kind and gentle logic to the rescue
Before, I forget, Happy Birthday JBro. I hope you celebrate in some fashion tonight...I love you, little brother.
***
Lynn, the social worker from MD Anderson who we met with last week finally got back to me (she was on vacation). Fortunately, she's also an RN and I fielded my moral and ethical issues concerning withholding food. She took the time to explain a few things in clear, calm, logital terms that really put me at ease (and also noted the VITAS nurse's comminucation flaws). We do have to withhold food from him and this is why:
-at this point, because the cancer has taken over his body, nourishment would only feed the tumors. By stopping nourishment, the expanding tumors will also stop growing
-chocking is a hazard of course, but dying from choking to death is much more painful and traumatic for the patient and family
-a worse scenario would be if he aspirated and ended up with pnemonia, which again is a slow belaboured death
-if he cannot swallow, he's lost a lot of sensation and muscle control in his abdominal region. his need to eat is more a psychological instinct than a reaction to hunger pangs. Imposed anorexia actually causes any sensation of hunger to disappear
-after dehydration and starvation, ample doses of morphine, fentanyl, and ativan he'll eventually pass out or go into a comatose state from being so exhausted and should not feel any suffering (but she warned me that it may take a couple of weeks)
That last bit still upsets me a tiny bit (why can't we just put him down?) but I am very thankful that Lynn could explain this all to me. I just wish the VITAS people were more willing or had the capabilities to elaborate like that.
Last night I was in a completely different state of mind. I wasn't even able to finish my blog post, but it started like this:
I've been sitting in front of this laptop for the past hour or so with my chin in hand feeling numb and confused. The instant hazelnut coffee sitting next to me has long grown cold and yet I can't seem to peel myself off the chair to warm it up. I suppose I too am in a state of shock at what all has happened in the last week...the last two days.... It's almost too much to take in and I can't seem to find a way to describe my thoughts in a linear or any organized manner. Even the events themselves don't seem to make sense chronologically. I've been here for just barely a week and yet, it feels like months. The past 72 hours crawled along like 100 year old molasses despite all the action and emotional strife that has gone on.
"If he cannot swallow, he cannot eat. He'll choke to death. Do not feed him. Do not give him anything to drink." This is what last nurse told me in front of my dad and my mother a few hours ago. The absurdity of the first two sentences still brings hot tears to my eyes. When asked if he was hungry, my dad has nodded "yes." Why would anyone ever deny a dying person food if the only real risk was death itself? That question screamed in my head over and over again. I felt like passing out. It was a moral dilemma. What to do? I had to witness my mother looking so defeated and confused holding a cup of mashed watermelon, spoon in hand staring at the nurse in bewilderment. The image of my dad's pleading eyes and agitated brow is now burned into my mind forever. I can still hear his frightening coughs and wheezes after the last attempt to feed him. All in the name of comfort is what hospice chimes but at what cost? How is this ethical?
I am so utterly aware of the act of swallowing now. Every time I do it, I think of my dad. I try to reflect on the choir of muscles that have to work together to make it work--the throat, the soft palatte, the tongue. I turn myself mad thinking just how frustrating it has to be to feel hungry but unable to eat. ...
I have a calmer mindset now.
I already lost my dad on Monday and when I say my dad, I mean my dad as a whole: spirit intact, bad attitude and all. I'm sure of that now. Ever since then he just started splintering. He was whole enough to feel depressed on Wednesday. He was emotionally mistreated on Thursday. Friday he stopped speaking and couldn't walk or move without assistance. Saturday his breathing became belabored and he soiled himself for the first time. Today he lost the ability to swallow and stopped making eye contact with my mother. And tomorrow? What kills me is that he's still mentally sound. His mind is completely clear and his hearing is still sharp. You ask him what the derivative of natural log x is and he mouths the answer. His ability to communicate, although completely silent, is never subtle: a grimace, a nod, a shake... glassy eyes that suddenly become alert when one of his children walked into the room then fade away when he hears the words 'I love you' or roll in annoyance when a nurse he doesn't like walks into the room. Sometimes his brows become furrowed when he's agitated. As many times I've prayed to God to take him as soon as possibly, his failing body just does not want to hand over his mind.
***
Lynn, the social worker from MD Anderson who we met with last week finally got back to me (she was on vacation). Fortunately, she's also an RN and I fielded my moral and ethical issues concerning withholding food. She took the time to explain a few things in clear, calm, logital terms that really put me at ease (and also noted the VITAS nurse's comminucation flaws). We do have to withhold food from him and this is why:
-at this point, because the cancer has taken over his body, nourishment would only feed the tumors. By stopping nourishment, the expanding tumors will also stop growing
-chocking is a hazard of course, but dying from choking to death is much more painful and traumatic for the patient and family
-a worse scenario would be if he aspirated and ended up with pnemonia, which again is a slow belaboured death
-if he cannot swallow, he's lost a lot of sensation and muscle control in his abdominal region. his need to eat is more a psychological instinct than a reaction to hunger pangs. Imposed anorexia actually causes any sensation of hunger to disappear
-after dehydration and starvation, ample doses of morphine, fentanyl, and ativan he'll eventually pass out or go into a comatose state from being so exhausted and should not feel any suffering (but she warned me that it may take a couple of weeks)
That last bit still upsets me a tiny bit (why can't we just put him down?) but I am very thankful that Lynn could explain this all to me. I just wish the VITAS people were more willing or had the capabilities to elaborate like that.
Last night I was in a completely different state of mind. I wasn't even able to finish my blog post, but it started like this:
I've been sitting in front of this laptop for the past hour or so with my chin in hand feeling numb and confused. The instant hazelnut coffee sitting next to me has long grown cold and yet I can't seem to peel myself off the chair to warm it up. I suppose I too am in a state of shock at what all has happened in the last week...the last two days.... It's almost too much to take in and I can't seem to find a way to describe my thoughts in a linear or any organized manner. Even the events themselves don't seem to make sense chronologically. I've been here for just barely a week and yet, it feels like months. The past 72 hours crawled along like 100 year old molasses despite all the action and emotional strife that has gone on.
"If he cannot swallow, he cannot eat. He'll choke to death. Do not feed him. Do not give him anything to drink." This is what last nurse told me in front of my dad and my mother a few hours ago. The absurdity of the first two sentences still brings hot tears to my eyes. When asked if he was hungry, my dad has nodded "yes." Why would anyone ever deny a dying person food if the only real risk was death itself? That question screamed in my head over and over again. I felt like passing out. It was a moral dilemma. What to do? I had to witness my mother looking so defeated and confused holding a cup of mashed watermelon, spoon in hand staring at the nurse in bewilderment. The image of my dad's pleading eyes and agitated brow is now burned into my mind forever. I can still hear his frightening coughs and wheezes after the last attempt to feed him. All in the name of comfort is what hospice chimes but at what cost? How is this ethical?
I am so utterly aware of the act of swallowing now. Every time I do it, I think of my dad. I try to reflect on the choir of muscles that have to work together to make it work--the throat, the soft palatte, the tongue. I turn myself mad thinking just how frustrating it has to be to feel hungry but unable to eat. ...
I have a calmer mindset now.
I already lost my dad on Monday and when I say my dad, I mean my dad as a whole: spirit intact, bad attitude and all. I'm sure of that now. Ever since then he just started splintering. He was whole enough to feel depressed on Wednesday. He was emotionally mistreated on Thursday. Friday he stopped speaking and couldn't walk or move without assistance. Saturday his breathing became belabored and he soiled himself for the first time. Today he lost the ability to swallow and stopped making eye contact with my mother. And tomorrow? What kills me is that he's still mentally sound. His mind is completely clear and his hearing is still sharp. You ask him what the derivative of natural log x is and he mouths the answer. His ability to communicate, although completely silent, is never subtle: a grimace, a nod, a shake... glassy eyes that suddenly become alert when one of his children walked into the room then fade away when he hears the words 'I love you' or roll in annoyance when a nurse he doesn't like walks into the room. Sometimes his brows become furrowed when he's agitated. As many times I've prayed to God to take him as soon as possibly, his failing body just does not want to hand over his mind.
Labels: cancer, death, family, hospice, MD Anderson
posted by cchang at 12:31 PM
8 Comments:
is travis still there? how are you?
(and i know, you're not good, but i hope you're hanging in there okay.)
I'm fine. I'm calm now and just waiting for him to join God (in whatever form he believes). I'm really not sad, just worn out and tired. Worried about impending administrative stuff (christ, the amount of paper work so far has been astounding).
BTW, Travis goes home tomorrow. He's helped tons. My mom and I love him even more than we thought possible, but he needs to go back to work.
I know you're posting this publicly, but I feel a little strange reading this private family stuff -- I suppose because I don't know you in real life. Sorry your family is having these difficult times. I will say a prayer for God's support, and probably stop visiting here for a while, as you work through these heartbreaking events. Not out of indifference, but out of respect. If that makes any sense. May you all find peace and comfort.
No offense taken TVK. I'm sorry I wasn't able to warn you of the upcoming posts as I did with some of my family and friends. I don't think many members of my family even read these posts because they're too difficult to stomach. I'm sure many people disapprove as well, but no one close to me minds, including my dad, my mom and husband. I continue write out of convenience since many people ask how things are going and it also cuts down on the annoying number of phone calls.... It's their choice whether or not they want to read...hence, there's no apology necessary for saying you can't read this blog!
Take care, TVK. Life goes on and the podcasts and Cindy recipes will continue to come. :)
Cindy, wish I could just float by and give you a hand whenever you needed it. Just know I'm thinking about you and sympathizing with you as a sister who has been through this myself. It's some of the most important work we do in our lives. You're doing fine--keep writing, your writing has become transcendent--it's beautiful, it's healing, it's powerful. My love to you and your family.
Thanks Claudia. We're nearing the end now and really, the difficult parts (at least emotionally) are over. I'm definitely not looking forward to some of the administrative stuff though.
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