I have been searching for a good site that explained the meaning of Halloween and came up with this one. I think it is self-evident why this would be one of my favorite holidays - a celebration of the duality of life and death. A time some believe that there is an opening between the afterlife and this world. Definitely interesting things to contemplate. Of course, I spend more time on this subject than once a year; however, I am particularly pleased to get to celebrate this with everyone else.
This site also gives a nice historical perspective on various religious beliefs and their interpretation of this holiday. The author also presents a fascinating view of the important role Halloween plays in helping children understand and accept their "darker" selves. The author sees Halloween as an opportunity for children to bring into the light the monsters they fear inside themselves and the monsters we all fear ourselves to be at certain times in our life. "The original displeasure of anxiety then turns into the great pleasure of anxiety successfully faced and mastered."
Definitely an inspiring interpretation of Halloween. I hope it is a meaningful or minimally and enjoyable day for you all!
Sunday, October 31, 2004
Sunday, October 24, 2004
Healthy, Morbid Bedroom Talk
Even before I became a palliative care nurse, I was a little preoccupied with death and dying. I'd say approximately every 8 months, I would start a bedtime conversation with my partner about what will happen when one of us dies.
Mia (rolling off back, toward S in bed): So, how long do you think you'll wait after I die before finding a new lover?
S: I don't know. I can't imagine ever finding a new lover. I would be so devastated if I lost you.
These conversations never failed to end with both of us in tears, yet we continued to have them on roughly the same schedule. Another eight months would go by and something would spark the next conversation, like a plane trip:
Mia: I hope we die at the same time, like in a plane crash or something. Let's never fly alone. We should always fly together, just in case.
S: But what will happen to our cats if we both die at the same time? We should make sure they'll be taken care of.
And yes, again, the tears.
Today, as part of my health assessment class, I had to conduct a *very* thorough health history and physical exam of a patient and write up a paper about her/him. The woman I chose was in her 80's. I've done a few of these exams by now, so I only felt a slight hesitation before slipping into questions about her sex life.
Mia: So, when was the last time you had sex?
Ms. P: Oh, not since my husband died when I was 40.
Mia (gasping silently to myself)
So, of course, this sparked a whole new set of morbid bedroom talk once I got home.
Mia: You'll have sex again after I die, won't you?
S: I don't know. I don't even want to think about not being with you.
Mia: But, please, just tell me you'll have sex. The patient I met today hasn't had sex in 40 years - since her husband died! Sex is good; it makes you happy. Please tell me you'll have sex.
S: Okay.
Mia (nervously backpaddeling just a little): Well, you can wait a little while after I'm gone if you want, but do get back to it.
And guess what? No tears! I hope this is not a sign of becoming jaded, but instead a sign that my feelings and thoughts about death are getting healthier.
Mia (rolling off back, toward S in bed): So, how long do you think you'll wait after I die before finding a new lover?
S: I don't know. I can't imagine ever finding a new lover. I would be so devastated if I lost you.
These conversations never failed to end with both of us in tears, yet we continued to have them on roughly the same schedule. Another eight months would go by and something would spark the next conversation, like a plane trip:
Mia: I hope we die at the same time, like in a plane crash or something. Let's never fly alone. We should always fly together, just in case.
S: But what will happen to our cats if we both die at the same time? We should make sure they'll be taken care of.
And yes, again, the tears.
Today, as part of my health assessment class, I had to conduct a *very* thorough health history and physical exam of a patient and write up a paper about her/him. The woman I chose was in her 80's. I've done a few of these exams by now, so I only felt a slight hesitation before slipping into questions about her sex life.
Mia: So, when was the last time you had sex?
Ms. P: Oh, not since my husband died when I was 40.
Mia (gasping silently to myself)
So, of course, this sparked a whole new set of morbid bedroom talk once I got home.
Mia: You'll have sex again after I die, won't you?
S: I don't know. I don't even want to think about not being with you.
Mia: But, please, just tell me you'll have sex. The patient I met today hasn't had sex in 40 years - since her husband died! Sex is good; it makes you happy. Please tell me you'll have sex.
S: Okay.
Mia (nervously backpaddeling just a little): Well, you can wait a little while after I'm gone if you want, but do get back to it.
And guess what? No tears! I hope this is not a sign of becoming jaded, but instead a sign that my feelings and thoughts about death are getting healthier.
Friday, October 22, 2004
To Turn or Not to Turn
First of all, might I mention... being in school is killing my blogging experience. I am prepping for midterms already and have barely been on-line at all for an entire week. I feel like a junkie, dying for my fix.
That said, I haven't stopped thinking about my blog and blog buddies. :-) In fact, I believe it was No Milk who commented that my explanation for the cause of death rattle was not reassuring. This simple comment has sparked a huge tangent in my life outside of cyber space. You see, I had to pick a topic to study for a nursing theory class. And so I chose... death rattle. So often, nurses debate - to turn or not to turn patients who are dying. This is a somewhat passionate debate:
RN1: No, don't turn them. They're going to die soon. Why make them uncomfortable by fussing with them so much.
RN2: Yes, turn them. If they hang in there even for 24 hours, they could start getting bed sores and be in even worse pain than the turning causes them. Besides, if they're uncomfortable, premedicate them with morphine before turning them.
RN3: Yes, turn them. Because it also helps with decreasing death rattle.
RN4: No, I swear the death rattle sounded even louder after I turned her! That Mary, she is almost militant about turning her palliative care patients every two hours. That is ridiculous.
And the debate goes on and on. The more and more derisive, the more the judgements start appearing to make up for lack of knowledge on the subject. So... I want to get the knowledge to end the debate once and for all. And learn how to manage death rattle. Until now, my coworkers and I have relied primarily on educating family members that it is normal. But if, as No Milk stated, that is not in fact reassuring at all, clearly something more needs to be done.
So... off I went to the on-line medical libraries and found out that there are two different types of death rattle.
Type 1: caused by excessive salivary secretion and easily treatable with medications that cause a dry mouth
Type 2: caused by excessive bronchial secretions and NOT easily treatable
These two types also differ with regards to turning patients. Type 1 improves with turning. Type 2 does not improve and may in fact sound worse. Thus the explanation for the impassioned lectures on whether or not to turn. In some nurses experiences with death rattles of Type 1 nature, the turning has helped. In other nurses experiences with Type 2, it has gotten worse and more distressing for the family and probably for the nurse as well.
So, I won't write up my whole paper here, but I am just excited by this news and thought I'd share and explain my long abscence. See, my blog buddies inspire me and I can only blame you for my abscence. :-) Yeah, right. Well, speaking of explanations for my silence, I better get back to writing that paper.
Oh, and in case you're wondering, I think turning is very important in preventing pain from bed sores. And the type two death rattles need to be treated in another way which I am researching now.
That said, I haven't stopped thinking about my blog and blog buddies. :-) In fact, I believe it was No Milk who commented that my explanation for the cause of death rattle was not reassuring. This simple comment has sparked a huge tangent in my life outside of cyber space. You see, I had to pick a topic to study for a nursing theory class. And so I chose... death rattle. So often, nurses debate - to turn or not to turn patients who are dying. This is a somewhat passionate debate:
RN1: No, don't turn them. They're going to die soon. Why make them uncomfortable by fussing with them so much.
RN2: Yes, turn them. If they hang in there even for 24 hours, they could start getting bed sores and be in even worse pain than the turning causes them. Besides, if they're uncomfortable, premedicate them with morphine before turning them.
RN3: Yes, turn them. Because it also helps with decreasing death rattle.
RN4: No, I swear the death rattle sounded even louder after I turned her! That Mary, she is almost militant about turning her palliative care patients every two hours. That is ridiculous.
And the debate goes on and on. The more and more derisive, the more the judgements start appearing to make up for lack of knowledge on the subject. So... I want to get the knowledge to end the debate once and for all. And learn how to manage death rattle. Until now, my coworkers and I have relied primarily on educating family members that it is normal. But if, as No Milk stated, that is not in fact reassuring at all, clearly something more needs to be done.
So... off I went to the on-line medical libraries and found out that there are two different types of death rattle.
Type 1: caused by excessive salivary secretion and easily treatable with medications that cause a dry mouth
Type 2: caused by excessive bronchial secretions and NOT easily treatable
These two types also differ with regards to turning patients. Type 1 improves with turning. Type 2 does not improve and may in fact sound worse. Thus the explanation for the impassioned lectures on whether or not to turn. In some nurses experiences with death rattles of Type 1 nature, the turning has helped. In other nurses experiences with Type 2, it has gotten worse and more distressing for the family and probably for the nurse as well.
So, I won't write up my whole paper here, but I am just excited by this news and thought I'd share and explain my long abscence. See, my blog buddies inspire me and I can only blame you for my abscence. :-) Yeah, right. Well, speaking of explanations for my silence, I better get back to writing that paper.
Oh, and in case you're wondering, I think turning is very important in preventing pain from bed sores. And the type two death rattles need to be treated in another way which I am researching now.
Tuesday, October 12, 2004
Home Hospice
Bridget just wrote a very thoughtful posting on the start of her home hospice clinicals and got me recalling my own clinicals in a home hospice setting.
On my very first day of clinicals, a patient died. This was my first experience with a patient who died while I was in close proximity. She died while we were in her living room with her daughters (she was upstairs in her bedroom).
It was pretty intense. I hadn't met any of the family members nor the patient before, so it was a little awkward for me, as I didn't feel like I really had a role nor had I established any kind of relationship with them before. But it was helpful to see how the nurse who was my clinical instructor, interacted with them and what her role was like.
Although my instructor was able to maintain her cool, I got teary eyed several times, especially around the youngest daughter who was in acute distress, because her mother had died when no one was in the room. My instructor explained that a lot of people wait until they're alone to let go. Having loved ones nearby is often what keeps the person from passing, because it is harder for them to let go of this life with a reminder of what they must leave behind so close by.
The daughter also felt bad because she had withheld pain meds (from her mother) because she'd wanted her mother to be alert. Her sisters had gotten very upset with her because they knew their mom was in pain. They all struggled over keeping her alert verses sedating the pain away. And after she died, the daughter who'd insisted on withholding the meds became incredibly guilt-stricken thinking that she'd let her mother suffer too long. However, the mother's pain had been in control over the last few days, so she was able to die peacefully. So my instructor tried to refocus the daughter on that fact and helped her appreciate what time she'd had with her mom while she'd been more alert, despite the pain. My instructor was very tactful despite her own frustrations with the daughter's withholding the meds. (She had expressed these frustrations to me before we’d entered the house and before we knew that the patient had died).
This was my first time seeing a dead body, other than my grandmother’s body at her wake. I was a little nervous and the whole thing felt very surreal to me. I kept looking at the body and wondering how my instructor could be so certain that the patient had died. I would later develop a keen eye for when a patient was about to die.
These brief interactions with the family members, as insignificant as they seemed at the time, had such a profound affect on the palliative care nurse I have become. And of course, I am still learning.
On my very first day of clinicals, a patient died. This was my first experience with a patient who died while I was in close proximity. She died while we were in her living room with her daughters (she was upstairs in her bedroom).
It was pretty intense. I hadn't met any of the family members nor the patient before, so it was a little awkward for me, as I didn't feel like I really had a role nor had I established any kind of relationship with them before. But it was helpful to see how the nurse who was my clinical instructor, interacted with them and what her role was like.
Although my instructor was able to maintain her cool, I got teary eyed several times, especially around the youngest daughter who was in acute distress, because her mother had died when no one was in the room. My instructor explained that a lot of people wait until they're alone to let go. Having loved ones nearby is often what keeps the person from passing, because it is harder for them to let go of this life with a reminder of what they must leave behind so close by.
The daughter also felt bad because she had withheld pain meds (from her mother) because she'd wanted her mother to be alert. Her sisters had gotten very upset with her because they knew their mom was in pain. They all struggled over keeping her alert verses sedating the pain away. And after she died, the daughter who'd insisted on withholding the meds became incredibly guilt-stricken thinking that she'd let her mother suffer too long. However, the mother's pain had been in control over the last few days, so she was able to die peacefully. So my instructor tried to refocus the daughter on that fact and helped her appreciate what time she'd had with her mom while she'd been more alert, despite the pain. My instructor was very tactful despite her own frustrations with the daughter's withholding the meds. (She had expressed these frustrations to me before we’d entered the house and before we knew that the patient had died).
This was my first time seeing a dead body, other than my grandmother’s body at her wake. I was a little nervous and the whole thing felt very surreal to me. I kept looking at the body and wondering how my instructor could be so certain that the patient had died. I would later develop a keen eye for when a patient was about to die.
These brief interactions with the family members, as insignificant as they seemed at the time, had such a profound affect on the palliative care nurse I have become. And of course, I am still learning.
Sunday, October 10, 2004
Oscar 11/99 - 10/9/04
My beloved Oscar died unexpectedly last night. Oscar was a Botia macracanthus, commonly known as a clown loach. Their expected lifespan is 15+ years, so it is even more painful to me that he lived only five. Of course, I'm not exactly sure of his birth date. I adopted him in November of 1999, assuming he was still just a babe. But I suppose he could have been older.
Oscar was an amazingly bright fish. When his companion was still alive, he would pick up the food pellet from the bottom of the tank and carry it around, so the other fish couldn't steal it from him. I used to make him a toy - a piece of diced zucchini wrapped in rubber bands that he'd playfully attack and toss around along the graveled bottom of his home. I loved watching him swim. His large body was not a hinderance to the acrobatics he could perform in his tank.
I work with death almost every day, but I couldn't deal with handling Oscar's corpse.
Mia (in whiny voice): Oh, no! Oscar's dead.
S: Oh, don't panic. I'm sure he's not. You know he likes to play dead all the time.
And he did, he would sit perfectly still, lying belly up on the bottom of the aquarium. I waved my fingers along the glass of the tank to see if he'd move, as I'd always done. But looking at his anemic, water-logged body, I knew this wasn't play.
Mia (continuing to whine): No, he's not playing! This is for real! S, you have to help me. I can't deal with this!
S: Okay, step outside the room. I'll take care of him.
As S used the net to raise Oscar up out of his death bed, she called to me.
S: So, what do you have in mind for a burial?
Mia (still whiny and pouting): I don't know yet.
S: it's okay. You can decide later.
We'd been on our way out the door for dinner with friends when I'd discovered him. As we headed out, I asked nervously.
Mia: What did you do with him?
S (smiling): I put him in the morgue.
We have had fish die before and always end up putting them in the freezer until we decide what to do with them. So, it's true. The freezer has become somewhat of a fish morgue. The fact that S has become so comfortable with the terminology of my life's work made me smile, too.
It seems so pathetic that I can handle dead humans on a regular basis, but couldn't even look at the empty aquarium after Oscar passed. I guess it's a good reminder of what it feels like to lose a living being whom you care for.
Oscar will be sorely missed. I am planning on having an ocean burial for him with the hopes that he'll come back as a large whale - swimming the expanse of the oceans in freedom. Rest in peace, Oscar. I love you.
Oscar was an amazingly bright fish. When his companion was still alive, he would pick up the food pellet from the bottom of the tank and carry it around, so the other fish couldn't steal it from him. I used to make him a toy - a piece of diced zucchini wrapped in rubber bands that he'd playfully attack and toss around along the graveled bottom of his home. I loved watching him swim. His large body was not a hinderance to the acrobatics he could perform in his tank.
I work with death almost every day, but I couldn't deal with handling Oscar's corpse.
Mia (in whiny voice): Oh, no! Oscar's dead.
S: Oh, don't panic. I'm sure he's not. You know he likes to play dead all the time.
And he did, he would sit perfectly still, lying belly up on the bottom of the aquarium. I waved my fingers along the glass of the tank to see if he'd move, as I'd always done. But looking at his anemic, water-logged body, I knew this wasn't play.
Mia (continuing to whine): No, he's not playing! This is for real! S, you have to help me. I can't deal with this!
S: Okay, step outside the room. I'll take care of him.
As S used the net to raise Oscar up out of his death bed, she called to me.
S: So, what do you have in mind for a burial?
Mia (still whiny and pouting): I don't know yet.
S: it's okay. You can decide later.
We'd been on our way out the door for dinner with friends when I'd discovered him. As we headed out, I asked nervously.
Mia: What did you do with him?
S (smiling): I put him in the morgue.
We have had fish die before and always end up putting them in the freezer until we decide what to do with them. So, it's true. The freezer has become somewhat of a fish morgue. The fact that S has become so comfortable with the terminology of my life's work made me smile, too.
It seems so pathetic that I can handle dead humans on a regular basis, but couldn't even look at the empty aquarium after Oscar passed. I guess it's a good reminder of what it feels like to lose a living being whom you care for.
Oscar will be sorely missed. I am planning on having an ocean burial for him with the hopes that he'll come back as a large whale - swimming the expanse of the oceans in freedom. Rest in peace, Oscar. I love you.
Saturday, October 09, 2004
Don't Be Afraid to Say "Cancer"
Recently, most of my palliative care patients have been comatose. My work was focused on keeping them comfortable and guiding the families to do the "work" for their dying loved one.
"Tell him what you think he did well in his lifetime. Tell him you forgive him and ask for his forgiveness." I would explain that this is the end-of-life work that their loved one would be doing out loud if they were able to. "Help her make peace with her life."
Yesterday, I had two palliative care patients, both of whom were fully awake. It had been weeks, possibly months, since I'd had a patient who was alert and it kind of threw me off. I'd become so comfortable with the families, but suddenly felt estranged from the patients themselves.
The main thing I try to focus on when with the people who are dying and their families is to be open to using the words that so many avoid out of discomfort. Don't be afraid to say: death, dying, cancer, end-of-life. Acknowledging the pink elephant in the middle of the room frequently is a large part of this work. However, I'm still not quite suave with these conversations.
One of my patients yesterday was confused. She didn't even know her own name, let alone recall mine.
"Do you know who I am?"
She shook her head no.
"I'm Mia. I'm your nurse," I explained. "Do you know where you are?"
She again shook her head no.
"You're in the hospital."
She looked at me blankly.
"Do you know why you're here?"
She again shook her head no.
"You have cancer."
She continued to look at me blankly.
I felt frustrated. I wasn't sure she understood what I was saying. I had to leave the room for a moment and then came back.
"Do you remember who I am?" I asked again, to assess her short-term memory.
She again shook her head no.
"I'm Mia. I'm your nurse," I reminded her.
I had met with the palliative care team that afternoon and they'd explained to me that their goal was to keep her alive for another two weeks until her daughter's wedding.
"So, I hear there is going to be a wedding." I looked to her husband who had just arrived and then looked towards the patient. The patient looked at me with excited surprise in her face. She didn't seem to have heard the news. I again assumed she must be confused.
Her son then entered the room and approached her bed to kiss her hello.
"I'm sick," she informed him as if she had just learned this fact, though she'd been in the hospital for weeks. Suddenly, I wasn't sure how confused she was. Did she just figure that out from me? Surely the doctors had told her of her prognosis, as they had signed for her to be made palliative care and had signed the DNR/DNI orders. Did the emotional impact of my pronouncement ingrain it more solidly into her fragile memory?
I had worked hard to overcome my timidity in approaching these subjects with her. But in retrospect, I wish I had started the conversation out differently.
"Tell me what you understand about why you're here." I have been taught over-and-over: use open ended questions. The awkwardness I still feel during these conversations wipes out the basic communications lessons I've learned over and over.
Someday I hope I get it right. In the meantime, I hope my stumbling at least had the side effect of opening a door for the family to start talking directly about the fact that she is dying.
"Tell him what you think he did well in his lifetime. Tell him you forgive him and ask for his forgiveness." I would explain that this is the end-of-life work that their loved one would be doing out loud if they were able to. "Help her make peace with her life."
Yesterday, I had two palliative care patients, both of whom were fully awake. It had been weeks, possibly months, since I'd had a patient who was alert and it kind of threw me off. I'd become so comfortable with the families, but suddenly felt estranged from the patients themselves.
The main thing I try to focus on when with the people who are dying and their families is to be open to using the words that so many avoid out of discomfort. Don't be afraid to say: death, dying, cancer, end-of-life. Acknowledging the pink elephant in the middle of the room frequently is a large part of this work. However, I'm still not quite suave with these conversations.
One of my patients yesterday was confused. She didn't even know her own name, let alone recall mine.
"Do you know who I am?"
She shook her head no.
"I'm Mia. I'm your nurse," I explained. "Do you know where you are?"
She again shook her head no.
"You're in the hospital."
She looked at me blankly.
"Do you know why you're here?"
She again shook her head no.
"You have cancer."
She continued to look at me blankly.
I felt frustrated. I wasn't sure she understood what I was saying. I had to leave the room for a moment and then came back.
"Do you remember who I am?" I asked again, to assess her short-term memory.
She again shook her head no.
"I'm Mia. I'm your nurse," I reminded her.
I had met with the palliative care team that afternoon and they'd explained to me that their goal was to keep her alive for another two weeks until her daughter's wedding.
"So, I hear there is going to be a wedding." I looked to her husband who had just arrived and then looked towards the patient. The patient looked at me with excited surprise in her face. She didn't seem to have heard the news. I again assumed she must be confused.
Her son then entered the room and approached her bed to kiss her hello.
"I'm sick," she informed him as if she had just learned this fact, though she'd been in the hospital for weeks. Suddenly, I wasn't sure how confused she was. Did she just figure that out from me? Surely the doctors had told her of her prognosis, as they had signed for her to be made palliative care and had signed the DNR/DNI orders. Did the emotional impact of my pronouncement ingrain it more solidly into her fragile memory?
I had worked hard to overcome my timidity in approaching these subjects with her. But in retrospect, I wish I had started the conversation out differently.
"Tell me what you understand about why you're here." I have been taught over-and-over: use open ended questions. The awkwardness I still feel during these conversations wipes out the basic communications lessons I've learned over and over.
Someday I hope I get it right. In the meantime, I hope my stumbling at least had the side effect of opening a door for the family to start talking directly about the fact that she is dying.
Friday, October 08, 2004
Making Peace with Death
How does one make peace with death - with their own mortality or the loss of a loved one? That is such an individual question. I was so honored when in a recent comment, a reader told me that reading my blog "has given [her] a sense of peace about [her] mother's death." That is all I want to do for anyone, honestly.
I have watched my father struggle with his mortality. He has had a hard time with aging. It seems to depress him to be getting older. I wish I could bring him peace and happiness. It's so important to focus on enjoying each moment that we have rather than fearing the inevitable. But we all do it.
My partner tries to counter-balance my own issues with getting my first wrinkles by telling me that aging is beautiful and time only makes us wiser.
But how is it that I am able to feel enough of a sense of peace with death to be able to coach people and their families through this process? (Not that I'm exceptionally good at it yet, but I am trying - which is more than many do, I suppose).
Two events happened that served as catalysts in heading me towards peace with death and helped me to reach a degree of acceptance of my own mortality. To mention them both in the same sentence seems sacrilege, but it sincerely was the two together that helped me find this peace. First, Buffy (yes, the vampire slayer) died and was distraught when she was brought back to life. And then my cousin Marie was diagnosed with cancer.
Now, I know I sound like some kind of quack to give credit to a television character for such a major transformation in my life. But if you’ve ever gotten sucked intensely into a comic or a television program, you’ll understand. Buffy was my friend. My partner and I had watched nearly every episode for years. And when Buffy died in a season finale, both of us cried audibly. So when she came back to life and was unhappy to have been brought back and processed through that experience, she gave me a sense of hope. She vaguely talked about finding peace and serenity after death. This news, although from a rationally unreliable source, was somehow reassuring. (I have since heard similar stories from people who have been through NDE - Near Death Experiences - in real life which are equally reasuring).
Then when my cousin Marie was diagnosed with cancer, I was incredibly upset. The news was shocking, despite the fact that I knew her specific type of cancer had an excellent prognosis. To alleviate any concerns you may have, before I proceed I will mention that she is now very well. She finished chemo and has been “cancer free” for over a year. But before she had finished chemo, I had had a dream that would again change my feelings about death forever. In the dream, I saw Marie lying on the floor in the middle of a very dark room. There was a stage light shining over her. I walked toward her and knelt down beside her. Suddenly, I realized that she was dying and this realization threw me into a panic. But looking at Marie in this dream, she looked the most beautiful I’d ever seen her. She was glowing and looked so peaceful. She looked over at me and then calmly said, “It’s okay.” And I understood. It was okay. I woke up to the realization that death is a beautiful thing – like birth, beautiful and moving in its power.
Now although both of these events served as markers of transformation for me, I cannot give these occurrences all of the credit. These events were mere starting points off which I leapt less fearfully into exploring the process of death.
Since then, I have read books: “On Death and Dying” by Elisabeth Kubler-Ross, “Final Gifts” by Maggie Callanan and Patricia Kelley; “Dying Well” by Dr. Ira Byock; listenned to lectures on tape by Christine Longaker; among numerous other sources of information. I have begun studying Tibetan Buddhism. According to Tibetan Buddhism, we should all live with a constant awareness of death. This awareness helps us to see every moment as precious, and reminds us to use our time wisely and conscientiously.
In addition, I have had the support of numerous people who have served as mentors for me in my quest for understanding death and dying: BS, who has laid in bed with her patients to comfort them as they’ve approached death; my clinical preceptor JA who has been working as a Home Hospice nurse for years; my communications instructor in nursing school; RK, a massage therapist who provides free bodywork to people who are dying in the hospital; and friends and family (particularly my partner) who have listened to me as I processed through the grief and growing pains of learning how to help families facing death and coping with loss. And, of course, I have learned so much from my patients themselves as well as from their families. I have not journeyed this road alone by any means.
Okay, But Why Work with People who are Dying?
Well, then my cousin Reba got cancer. During a visit with her at the hospital, she looked intensely into my eyes and said, “I don’t want to die.” Reba's cancer didn’t have the great prognosis that Marie's had had. And Reba was clearly struggling to stay alive. I felt powerless and didn’t know how to help. Months later, Reba died, in lots of pain and still desperately trying to cling to life. I want to prevent as many people as I can from having such a tragic end to their life.
So now, the best I hope for in the work that I do – is to help patients make peace with their lives so that they are able to let go of this life and to help families and patients make peace in their relationships. And in order to achieve these goals, my job is also to make sure the dying individual is physically comfortable so that they can focus on the mental and spiritual aspects of this process.
I am still learning and have a long way to go, but I'd like to think that I've at least contributed to making a few people's deaths a little less painful. I'm certain that I've helped them to be free of physical pain, but I hope that I've also made the experience less painful emotionally as well. Not only less painful, but perhaps even meaningful in a positive way - for the survivors, I hope I've helped to create a goodbye that has been more of a sweet sorrow and less of a bitter sadness filled with regrets.
But now, that is all of our jobs as well. Live a life so that at our own ends, we will be able to say, "Non, je ne regrette rien."
I have watched my father struggle with his mortality. He has had a hard time with aging. It seems to depress him to be getting older. I wish I could bring him peace and happiness. It's so important to focus on enjoying each moment that we have rather than fearing the inevitable. But we all do it.
My partner tries to counter-balance my own issues with getting my first wrinkles by telling me that aging is beautiful and time only makes us wiser.
But how is it that I am able to feel enough of a sense of peace with death to be able to coach people and their families through this process? (Not that I'm exceptionally good at it yet, but I am trying - which is more than many do, I suppose).
Two events happened that served as catalysts in heading me towards peace with death and helped me to reach a degree of acceptance of my own mortality. To mention them both in the same sentence seems sacrilege, but it sincerely was the two together that helped me find this peace. First, Buffy (yes, the vampire slayer) died and was distraught when she was brought back to life. And then my cousin Marie was diagnosed with cancer.
Now, I know I sound like some kind of quack to give credit to a television character for such a major transformation in my life. But if you’ve ever gotten sucked intensely into a comic or a television program, you’ll understand. Buffy was my friend. My partner and I had watched nearly every episode for years. And when Buffy died in a season finale, both of us cried audibly. So when she came back to life and was unhappy to have been brought back and processed through that experience, she gave me a sense of hope. She vaguely talked about finding peace and serenity after death. This news, although from a rationally unreliable source, was somehow reassuring. (I have since heard similar stories from people who have been through NDE - Near Death Experiences - in real life which are equally reasuring).
Then when my cousin Marie was diagnosed with cancer, I was incredibly upset. The news was shocking, despite the fact that I knew her specific type of cancer had an excellent prognosis. To alleviate any concerns you may have, before I proceed I will mention that she is now very well. She finished chemo and has been “cancer free” for over a year. But before she had finished chemo, I had had a dream that would again change my feelings about death forever. In the dream, I saw Marie lying on the floor in the middle of a very dark room. There was a stage light shining over her. I walked toward her and knelt down beside her. Suddenly, I realized that she was dying and this realization threw me into a panic. But looking at Marie in this dream, she looked the most beautiful I’d ever seen her. She was glowing and looked so peaceful. She looked over at me and then calmly said, “It’s okay.” And I understood. It was okay. I woke up to the realization that death is a beautiful thing – like birth, beautiful and moving in its power.
Now although both of these events served as markers of transformation for me, I cannot give these occurrences all of the credit. These events were mere starting points off which I leapt less fearfully into exploring the process of death.
Since then, I have read books: “On Death and Dying” by Elisabeth Kubler-Ross, “Final Gifts” by Maggie Callanan and Patricia Kelley; “Dying Well” by Dr. Ira Byock; listenned to lectures on tape by Christine Longaker; among numerous other sources of information. I have begun studying Tibetan Buddhism. According to Tibetan Buddhism, we should all live with a constant awareness of death. This awareness helps us to see every moment as precious, and reminds us to use our time wisely and conscientiously.
In addition, I have had the support of numerous people who have served as mentors for me in my quest for understanding death and dying: BS, who has laid in bed with her patients to comfort them as they’ve approached death; my clinical preceptor JA who has been working as a Home Hospice nurse for years; my communications instructor in nursing school; RK, a massage therapist who provides free bodywork to people who are dying in the hospital; and friends and family (particularly my partner) who have listened to me as I processed through the grief and growing pains of learning how to help families facing death and coping with loss. And, of course, I have learned so much from my patients themselves as well as from their families. I have not journeyed this road alone by any means.
Okay, But Why Work with People who are Dying?
Well, then my cousin Reba got cancer. During a visit with her at the hospital, she looked intensely into my eyes and said, “I don’t want to die.” Reba's cancer didn’t have the great prognosis that Marie's had had. And Reba was clearly struggling to stay alive. I felt powerless and didn’t know how to help. Months later, Reba died, in lots of pain and still desperately trying to cling to life. I want to prevent as many people as I can from having such a tragic end to their life.
So now, the best I hope for in the work that I do – is to help patients make peace with their lives so that they are able to let go of this life and to help families and patients make peace in their relationships. And in order to achieve these goals, my job is also to make sure the dying individual is physically comfortable so that they can focus on the mental and spiritual aspects of this process.
I am still learning and have a long way to go, but I'd like to think that I've at least contributed to making a few people's deaths a little less painful. I'm certain that I've helped them to be free of physical pain, but I hope that I've also made the experience less painful emotionally as well. Not only less painful, but perhaps even meaningful in a positive way - for the survivors, I hope I've helped to create a goodbye that has been more of a sweet sorrow and less of a bitter sadness filled with regrets.
But now, that is all of our jobs as well. Live a life so that at our own ends, we will be able to say, "Non, je ne regrette rien."
Tuesday, October 05, 2004
The Difficult Death
All of the nurses on the floor thought Mr. Halibut was incredibly difficult. They complained that he was always on the call light and that he was very moody. At times, he seemed to have some sort of mental breakdown, during which he became somewhat confused.
I was still a nursing student, and as is customary, the nurses on the floor tossed the least desirable patient in the student's direction. Fortunately, as it was my second quarter of clinicals, I was only expected to take on one patient at a time.
The doctors had decided that Mr. Halibut's leukemia had recurred one too many times. They had no other treatment options to offer him. He was going to die. Mr. Halibut had been in the hospital for two days now and had not yet fully comprehend that this was the conclusion that the doctors had come to. I don’t think he was ready to hear this news.
I started the first day off by answering his call light immediately. Then I dropped in every couple of hours "just to check in." The nurses on the floor were impressed (and relieved) that he hadn't been using his call light as often.
I gave him full control. He wanted help getting his slippers on? I got on the floor to make sure there weren't any pebbles on the bottom of his feet before sliding the shoe on. (The chemo had made his feet go numb and thus put him at risk for developing sores or blisters because he couldn't feel what was in his shoe).
"Why are you being so nice to me?" He asked me. "I must be really sick to be getting this much attention, huh?" So, okay, I may have been a little too attentive and accommodating as a nursing student.
I laughed gently, "No." I explained, "I'm a nursing student, so you're my only patient, so I don't have that much I need to do. I thought I might as well hang out in here with you." Both Mr. Halibut and I knew that was only half the truth.
The next day, we went for a walk in the hallway together. He initiated a conversation about his life. I encouraged it by asking him all sorts of questions. After reviewing his life that afternoon, he started to withdraw and became increasingly depressed. The reality of his failing health was finally sinking in.
A week later, he was sent home for home hospice (a nurse, home health attendant, social worker and chaplain would visit him regularly at home). I knew he still had a lot of work to do before he would be ready to let go of this life. It had been such an honor for me to be present with him as he began this process. Saying goodbye to him in the hallway, as he sat in his wheelchair with his belongings loaded up on the arm rests, I knew I would never see him again. Tears came to the rims of my eyes as I told him how much it had meant to me to work with him. Both he and his wife returned my goodbye with warm, sad smiles. He died about a month later in his home.
After having such a rewarding experience with Mr. Halibut, I sought out the "difficult patients" more and more. Thank you, Mr. Halibut! You were an inspiration. I hope you are resting in peace.
I was still a nursing student, and as is customary, the nurses on the floor tossed the least desirable patient in the student's direction. Fortunately, as it was my second quarter of clinicals, I was only expected to take on one patient at a time.
The doctors had decided that Mr. Halibut's leukemia had recurred one too many times. They had no other treatment options to offer him. He was going to die. Mr. Halibut had been in the hospital for two days now and had not yet fully comprehend that this was the conclusion that the doctors had come to. I don’t think he was ready to hear this news.
I started the first day off by answering his call light immediately. Then I dropped in every couple of hours "just to check in." The nurses on the floor were impressed (and relieved) that he hadn't been using his call light as often.
I gave him full control. He wanted help getting his slippers on? I got on the floor to make sure there weren't any pebbles on the bottom of his feet before sliding the shoe on. (The chemo had made his feet go numb and thus put him at risk for developing sores or blisters because he couldn't feel what was in his shoe).
"Why are you being so nice to me?" He asked me. "I must be really sick to be getting this much attention, huh?" So, okay, I may have been a little too attentive and accommodating as a nursing student.
I laughed gently, "No." I explained, "I'm a nursing student, so you're my only patient, so I don't have that much I need to do. I thought I might as well hang out in here with you." Both Mr. Halibut and I knew that was only half the truth.
The next day, we went for a walk in the hallway together. He initiated a conversation about his life. I encouraged it by asking him all sorts of questions. After reviewing his life that afternoon, he started to withdraw and became increasingly depressed. The reality of his failing health was finally sinking in.
A week later, he was sent home for home hospice (a nurse, home health attendant, social worker and chaplain would visit him regularly at home). I knew he still had a lot of work to do before he would be ready to let go of this life. It had been such an honor for me to be present with him as he began this process. Saying goodbye to him in the hallway, as he sat in his wheelchair with his belongings loaded up on the arm rests, I knew I would never see him again. Tears came to the rims of my eyes as I told him how much it had meant to me to work with him. Both he and his wife returned my goodbye with warm, sad smiles. He died about a month later in his home.
After having such a rewarding experience with Mr. Halibut, I sought out the "difficult patients" more and more. Thank you, Mr. Halibut! You were an inspiration. I hope you are resting in peace.
Monday, October 04, 2004
Symptomatology of Dying 3: Anorexia
As a review, some of the symptoms of dying that I have mentioned to some degree in previous posts include:
One to three months prior to death:
-Withdrawal from the world and people
One to two weeks prior to death:
-Confusion
-Picking at tubing (or clothing)
Days or Hours prior to death:
-Fixed stare (Eyes glassy, tearing, half or fully open)
-death rattle
Next I want to talk about anorexia. Although anorexia is commonly known as an eating disorder, it literally means "loss of appetite." As people approach death, it is very normal for us to lose interest in food or beverages. To some degree, a level of starvation and dehydration are the normal processes for dying.
This symptom may present even before an official terminal diagnoses is made. Although anorexia is normal in the dying, this does not mean that just because someone has been given a terminal diagnosis with a life expectancy of six months that they should not eat. So long as a reasonable quality of life is left, people should be encouraged to eat well. People at the end of life should be encouraged to eat their favorite foods without regard to their fat or calorie content. Protein and energy drinks (including homemade smoothies and milkshakes as well as premade beverages such as Ensure) may give the dying more energy and thus a higher quality of life in their last few months.
However, when people get within the last few weeks of their life, even the most favored foods may no longer be desirable. Families frequently have a very difficult time accepting that their loved one is refusing to eat. However, food should never be forced on the dying.
Forcing food may be detrimental in a number of ways. As referred to in the death rattle posting, as people die, their ability to swallow frequently becomes compromised. Forcing foods on them may cause them to choke or develop pneumonia. In addition, forcing food may prolong life and make your loved ones transition more difficult and possibly more painful.
Many hospice advocates, including Christine Longaker, believe that towards the end of life, there is a shift away from obtaining and using energy from food sources and towards obtaining and using energy for spiritual purposes. This view may help family members who worry that their loved one is uncomfortably hungry and family members who continue to attempt to force feed their loved ones.
One to three months prior to death:
-Withdrawal from the world and people
One to two weeks prior to death:
-Confusion
-Picking at tubing (or clothing)
Days or Hours prior to death:
-Fixed stare (Eyes glassy, tearing, half or fully open)
-death rattle
Next I want to talk about anorexia. Although anorexia is commonly known as an eating disorder, it literally means "loss of appetite." As people approach death, it is very normal for us to lose interest in food or beverages. To some degree, a level of starvation and dehydration are the normal processes for dying.
This symptom may present even before an official terminal diagnoses is made. Although anorexia is normal in the dying, this does not mean that just because someone has been given a terminal diagnosis with a life expectancy of six months that they should not eat. So long as a reasonable quality of life is left, people should be encouraged to eat well. People at the end of life should be encouraged to eat their favorite foods without regard to their fat or calorie content. Protein and energy drinks (including homemade smoothies and milkshakes as well as premade beverages such as Ensure) may give the dying more energy and thus a higher quality of life in their last few months.
However, when people get within the last few weeks of their life, even the most favored foods may no longer be desirable. Families frequently have a very difficult time accepting that their loved one is refusing to eat. However, food should never be forced on the dying.
Forcing food may be detrimental in a number of ways. As referred to in the death rattle posting, as people die, their ability to swallow frequently becomes compromised. Forcing foods on them may cause them to choke or develop pneumonia. In addition, forcing food may prolong life and make your loved ones transition more difficult and possibly more painful.
Many hospice advocates, including Christine Longaker, believe that towards the end of life, there is a shift away from obtaining and using energy from food sources and towards obtaining and using energy for spiritual purposes. This view may help family members who worry that their loved one is uncomfortably hungry and family members who continue to attempt to force feed their loved ones.
Sunday, October 03, 2004
Don't Let Her Die!
I found a blog written by an EMT. His most recent posting told the story of answering a 911 call and finding the patient already dead. His question was - do you feign trying to resuscitate the patient to make the family feel that everything possible was done for their loved one?
The scenario that this EMT described reminded me of a similar story - the in-patient equivalent. I had a patient who was dying of advanced metastic cancer. At start of shift, I checked in on her and her family. The patient wasn't having pain and was lying in bed comfortably. She had on an oxygen mask, as her cancer had metastasized to her lungs, making it difficult for her to breath and difficult for her to get enough oxygen. But she was still able to talk quietly and occasionally to her husband and two daughters who were at the bedside.
About a half-hour after I left her room, the husband ran out into the hallway and grabbed me.
"Help! She stopped breathing." He was clearly in a state of panic.
When I arrived in her room, one daughter was sitting at the foot of the bed, tapping firmly on their mother's feet. The other daughter was at her head rubbing her chest. Both were calling out, "Breathe, Mom! Breathe!"
She started to breathe about four resperations per minute on her own. And continued this so long as her daughters continued their cheering. Human willpower is amazing. This woman was clearly struggling. We cannot know what the patient was thinking, but we can take a few guesses. I'm certain this woman was very sad to leave her daughters. How could she not be? She'd been sick for a couple of months, however, and had probably accepted that she was dying. It must have been so painful to see her daughter's panic in her last moments. She certainly wouldn't want to leave them when it was so clear that they needed her. She tried so hard to hang on for their benefit.
The patient had signed DNR/DNI orders (do not resuscitate / do not intubate); however, the husband had durable power of attorney rights and could change the orders now that his wife was in a position where she could not speak for herself. (See my August 24th posting on physician-assisted suicide for a similar story of spouses changing code statuses as in the case of my Aunt Abby).
If you read that story, you'll realize this scenario was a bit of a hot topic for me on a personal level. Of course, as a nurse, I knew not to involve my personal history in my decision making. So, what could I do? I called the code. That was the husband's right whether or not I thought it was a good choice. Since several nurses were already in the room with me, fortunately, I at least didn't have to hit the alarm button at the bedside, which would have created a lot of drama with the sound of the alarm going off. Instead the charge nurse went and paged the doctor and called the code over the phone (which is the normal process after the code button has been pressed). Ironically, in the palliative care setting, the goal is somewhat of the opposite as it might be in a 911 call. Instead of doing EVERYTHING so that the family will feel like you've tried it all, we want to minimize invasiveness, so as to allow the death to be as peaceful as possible.
When the doctor and the code team arrived to the floor. The poor prognosis of the patient (she would die within a few days whether or not we resuscitated her that evening) and the change in code status were explained.
Fortunately, she still had a pulse. Her blood pressure was very low, however. And he oxygen level was in the 40's. An ambu-bag (manual device to inflate a person's lungs) was used to increase her respirations while the doctor pulled the husband out into the hallway to discuss what was happening.
The doctor explained to the husband that his wife was not getting enough oxygen and that she had probably already sustained quite a bit of brain damage as a result. The doctor reminded the husband of her poor prognosis. She suggested that we discontinue the code and allow his wife peaceful time alone with her family to say her goodbyes. The husband agreed.
The daughters didn't handle their father's decision perfectly well, but within a few minutes, they adjusted their own agendas and began telling their mother how nice it would be for her to see their other relatives who'd died before her. Her husband asked me to stay at the bedside with some morphine in hand just in case she appeared uncomfortable at any point. I did as he requested. He told his wife, "Remember how we said it would be? You will be so much more comfortable and at peace. It will be okay." His calm reassurances and the love and warmth he expressed were incredibly touching.
The family said their goodbyes as she took her final breath. The sight of this woman dying, surrounded by her loving daughters and husband as they spoke so many loving words to her was infinitely more powerful than any defibrillator or vasopressor could be for this family in that moment.
The scenario that this EMT described reminded me of a similar story - the in-patient equivalent. I had a patient who was dying of advanced metastic cancer. At start of shift, I checked in on her and her family. The patient wasn't having pain and was lying in bed comfortably. She had on an oxygen mask, as her cancer had metastasized to her lungs, making it difficult for her to breath and difficult for her to get enough oxygen. But she was still able to talk quietly and occasionally to her husband and two daughters who were at the bedside.
About a half-hour after I left her room, the husband ran out into the hallway and grabbed me.
"Help! She stopped breathing." He was clearly in a state of panic.
When I arrived in her room, one daughter was sitting at the foot of the bed, tapping firmly on their mother's feet. The other daughter was at her head rubbing her chest. Both were calling out, "Breathe, Mom! Breathe!"
She started to breathe about four resperations per minute on her own. And continued this so long as her daughters continued their cheering. Human willpower is amazing. This woman was clearly struggling. We cannot know what the patient was thinking, but we can take a few guesses. I'm certain this woman was very sad to leave her daughters. How could she not be? She'd been sick for a couple of months, however, and had probably accepted that she was dying. It must have been so painful to see her daughter's panic in her last moments. She certainly wouldn't want to leave them when it was so clear that they needed her. She tried so hard to hang on for their benefit.
The patient had signed DNR/DNI orders (do not resuscitate / do not intubate); however, the husband had durable power of attorney rights and could change the orders now that his wife was in a position where she could not speak for herself. (See my August 24th posting on physician-assisted suicide for a similar story of spouses changing code statuses as in the case of my Aunt Abby).
If you read that story, you'll realize this scenario was a bit of a hot topic for me on a personal level. Of course, as a nurse, I knew not to involve my personal history in my decision making. So, what could I do? I called the code. That was the husband's right whether or not I thought it was a good choice. Since several nurses were already in the room with me, fortunately, I at least didn't have to hit the alarm button at the bedside, which would have created a lot of drama with the sound of the alarm going off. Instead the charge nurse went and paged the doctor and called the code over the phone (which is the normal process after the code button has been pressed). Ironically, in the palliative care setting, the goal is somewhat of the opposite as it might be in a 911 call. Instead of doing EVERYTHING so that the family will feel like you've tried it all, we want to minimize invasiveness, so as to allow the death to be as peaceful as possible.
When the doctor and the code team arrived to the floor. The poor prognosis of the patient (she would die within a few days whether or not we resuscitated her that evening) and the change in code status were explained.
Fortunately, she still had a pulse. Her blood pressure was very low, however. And he oxygen level was in the 40's. An ambu-bag (manual device to inflate a person's lungs) was used to increase her respirations while the doctor pulled the husband out into the hallway to discuss what was happening.
The doctor explained to the husband that his wife was not getting enough oxygen and that she had probably already sustained quite a bit of brain damage as a result. The doctor reminded the husband of her poor prognosis. She suggested that we discontinue the code and allow his wife peaceful time alone with her family to say her goodbyes. The husband agreed.
The daughters didn't handle their father's decision perfectly well, but within a few minutes, they adjusted their own agendas and began telling their mother how nice it would be for her to see their other relatives who'd died before her. Her husband asked me to stay at the bedside with some morphine in hand just in case she appeared uncomfortable at any point. I did as he requested. He told his wife, "Remember how we said it would be? You will be so much more comfortable and at peace. It will be okay." His calm reassurances and the love and warmth he expressed were incredibly touching.
The family said their goodbyes as she took her final breath. The sight of this woman dying, surrounded by her loving daughters and husband as they spoke so many loving words to her was infinitely more powerful than any defibrillator or vasopressor could be for this family in that moment.
Saturday, October 02, 2004
Morbid Mia
We are all dying. Each day that passes brings us one day closer to the day of our death. There is no getting around that fact, though I don’t stop to contemplate that reality anywhere near often enough. Many days go by taken for granted, wasted doing things that aren’t important enough to recall. Some days, however, especially working as a nurse, all illusions and fantasies that suggest that death is far away in some distant unknown future are torn painfully away and I am left feeling intensely and deeply just how temporary life is. Last night was one of those shifts.
As sad as it sounds, I actually feel lighter during these times. The change in perspective can clear away petty worries.
At times, I struggle to remember to savor each day as if it were my last. The next few hours, at least, will be appreciated more – closer to their worth – until I start busying my mind with the mundane again. Though everyday moments can be pretty amazing, too, when they’re fully experienced. That will be my goal today. Well, that will be my goal when I wake up, hopefully after having gotten a full 8 hours of sleep post-night-shift. See what night shifts can do to your thinking? :-) Okay, I'm not sure how much I can blame on my work schedule.
Mia 5/20/04
As sad as it sounds, I actually feel lighter during these times. The change in perspective can clear away petty worries.
At times, I struggle to remember to savor each day as if it were my last. The next few hours, at least, will be appreciated more – closer to their worth – until I start busying my mind with the mundane again. Though everyday moments can be pretty amazing, too, when they’re fully experienced. That will be my goal today. Well, that will be my goal when I wake up, hopefully after having gotten a full 8 hours of sleep post-night-shift. See what night shifts can do to your thinking? :-) Okay, I'm not sure how much I can blame on my work schedule.
Mia 5/20/04
Friday, October 01, 2004
Coping after a Loved One Takes Their Own Life
This subject came up in a comment to a previous post and I've been sitting on it a long time. Mostly because - I have no idea how one does this. I have been fortunate in that I've never experienced a loved one taking their own life. This is coming up finally, in part, because I came across a posting on this subject that was fascinating and has inspired me to actually try to use this "trackback" feature that so efficiently deleted all of my prior posts. :-) (That is a smirk, not a happy smile). On her Life... or Something Like It blog, Carrie posted about this blog Second-Hand Suicide, which was written by a widow whose husband committed suicide, shooting himself in front of her. I haven't read all of the postings, but from what I've read, it is a fascinating tale of her recovery from such a tragic and traumatizing experience - one that I cannot imagine surviving myself. The Widow (as she calls herself) is truly an inspiration in her buoyancy and her courage in sharing her story.
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