Today, I finally got up the nerve to open the box containing my grandmother's ashes. The ashes had been sent to me by my uncle in a very large package that has been sitting on my bookshelf for about a month, maybe more.
Today, I looked at the box that obtrusively stuck out from the edge of the bookshelf into the living room. I said, "Sweetie, I think I'm ready to open the box." She had to run out urgently, but promised to be back as soon as she could. I told her I'd wait until she came back. I didn't want to open the box while I was alone.
Once she got back, I pulled out the Exacto knife and started running it along the edges of tape around the box. I carefully pulled back the lid and cautiously removed the styrofoam packing material.
The smaller box inside is also made out of cardboard. This surprised me, as my mother-in-law's dog's ashes had come to her in a plastic box. I commented on how cheap the cardboard box seemed. Sweetie said it was because they expect me to buy an urn.
I won't be buying an urn. I have contacted Best Friends Animal Sanctuary in Utah and will be taking her remains (or cremains, as they called them) there. They have been incredibly supportive, offering to help with a service if we want to do one. I chose this place for several reasons.
1) My grandmother was a life-long animal lover. I think she liked animals more than she liked people. She was also an assertive advocate for animal rights.
2) My grandmother introduced me to Best Friends.
3) The cemetary at Best Friends is beautiful.
4) My grandmother was one of my best friends.
I am even happier with this decision having gotten such a warm response from the staff at Best Friends. I'm not sure when we'll take her. I'll be sure to let family know in case anyone wants to join us. Utah is pretty far for my family to travel, but it's a gorgeous part of the country, so who knows.
In the meantime, this smaller box sits back where the larger box had been. I feel like there has been an emotional shift that has happened concurrently. My grandmother becomes less and less a solid being of this earth and more and more of a warm place in my heart that will always be with me.
Tuesday, April 26, 2005
Monday, April 25, 2005
On "Withdrawing" Treatment/Care
In a blog that I respect a lot, I recently came across an old post discussing "withdrawing treatment." I wanted to use that reminder to comment on linguistics a bit.
I hope we will shift away from using the terminology "withdrawing" care or treatment. When people decide to discontinue aggressive curative measures and to begin focusing on the large tasks of end of life, we are not "withdrawing care." Instead, we are shifting the goals of care. Health care providers continue to provide care even when we are letting natural death occur.
We are not even withdrawing treatment; we are still treating symptoms. Our goal is to keep patients comfortable. Instead of trying to cure disease (often times at the expense of comfort), we are aggressively controlling symptoms such as pain and nausea.
Putting effort into changing this terminology within medical culture as providers will ultimately help families, patients and our colleagues make this shift, too. Some doctors use the statement, "There is nothing more that we can do" when telling patients and families that there are no more curative options for their particular disease. This sends a message of "giving up," anticipated abandonment by their health care providers, and a lack of hope.
Contrary to that common statement, there is always more that we can do. There is always something we can hope for - a peaceful death, being comfortable, dying somewhere we feel safe, making ammends with our loved ones. And as we are helping patients to reach these goals, we are providing care.
I hope we will shift away from using the terminology "withdrawing" care or treatment. When people decide to discontinue aggressive curative measures and to begin focusing on the large tasks of end of life, we are not "withdrawing care." Instead, we are shifting the goals of care. Health care providers continue to provide care even when we are letting natural death occur.
We are not even withdrawing treatment; we are still treating symptoms. Our goal is to keep patients comfortable. Instead of trying to cure disease (often times at the expense of comfort), we are aggressively controlling symptoms such as pain and nausea.
Putting effort into changing this terminology within medical culture as providers will ultimately help families, patients and our colleagues make this shift, too. Some doctors use the statement, "There is nothing more that we can do" when telling patients and families that there are no more curative options for their particular disease. This sends a message of "giving up," anticipated abandonment by their health care providers, and a lack of hope.
Contrary to that common statement, there is always more that we can do. There is always something we can hope for - a peaceful death, being comfortable, dying somewhere we feel safe, making ammends with our loved ones. And as we are helping patients to reach these goals, we are providing care.
Saturday, April 23, 2005
Book Blessing: Tuesdays with Morrie
Believe it or not, I had not yet read this 1997 best seller. Yes, I'd heard how great it was in a generic sense, but no one had told me what it was about.
I came across this book among my grandmother's things still knowing nothing more than the title. And still ignorant, I began reading it while at my aunt's bedside. At that point, I think it took me about one page to realize this book by Mitch Albom was about death and dying.
Although I was probably the last person on earth to read this book and thus there is little need for a review, I decided to write one anyway. Perhaps it'll remind you of a few of the gems in this documentary or perhaps... I was the second-to-last person on earth to have read it. ;-)
Mitch Albom had been living a life focused on his successful career, but he questionnned his values when he renewed his friendship with his former professor, Morrie Schwratz. At the time of their reunion, Morrie had already begun a physical decline from a terminal illness, ALS or Lou Gehrig’s disease.
I really grew to like Morrie as a person throughout Mitch’s descriptions of their interactions and their conversations. And we had a few surprising things in common.
“He was a religious mutt, which made him even more open to the students he taught over the years. And the things he was saying in his final months on earth seemed to transcend all religious differences. Death has a way of doing that.”
As I’ve written before, I feel my own non-categorical spiritual beliefs enable me to reach out comfortably to patients and family members facing death of all religious practices.
So many pieces of the book reminded me of my relationship with my aunt who recently passed on April 11th. Though we definitely did not have nearly as many frank discussions about death as Mitch and Morrie did, there was a similar feeling of intimacy in the conversations we had about life and in the time I spent at her bedside before she died.
Throughout this book, Morrie offers us wisdom from his perspective as he knowingly approaches his own death. He encourages us to prepare for our own death, stating, “Once you learn how to die, you learn how to live.” He suggests we live each day as if we have a bird on our shoulder that asks us if we are ready to die. Doing so, will help us to keep perspective on whether or not we are doing everything we need to and being the people who we really want to be.
He also covered areas I had not given much thought to before, such as the concept of detachment.
He exhaled. “You know what the Buddhists say? Don’t cling to things, because everything is impermanent.”
But wait, I said. Aren’t you always talking about experiencing life? All the good emotions, all the bad ones?
“Yes.”
Well, how can you do that if you’re detached?
“Ah. You’re thinking, Mitch. But detachment doesn’t mean you don’t let the experience penetrate you. On the contrary, you let it penetrate you fully. That’s how you are able to leave it... If I hold back on the emotions – if you don’t allow yourself to go all the way through them – you can never get to being detached; you’re too busy being afraid. You’re afraid of the pain, you’re afraid of the grief. You’re afraid of the vulnerability that loving entails. But by throwing yourself into these emotions, by allowing yourself to dive in, all the way, over your head even, you experience them fully and completely. You know what pain is. You know what love is. You know what grief is. And only then can you say, “all right. I have experienced that emotion. I recognize that emotion. Now I need to detach from that emotion for a moment.”
My friends and family are often concerned because I seem "so sensitive.” I grieved openly over my grandmother’s death. I talked openly about how sad I was. But throughout that time, their alarm seemed so unnecessary. I was hurting, true. But now I feel at so much more peace. This “going through the emotions” makes sense to me. Though I am still struggling with what he meant by “detachment.”
I probably picked up different aspects of this book than others due to the fact that I was actively grieving as I read it. I will definitely want to read it again when the acuteness of my grief - over both my aunt's recent death and my grandmother's death the month before - is even more distant.
But in my grief, this book has been both inspiring and comforting.
“Death ends a life, not a relationship.” – Morrie Schwartz
NOTE: I am intentionally not providing a link to any of the on-line bookstores, because I would prefer you to support your local independent bookstore. To order on-line from the independent bookstore nearest you, please check out Book Sense.
I came across this book among my grandmother's things still knowing nothing more than the title. And still ignorant, I began reading it while at my aunt's bedside. At that point, I think it took me about one page to realize this book by Mitch Albom was about death and dying.
Although I was probably the last person on earth to read this book and thus there is little need for a review, I decided to write one anyway. Perhaps it'll remind you of a few of the gems in this documentary or perhaps... I was the second-to-last person on earth to have read it. ;-)
Mitch Albom had been living a life focused on his successful career, but he questionnned his values when he renewed his friendship with his former professor, Morrie Schwratz. At the time of their reunion, Morrie had already begun a physical decline from a terminal illness, ALS or Lou Gehrig’s disease.
I really grew to like Morrie as a person throughout Mitch’s descriptions of their interactions and their conversations. And we had a few surprising things in common.
“He was a religious mutt, which made him even more open to the students he taught over the years. And the things he was saying in his final months on earth seemed to transcend all religious differences. Death has a way of doing that.”
As I’ve written before, I feel my own non-categorical spiritual beliefs enable me to reach out comfortably to patients and family members facing death of all religious practices.
So many pieces of the book reminded me of my relationship with my aunt who recently passed on April 11th. Though we definitely did not have nearly as many frank discussions about death as Mitch and Morrie did, there was a similar feeling of intimacy in the conversations we had about life and in the time I spent at her bedside before she died.
Throughout this book, Morrie offers us wisdom from his perspective as he knowingly approaches his own death. He encourages us to prepare for our own death, stating, “Once you learn how to die, you learn how to live.” He suggests we live each day as if we have a bird on our shoulder that asks us if we are ready to die. Doing so, will help us to keep perspective on whether or not we are doing everything we need to and being the people who we really want to be.
He also covered areas I had not given much thought to before, such as the concept of detachment.
He exhaled. “You know what the Buddhists say? Don’t cling to things, because everything is impermanent.”
But wait, I said. Aren’t you always talking about experiencing life? All the good emotions, all the bad ones?
“Yes.”
Well, how can you do that if you’re detached?
“Ah. You’re thinking, Mitch. But detachment doesn’t mean you don’t let the experience penetrate you. On the contrary, you let it penetrate you fully. That’s how you are able to leave it... If I hold back on the emotions – if you don’t allow yourself to go all the way through them – you can never get to being detached; you’re too busy being afraid. You’re afraid of the pain, you’re afraid of the grief. You’re afraid of the vulnerability that loving entails. But by throwing yourself into these emotions, by allowing yourself to dive in, all the way, over your head even, you experience them fully and completely. You know what pain is. You know what love is. You know what grief is. And only then can you say, “all right. I have experienced that emotion. I recognize that emotion. Now I need to detach from that emotion for a moment.”
My friends and family are often concerned because I seem "so sensitive.” I grieved openly over my grandmother’s death. I talked openly about how sad I was. But throughout that time, their alarm seemed so unnecessary. I was hurting, true. But now I feel at so much more peace. This “going through the emotions” makes sense to me. Though I am still struggling with what he meant by “detachment.”
I probably picked up different aspects of this book than others due to the fact that I was actively grieving as I read it. I will definitely want to read it again when the acuteness of my grief - over both my aunt's recent death and my grandmother's death the month before - is even more distant.
But in my grief, this book has been both inspiring and comforting.
“Death ends a life, not a relationship.” – Morrie Schwartz
NOTE: I am intentionally not providing a link to any of the on-line bookstores, because I would prefer you to support your local independent bookstore. To order on-line from the independent bookstore nearest you, please check out Book Sense.
Thursday, April 21, 2005
The Best Day of Your Life
When did you have the best day of your life?
Mine is happening today.
I was still tired when my alarm woke me up. I played around on the internet for awhile before dragging my dog off to the laundromat to acccompany me as I did the laundry (No, I'm not being sarcastic about this being the best day of my life).
On my way back in, I checked the mail and found a sympathy card from my mother. Enclosed in the envelope was a photo of my grandmother's dancing trophies (of which she had many). When we went through my grandmdother's belongings I'd been quite torn about her trophies. What should we do with them? I certainly didn't have room for them, but they were a part of her, sitting on a shelf in each of her successive homes. When I got home after the memoriaal, I'd regretted that I hadn't taken a photo of the trophies as a reminder of them. The thoughtfulness (and luck) that my mom both had this photo and sent it to me warmed my heart immensely.
But this is still not why today has been the best day of my life.
Today is the best day of my life.
But tomorrow it won't be. I will then say the same thing - Today is the best day of my life. But then it won't be today, it will be tomorrow.
Are you catching on?
All I have is today. We've all heard the saying - Yesterday is gone and tomorrow is yet to come. But have we really heard it? Death, as always, reminds me of how fortunate I am to have today. And I don't wish or want for anything more.
Mine is happening today.
I was still tired when my alarm woke me up. I played around on the internet for awhile before dragging my dog off to the laundromat to acccompany me as I did the laundry (No, I'm not being sarcastic about this being the best day of my life).
On my way back in, I checked the mail and found a sympathy card from my mother. Enclosed in the envelope was a photo of my grandmother's dancing trophies (of which she had many). When we went through my grandmdother's belongings I'd been quite torn about her trophies. What should we do with them? I certainly didn't have room for them, but they were a part of her, sitting on a shelf in each of her successive homes. When I got home after the memoriaal, I'd regretted that I hadn't taken a photo of the trophies as a reminder of them. The thoughtfulness (and luck) that my mom both had this photo and sent it to me warmed my heart immensely.
But this is still not why today has been the best day of my life.
Today is the best day of my life.
But tomorrow it won't be. I will then say the same thing - Today is the best day of my life. But then it won't be today, it will be tomorrow.
Are you catching on?
All I have is today. We've all heard the saying - Yesterday is gone and tomorrow is yet to come. But have we really heard it? Death, as always, reminds me of how fortunate I am to have today. And I don't wish or want for anything more.
Wednesday, April 20, 2005
Know Your Code Status
What is code status?
Anyone admitted to the hospital has a code status. It tells us what you want to have done if you suddenly stop breathing or your heart stops beating (what is referred to in hospitals as a "code blue"). Kind of like everyone is innocent until proven guilty - everyone is assumed to be a full-code unless we're told otherwise. It is not the same as an advanced directive. A code status only provides very basic information; it does not address the finer points of whether or not you'd want a feeding tube or to be left breathing dependently on a respirator for years.
Full-code: This means you want us to do everything and anything humanly and technologically possible to keep you alive.
DNR/DNI: why isn't it called "Allow natural death?" DO NOT resucitate. DO NOT intubate. Those words are so negative. But in the case of someone who is terminally ill, natural death is much more peaceful and beautiful than having a tube thrust down your throat, ribs broken during the chest compressions of CPR, and electrical shocks shooting through your body during defibrillation.
Are there other options with "codes"?
Anyone can pick and choose between each act that may be performed during a code. Some people may want to be intubated if they have a sense they may die from difficullty breathing, but feel they would want to live even if they had to be on a respirator, at least temporarily. Some people may be aware that they have very little time left and would thus prefer to die naturally rather than gain a few extra days spent uncomfortably on a respirator, unable to talk.
What are the different components of a code?
Before going into the components, I want to acknowledge a few points. I think it is very important for medicine to be demystified, so that the general public can make informed decisions about their health. But I don't want individuals to get totally caught up in the fine details. I am making this information avaiable and as easily comprehensible as possible. But if you are terminally ill, please do not get so caught up in contemplating each component of a code status that you don't do what is most important - live now - and attend to the more important decisions, questions such as - how are my relationships with my loved ones? That said, here are some of the details that may or may not be necessary should you stop breathing or your heart stop beating:
-CPR - this link provides a nice and brief summary of the pros and cons of going through CPR (which can include chest compressions and/or having air blown into your lungs artificially using a bag or machine or as in the case of community CPR, someone breathing into your mouth)
-vasopressors and antiarrhythmics are medications that go through your veins to get your heart to return to a regular rhythm. These are the least invasive of the measures used in a code, so simultaneously the most likely options patients consider keeping when not wanting to forego all of the "heroic measures" of a code.
-intubation is when a tube is inserted through your mouth into your trachea to provide an open airway so you can breathe. Oxygen is usually administered through the tube, as well as gaseous medication or anesthetics. You re not able to speak when you are intubated. And usually you remain intubated until it is believed you can maintain your own airway and breathe on your own (usually days). Unfortunately, sometimes people are intubated and placed on respirators and are not ever able to breathe on their own again. This is when family are faced with the tremendously difficult task of deciding whether or not to turn off the respirator.
-tracheostomy is when a temporary or permanent hole is cut into your throat (trachea or windpipe) through which you then breathe
-defibrillation is when an electric shock is sent to your heart to return it to a normal rhythm. Defibrillators are now part of standard CPR training and the devices exist in many public places such as airports. So if your heart stops beating in an airport, where they will not know your code status, you will likely undergo defibrillation.
-transcutaneous pacemaker is when pads are applied to your chest that send electrical impulses that keep your heart beating in a regular rhythm
-pacemaker via transvenous/epicardial wire is when a wire is inserted through your vein and into your heart to keep your heart beaating in a regular rhythm
-chest tube may be inserted through your rib cage or back to drain blood, air or fluid from around your lungs
Is DNR/DNI the same as hospice or palliative care?
No. Code status does not address the plan for your care. You can receive a full armory of treatments to cure or halt the progression of your disease while having a DNR/DNI code status. Again, this simply tells us - if you stop breathing or your heart stops beating, what you want us to do.
Do you need to be a DNR/DNI in order to enroll in hospice or palliative care?
Definitely not for palliative care. The code status requirements for hospices vary among each facility. If you are interested in hospice, but are not ready to forego heroic measures if you stop breathing or your heart stops beating tomorrow, call around. You should be able to find a hospice that will allow you to remain a full-code for the time being.
Really, code status is a very personal decision that only you can decide for yourself. But I hope some of this information helps you should you need to make this decision in the future - I hope it will be an informed decision.
This link on code status provides a comprehensive discussion on the importance of discussing code status with patients. It was written with medical professionalsl as the intended audience but also provides excellent information for the general public.
And again, don't forget to write your advanced directive and living will no matter how healthy and young you may be today!
Anyone admitted to the hospital has a code status. It tells us what you want to have done if you suddenly stop breathing or your heart stops beating (what is referred to in hospitals as a "code blue"). Kind of like everyone is innocent until proven guilty - everyone is assumed to be a full-code unless we're told otherwise. It is not the same as an advanced directive. A code status only provides very basic information; it does not address the finer points of whether or not you'd want a feeding tube or to be left breathing dependently on a respirator for years.
Full-code: This means you want us to do everything and anything humanly and technologically possible to keep you alive.
DNR/DNI: why isn't it called "Allow natural death?" DO NOT resucitate. DO NOT intubate. Those words are so negative. But in the case of someone who is terminally ill, natural death is much more peaceful and beautiful than having a tube thrust down your throat, ribs broken during the chest compressions of CPR, and electrical shocks shooting through your body during defibrillation.
Are there other options with "codes"?
Anyone can pick and choose between each act that may be performed during a code. Some people may want to be intubated if they have a sense they may die from difficullty breathing, but feel they would want to live even if they had to be on a respirator, at least temporarily. Some people may be aware that they have very little time left and would thus prefer to die naturally rather than gain a few extra days spent uncomfortably on a respirator, unable to talk.
What are the different components of a code?
Before going into the components, I want to acknowledge a few points. I think it is very important for medicine to be demystified, so that the general public can make informed decisions about their health. But I don't want individuals to get totally caught up in the fine details. I am making this information avaiable and as easily comprehensible as possible. But if you are terminally ill, please do not get so caught up in contemplating each component of a code status that you don't do what is most important - live now - and attend to the more important decisions, questions such as - how are my relationships with my loved ones? That said, here are some of the details that may or may not be necessary should you stop breathing or your heart stop beating:
-CPR - this link provides a nice and brief summary of the pros and cons of going through CPR (which can include chest compressions and/or having air blown into your lungs artificially using a bag or machine or as in the case of community CPR, someone breathing into your mouth)
-vasopressors and antiarrhythmics are medications that go through your veins to get your heart to return to a regular rhythm. These are the least invasive of the measures used in a code, so simultaneously the most likely options patients consider keeping when not wanting to forego all of the "heroic measures" of a code.
-intubation is when a tube is inserted through your mouth into your trachea to provide an open airway so you can breathe. Oxygen is usually administered through the tube, as well as gaseous medication or anesthetics. You re not able to speak when you are intubated. And usually you remain intubated until it is believed you can maintain your own airway and breathe on your own (usually days). Unfortunately, sometimes people are intubated and placed on respirators and are not ever able to breathe on their own again. This is when family are faced with the tremendously difficult task of deciding whether or not to turn off the respirator.
-tracheostomy is when a temporary or permanent hole is cut into your throat (trachea or windpipe) through which you then breathe
-defibrillation is when an electric shock is sent to your heart to return it to a normal rhythm. Defibrillators are now part of standard CPR training and the devices exist in many public places such as airports. So if your heart stops beating in an airport, where they will not know your code status, you will likely undergo defibrillation.
-transcutaneous pacemaker is when pads are applied to your chest that send electrical impulses that keep your heart beating in a regular rhythm
-pacemaker via transvenous/epicardial wire is when a wire is inserted through your vein and into your heart to keep your heart beaating in a regular rhythm
-chest tube may be inserted through your rib cage or back to drain blood, air or fluid from around your lungs
Is DNR/DNI the same as hospice or palliative care?
No. Code status does not address the plan for your care. You can receive a full armory of treatments to cure or halt the progression of your disease while having a DNR/DNI code status. Again, this simply tells us - if you stop breathing or your heart stops beating, what you want us to do.
Do you need to be a DNR/DNI in order to enroll in hospice or palliative care?
Definitely not for palliative care. The code status requirements for hospices vary among each facility. If you are interested in hospice, but are not ready to forego heroic measures if you stop breathing or your heart stops beating tomorrow, call around. You should be able to find a hospice that will allow you to remain a full-code for the time being.
Really, code status is a very personal decision that only you can decide for yourself. But I hope some of this information helps you should you need to make this decision in the future - I hope it will be an informed decision.
This link on code status provides a comprehensive discussion on the importance of discussing code status with patients. It was written with medical professionalsl as the intended audience but also provides excellent information for the general public.
And again, don't forget to write your advanced directive and living will no matter how healthy and young you may be today!
Tuesday, April 19, 2005
Quote of the Day
"Each night, when I go to sleep, I die. And the next morning, when I wake up, I am reborn." - Mahatma Gandhi
What do you think Gandhi meant by this? You tell me and then I'll off my own two-cents worth.
What do you think Gandhi meant by this? You tell me and then I'll off my own two-cents worth.
Monday, April 18, 2005
Hospice Stats
Of the people enrollled in hospice, 30% die within one week of admission. The average period of time before death is 40 days. What does this mean? Does this mean that hospice equals a quick death? No!
It means that people are not being referred to hospice soon enough. Doctors, patients and families don't enroll in hospice until there is very little time left. This is an on-going struggle for both hospice and palliative care services. The more common this occurence is, the more it reinforces the misconceptions about end of life care. It's like a no-win cycle.
Both hospice and palliative care services are about living - and improving quality of life for people who are terminally ill. Hospice is available during the last six months of life. How do you know when you've got 6 months left? Well, no one can say definitively, but there are many indicators. Stay tuned for the post on "prognosis."
Palliative care, on the other hand, is available for anyone with a chronic, progressive disease (a disease from which they cannot be cured and will likely eventually die from) and can and should be initiated at any time from the moment of diagnosis - even if that is ten years before they will likely die. I'm currently working with a team of advanced practice nurses as well as another team of palliative care doctors strategizing how to get patients involved in palliative care earlier in the course of their disease. Palliative care is essentially symptom-management - focusing on quality of life while living with disease. However, more and more, it is being associated, like hospice, with the end of life. I hope to help break that association. We all want to be comfortable and lead a happy life whether or not our health is perfect, right?
Here is another statistic and one that I hope will actually grow. Of those enrolled in hospice, 5% live more than 6 months. Are they being referred to hospice too early in their care or is hospice giving them a higher quality of life that is more worth living for? I don't know. But think about it.
It means that people are not being referred to hospice soon enough. Doctors, patients and families don't enroll in hospice until there is very little time left. This is an on-going struggle for both hospice and palliative care services. The more common this occurence is, the more it reinforces the misconceptions about end of life care. It's like a no-win cycle.
Both hospice and palliative care services are about living - and improving quality of life for people who are terminally ill. Hospice is available during the last six months of life. How do you know when you've got 6 months left? Well, no one can say definitively, but there are many indicators. Stay tuned for the post on "prognosis."
Palliative care, on the other hand, is available for anyone with a chronic, progressive disease (a disease from which they cannot be cured and will likely eventually die from) and can and should be initiated at any time from the moment of diagnosis - even if that is ten years before they will likely die. I'm currently working with a team of advanced practice nurses as well as another team of palliative care doctors strategizing how to get patients involved in palliative care earlier in the course of their disease. Palliative care is essentially symptom-management - focusing on quality of life while living with disease. However, more and more, it is being associated, like hospice, with the end of life. I hope to help break that association. We all want to be comfortable and lead a happy life whether or not our health is perfect, right?
Here is another statistic and one that I hope will actually grow. Of those enrolled in hospice, 5% live more than 6 months. Are they being referred to hospice too early in their care or is hospice giving them a higher quality of life that is more worth living for? I don't know. But think about it.
Wednesday, April 13, 2005
Ghost?
I had my second patient death since my grandmother died. This patient died the weekend before my aunt passed. I was actually a little shaken, because I hadn't been expecting this patient to die - well, at least not that night.
My response to her death was different. I kind of avoided her room after she died, which I don't normally do. I think my personal losses do make my professional losses harder.
When I told the doctor that our patient had died, she came into her room with tears in her eyes. I actually had the best post-mortem interaction with doctors that I've ever had. She and her supervising doctor and I sat at the patient's bedside and processed the loss together. All the while, the supervising doctor held the deceased patient's hand in his. I was so touched.
I probably wasn't the best at being open myself, my own personal grief so close to the surface. But it was still a really good experience. As we were getting up from the bedside to leave and move on with the details we had to take care of post-mortem, the patient's primary doctor opened her arms to give me a hug.
This death was complicated by the fact that the patient had been sending mixed messages about what she wanted all night.
Although I technically could have passed the task on to the next nurse coming onto
shift, I made myself do the post-mortem care with a nursing aid. I'm glad I did it, despite my unusual discomfort. Kind of like getting back on a bike after you've fallen.
The patient was a really sweet lady - and so cute. She was in her 60's. Sadly, she didn't have any family. She gave us all a laugh when she was asked if she does any drugs. She responded, "Sure. i smoke a little weed now and then." I was amused. If you'd seen this cute little old lady, I bet you'd have been amused as well. Definitely breaking stereotypes.
The next night, I had a new patient in that same room. All night, the room felt super-drafty and cold. The new patient kept complaining that she was cold, too. Have you seen 6th Sense? In that movie the young boy feels cold whenever there are ghosts around. So, of course, this left me feeling mildly spooked.
Then later, the new patient said to me, "I had a visitor." (She didn't have any visitors in the middle of the night). And I said, "No, you didn't have any visitors." And she looked at me confused, "Are you sure no one was in here?" And I said, "Yes."
Doo doo doo doo... (twilight zone soundtrack)
Do you believe in ghosts? Generally, I don't. But things like this
make me wonder. What do you think?
NOTE: This posting was adapted from recent emails sent to a good friend. So Ben, sorry for the repeat of a story you've already heard. :-)
My response to her death was different. I kind of avoided her room after she died, which I don't normally do. I think my personal losses do make my professional losses harder.
When I told the doctor that our patient had died, she came into her room with tears in her eyes. I actually had the best post-mortem interaction with doctors that I've ever had. She and her supervising doctor and I sat at the patient's bedside and processed the loss together. All the while, the supervising doctor held the deceased patient's hand in his. I was so touched.
I probably wasn't the best at being open myself, my own personal grief so close to the surface. But it was still a really good experience. As we were getting up from the bedside to leave and move on with the details we had to take care of post-mortem, the patient's primary doctor opened her arms to give me a hug.
This death was complicated by the fact that the patient had been sending mixed messages about what she wanted all night.
Although I technically could have passed the task on to the next nurse coming onto
shift, I made myself do the post-mortem care with a nursing aid. I'm glad I did it, despite my unusual discomfort. Kind of like getting back on a bike after you've fallen.
The patient was a really sweet lady - and so cute. She was in her 60's. Sadly, she didn't have any family. She gave us all a laugh when she was asked if she does any drugs. She responded, "Sure. i smoke a little weed now and then." I was amused. If you'd seen this cute little old lady, I bet you'd have been amused as well. Definitely breaking stereotypes.
The next night, I had a new patient in that same room. All night, the room felt super-drafty and cold. The new patient kept complaining that she was cold, too. Have you seen 6th Sense? In that movie the young boy feels cold whenever there are ghosts around. So, of course, this left me feeling mildly spooked.
Then later, the new patient said to me, "I had a visitor." (She didn't have any visitors in the middle of the night). And I said, "No, you didn't have any visitors." And she looked at me confused, "Are you sure no one was in here?" And I said, "Yes."
Doo doo doo doo... (twilight zone soundtrack)
Do you believe in ghosts? Generally, I don't. But things like this
make me wonder. What do you think?
NOTE: This posting was adapted from recent emails sent to a good friend. So Ben, sorry for the repeat of a story you've already heard. :-)
Monday, April 11, 2005
And I Miss You
[Everything But the Girl’s Amplified Heart* on the stereo]
“…And I don't need reminding
how loud the phone can ring
when you're waiting for news…“
Flashback to 5 hours earlier:
Sweetie: Mia? Mia? Wake up, Mia. Come on. Wake up.
Mia (pulling eye shade off her face to rub eyes): Huh? Huh? What is it?
Sweetie: It’s your cousin on the phone. He wants me to wake you up.
Mia sits bolt upright in bed and reaches for the phone.
Mia (in a sleepy voice): Hello?
“I step off the train,
I'm walking down your street again,
and past your door,
but you don't live there anymore.”
*lyrics by Tracey Thorn and Ben Watt
“…And I don't need reminding
how loud the phone can ring
when you're waiting for news…“
Flashback to 5 hours earlier:
Sweetie: Mia? Mia? Wake up, Mia. Come on. Wake up.
Mia (pulling eye shade off her face to rub eyes): Huh? Huh? What is it?
Sweetie: It’s your cousin on the phone. He wants me to wake you up.
Mia sits bolt upright in bed and reaches for the phone.
Mia (in a sleepy voice): Hello?
“I step off the train,
I'm walking down your street again,
and past your door,
but you don't live there anymore.”
*lyrics by Tracey Thorn and Ben Watt
Saturday, April 09, 2005
The colored Doors
Did you ever do that exercise where you close your eyes and someone talks you through a walk through an imaginary hallway? You're suppose to get into a meditational state while contempating the hallway. Though I suppose you could try doing it while reading a computer screen. ;-)
As you walk through this hallway, you come to a door.
The first door is red, what do you do?
Then you continue walking through the hallway and come to a green door, what do you do?
Then you continue walking through the hallway and come to a blue door, what do you do?
Then you continue walking through the hallway and come to a yellow door, what do you do?
Then you continue walking through the hallway and come to a black door, what do you do?
You can probably guess what the black door means. If you're curious, I'll tell you what each of them mean.
Anyway, I did this exercise back when I was in college, long before I had a clue that I would be working in death.
As I went through each door, I opened them and looked inside and described what I saw. But when I got to the black door (not knowing consciously that it symbolized death), I smelled it, ran my hands over it, put my ear up against it to listen, but I wouldn't go inside. This definitely seems to be a foreshadowing of the work I have been doing.
What would you do if you came across a black door?
As you walk through this hallway, you come to a door.
The first door is red, what do you do?
Then you continue walking through the hallway and come to a green door, what do you do?
Then you continue walking through the hallway and come to a blue door, what do you do?
Then you continue walking through the hallway and come to a yellow door, what do you do?
Then you continue walking through the hallway and come to a black door, what do you do?
You can probably guess what the black door means. If you're curious, I'll tell you what each of them mean.
Anyway, I did this exercise back when I was in college, long before I had a clue that I would be working in death.
As I went through each door, I opened them and looked inside and described what I saw. But when I got to the black door (not knowing consciously that it symbolized death), I smelled it, ran my hands over it, put my ear up against it to listen, but I wouldn't go inside. This definitely seems to be a foreshadowing of the work I have been doing.
What would you do if you came across a black door?
Thursday, April 07, 2005
My Last Visit?
Today was likely my last visit to see my aunt. Initially, I sat paralyzed at her bedside, anxious to find the inner peace from my last visit. Instead, a new shyness overcame me. The words I wanted to say were frozen on my lips as I gazed at her head resting on the pillow, eyes closed. Her voice was but a faint whisper.
Doing my best to stifle the tears that seemed to make her uncomfortable during my prior visits, I searched for the most benign words I could find. Hopeful that breaking the silence by saying anything would calm my nerves enough to get to the important stuff.
Mia: It turned out to be a lovely day today. [pause] The forecast was for rain, but the sun is shining bright.
Auntie (in her barely audible whisper): Lovely.
In the silence that ensued, I tried reading my book again, but sense that she wasn’t sleeping and set it back down.
What do I want to tell her? What do I need her to know? What can I say that won’t sound too heavy and sad and…
Mia: Can I do anything for you?
My aunt shook her head in a gentle “no.”
Another long pause as I scrambled for the words.
Mia: I’ve always enjoyed our talks. I’m sorry that I didn’t visit more often.
My aunt let me know that she’d heard me with an affirmative nod.
Shortly after, there was a knock at the door and her two children, my cousins, arrived.
I tried to perk myself up in case I could be a support to them. They are coping remarkably well considering they lost their father last year and their sister the year before that. I don’t know how they’ve had the strength to get through so many consecutive losses.
It was nice to see my cousins. I’m also glad that I got some time alone with my aunt. There is never enough time.
There is more to this visit. Details that feel like flashes of emotion that I can’t bare to place properly into this story. Struggling with the paid caregiver over whether or not my aunt was asking for water, affectionately covering my aunt in a blanket when she complained of feeling cold, lovingly kissing my aunt on the forehead for the last time as I said my goodbye, my uncertainty when faced with my aunt’s frown as I told her I was going back home, unabashedly sobbing audibly during the entire train ride home knowing this would likely be the last time I made that train trip until her funeral or memorial.
Doing my best to stifle the tears that seemed to make her uncomfortable during my prior visits, I searched for the most benign words I could find. Hopeful that breaking the silence by saying anything would calm my nerves enough to get to the important stuff.
Mia: It turned out to be a lovely day today. [pause] The forecast was for rain, but the sun is shining bright.
Auntie (in her barely audible whisper): Lovely.
In the silence that ensued, I tried reading my book again, but sense that she wasn’t sleeping and set it back down.
What do I want to tell her? What do I need her to know? What can I say that won’t sound too heavy and sad and…
Mia: Can I do anything for you?
My aunt shook her head in a gentle “no.”
Another long pause as I scrambled for the words.
Mia: I’ve always enjoyed our talks. I’m sorry that I didn’t visit more often.
My aunt let me know that she’d heard me with an affirmative nod.
Shortly after, there was a knock at the door and her two children, my cousins, arrived.
I tried to perk myself up in case I could be a support to them. They are coping remarkably well considering they lost their father last year and their sister the year before that. I don’t know how they’ve had the strength to get through so many consecutive losses.
It was nice to see my cousins. I’m also glad that I got some time alone with my aunt. There is never enough time.
There is more to this visit. Details that feel like flashes of emotion that I can’t bare to place properly into this story. Struggling with the paid caregiver over whether or not my aunt was asking for water, affectionately covering my aunt in a blanket when she complained of feeling cold, lovingly kissing my aunt on the forehead for the last time as I said my goodbye, my uncertainty when faced with my aunt’s frown as I told her I was going back home, unabashedly sobbing audibly during the entire train ride home knowing this would likely be the last time I made that train trip until her funeral or memorial.
Wednesday, April 06, 2005
When Death Comes
by Mary Oliver
When death comes like the hungry bear in autumn;
When death comes and takes all the bright coins from his purse
To buy me, and snaps the purse shut;
When death comes like the measles-pox;
When death comes like an iceberg between the shoulder blades,
I want to step through the door full of curiousity, wondering;
What is it going to be like, that cottage of darkness?
And therefore I look upon everything
As a brotherhood and a sisterhood,
And I look upon time as no more than an idea
And I consider eternity as another possibility,
And I think of each life as a flower, as common
As a field daisy, and as singular
And each name a comfortable music in the mouth,
Tending, as all music does, toward silence,
And each body a lion of courage,
and something precious to the earth.
When it's over, I want to say: all my life
I was a bride married to amazement;
I was the bridegroom, taking the world into my arms
When it's over, I don't want to wonder
If I have made of my life something particular, and real.
I don't want to find myself sighing and frightened, or full of argument.
I don't want to end up simply having visited this world.
------------------------------------------------
Thank you to all of you who recently posted such lovely stories in my comments and offered such sweet sympathies. Your words are definitely music for my eyes.
When death comes like the hungry bear in autumn;
When death comes and takes all the bright coins from his purse
To buy me, and snaps the purse shut;
When death comes like the measles-pox;
When death comes like an iceberg between the shoulder blades,
I want to step through the door full of curiousity, wondering;
What is it going to be like, that cottage of darkness?
And therefore I look upon everything
As a brotherhood and a sisterhood,
And I look upon time as no more than an idea
And I consider eternity as another possibility,
And I think of each life as a flower, as common
As a field daisy, and as singular
And each name a comfortable music in the mouth,
Tending, as all music does, toward silence,
And each body a lion of courage,
and something precious to the earth.
When it's over, I want to say: all my life
I was a bride married to amazement;
I was the bridegroom, taking the world into my arms
When it's over, I don't want to wonder
If I have made of my life something particular, and real.
I don't want to find myself sighing and frightened, or full of argument.
I don't want to end up simply having visited this world.
------------------------------------------------
Thank you to all of you who recently posted such lovely stories in my comments and offered such sweet sympathies. Your words are definitely music for my eyes.
Tuesday, April 05, 2005
Package from Florida
Another box arrived today from my grandmother's old residence in Florida. Although the box containing her ashes remains unopened on a shelf in my living room, I tore open this box. I was desperate to gather into my arms the memories. Anxious to take these pieces of her life that I'd mailed to myself and integrate them into my life. Make her belongings a part of my life as much as her memories are a part of me. There was a little bit of everything. A sweater (that I'll wear to school tomorrow), an ornamental plant hanger that I'll put up in our bedroom, a bar of soap that she hadn't used yet that is now in our bathroom. I held the blanket she'd knitted up to her cat to let the cat smell it.
Mia (talking to cat): You remember that scent? That is the smell of your mother, my grandmother.
I paused, then continued (smiling at the cat): I guess that makes you my aunt, huh?
Right now, I've got five passports that belonged to my grandmother, sitting in my lap. The littlest things may seem so insignificant, but they're like pieces of who she was. Puzzle pieces unraveling the mysteries of her life.
If you've been reading my blog for some time, you'll know that I wrote my grandmother's biography with her while she was still living. I'm excited about taking her diaries and her passports and integrating all this new data into her life story.
Having that to look forward to keeps me from wallowing in my grief. I feel like I know her even better in some ways since she died than I did before. There are stories in these diaries that she never shared with me. I wonder if she forgot them or if she held them back for a reason. The journals are brief and cryptic and of course, I wish I could ask her what she meant.
I haven't finished unpacking the box. I'm almost afraid to. This is all that's left. This box containing a few of her possessions. Once they're all out, there is just the box of ashes. Well, the box of ashes and my empty grief.
Mia (talking to cat): You remember that scent? That is the smell of your mother, my grandmother.
I paused, then continued (smiling at the cat): I guess that makes you my aunt, huh?
Right now, I've got five passports that belonged to my grandmother, sitting in my lap. The littlest things may seem so insignificant, but they're like pieces of who she was. Puzzle pieces unraveling the mysteries of her life.
If you've been reading my blog for some time, you'll know that I wrote my grandmother's biography with her while she was still living. I'm excited about taking her diaries and her passports and integrating all this new data into her life story.
Having that to look forward to keeps me from wallowing in my grief. I feel like I know her even better in some ways since she died than I did before. There are stories in these diaries that she never shared with me. I wonder if she forgot them or if she held them back for a reason. The journals are brief and cryptic and of course, I wish I could ask her what she meant.
I haven't finished unpacking the box. I'm almost afraid to. This is all that's left. This box containing a few of her possessions. Once they're all out, there is just the box of ashes. Well, the box of ashes and my empty grief.
Saturday, April 02, 2005
Beautiful Day 3/28/05
I had a beautiful day with my aunt today. As my regular readers know, my aunt is currently dying. I wouldn't have thought it was possible to say I had a good day under those circumstances, but I did.
My walk to her house was pleasant. The air was warm, flowers were in bloom in nearly every yard I passed.
When I arrived, my aunt was sleeping. I decided to let her sleep as I got settled. I freshened up in the restroom after my long train ride, set my backpack down beside her bed and pulled up a chair. Intuitively - though I've never done this before - I decided to just read my book and sit at her bedside.
About thirty minutes later, she woke up.
Auntie: Oh, hi!
Mia: Hi. How are you doing?
Auntie: I'm okay. What time is it?
(Not having realized that I'd been sitting there awhile, she sensed I was very late.)
Mia: It's three.
I had told my Aunt that I'd be there at 2pm and had been a little late, arriving at 2:30pm. But didn't tell her I'd been sitting there for a half-hour already.
We had a nice talk in bits and pieces. She tired easily. As I saw her eyes close, I went back to my book until she woke up again. Then we'd pick up the conversation where we left off, or start talking about something new.
I have always loved my talks with my aunt. She was a social worker in her working years and I'll bet she was good at it. She's always been so easy to talk to and eager to hear about my life.
The silences in between our talks today were just as pleasant - watching her rest peacefully. I'd sometimes catch myself staring off into space. I think I needed that time of introspection myself, as much as she needed it.
I've always loved train rides. Trains and boats and planes. My mind calmly heads off into unchartered territories along with the vessels that carry me to new places. The train ride to my aunt's house is no exception. There is something magical about the metal tracks and the wooden slats lined up in an endless row, taking me to where I need to go.
There were some less than ideal aspects to this visit, unfortunately, mostly involving the inept home hospice nurse that came by while I was there, but I won't go into details. However, I got aggitated enough with her poor performance that I finally made a point of telling her that I was a palliative care nurse myself. She was only slightly better after that.
But I want to remember the positive parts of the visit.
The small intimacies: helping my aunt sip some water, applying chapstick to her dry lips, moistening her eyes with eye drops, resting my warm hand on her arm as we conversed.
And the bigger intimacies: We talked about how hard goodbyes are. She is worried she wasn't a good enough mother. I assured her that her kids turned out well, so she must have done something right. She told me that she didn't want to go. She told me she was scared, but that she suspects she will finally just fall asleep and not wake up in the end. I agreed.
At home now, I'm thinking she wanted more information than that. It's hard wearing two hats - niece and nurse. I'm trying not to expect too much of myself though. I'm doing my best, so let there be no regrets.
Addendum: I have since talked to the supervisor of the home hospice nurse working with my aunt and asked that she go into more of the details about dying with her and help my aunt and her daughter (my cousin) make peace. In my heart, I realized as wonderful as it is to help someone, I'd rather stick to the role of being my aunt's niece. I think it will work out well. At least, I hope.
P.S. Have you written your advanced directive yet?
My walk to her house was pleasant. The air was warm, flowers were in bloom in nearly every yard I passed.
When I arrived, my aunt was sleeping. I decided to let her sleep as I got settled. I freshened up in the restroom after my long train ride, set my backpack down beside her bed and pulled up a chair. Intuitively - though I've never done this before - I decided to just read my book and sit at her bedside.
About thirty minutes later, she woke up.
Auntie: Oh, hi!
Mia: Hi. How are you doing?
Auntie: I'm okay. What time is it?
(Not having realized that I'd been sitting there awhile, she sensed I was very late.)
Mia: It's three.
I had told my Aunt that I'd be there at 2pm and had been a little late, arriving at 2:30pm. But didn't tell her I'd been sitting there for a half-hour already.
We had a nice talk in bits and pieces. She tired easily. As I saw her eyes close, I went back to my book until she woke up again. Then we'd pick up the conversation where we left off, or start talking about something new.
I have always loved my talks with my aunt. She was a social worker in her working years and I'll bet she was good at it. She's always been so easy to talk to and eager to hear about my life.
The silences in between our talks today were just as pleasant - watching her rest peacefully. I'd sometimes catch myself staring off into space. I think I needed that time of introspection myself, as much as she needed it.
I've always loved train rides. Trains and boats and planes. My mind calmly heads off into unchartered territories along with the vessels that carry me to new places. The train ride to my aunt's house is no exception. There is something magical about the metal tracks and the wooden slats lined up in an endless row, taking me to where I need to go.
There were some less than ideal aspects to this visit, unfortunately, mostly involving the inept home hospice nurse that came by while I was there, but I won't go into details. However, I got aggitated enough with her poor performance that I finally made a point of telling her that I was a palliative care nurse myself. She was only slightly better after that.
But I want to remember the positive parts of the visit.
The small intimacies: helping my aunt sip some water, applying chapstick to her dry lips, moistening her eyes with eye drops, resting my warm hand on her arm as we conversed.
And the bigger intimacies: We talked about how hard goodbyes are. She is worried she wasn't a good enough mother. I assured her that her kids turned out well, so she must have done something right. She told me that she didn't want to go. She told me she was scared, but that she suspects she will finally just fall asleep and not wake up in the end. I agreed.
At home now, I'm thinking she wanted more information than that. It's hard wearing two hats - niece and nurse. I'm trying not to expect too much of myself though. I'm doing my best, so let there be no regrets.
Addendum: I have since talked to the supervisor of the home hospice nurse working with my aunt and asked that she go into more of the details about dying with her and help my aunt and her daughter (my cousin) make peace. In my heart, I realized as wonderful as it is to help someone, I'd rather stick to the role of being my aunt's niece. I think it will work out well. At least, I hope.
P.S. Have you written your advanced directive yet?
Subscribe to:
Posts (Atom)
