need to embark on a search for as much assistance possible.

The first few days were very challenging. Adjusting the pain medication was difficult. Managing his insulin and blood sugar was an even bigger challenge.

I am going to continue to make very honest and often blunt observations. If this alarms you please don't read what I am writing.

At this point, his body is beginning its gradual shutdown. The eyes are more glassy, becoming more sunken. His body weight continues to decrease, the muscles are beginning to tighten, and disappear. Fine motor skills are deteriorating. His arms twitch, slowly and in a jerking fashion. He will be completely unconscious to the point where we can barely get him to open his eyes and then in short order he's alert, awake, and lucid. The biggest challenge is that the ability to control waste output no longer exists.

More soon.

Home sweet home

2009-07-07T23:08:00.000-07:00

I had flown down yesterday from Portland. I went from the airport to the hospital to deliver the news to my father in person. I walked into his room and his eyes lit up like a kid on christmas morning. I said "Hey! What's up?"

He waved and greeted me. I then said "Dad... I am here to bring you home. I am here to make sure you get your warm glazed doughnut."

My Father said "I love you Rob. Thank you so much."

I spent some time with him until he drifted off to sleep. I then exited the hospital and walked. I had my small rolling suitcase with laptop case attached and just proceeded to walk through Mountain View.

Everything began looking different to me. The people driving in their cars, heading home from work, looking like aliens sealed in their own tiny environments.

I eventually found myself at an Irish Pub in downtown Mountain View, meeting with my dear friend Amy. It was a nice departure to be having a cold beer, some pub grub, and sitting across from an old friend, unloading a little bit of the baggage I had been carrying.

I got to sleep as soon as I could because I knew that there was much to do before we got him home.

I woke up early and got the furniture out of the living room. Mopped the floor, dusted, and prepped for the delivery of the hospital bed.

I was able to move the 100 pound television into place and got it functional. Now we were in business.

I drove to the hospital to oversee his discharge and load-up in the ambulance that was transporting him home. He was so happy, anxious, and most importantly... at peace. He had that doughnut on his mind.

We got him home. We set him up in the bed and he was watching the Giants baseball game a grin on his face from ear to ear.

As soon as he was set-up, we met with the Hospice Social Worker and then Intake Nurse. This was a four hour meeting.

To aid in my father's pain management, a heavy hitting arsenal of narcotics are on the roster; Dilaudid (for breakthrough pain), Methidone (to maintain a baseline).

I ran around trying to get two of the top requested foods and treats he was desiring:

1.) Warm glazed doughnut
2.) A soft beef taco

I served the doughnut on a plate, warmed per his instructions, with a towel over my forearm and posing as his waiter at a fine dining establishment.

Watching him eat the doughnut was one of the most enjoyable sights ever. Each bite of that sugary doughy delicacy was savored.

As the night progressed, we attempted to sleep. My mother was exhausted and she could not be on the couch near him. I sent her off to her bed and I will stay on the couch, I'll assume I will be awake for the most part.

Enough is enough

2009-07-07T16:00:00.000-07:00

I returned home on Wednesday, July 2nd.
I spent the weekend with my Family, tried to work, tried to focus on being home.

It wasn't working. I was not sleeping, was making Jen miserable, and felt like everything was out of sync.

Jen told me to fly back down and do what I need to do. I love her with all my heart and soul and she was the one voice I could hear, the voice of reason.

This day was the day when the frustrations ceased. While I was on the phone with a surgeon (who was explaining to me that there is no way to help my father, no way to 'fix' what is now happening) my father had enough energy and conciousness to pick up the phone in his hospital room and dial his home number. He reached my mother. He told her that he wants to come home now.

My mother said that she was silent for a bit. Then she said to him "Bob, do you understand that if you come home you will be coming home to die."

My father knew. He was done. He wanted to be at peace.

I spoke with my mother and got the green light to bring him home.

It was time... To head south.

2009-07-01T14:37:00.000-07:00

This particular week was long and chaotic.

I had known since my parent's Anniversary Party back on June 14th that my Father's time here was going to come to an end, very soon.

For the past 14 years we have been riding what feels like a roller coaster through each of his miraculous tales of survival. Each challenge seemed worse than the last; Esophageal Cancer, Quadruple Heart Bypass, Endemic Cardiomyopathy, Injury caused by falls, Diabetic comas, and Pneumonia...

From May to present of this year, my Father has had pneumonia 5 times. This was the first indication I had that something was finally standing in the way of this challenge.

After poking, prodding, testing, scanning, MRI, endoscopy after endoscopy, ultrasounds and more, they were able to determine that he was aspirating food and bile into his lungs.

I had decided over the previous weekend to fly to San Jose and to address some of the necessary things that we needed to now think about; Advanced Directive/DNR status, end of life wishes, estate issues, life insurance issues, all of the things that I have been entrusted to handle by my Father and Mother.

It was Monday, June 29th while waiting at the airport in Portland, Oregon I received a call from my brother. My mother had been admitted to the hospital for pneumonia.

Both of them, in the hospital, on the same floor but in separate rooms (thankfully).

I arrived and spent the next three days visiting both of them, giving my brother a break from taking care of the house, and trying to get my bearings on the direction I needed to be headed in.

By Wednesday I was able to take my mother home from the hospital.

I had to hop on a plane that evening and made another stop by the hospital to see my Dad.

At this point, he was more than pissed off about still being in the hospital. There are many reasons why he was continually subjected to more tests all of which I hope to cover in the next few days.

I realize that, by being very honest about my observations, I may be upsetting people that care about me. I feel that it is important to be really honest and to bring to light some of my own beliefs about a person's quality of life and suffering.

My father and I talked about his fears, his concerns about my Mother currently, and after he dies, and he spoke of his gratitude for my being there. He was scared and I think he knew that things were not looking good.

The last vision of my Father that afternoon became a recurring image in my mind. I had to walk away just as he was being wheeled away on a guerney to have a procedure performed.