So it's a bitter sweet to be heading home in the morning. I want to go home, I need to go home, but leaving here leaves behind a past that I will not be able to get back. If or when I come back to Fairbanks, it's not to see my dad. He's not here anymore. I think some day, I want to come back to Alaska and seek the adventures that so many think this place is about. For me, the last few years have been about spending time with my dad and nothing more.
Going though his photos and documents, my dad really has done and seen a lot in his life. He was born in Niagara Falls, NY and moved to Arizona at the age of 7. He started working at a very young age, 12, 13, or 14 to help support his family. When he was 19, he went to Vietnam. When he came home, he skydived, obtained his pilot license, married my mom, and had me. In 1974 or 75 he moved to Alaska to work. He had his truck and $1,000 with him. He worked on the Alaska Pipeline, he moved back to Arizona for a few years, then back to Alaska. He flew his airplane around the United States. He has always told me he lived a good life and has no regrets. Over the last few years, he went back to Vietnam and spent time in China.
That is all for tonight... I miss you dad!
Saturday, July 30, 2011
6 days later
Everything is pretty much taken care of. I have his ashes {Feng has half, I have half}. I have photos, documents, the things that he showed me year after year and told me stories about. I will come home with 3 bags and 1 personal bag. All of my father. I will come home with a heart half whole. Last night, I fell asleep about 5 pm. I woke up at 6:15, went to have a pedicure and was asleep again around 10. I slept til about 12:30 PM (yes, over 12 hours). I've gotten up a few times today but I feel weak. I feel like I can't move. I feel empty and sad. My body shakes to get up. It's finally hitting me and I'm ready to go home.
The last two nights, I've had dreams. They haven't been good dreams, they are the dreams were you scream at people, you take your anger out. The first had Ethel in it and I probably cannot say on the internet what I was doing in the dream but it wasn't nice. Then I turned and my dad was there, I didn't see his face though but it was him. He just hugged me and told me it would be ok. Last night I had a dream about Feng. That her and I were fighting over things and it was just crazy. We made up in my dream. I am lucky that she is the person she is because I believe she and I want the best of each other and to make each other happy during this time. I think my dad would be happy with how our friendship has been. I feel guilty though because in the beginning, I just went and went to get everything taken care of. Now, I just want to be alone to grieve. Both are opposite of her culture. She wants to grieve, then take care of things. She has been very good with understanding that because I'm only here for awhile, we needed to get this stuff taken care of.
6 days later though, as I said, most everything is taken care of. The other things can wait or will be processed in time. I need to plan a service, that will be in Arizona but I'm not in a hurry. My dad hated the heat and August is like hell there. Maybe we'll have it in Sept so people can plan to attend and have enough time to get everything in order. Now, it's just time to go home, climb in bed, and wait a week until I go back to work. Until life starts again. For now though, I miss my dad with every part of my being.
The last two nights, I've had dreams. They haven't been good dreams, they are the dreams were you scream at people, you take your anger out. The first had Ethel in it and I probably cannot say on the internet what I was doing in the dream but it wasn't nice. Then I turned and my dad was there, I didn't see his face though but it was him. He just hugged me and told me it would be ok. Last night I had a dream about Feng. That her and I were fighting over things and it was just crazy. We made up in my dream. I am lucky that she is the person she is because I believe she and I want the best of each other and to make each other happy during this time. I think my dad would be happy with how our friendship has been. I feel guilty though because in the beginning, I just went and went to get everything taken care of. Now, I just want to be alone to grieve. Both are opposite of her culture. She wants to grieve, then take care of things. She has been very good with understanding that because I'm only here for awhile, we needed to get this stuff taken care of.
6 days later though, as I said, most everything is taken care of. The other things can wait or will be processed in time. I need to plan a service, that will be in Arizona but I'm not in a hurry. My dad hated the heat and August is like hell there. Maybe we'll have it in Sept so people can plan to attend and have enough time to get everything in order. Now, it's just time to go home, climb in bed, and wait a week until I go back to work. Until life starts again. For now though, I miss my dad with every part of my being.
Day 3 - remembering back
I wanted to journal this daily so it was fresh in my mind. It's been 6 days since my dad has been gone. My heart is sadder and sadder every day.
The last day his circulation got worse. We increased his morphine. The nurse told me at one point it was going up to 76 ml per hour; however, it went back to 24 ml per hour (max). One doctor would let me push the 'green button' to give him the 'shot' of morphine (4 ml per shot) and another doctor would not. Apparently it's illegal and the only person who can push it is the patient. When the patient is basically in a coma, how the heck do they expect that to happen. I realize it's all for legalities but when you have your father's best interest and know his wishes, I just don't agree. I know my dad, believe it or not, and there is no way he would have even wanted to live as long as he did the way he was.
The last 2 days, he was peaceful. I don't think he was in any pain at all. I was thankful for that. I know he would have rather of died at home, but where he was was the best place for him. In Fairbanks, they do not have hospice like we do in Arizona where a bed and round the clock nurses can be. The nurses at the hospital were amazing though. They were supportive, caring, compassionate, and understanding. I am very thankful for them.
The last day, I stayed by my dad's side as much as possible. I held his hand, I cuddled next to him and slept. I told him over and over it was ok to go. I told him to go with Grandma, to take her hand and go. That we'd be ok. I told him over and over how much I loved him and that I would I miss him so much but I know in my heart he will always be with me. That I am him, just as he once said. That I'm strong and will be ok.
There was a point in the evening that my dad stopped breathing for a long time, maybe like a minute but probably less, it just felt like forever. Feng thought he had died but I had my hand on his chest and could feel his heart beating. He began breathing again. I got up out of my chair and my cousin sat down in the chair next to him. I think panic set in because I knew she wanted time next to him as well. I would leave the room, come back in, leave the room, come back in. I went out to the nurse, Heather, and we finished paperwork that would need to be filled out once he passed away. At that point, another nurse came by and asked the last time he had been repositioned. It had been awhile so they decided to do it again. The three of us went into the room.
Everyone moved away from the bed, some went out of the room. I know Feng had left the room a bit earlier and went to the visiting room and cried. I helped the nurses reposition him and we put pillows under his feet to avoid bed sores. {He had started getting two spots, one on each foot}. My cousin went to sit back down in 'my' chair and I asked if she'd switch sides with me because it was the side I was comfortable cuddling with. She agreed. As I went to climb back into the chair, the other nurse who was helping very quietly called Heather's name. I looked at her face and knew. I looked at my father, he was not breathing. I quickly put my hand on his chest and there was not heartbeat. I buried my face into his neck, against his face, and cried. I told him over and over how much I loved him.
Heather listened for a heartbeat, she touched my shoulder and said "I'm sorry". Another nurse came in to pronounce him, it was about 10:20 pm on Sunday, July 24, 2011.
Someone went to get Feng, she came in hysterical. I couldn't handle it and had to get out of the room for a bit, I wanted to be alone, I wanted to call my mom. I grabbed my phone, left the room, and dialed my mom. She was asleep but said when she heard the phone ring, she knew. I had gone into the vistor's room and laid on the couch/bench they had. I must have stayed there for about 30 minutes, on the phone with my mom, crying. I also wanted to give everyone a chance to say good-bye to my dad. I wanted to be alone with him and curl up next to him and hold his hand one last time.
I finally went back into the room. I think it was only Pisano and I in the room, maybe my cousin as well. I don't remember. I just remember I curled back up next to him and cried. I played music, "Can't Help Falling in Love", because he used to sing that song to me. I played "What a Wonderful World" because we danced to that song at my wedding.
I remember going out of his room again, Feng's boys, Yu and Yan had come into the room to say good-bye again. I went and sat in the waiting room with Pisano, held comforted me. We talked, that my dad was in a better place and because I needed to hear it from him, I asked him if my dad loved me. He laughed and said that was a silly question. I explained that the last few years had been hard and how I felt so I just needed him to tell me. He said yes, he loved you. He said my dad was unique and made decisions that we may not have agreed with but that is what made my dad who he was. I agreed.
I had to sign some paperwork though at some point. I remember Feng kept asking what we needed to do. I told her to just go home and take care of herself, that everything had been taken care of. This I would recommend to anyone in this situation. Fill out as much paperwork as you can prior to your loved one dying. Once he or she passes, the last thing you'll want to do is sit down and figure everything out. From there, I went back into his room and cuddled again. His body was getting colder and colder. Pisano finally told me I could not stay forever, which I knew was true. So I said my goodbye and left.
I felt relieved that my dad had died because I did not want him to stay the way he was. I knew he wouldn't want it either. My heart just breaks though. I miss him so very much. Now that it's been 6 days, I feel like the pain is getting worse, things are setting in. The realization he is gone is there. Today, my heart really hurts and I do not want to get out of bed. I just want to sleep, I am exhausted. I miss my dad, I want my dad here, I need my dad.
The last day his circulation got worse. We increased his morphine. The nurse told me at one point it was going up to 76 ml per hour; however, it went back to 24 ml per hour (max). One doctor would let me push the 'green button' to give him the 'shot' of morphine (4 ml per shot) and another doctor would not. Apparently it's illegal and the only person who can push it is the patient. When the patient is basically in a coma, how the heck do they expect that to happen. I realize it's all for legalities but when you have your father's best interest and know his wishes, I just don't agree. I know my dad, believe it or not, and there is no way he would have even wanted to live as long as he did the way he was.
The last 2 days, he was peaceful. I don't think he was in any pain at all. I was thankful for that. I know he would have rather of died at home, but where he was was the best place for him. In Fairbanks, they do not have hospice like we do in Arizona where a bed and round the clock nurses can be. The nurses at the hospital were amazing though. They were supportive, caring, compassionate, and understanding. I am very thankful for them.
The last day, I stayed by my dad's side as much as possible. I held his hand, I cuddled next to him and slept. I told him over and over it was ok to go. I told him to go with Grandma, to take her hand and go. That we'd be ok. I told him over and over how much I loved him and that I would I miss him so much but I know in my heart he will always be with me. That I am him, just as he once said. That I'm strong and will be ok.
There was a point in the evening that my dad stopped breathing for a long time, maybe like a minute but probably less, it just felt like forever. Feng thought he had died but I had my hand on his chest and could feel his heart beating. He began breathing again. I got up out of my chair and my cousin sat down in the chair next to him. I think panic set in because I knew she wanted time next to him as well. I would leave the room, come back in, leave the room, come back in. I went out to the nurse, Heather, and we finished paperwork that would need to be filled out once he passed away. At that point, another nurse came by and asked the last time he had been repositioned. It had been awhile so they decided to do it again. The three of us went into the room.
Everyone moved away from the bed, some went out of the room. I know Feng had left the room a bit earlier and went to the visiting room and cried. I helped the nurses reposition him and we put pillows under his feet to avoid bed sores. {He had started getting two spots, one on each foot}. My cousin went to sit back down in 'my' chair and I asked if she'd switch sides with me because it was the side I was comfortable cuddling with. She agreed. As I went to climb back into the chair, the other nurse who was helping very quietly called Heather's name. I looked at her face and knew. I looked at my father, he was not breathing. I quickly put my hand on his chest and there was not heartbeat. I buried my face into his neck, against his face, and cried. I told him over and over how much I loved him.
Heather listened for a heartbeat, she touched my shoulder and said "I'm sorry". Another nurse came in to pronounce him, it was about 10:20 pm on Sunday, July 24, 2011.
Someone went to get Feng, she came in hysterical. I couldn't handle it and had to get out of the room for a bit, I wanted to be alone, I wanted to call my mom. I grabbed my phone, left the room, and dialed my mom. She was asleep but said when she heard the phone ring, she knew. I had gone into the vistor's room and laid on the couch/bench they had. I must have stayed there for about 30 minutes, on the phone with my mom, crying. I also wanted to give everyone a chance to say good-bye to my dad. I wanted to be alone with him and curl up next to him and hold his hand one last time.
I finally went back into the room. I think it was only Pisano and I in the room, maybe my cousin as well. I don't remember. I just remember I curled back up next to him and cried. I played music, "Can't Help Falling in Love", because he used to sing that song to me. I played "What a Wonderful World" because we danced to that song at my wedding.
I remember going out of his room again, Feng's boys, Yu and Yan had come into the room to say good-bye again. I went and sat in the waiting room with Pisano, held comforted me. We talked, that my dad was in a better place and because I needed to hear it from him, I asked him if my dad loved me. He laughed and said that was a silly question. I explained that the last few years had been hard and how I felt so I just needed him to tell me. He said yes, he loved you. He said my dad was unique and made decisions that we may not have agreed with but that is what made my dad who he was. I agreed.
I had to sign some paperwork though at some point. I remember Feng kept asking what we needed to do. I told her to just go home and take care of herself, that everything had been taken care of. This I would recommend to anyone in this situation. Fill out as much paperwork as you can prior to your loved one dying. Once he or she passes, the last thing you'll want to do is sit down and figure everything out. From there, I went back into his room and cuddled again. His body was getting colder and colder. Pisano finally told me I could not stay forever, which I knew was true. So I said my goodbye and left.
I felt relieved that my dad had died because I did not want him to stay the way he was. I knew he wouldn't want it either. My heart just breaks though. I miss him so very much. Now that it's been 6 days, I feel like the pain is getting worse, things are setting in. The realization he is gone is there. Today, my heart really hurts and I do not want to get out of bed. I just want to sleep, I am exhausted. I miss my dad, I want my dad here, I need my dad.
Saturday, July 23, 2011
Day 2
Last night was rough. My dad has sleep apnea and has a hard time breathing laying down anyway. So it made his breathing extremely raspy and I thought that he may not make it through the night. His oxygen level was down to 65 as well. He was pale, his lips, and finger tips were blue. I slept almost all night; however, I would wake up to make sure he was still alive. That is a horrible feeling. There was one time that I did wake up and I couldn't hear him breathing, his hand was so hot, and I thought he had passed away. Then I heard him breathe.
At about 8 am this morning, I had my back turned toward the door. When I turned around, Pisano was standing there. My heart just filled with comfort, a man who has known my dad for most of his life. A man that, even though I have not spend hours and hours with him, is a man I know would be there for me, just as my own father. Pisano was in Vietnam with my dad. They have remained amazingly great friends ever since. Within 24 hours of my call to Pisano, he booked a flight to come see my dad. For that, I am forever greatful. My dad has always told me that if there is anything I ever need, to call Pisano and he will be there for me. Because I am my father's daughter and that is what they do for each other.
When Pisano went to my dad's side, he spoke to him and I really believe my dad was responding to him. Pisano already has an appointment with the VA on Tuesday to get clarification on services and burial/cremation benefits for us.
I found out later that Amber, my cousin, was 3 hours south of Fairbanks and would be on her way as well. It was nice to know I would have family around as well. Throughout the day, there was not much change. They took him off oxygen because it was only prolonging his life and I did not want that. The nurses worked with me to protect Feng from feeling guilty of anything. In her culture, they bring the person home to care for him or her, prolonging life, until the person passes away. Obviously in our culture, most would rather die than live a life that is not really who s/he is.
My dad is a fighter and me started to sleep peacefully. He made it through the night and into day 3.
At about 8 am this morning, I had my back turned toward the door. When I turned around, Pisano was standing there. My heart just filled with comfort, a man who has known my dad for most of his life. A man that, even though I have not spend hours and hours with him, is a man I know would be there for me, just as my own father. Pisano was in Vietnam with my dad. They have remained amazingly great friends ever since. Within 24 hours of my call to Pisano, he booked a flight to come see my dad. For that, I am forever greatful. My dad has always told me that if there is anything I ever need, to call Pisano and he will be there for me. Because I am my father's daughter and that is what they do for each other.
When Pisano went to my dad's side, he spoke to him and I really believe my dad was responding to him. Pisano already has an appointment with the VA on Tuesday to get clarification on services and burial/cremation benefits for us.
I found out later that Amber, my cousin, was 3 hours south of Fairbanks and would be on her way as well. It was nice to know I would have family around as well. Throughout the day, there was not much change. They took him off oxygen because it was only prolonging his life and I did not want that. The nurses worked with me to protect Feng from feeling guilty of anything. In her culture, they bring the person home to care for him or her, prolonging life, until the person passes away. Obviously in our culture, most would rather die than live a life that is not really who s/he is.
My dad is a fighter and me started to sleep peacefully. He made it through the night and into day 3.
Friday, July 22, 2011
day 1
I arrived in Fairbanks at about 1:45 am on Friday, June 22. Feng's boys picked me up and we went straight to the hospital. Let me back up by saying Thursday was a tough day and by the time my flight left, I splet from PHX to SEA and SEA to FAI. Anyways, I got to the hospital and he was in bed, sleeping. He is snoring so he's in a deep sleep. He's hooked up to morphine and gets an anxiety med for when he gets restless. For the most part, he seems to be pain free. When the nurses move him from side to side, he tends to get aggitated and it seems somewhat painful for him. That is when he gives himself a shot of morphine. Yeah....seriously, these laws are freaking RIDICULOUS! {no worries, he can do it cuz I make sure he is able to}.
Every couple of hours he opens his eyes and tries to lift his body up. I hold his hand, kiss his forhead, and tell him to relax, it is going to be ok. His face is starting to look a little more pale this afternoon. His blood pressure was low, blood sugar was not quite under 50 but close. This morning it was more like 70. His oxygen {levels or something like that} were about 70 (that was this evening). I hope this means he is coming closer to the end. Not that I want him to die but I don't want him to lay here this way for weeks on ends. His legs are not swollen, but his hands are now. The veins in his right arm are not working for the iv. So the IV has been moved to his left arm. The nurses have been amazing! I wish the staff on now could stay here until I leave.
Tonight, a priest came in and said a prayer for him. I told him we wanted to wait on his last rights (is that the name of the prayer)? He said it was simlar. He also mentione that he was an ex-Marine and that he was honored to be here with dad. He said that dad was a true American hero. I could not be more porud of my dad!!!
So for now, though we wait and keep him confortable.
Every couple of hours he opens his eyes and tries to lift his body up. I hold his hand, kiss his forhead, and tell him to relax, it is going to be ok. His face is starting to look a little more pale this afternoon. His blood pressure was low, blood sugar was not quite under 50 but close. This morning it was more like 70. His oxygen {levels or something like that} were about 70 (that was this evening). I hope this means he is coming closer to the end. Not that I want him to die but I don't want him to lay here this way for weeks on ends. His legs are not swollen, but his hands are now. The veins in his right arm are not working for the iv. So the IV has been moved to his left arm. The nurses have been amazing! I wish the staff on now could stay here until I leave.
Tonight, a priest came in and said a prayer for him. I told him we wanted to wait on his last rights (is that the name of the prayer)? He said it was simlar. He also mentione that he was an ex-Marine and that he was honored to be here with dad. He said that dad was a true American hero. I could not be more porud of my dad!!!
So for now, though we wait and keep him confortable.
Tuesday, July 19, 2011
the grief cycle, is numb first?
i can't describe how i feel right now. the only word is numb. you know, the feeling when you just can't feel, can't talk, and stare like you have no idea what is going on? that is how i feel.
someone told me "i think your dad's situation is affecting you more than you know". yeah, it is. last i checked he was dying and i think that means there is a part of me that will die too.
tonight, i got the call. a call from a doctor, an intensivist. do you know what that is? he's a doctor in the ICU unit. i relate to him as the last doctor that paula had, before she died. to me, an intensivist is not good. and tonight, he called me.
tonight, he told me that my dad was being admitted back into the hospital. that he sat down with feng to decide what to do with my dad. feng said she cannot take care of him at home. the only facility that he can go to is in anchorage, this is something my dad would not want, me either. they discussed putting him in a hospice bed. they discussed my dad's wishes that his life not be prolonged. they discussed giving him morphine to keep him comfortable. he {the doctor} told me 4-16 days.
i called feng. i told her i would fly out tomorrow. she told me that had asked the doctor to call me, to explain my dad's situation. she said the doctor needs a decision by tomorrow. i'm confused. i thought we had a decision. she told me she does not think my dad will die tomorrow or the next day or even next week. again, i am confused. i talked to feng again. she feels guilty. she does not want him to die. i feel bad for her. i feel bad for me. i tell her she did everything she could. i tell her he would not want to live this way. i tell her i will tell the doctor to let him die, because i know that is what my dad would want me to do. i love my dad.
i called the hospital back to speak with the doctor. the doctor called me again. we discussed what was best for my dad. i leave in 48 hours. i told him when i get there, i will not leave the hospital. he said that is fine. normally they do not allow people overnight but this is an exception. i said good because i wouldn't leave no matter what. i am leaving to spend the last few days with my dad. to say goodbye. to tell him over and over how much i love him. to tell him that through it all, he was a great dad. he is a dad i am proud to call my father. i do not want my dad to live like this. i can't handle seeing him this way. a man who is strong, a man, who the doctor asked me 'was he a marine, he looks like one'. yes, he was a marine. the doctor said, 'he's a strong man and if it wasn't for his liver failing, he would be healthy'.
so right now, i think i hate the world but i do not feel anger yet. i know it will come. i know all the emotions that will come. why? because i've been though this before when paula died but this time, it's not my best friend, someone who was like my sister, this time it's my father. the man i leaned on and looked up to. the man i loved unconditionally. the man that i always tried to make proud of me. the man i would talk to on the phone as a little girl and would tell him i loved him more. he would return that with i love you more. and so it would go on.
please keep him and me and feng in your prayers. that is all for now.
someone told me "i think your dad's situation is affecting you more than you know". yeah, it is. last i checked he was dying and i think that means there is a part of me that will die too.
tonight, i got the call. a call from a doctor, an intensivist. do you know what that is? he's a doctor in the ICU unit. i relate to him as the last doctor that paula had, before she died. to me, an intensivist is not good. and tonight, he called me.
tonight, he told me that my dad was being admitted back into the hospital. that he sat down with feng to decide what to do with my dad. feng said she cannot take care of him at home. the only facility that he can go to is in anchorage, this is something my dad would not want, me either. they discussed putting him in a hospice bed. they discussed my dad's wishes that his life not be prolonged. they discussed giving him morphine to keep him comfortable. he {the doctor} told me 4-16 days.
i called feng. i told her i would fly out tomorrow. she told me that had asked the doctor to call me, to explain my dad's situation. she said the doctor needs a decision by tomorrow. i'm confused. i thought we had a decision. she told me she does not think my dad will die tomorrow or the next day or even next week. again, i am confused. i talked to feng again. she feels guilty. she does not want him to die. i feel bad for her. i feel bad for me. i tell her she did everything she could. i tell her he would not want to live this way. i tell her i will tell the doctor to let him die, because i know that is what my dad would want me to do. i love my dad.
i called the hospital back to speak with the doctor. the doctor called me again. we discussed what was best for my dad. i leave in 48 hours. i told him when i get there, i will not leave the hospital. he said that is fine. normally they do not allow people overnight but this is an exception. i said good because i wouldn't leave no matter what. i am leaving to spend the last few days with my dad. to say goodbye. to tell him over and over how much i love him. to tell him that through it all, he was a great dad. he is a dad i am proud to call my father. i do not want my dad to live like this. i can't handle seeing him this way. a man who is strong, a man, who the doctor asked me 'was he a marine, he looks like one'. yes, he was a marine. the doctor said, 'he's a strong man and if it wasn't for his liver failing, he would be healthy'.
so right now, i think i hate the world but i do not feel anger yet. i know it will come. i know all the emotions that will come. why? because i've been though this before when paula died but this time, it's not my best friend, someone who was like my sister, this time it's my father. the man i leaned on and looked up to. the man i loved unconditionally. the man that i always tried to make proud of me. the man i would talk to on the phone as a little girl and would tell him i loved him more. he would return that with i love you more. and so it would go on.
please keep him and me and feng in your prayers. that is all for now.
Thursday, July 14, 2011
Phone calls
My phone calls to my dad can be comical or sad. I guess it depends on how you look at it or what kind of mind frame I am in.
I'm sitting on the phone right now with my dad. He told me he loved me. I asked if he loved me a little or a lot and he said a lot. Then, I asked if he was proud of me and he said yes. Then, he just disappeared. He didn't hang up the phone because I can hear background noise. I can only assume the phone is in his lap and he's just sitting there, maybe asleep. I'm laughing, making noises, whistling, trying to get Lynkin to bark, anything to get his attention. So, he comes back to the phone, I say "Dad", he says "I can't hear you now" then he's gone again....
Tonight I can smile. I love this man so much. {I just heard him say 'oooooh'} so the phone must be sitting near him. And you know what, I will take every moment I can, just listening to the background noise near him because one day, I won't be able to have this. So I'm going to soak up every moment I can with my dad, even if he doesn't say anything at all.
I'm sitting on the phone right now with my dad. He told me he loved me. I asked if he loved me a little or a lot and he said a lot. Then, I asked if he was proud of me and he said yes. Then, he just disappeared. He didn't hang up the phone because I can hear background noise. I can only assume the phone is in his lap and he's just sitting there, maybe asleep. I'm laughing, making noises, whistling, trying to get Lynkin to bark, anything to get his attention. So, he comes back to the phone, I say "Dad", he says "I can't hear you now" then he's gone again....
Tonight I can smile. I love this man so much. {I just heard him say 'oooooh'} so the phone must be sitting near him. And you know what, I will take every moment I can, just listening to the background noise near him because one day, I won't be able to have this. So I'm going to soak up every moment I can with my dad, even if he doesn't say anything at all.
Wednesday, July 13, 2011
encephalopathy
I don't even know where to begin to pronounce the word... nor do I care to. It is what my dad has now. I researched when my dad was confused and I came across this word many times. So I knew it was a chance and I thought I was prepared. What really can prepare you... to know your dad's mind is fading. He's 63 years old, so you don't really concern yourself with your parent showing signs of a brain malfunction. Basically, because his liver is failing, his body does not release the toxins and they form in the blood. This eventually leads to the impairment of the brain. I should state there are different types of encephalopathy, my dad has hepatic encephalopathy. The symptoms include, sleeping during the day (reversal of the normal sleep pattern), irritability, inability to concentrate or perform calculations, loss of memory, confusion, and eventually causes coma and death (information from medicinenet.com)
I found this out today. After I spoke with the neurologist. I then went back into my meeting, to concentrate but couldn't. After work, I stayed to look up that e word and the above is what I found. I sat there, numb. I was prepared, I knew that he probably wouldn't go back to "normal", that his mind would stay in this unclear state. I cried.
As I read through the symptoms though, I realize that 3 years ago, even more, my dad slept more during the day than at night. His sleep patterns were always sporadic, because of PTSD. I just figured that was why he was awake all night and slept during the day. Why didn't I realize this back then! Maybe he already knew that he was in the beginning stages of E. As for irritability, I remember back to the end of my bachelor's degree program... spring of 2008, my dad started acting different. One night, he got completely upset with me because he called while I was in the middle of a team paper and I was totally stressed out. I asked him if I could call back the next night and he just lost it. I remember thinking, what the heck is wrong! He even called my mom telling her there was something wrong with me. He was crying. Was this a sign? I knew back then something was wrong but I thought... honestly thought, that maybe his doctor had told him he was dying and he wasn't telling me. But now, I think that it was this E word... it had started to affect him. My dad never shared with me what was going on with him. This... this explains so much if what I think, back in 2008 was the beginning of hepatic encephalopathy.
So what happens now? It sounds like it will just get worse. Eventually, from my readings, he will go into a coma, then death. This disease is horrid. I did not think that there was a worse way to die than dying from cancer but cirrhosis is just as bad. Please, please, please... keep my dad in your prayers. For comfort, for peace. I love him so very, very much.
I found this out today. After I spoke with the neurologist. I then went back into my meeting, to concentrate but couldn't. After work, I stayed to look up that e word and the above is what I found. I sat there, numb. I was prepared, I knew that he probably wouldn't go back to "normal", that his mind would stay in this unclear state. I cried.
As I read through the symptoms though, I realize that 3 years ago, even more, my dad slept more during the day than at night. His sleep patterns were always sporadic, because of PTSD. I just figured that was why he was awake all night and slept during the day. Why didn't I realize this back then! Maybe he already knew that he was in the beginning stages of E. As for irritability, I remember back to the end of my bachelor's degree program... spring of 2008, my dad started acting different. One night, he got completely upset with me because he called while I was in the middle of a team paper and I was totally stressed out. I asked him if I could call back the next night and he just lost it. I remember thinking, what the heck is wrong! He even called my mom telling her there was something wrong with me. He was crying. Was this a sign? I knew back then something was wrong but I thought... honestly thought, that maybe his doctor had told him he was dying and he wasn't telling me. But now, I think that it was this E word... it had started to affect him. My dad never shared with me what was going on with him. This... this explains so much if what I think, back in 2008 was the beginning of hepatic encephalopathy.
So what happens now? It sounds like it will just get worse. Eventually, from my readings, he will go into a coma, then death. This disease is horrid. I did not think that there was a worse way to die than dying from cancer but cirrhosis is just as bad. Please, please, please... keep my dad in your prayers. For comfort, for peace. I love him so very, very much.
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