Endless, same old thing...is this the reality of the movie "Groundhog Day"?
Unfortunately, we don't get to make the wrong things right. If the same thing happens again today that happened yesterday, and we do the "right thing", we have no guarantee the result will be any different.
We are in a waiting mode, and he is back where he was, 6 months ago, healthier (good thing), walking better, and for some reason - he feels the need to tell distorted truths about the quality of care he receives. He likes to make everyone think it is better than we see.
I can tell he is still suffering from some form of dementia, he doesn't think we see the truth, but it is evident to everyone.
So, all we can do is watch and wait.
She knows...and fortunately, she is doing better...
So we watch...
Another day... and another... and another...
Until we experience the next crisis.
It is quiet, and we are resting...
Tuesday, September 15, 2009
Saturday, September 12, 2009
I am awake...
We talked today. We do a lot of that lately.
So here it is Saturday night, 11 pm, and as usual, I feel like the only one in the world still awake.
It has been a long haul, and now - you appear to be improving...
or are you just learning to compensate at the new "benchmark", the new level?
You say you are doing better, but my brother and I both noticed the far away look in your eyes in still there.
Am I faithless?
She came in while we were there...
I have never met anyone with more of an emotional vacuum in my life. The joy, the happiness, the life of any moment seems to disappear upon her arrival.
And you try to disguise your situation with humor...
I am not sure I have ever seen her laugh.
Where will it end?
Will she be around?
For richer and poorer, for better or worse, in sickness and health...
Do these words matter?
Is she really going to be there for you?
You said your wife feels awkward because I have the medical power of attorney, while she is the one responsible for your medicine. You asked if I understand...
I said no.
How can I understand? She said she never loved you, that she never will, the only reason she married you 10+ years ago was becuse she could not afford to live on her own. I told you we are your family, and we are the ones that will care for you.
You are our father.
Please don't make this harder than it is...
Sometimes it feels like winter, and I can't remember the summer sun.
All I know is right now, and you can't seem to understand we are trying to help you.
I am tired...and the rest of the world is asleep while I watch out for you...
So here it is Saturday night, 11 pm, and as usual, I feel like the only one in the world still awake.
It has been a long haul, and now - you appear to be improving...
or are you just learning to compensate at the new "benchmark", the new level?
You say you are doing better, but my brother and I both noticed the far away look in your eyes in still there.
Am I faithless?
She came in while we were there...
I have never met anyone with more of an emotional vacuum in my life. The joy, the happiness, the life of any moment seems to disappear upon her arrival.
And you try to disguise your situation with humor...
I am not sure I have ever seen her laugh.
Where will it end?
Will she be around?
For richer and poorer, for better or worse, in sickness and health...
Do these words matter?
Is she really going to be there for you?
You said your wife feels awkward because I have the medical power of attorney, while she is the one responsible for your medicine. You asked if I understand...
I said no.
How can I understand? She said she never loved you, that she never will, the only reason she married you 10+ years ago was becuse she could not afford to live on her own. I told you we are your family, and we are the ones that will care for you.
You are our father.
Please don't make this harder than it is...
Sometimes it feels like winter, and I can't remember the summer sun.
All I know is right now, and you can't seem to understand we are trying to help you.
I am tired...and the rest of the world is asleep while I watch out for you...
Still Here
We had our struggles, I remember you literally "man-handling" me, in my teenage rage to keep me from running away. Then I remember you telling me you would spend every dime you had to find me if I ever left.
I stayed.
And the rage went away.
I remember you helping me pick up the pieces of my life, when all hell broke loose as a young man, you stepped in the gap when I needed it. When the tears flowed unendingly, you never left.
And the pain went away.
I remember you calling me when you were blind sided by the one you trusted more than life itself.
I stood in the gap, and though it cost all of us something that will never be replaced, we were strong. We wept in the darkness alone, as only men weep when they think they are alone. We held tight to our faith, that faith you passed to us.
And the loneliness went away.
I remember you standing so strong when you watched your own heritage fade, and you said goodbye to your history, and stepped up to be the next in line.
This time, the pain did not go away.
I am with you now, in your shoes as I help you through the hard days of today, and the harder ones before us.
I am not going away.
I stand with you, and when you can no longer stand, I will stand for you.
You taught me well, and I am not leaving.
I am still here.
I stayed.
And the rage went away.
I remember you helping me pick up the pieces of my life, when all hell broke loose as a young man, you stepped in the gap when I needed it. When the tears flowed unendingly, you never left.
And the pain went away.
I remember you calling me when you were blind sided by the one you trusted more than life itself.
I stood in the gap, and though it cost all of us something that will never be replaced, we were strong. We wept in the darkness alone, as only men weep when they think they are alone. We held tight to our faith, that faith you passed to us.
And the loneliness went away.
I remember you standing so strong when you watched your own heritage fade, and you said goodbye to your history, and stepped up to be the next in line.
This time, the pain did not go away.
I am with you now, in your shoes as I help you through the hard days of today, and the harder ones before us.
I am not going away.
I stand with you, and when you can no longer stand, I will stand for you.
You taught me well, and I am not leaving.
I am still here.
Monday, September 7, 2009
The Voyage
It feels like this old ship is sinking.
Just about the time we think we have everything under control, we realize all the treatments have little to no effect. I called you this morning and your loss of words has not improved. You seem to comprehend everything, but the ability to communicate is a lost art.
We will continue to address everything we can, but I think this is the stage called "Acceptance."
Not you, but me.
I am accepting this truly is bigger than me, and this ride of life has taken a detour I never anticipated.
I don't know what is easier - the sudden loss, or the gradual one.
This is selfish, but I feel like a part of me is going away with you.
I have always been my father's son, and when you are gone, it feels like that part of me will be gone also. Perhaps that is a part of the grieving - we are losing some of our own identity when we lose someone close to us.
I am not giving up, but sometimes it is hard - especially when your (not mine) wife is so negative, sees no hope, and complains ALL THE TIME about having to help you. She doesn't make it easy, and you have talked with me about how you can tell she does things out of obligation, rather than love. I know this is why you want to do all you can to be independent.
How strong you are to continue with your goodness, and not become bitter.
Perhaps this old ship is sinking.
A mighty vessel once, glorious in her day, master of all in sight. The scars are memories, imprinted deep within the hull, all the way to the heart. Memories of battles, of adventures, of a life lived to the fullest. Central America, Europe, Asia, the Caribbean, Alaska, and much of the United States, what great memories.
This old ship is struggling on that last trip home.
We gather around, the new fleet, escorting you home. There are newer, faster, and more advanced vessels, but none with your honor. This is not about us, it is about you.
As we approach the home port, and the welcome home begins, the skies will fill with wonderous celebration, the crowds and witnesses that went before you will cheer and welcome you home.
And we, your escorts, will fade away. Only you, and the majesty of your return home will be as joyful as your maiden voyage years ago.
Rest easy, your journey home has started.
Just about the time we think we have everything under control, we realize all the treatments have little to no effect. I called you this morning and your loss of words has not improved. You seem to comprehend everything, but the ability to communicate is a lost art.
We will continue to address everything we can, but I think this is the stage called "Acceptance."
Not you, but me.
I am accepting this truly is bigger than me, and this ride of life has taken a detour I never anticipated.
I don't know what is easier - the sudden loss, or the gradual one.
This is selfish, but I feel like a part of me is going away with you.
I have always been my father's son, and when you are gone, it feels like that part of me will be gone also. Perhaps that is a part of the grieving - we are losing some of our own identity when we lose someone close to us.
I am not giving up, but sometimes it is hard - especially when your (not mine) wife is so negative, sees no hope, and complains ALL THE TIME about having to help you. She doesn't make it easy, and you have talked with me about how you can tell she does things out of obligation, rather than love. I know this is why you want to do all you can to be independent.
How strong you are to continue with your goodness, and not become bitter.
Perhaps this old ship is sinking.
A mighty vessel once, glorious in her day, master of all in sight. The scars are memories, imprinted deep within the hull, all the way to the heart. Memories of battles, of adventures, of a life lived to the fullest. Central America, Europe, Asia, the Caribbean, Alaska, and much of the United States, what great memories.
This old ship is struggling on that last trip home.
We gather around, the new fleet, escorting you home. There are newer, faster, and more advanced vessels, but none with your honor. This is not about us, it is about you.
As we approach the home port, and the welcome home begins, the skies will fill with wonderous celebration, the crowds and witnesses that went before you will cheer and welcome you home.
And we, your escorts, will fade away. Only you, and the majesty of your return home will be as joyful as your maiden voyage years ago.
Rest easy, your journey home has started.
Saturday, September 5, 2009
Almost Normal
My father had another short stay in the hospital, he came home today.
His ammonia level went from 324 to 100 to 57 to 87, and since it is lower, and hopefully staying lower (new meds...how long will they work?), he was released.
The doctor said she believes he has encephalopathy from the cirrhosis, she said this may be his new "benchmark."
We talk a lot, most conversations take 2 to 3 times longer than normal, he really has a hard time sometimes finding the words. I have stopped filling in the blanks for him. I just let him work with it as long as he wants to.
Not much to say today...it is Saturday...
I wonder how long before the next trip to the hospital...
For some reason I can't get this one picture of my father out of my head. It was the night before he went to VietNam, we were already asleep, and my Dad, being the stereo buff he has always been, had his headphones on, and was listening to music. He was facing the wall, had his chin resting in one hand. I don't think he knew my mother took the picture...she caught him in one of the few moments when tears were visible...
I always wondered what he was thinking...
In 1970, after he returned from VietNam, he had his first issue with his liver. He was hospitalized for 64 days, his liver was enlarged almost 3 times the normal size. He was in incredible pain, and nothing seemed to help. We never knew it then, but now he said he thinks this is from exposure to Agent Orange or worse.
While in the hospital, he had a liver biopsy, and was supposed to stay very still to avoid internal bleeding.
Being the stubborn man he is, he got up to go to the bathroom.
He felt himself passing out, and the staff found him on the floor in the bathroom, and of course - he was bleeding internally.
He told us he thought he was dying, and the thought in his mind was one of complete confidence he was entering eternity the right way. No fear.
Wow.
That confidence, that faith, is hard to find.
That was almost 40 years ago.
His faith is stronger, although his belief in himself is weaker.
He knows the God that created the universe is with him and keeps him safe, but he said sometimes he feels like he has failed. He never became a rich man, or a powerful man, his sons have struggled, he felt his impact was miniscule.
What a lie.
His love of math and science is in his 3 sons, one in engineering, another in construction, and another with medical. His pursuit of his faith - all 3 sons and families share his faith. His love of travel, of history, has also been passed on.
His kind, gentle spirit, is within us. I remember flying one of my many trips from somewhere home, and I always sat next to someone that needed encouragement. The two I remember most is the lady flying to Texas to visit her son on death row. What do you say? All I could think of was to share the good news, to encourage HER, to be a Christian at THAT MOMENT, and listen to her.
The other was a man that had just found out his wife had cancer.
I shared my own experience with my wife and her battle.
In both times, I told them both the story of how in my hardest time in life, how I read Isaiah 43:1 and realized we are not alone.
It was hard to listen to someone's sad story. It was harder to relive mine, and encourage them through this. They said thank you, and I hoped they were stronger for the challenge ahead.
I knew something real had happened, as I never forgot those moments, and I felt drained, like I had given a part of myself away.
I notice my Father talks about feeling drained a lot lately. Perhaps he is giving of himself more than before.
He told me once, if a person could spend one day in God's presence, just how different they would be. We got into a discussion about what was the least amount of time needed to spend in God's presenceto change a person. One day became one hour. One hour became one minute. One minute became one second. One second became the speed of thought - a "twinkling"...
Less than a breath, less than a look, just a glance, something so fast you cannot measure it...
That is all it takes to be changed....
How changed are we that have spent a lifetime with someone so close to God?
It is Saturday, my Father is home for now, and life is ALMOST normal...
His ammonia level went from 324 to 100 to 57 to 87, and since it is lower, and hopefully staying lower (new meds...how long will they work?), he was released.
The doctor said she believes he has encephalopathy from the cirrhosis, she said this may be his new "benchmark."
We talk a lot, most conversations take 2 to 3 times longer than normal, he really has a hard time sometimes finding the words. I have stopped filling in the blanks for him. I just let him work with it as long as he wants to.
Not much to say today...it is Saturday...
I wonder how long before the next trip to the hospital...
For some reason I can't get this one picture of my father out of my head. It was the night before he went to VietNam, we were already asleep, and my Dad, being the stereo buff he has always been, had his headphones on, and was listening to music. He was facing the wall, had his chin resting in one hand. I don't think he knew my mother took the picture...she caught him in one of the few moments when tears were visible...
I always wondered what he was thinking...
In 1970, after he returned from VietNam, he had his first issue with his liver. He was hospitalized for 64 days, his liver was enlarged almost 3 times the normal size. He was in incredible pain, and nothing seemed to help. We never knew it then, but now he said he thinks this is from exposure to Agent Orange or worse.
While in the hospital, he had a liver biopsy, and was supposed to stay very still to avoid internal bleeding.
Being the stubborn man he is, he got up to go to the bathroom.
He felt himself passing out, and the staff found him on the floor in the bathroom, and of course - he was bleeding internally.
He told us he thought he was dying, and the thought in his mind was one of complete confidence he was entering eternity the right way. No fear.
Wow.
That confidence, that faith, is hard to find.
That was almost 40 years ago.
His faith is stronger, although his belief in himself is weaker.
He knows the God that created the universe is with him and keeps him safe, but he said sometimes he feels like he has failed. He never became a rich man, or a powerful man, his sons have struggled, he felt his impact was miniscule.
What a lie.
His love of math and science is in his 3 sons, one in engineering, another in construction, and another with medical. His pursuit of his faith - all 3 sons and families share his faith. His love of travel, of history, has also been passed on.
His kind, gentle spirit, is within us. I remember flying one of my many trips from somewhere home, and I always sat next to someone that needed encouragement. The two I remember most is the lady flying to Texas to visit her son on death row. What do you say? All I could think of was to share the good news, to encourage HER, to be a Christian at THAT MOMENT, and listen to her.
The other was a man that had just found out his wife had cancer.
I shared my own experience with my wife and her battle.
In both times, I told them both the story of how in my hardest time in life, how I read Isaiah 43:1 and realized we are not alone.
It was hard to listen to someone's sad story. It was harder to relive mine, and encourage them through this. They said thank you, and I hoped they were stronger for the challenge ahead.
I knew something real had happened, as I never forgot those moments, and I felt drained, like I had given a part of myself away.
I notice my Father talks about feeling drained a lot lately. Perhaps he is giving of himself more than before.
He told me once, if a person could spend one day in God's presence, just how different they would be. We got into a discussion about what was the least amount of time needed to spend in God's presenceto change a person. One day became one hour. One hour became one minute. One minute became one second. One second became the speed of thought - a "twinkling"...
Less than a breath, less than a look, just a glance, something so fast you cannot measure it...
That is all it takes to be changed....
How changed are we that have spent a lifetime with someone so close to God?
It is Saturday, my Father is home for now, and life is ALMOST normal...
Thursday, September 3, 2009
20%
My father is in the hospital. He did not want to go, but he is changing, he sits and sleeps alot, and expresses little interest in the things he once lived for.
We talked a little last night, he was telling me the things he wanted to do "if he lived"...
I told him he was a good father, and I was really glad he was there to teach me the things I know, and that he has a great legacy - his children carry his faith, his grandchildren and even his great grandchildren. I told him he was a successful man...
He said he really appreciated hearing that. He said the night before had been a hard one, that he felt about as low as you can feel. I told him that was not true, that he is a great man, and we all love him and are fighting for him.
Today, I talked with my cousin - she told me how heart broken the family is over his illness. She, her mother (his sister) and her daughter (his great niece) are all really upset.
She said she is glad I am here to care for him.
My wife and I are going to see him tonight - this has been an incredible amount of hospital stays for my Dad.
I am tired...
Last night, my Dad said he was not happy with the care I was giving him, that he thought I was interrupting the doctor's plan. I told him he was right - I did interrupt the doctor. I wanted him in the hospital getting some answers to his problems - getting a diagnosis - not waiting for the VA to send some data that will never arrive! I also told him I could not live with myself if I did not do everything I could for him, and until he says "enough", I will not give up.
He settled down.
I told him I was doing for him, like he did for his father.
He told me he understood, and he appreciated it.
Sometimes this makes me wonder if I will have someone caring for me in this manner...
Can't think about that now - too much to do.
I am still tired...
It is getting harder to feel much anymore, I find myself starting to shut doors on my emotions, I feel like I can't waste time with my feelings right now, I havetoo much at stake, he has too much at stake...and I can't let him down.
My dad taught me long ago, one night in those late night drives from nowhere to home, that family means giving your all for the ones you love. I was 4 years old, and he tried to explain it in a way I would understand...
He said, "If you were hungry and I was hungry, and all I had was enough money for one hamburger, I would buy it and give it to you."
For some reason, that always stuck with me.
Take care of your loved ones first.
Well, Dad bought the hamburgers for a long time, and now it is my turn.
Sometimes I feel like I am driving an ambulance or an old wagon on a trail, trying to get him to the doctor as quickly as I can...and the mush we are driving through is slowing us down.
Time is something we do not have. 80% of people in his condition die.
But 20% live!
Let's go for it...20% is not a bad option...
1 in 5 - this is not the first time we beat the odds.
I wish I could say something encouraging...but it still feels like I am running in the dark...
We talked a little last night, he was telling me the things he wanted to do "if he lived"...
I told him he was a good father, and I was really glad he was there to teach me the things I know, and that he has a great legacy - his children carry his faith, his grandchildren and even his great grandchildren. I told him he was a successful man...
He said he really appreciated hearing that. He said the night before had been a hard one, that he felt about as low as you can feel. I told him that was not true, that he is a great man, and we all love him and are fighting for him.
Today, I talked with my cousin - she told me how heart broken the family is over his illness. She, her mother (his sister) and her daughter (his great niece) are all really upset.
She said she is glad I am here to care for him.
My wife and I are going to see him tonight - this has been an incredible amount of hospital stays for my Dad.
I am tired...
Last night, my Dad said he was not happy with the care I was giving him, that he thought I was interrupting the doctor's plan. I told him he was right - I did interrupt the doctor. I wanted him in the hospital getting some answers to his problems - getting a diagnosis - not waiting for the VA to send some data that will never arrive! I also told him I could not live with myself if I did not do everything I could for him, and until he says "enough", I will not give up.
He settled down.
I told him I was doing for him, like he did for his father.
He told me he understood, and he appreciated it.
Sometimes this makes me wonder if I will have someone caring for me in this manner...
Can't think about that now - too much to do.
I am still tired...
It is getting harder to feel much anymore, I find myself starting to shut doors on my emotions, I feel like I can't waste time with my feelings right now, I havetoo much at stake, he has too much at stake...and I can't let him down.
My dad taught me long ago, one night in those late night drives from nowhere to home, that family means giving your all for the ones you love. I was 4 years old, and he tried to explain it in a way I would understand...
He said, "If you were hungry and I was hungry, and all I had was enough money for one hamburger, I would buy it and give it to you."
For some reason, that always stuck with me.
Take care of your loved ones first.
Well, Dad bought the hamburgers for a long time, and now it is my turn.
Sometimes I feel like I am driving an ambulance or an old wagon on a trail, trying to get him to the doctor as quickly as I can...and the mush we are driving through is slowing us down.
Time is something we do not have. 80% of people in his condition die.
But 20% live!
Let's go for it...20% is not a bad option...
1 in 5 - this is not the first time we beat the odds.
I wish I could say something encouraging...but it still feels like I am running in the dark...
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