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.
Saturday, July 11, 2009
Tuesday, July 7, 2009
Home sweet home
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.
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
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.
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.
Wednesday, July 1, 2009
It was time... To head south.
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.
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.
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