I’m re-reading The Scarlet Letter and finding myself most moved by what I did not notice when I read this as a younger woman. Hester is transformed by her experience of being an outcast and she becomes a “sister of charity” writes Hawthorne, helping the sick and dying of the community. In a most moving passage Hawthorne writes that her Scarlet “A” intended to signify adultery became “transformed to mean Able, so capable was she of helping and caring”. It made me laugh; Hester is a caregiver!
Again this idea that we can go through very hard things and come out the other side --changed and transformed—and better for the experience.
As to how Hester’s transformation occurred Hawthorne writes, “Shame, despair, solitude; these had been her teachers. The scarlet letter was her passport into regions where other women dare not tread.”
Thursday, October 22, 2009
Monday, October 19, 2009
Flu and Fear
Last night we were watching “Finding Forrester” the great movie with Sean Connery as a J. D. Salinger-type writer. And John began to have abdominal pain. Note: See right there, “abdominal pain”…not a tummy ache but “abdominal pain.”
So I begin to ask questions, examine scars, assess levels of pain. No I’m not a doctor or a nurse I just play one in my head. (And yes I did have a Dr, Kildare shirt when I was 13 and crazy about Dr. Kildare and Ben Casey).
Good news: I stayed calm
Bad news: I assumed the worst.
Good news: I packed a small bag; got out the hospital notebook and made sure I had phone numbers and a cell phone.
Bad news: I what?
It was a tummy ache. He slept on the couch. I put myself to bed and made me stay there.
This is what cancer does to you—or to me. I was ready to go, blue notebook in hand, expecting the worst.
It was just the flu.
So I begin to ask questions, examine scars, assess levels of pain. No I’m not a doctor or a nurse I just play one in my head. (And yes I did have a Dr, Kildare shirt when I was 13 and crazy about Dr. Kildare and Ben Casey).
Good news: I stayed calm
Bad news: I assumed the worst.
Good news: I packed a small bag; got out the hospital notebook and made sure I had phone numbers and a cell phone.
Bad news: I what?
It was a tummy ache. He slept on the couch. I put myself to bed and made me stay there.
This is what cancer does to you—or to me. I was ready to go, blue notebook in hand, expecting the worst.
It was just the flu.
Saturday, October 17, 2009
Clergy and the Other Woman
Yes, a big story in yesterday’s New York Times. Front page with amazing photo of a priest baptizing his own child. An article about clergy—Catholic and others—who have had sexual, romantic and intimate relationships with women who were/are parishioners. Relationships with adult women which violate vows of celibacy and perhaps vows of marriage. Trouble in Riverside City.
We react with...what? Indignation? Surprise? The worst thing we do is wonder about the women. But why are we surprised? That is our own complicity in these affairs.
I am reminded of dear Hester Prynne, heroine of Nathaniel Hawthorne’s “Scarlett Letter.” If you ask people what that book is about they will tell you that its about a woman caught in adultery or about a woman who has a child with a man while her husband is away and her penance and punishment is to wear the Scarlet “A”, and yes it is also about how she lives out that fate.
Here is the part we forget: Hester Prynne did have an intimate relationship with a man, and that affair did result in a baby—the devilish girl, Pearl. But there was a man too and that man was Hester Prynne’s pastor. Her lover, her partner, the father of baby Pearl was Hester’s minister, the man charged with her spiritual guidance and the spiritual formation of the community.
So, really, who is the sinner in that story? And why do we always think of the woman? It’s true even now. We blame the woman—both women. When a man has an affair the other woman is condemned for “taking” another woman’s man; blamed for making him stray, and for breaking up a home or family. But we also and often blame the wife too: Her man would not have strayed if she was (insert favorite adjective here: sexy, smart, pretty, attentive, supportive…) Enough. Yes, she is also blamed.
It’s a set up of women. Both women. But what about the man? For Hawthorne’s story what about The Reverend Mister Dimsdale?
Why do we do this? Is it a backhanded way to say that men are so weak they can be lured? That they can “stray” like a dog or a chicken? Or is it something more dangerous and dismaying for women. No matter what happens we blame the woman: the one who is active and the one who is passive. We blame the bad one and the good one. We blame Eve over and over and we forget that Adam came first.
We react with...what? Indignation? Surprise? The worst thing we do is wonder about the women. But why are we surprised? That is our own complicity in these affairs.
I am reminded of dear Hester Prynne, heroine of Nathaniel Hawthorne’s “Scarlett Letter.” If you ask people what that book is about they will tell you that its about a woman caught in adultery or about a woman who has a child with a man while her husband is away and her penance and punishment is to wear the Scarlet “A”, and yes it is also about how she lives out that fate.
Here is the part we forget: Hester Prynne did have an intimate relationship with a man, and that affair did result in a baby—the devilish girl, Pearl. But there was a man too and that man was Hester Prynne’s pastor. Her lover, her partner, the father of baby Pearl was Hester’s minister, the man charged with her spiritual guidance and the spiritual formation of the community.
So, really, who is the sinner in that story? And why do we always think of the woman? It’s true even now. We blame the woman—both women. When a man has an affair the other woman is condemned for “taking” another woman’s man; blamed for making him stray, and for breaking up a home or family. But we also and often blame the wife too: Her man would not have strayed if she was (insert favorite adjective here: sexy, smart, pretty, attentive, supportive…) Enough. Yes, she is also blamed.
It’s a set up of women. Both women. But what about the man? For Hawthorne’s story what about The Reverend Mister Dimsdale?
Why do we do this? Is it a backhanded way to say that men are so weak they can be lured? That they can “stray” like a dog or a chicken? Or is it something more dangerous and dismaying for women. No matter what happens we blame the woman: the one who is active and the one who is passive. We blame the bad one and the good one. We blame Eve over and over and we forget that Adam came first.
Wednesday, October 14, 2009
Lotsa Helping Hands
Today at the YMCA I talked to a man who is caring for his wife who has cancer. It’s been a long haul and we talked about how a hospital can take over your life and how hard it is to “Take care of yourself”, as everyone tells a caregiver.
The hardest thing, he told me, was all the phone calls every night. Everyone wants to know how she’s doing and what the doctor said and what happened today. This man doesn’t email and the phone calls are almost the same one after the (at least ten a night) other. If you have been there you know this is true.
But here is a resource for caregivers and families coping with caregiving and trying to keep everyone connected and up to date. Take a look at the website: Lotsa Helping Hands.com It is a free web-based service that allows you to coordinate care, organize family members and helpers, best of all you can post updates and messages for everyone who wants to know how the patient is doing and what the doctor said today.
You post your update and it is emailed right away to anyone who signs on. Free for the family and free for friends. There is a calendar function to schedule chores, meals, rides etc. And tons of caregiver info as well, including, yes, “Take care of yourself!”
The hardest thing, he told me, was all the phone calls every night. Everyone wants to know how she’s doing and what the doctor said and what happened today. This man doesn’t email and the phone calls are almost the same one after the (at least ten a night) other. If you have been there you know this is true.
But here is a resource for caregivers and families coping with caregiving and trying to keep everyone connected and up to date. Take a look at the website: Lotsa Helping Hands.com It is a free web-based service that allows you to coordinate care, organize family members and helpers, best of all you can post updates and messages for everyone who wants to know how the patient is doing and what the doctor said today.
You post your update and it is emailed right away to anyone who signs on. Free for the family and free for friends. There is a calendar function to schedule chores, meals, rides etc. And tons of caregiver info as well, including, yes, “Take care of yourself!”
Tuesday, October 13, 2009
Beach Surrender
We went to the beach this weekend. I go alone in the morning to pray, writing the names of each person on the edge of the shore and watching to see the water come up and take the prayer away.
This weekend I wrote the names of all of our family members his and mine, spouses and kids, siblings also. I wrote his name and my name and I wrote my workplace too. I live in the gap between wanting to make a complete surrender, making that surrender for an instant or a moment and then, seeing, even as I walk aback to my car fear returns and my wish to control something or someone is already back in my head.
Surrender is such an imperfect process but I do think it is a process. I really do wonder about people who say they have done it and it’s done. Do they really never worry again? Worry means I still think I can affect an outcome. Curiosity might be the antithesis of worry. Being able after surrender, to wonder: “I wonder how God is going to play this one out?”
These are the things I surrender and later worry: His health, our relationship, his family, having time together, my health, money, my job, my stepdaughter, my granddaughter, his sons, my ex-husband, his ex-wife.
Maybe this worry of mine too is something I need to surrender.
Over and over I surrender and return to these things.
The ocean’s rhythm is familiar; in and out, in and out, washing, soothing, wearing me down.
This weekend I wrote the names of all of our family members his and mine, spouses and kids, siblings also. I wrote his name and my name and I wrote my workplace too. I live in the gap between wanting to make a complete surrender, making that surrender for an instant or a moment and then, seeing, even as I walk aback to my car fear returns and my wish to control something or someone is already back in my head.
Surrender is such an imperfect process but I do think it is a process. I really do wonder about people who say they have done it and it’s done. Do they really never worry again? Worry means I still think I can affect an outcome. Curiosity might be the antithesis of worry. Being able after surrender, to wonder: “I wonder how God is going to play this one out?”
These are the things I surrender and later worry: His health, our relationship, his family, having time together, my health, money, my job, my stepdaughter, my granddaughter, his sons, my ex-husband, his ex-wife.
Maybe this worry of mine too is something I need to surrender.
Over and over I surrender and return to these things.
The ocean’s rhythm is familiar; in and out, in and out, washing, soothing, wearing me down.
Tuesday, October 6, 2009
ICU Waiting Room
The first time I was in an Intensive Care waiting room I was 18 years old. It was a Wednesday night in July. I had come home from ballet class and my mother called to say that my father was on the living room floor and she could not wake him up. An hour later the family was gathered in the Intensive Care waiting room at Alleghney General Hospital on Pittsburgh's Northside. My father had had a stroke; he never regained consciousness, and within a few days he was dead. My strongest memories of those few days are the details of that small room and the strangers with whom my family shared that space.
Now, sadly, many years later, I have become a kind of expert on these rooms. Over these years, I have waited for and watched as four brothers and sisters died, and I have learned many things from Intensive Care.
I know how a hospital works and how to work one. I know what to pack and how to dress for this experience. I know what to say to nurses and what not to say to doctors. Like a traveling salesman who knows exactly what hotel room to book in any city or how to create an office in an airplane seat, I know how to "do" Intensive Care.
I have thought, in my more practical moments, that I might write a guide to the practicalities of the ICU, ways of making this difficult experience less stressful. In my more bitter moments I have thought of writing a critical piece lambasting medical personnel and the business part of hospitals for what sometimes is less than humane policy. I have even made lists to help me organize and give order to the chaotic experience of the Intensive Care waiting room.
Physically, most of these rooms are the same: small sitting rooms with an adjoining private bath. There is a TV that is always on and there is a black board and a phone on the wall. Usually there is a round table for eating and a coffee table with old magazines. Once you enter this room nothing else exists. Your world becomes the patient and the four, fifteen minute intervals that you can see him or her. There is no visiting in the regular sense; We are waiters, not visitors in Intensive Care. Those who visit intensive care wait for doctors, wait for news, wait for visiting times, wait for other family to arrive, wait for phone calls, wait for answers and wait to, someday, take another full breath again.
Among the practical advice I might share is the etiquette; how to live among the strangers you meet in this room. You will spend hours and days with them and there is a code of behavior: Take accurate messages, don't hog the phone, you can openly eavesdrop but don't interrupt. You may bring sweets to share and take a turn making coffee, but never ever offer hope to another family. That is their business. Yours is yours. This is a life raft of sorts, and you must be careful in this small space where everyone is filled with fear and tension.
If I did give advice to a newcomer to ICU I’d provide a primer on terminology. There are so many code words ( "codes" being one of them) and specialized terms. You listen to medical explanations and become conversant with medical jargon that is both meaningful and meaningless: "Counts are up (or down)", checking "N.G.'s" platelets, and vitals." You care about all of these things intensely and you don't really give a damn. Will he live? Will she die?
There is also a lesson on human relations I have learned in ICU, an insightful paradox I have observed over and over in my days in these waiting rooms. At the very time when a person - or a family - must turn fully inward to care for themselves and to will the survival of their loved one, there also emerges a most generous compassion. I have seen race, class and age differences dissolve instantly. I have watched people change diapers and tires for, and share food and fears with, others who, in any other setting, might be spurned or shunned.
But these are not the real lesson of the ICU waiting room. The real lesson is something that is harder to put in a handbook. Each time I sit for days or nights (they are the same) in Intensive Care, I relearn this. Sometimes I wonder if that is why I have to go back. I'm still trying to get the lesson.
This big lesson is not about medicine or any scientific fact. It’s about relativity and priorities. I have seen it each time as the details of “life” are left outside the ICU door. Most of what we care about when we are engaged in the rest of our lives, in what we erroneously think of as "real" - that is, the life we were living before we got the call that said, "Come to the hospital" - stops at this doorway. What people in Intensive Care waiting rooms know with certainty is that this is real life, not what we left at home by the phone.
I also know that few of us are wise enough to learn from someone else's experience and so we live our lives as if the day-to-day is real and that we will have time to do things later. It's not until that phone call and it is your mother/sister/brother or child that you get to see how fast "later" can show up.
The big lesson of Intensive Care is just what doesn't matter after all. For example: grade point average, where you went to school, what you drive, credit rating, house size, annual income, clothes and not even work. No one in Intensive Care talks of these things.
And so in one screech of tires, one lump, one scream, or one unexpected bit of blood, priorities change. In a single afternoon in Intensive Care, watching life drain out of someone you love, you get it.
It would be a gift to package the power of this perspective changing experience, but it doesn't work that way. I have tried, but it's a slippery lesson. It only comes when it does and only when we are open to it.
Now, sadly, many years later, I have become a kind of expert on these rooms. Over these years, I have waited for and watched as four brothers and sisters died, and I have learned many things from Intensive Care.
I know how a hospital works and how to work one. I know what to pack and how to dress for this experience. I know what to say to nurses and what not to say to doctors. Like a traveling salesman who knows exactly what hotel room to book in any city or how to create an office in an airplane seat, I know how to "do" Intensive Care.
I have thought, in my more practical moments, that I might write a guide to the practicalities of the ICU, ways of making this difficult experience less stressful. In my more bitter moments I have thought of writing a critical piece lambasting medical personnel and the business part of hospitals for what sometimes is less than humane policy. I have even made lists to help me organize and give order to the chaotic experience of the Intensive Care waiting room.
Physically, most of these rooms are the same: small sitting rooms with an adjoining private bath. There is a TV that is always on and there is a black board and a phone on the wall. Usually there is a round table for eating and a coffee table with old magazines. Once you enter this room nothing else exists. Your world becomes the patient and the four, fifteen minute intervals that you can see him or her. There is no visiting in the regular sense; We are waiters, not visitors in Intensive Care. Those who visit intensive care wait for doctors, wait for news, wait for visiting times, wait for other family to arrive, wait for phone calls, wait for answers and wait to, someday, take another full breath again.
Among the practical advice I might share is the etiquette; how to live among the strangers you meet in this room. You will spend hours and days with them and there is a code of behavior: Take accurate messages, don't hog the phone, you can openly eavesdrop but don't interrupt. You may bring sweets to share and take a turn making coffee, but never ever offer hope to another family. That is their business. Yours is yours. This is a life raft of sorts, and you must be careful in this small space where everyone is filled with fear and tension.
If I did give advice to a newcomer to ICU I’d provide a primer on terminology. There are so many code words ( "codes" being one of them) and specialized terms. You listen to medical explanations and become conversant with medical jargon that is both meaningful and meaningless: "Counts are up (or down)", checking "N.G.'s" platelets, and vitals." You care about all of these things intensely and you don't really give a damn. Will he live? Will she die?
There is also a lesson on human relations I have learned in ICU, an insightful paradox I have observed over and over in my days in these waiting rooms. At the very time when a person - or a family - must turn fully inward to care for themselves and to will the survival of their loved one, there also emerges a most generous compassion. I have seen race, class and age differences dissolve instantly. I have watched people change diapers and tires for, and share food and fears with, others who, in any other setting, might be spurned or shunned.
But these are not the real lesson of the ICU waiting room. The real lesson is something that is harder to put in a handbook. Each time I sit for days or nights (they are the same) in Intensive Care, I relearn this. Sometimes I wonder if that is why I have to go back. I'm still trying to get the lesson.
This big lesson is not about medicine or any scientific fact. It’s about relativity and priorities. I have seen it each time as the details of “life” are left outside the ICU door. Most of what we care about when we are engaged in the rest of our lives, in what we erroneously think of as "real" - that is, the life we were living before we got the call that said, "Come to the hospital" - stops at this doorway. What people in Intensive Care waiting rooms know with certainty is that this is real life, not what we left at home by the phone.
I also know that few of us are wise enough to learn from someone else's experience and so we live our lives as if the day-to-day is real and that we will have time to do things later. It's not until that phone call and it is your mother/sister/brother or child that you get to see how fast "later" can show up.
The big lesson of Intensive Care is just what doesn't matter after all. For example: grade point average, where you went to school, what you drive, credit rating, house size, annual income, clothes and not even work. No one in Intensive Care talks of these things.
And so in one screech of tires, one lump, one scream, or one unexpected bit of blood, priorities change. In a single afternoon in Intensive Care, watching life drain out of someone you love, you get it.
It would be a gift to package the power of this perspective changing experience, but it doesn't work that way. I have tried, but it's a slippery lesson. It only comes when it does and only when we are open to it.
Sunday, October 4, 2009
Cooking and Cancer
Tonight, for our dinner, I made a meal that was part of a food article in last Sunday’s New York Times Magazine: Pork chops with pecan and ginger sauce; polenta with goat cheese and rosemary, and apples grilled with Balsamic maple marinade.
I know, amazing combinations but even more amazing is that I shopped, prepped, cooked and served this lovely and delicious meal. This is something I could not possible have done 18 months ago.
I realized that this is another of the unintended and unexpected consequences of cancer: I had to learn to cook. Before John’s cancer I may have made a chicken breast—no not even that—I made –maybe—a casserole. Then with cancer and chemo we had a dilemma: He could not cook and if our friends did the cooking we would die of lasagna poisoning. So my dear friend Susan became my Cooking sponsor—teasing and gently nudging me toward making food from ingredients—yes other food items that are combined to create cooked food. We began with Bisquick—still a marvel—the “Magic Pie”. And then I tried a few other expereiments...some good and some edible and some just funny.
What shifted was the awareness that having ingredients on hand—it’s called a pantry—I learned that from my other dear friend Leslie—could lead to foods that tasted good.
Many more experiments later, last week I found myself reading a recipe—a complicated one that included glazing pecans and whisking dark brown sugar with Balsamic vinegar. And tonight voila! Dinner.
I know, amazing combinations but even more amazing is that I shopped, prepped, cooked and served this lovely and delicious meal. This is something I could not possible have done 18 months ago.
I realized that this is another of the unintended and unexpected consequences of cancer: I had to learn to cook. Before John’s cancer I may have made a chicken breast—no not even that—I made –maybe—a casserole. Then with cancer and chemo we had a dilemma: He could not cook and if our friends did the cooking we would die of lasagna poisoning. So my dear friend Susan became my Cooking sponsor—teasing and gently nudging me toward making food from ingredients—yes other food items that are combined to create cooked food. We began with Bisquick—still a marvel—the “Magic Pie”. And then I tried a few other expereiments...some good and some edible and some just funny.
What shifted was the awareness that having ingredients on hand—it’s called a pantry—I learned that from my other dear friend Leslie—could lead to foods that tasted good.
Many more experiments later, last week I found myself reading a recipe—a complicated one that included glazing pecans and whisking dark brown sugar with Balsamic vinegar. And tonight voila! Dinner.
Friday, October 2, 2009
Follow Up NYOH Day
This afternoon I met John at the New York Oncology Hematology Center for his follow-up appointment and blood work. Driving there I could feel the old feelings revive. The place is decent; the people are good and very caring. I expected to have a fearful and negative reaction when I went thru those wide air-pressure doors but not so. Yes, I felt the fear and all those questions racing thru my head: What if the blood work isn’t good this time? What is they see something?
So yes all the worries were there but also a surprising good memory too. For those six months when we met there every week—John coming from his office and me coming from mine--bringing bags of books to read, stopping to pick up food for us and some great treat for the Staff and other clients—there was a good feeling mixed in with all the others. John and I spent four hours there each week. It was our talking time, gossip time, reading to each other time. We got to know other patients—and families—on the same schedule. We saw people start to look better and yes, we saw people slowly look much worse too. But there was a lot of care and a lot of caring. Those memories were also revived when I walked into NYOH today.
Today they did John’s blood work and a cursory physical exam. He had to answer questions about his bowel movements and his urinary system in front of me. That’s real intimacy! Lisa, the PA was warm and easy to talk to. She confirmed that it may take another year to see if the numbness and neuropathy will ever leave his feet. That is the very physical souvenir of the chemo, and she looked at his belly and scars—the remaining souvenir of surgery.
Today’s blood work was fine but the CEA—the cancer marker—takes a longer lab. So while I feel better now, I’ll feel better on Monday after we know that blood test is OK too.
I continue to play with, “What will we do if and when it isn’t OK?” But for today, this Friday night, we’re eating calzones and making love.
So yes all the worries were there but also a surprising good memory too. For those six months when we met there every week—John coming from his office and me coming from mine--bringing bags of books to read, stopping to pick up food for us and some great treat for the Staff and other clients—there was a good feeling mixed in with all the others. John and I spent four hours there each week. It was our talking time, gossip time, reading to each other time. We got to know other patients—and families—on the same schedule. We saw people start to look better and yes, we saw people slowly look much worse too. But there was a lot of care and a lot of caring. Those memories were also revived when I walked into NYOH today.
Today they did John’s blood work and a cursory physical exam. He had to answer questions about his bowel movements and his urinary system in front of me. That’s real intimacy! Lisa, the PA was warm and easy to talk to. She confirmed that it may take another year to see if the numbness and neuropathy will ever leave his feet. That is the very physical souvenir of the chemo, and she looked at his belly and scars—the remaining souvenir of surgery.
Today’s blood work was fine but the CEA—the cancer marker—takes a longer lab. So while I feel better now, I’ll feel better on Monday after we know that blood test is OK too.
I continue to play with, “What will we do if and when it isn’t OK?” But for today, this Friday night, we’re eating calzones and making love.
Thursday, October 1, 2009
Fighting to Remember
For two days we fought like cats and dogs—or maybe like Mars and Venus. All the things that the experts and relationship books say not to do we did: Brought up the past, said mean things, accused, said “always” and “never”, got loud, got silent, went to bed mad, didn’t go to bed at all. And then we cried. We sat on the bed sobbing. Were we really going to end this? What was this fury and terrible desperate pain between us? And inside of me I was asking, “Why now?” The past several months had been so happy; we’d had such a wonderful summer; we were making plans. We were both shaking our heads and reeling from our battle. And then…
And then yesterday I came home from work to a phone message from the oncologist. A reminder call that blood tests and follow up cancer screening is this Friday. Neither of us had remembered. Neither of us had put it on the calendar. But here it was and we both knew. Deep down in the body or mind we both knew the scary time was coming again and the risk to us was back. Now even more frightening because we had gotten comfortable again.
Cancer had gone on a long trip.
And we just got a postcard saying, “Be home soon; wish I was there.”
And then yesterday I came home from work to a phone message from the oncologist. A reminder call that blood tests and follow up cancer screening is this Friday. Neither of us had remembered. Neither of us had put it on the calendar. But here it was and we both knew. Deep down in the body or mind we both knew the scary time was coming again and the risk to us was back. Now even more frightening because we had gotten comfortable again.
Cancer had gone on a long trip.
And we just got a postcard saying, “Be home soon; wish I was there.”
Tuesday, September 29, 2009
The High Cost of Caregiving for Women
65% of people who need caregivers rely on family, friends and neighbors for assistance. The National Caregiving Council estimates that 75% of caregivers are women. The average caregiver is female, 46 years old, married with children and works outside the home.
The odds are good that you are or you know one of these women. You might not know that caregiving is a health hazard and career hazard for women.
Metropolitan Life has studied caregiving and its economic consequences. They described the career consequences of women who are caregivers as follows:
33% decreased their work hours
29% passed up a promotion or training
22% took a leave of absence
20% went from full time to part time
20% quit their jobs
13 % retired early
You can see the career consequences and easily calculate the economic impact on a caregiver’s family. But there are also health implications for the caregiving woman. Another study by Met Life, comparing caregivers to non-caregivers, showed that caregivers have a 28% higher incidence of hypertension, heart disease, and poorer immune function. We also know that caregivers very often put off their own medical check up’s, tests and health screenings because they are focused on the health and medical needs of the loved ones they care for.
There is so much more than just the time and stress and worry.
The odds are good that you are or you know one of these women. You might not know that caregiving is a health hazard and career hazard for women.
Metropolitan Life has studied caregiving and its economic consequences. They described the career consequences of women who are caregivers as follows:
33% decreased their work hours
29% passed up a promotion or training
22% took a leave of absence
20% went from full time to part time
20% quit their jobs
13 % retired early
You can see the career consequences and easily calculate the economic impact on a caregiver’s family. But there are also health implications for the caregiving woman. Another study by Met Life, comparing caregivers to non-caregivers, showed that caregivers have a 28% higher incidence of hypertension, heart disease, and poorer immune function. We also know that caregivers very often put off their own medical check up’s, tests and health screenings because they are focused on the health and medical needs of the loved ones they care for.
There is so much more than just the time and stress and worry.
Thursday, September 24, 2009
Roll Away the Stone
Big stuff today. Talking to my therapist about this relationship and about John’s cancer. Trying to sort out what is my over-the-top fear and what is diagnostic and statistically probable in colon cancer. We were talking about that and my sense of urgency to make some peace with all of this when I felt an idea or a realization move from the center of my body to my mouth and become words.
This is what I said to her: “I am afraid that if the cancer comes back, and if he dies, it is because I allowed this relationship to be, and I’m afraid that if the cancer comes back and he dies that it is my punishment; I will lose him and I will be humiliated.”
Even as I said those words I was amazed that it was coming out of me and I knew that was the true fear. Fear not just of cancer --that will hurt him or kill him—awful all by itself—but that in some way it is a punishment of me—and that the punishment takes the form of abandonment and humiliation.
Yes, of course these are my “issues” fear of abandonment and pervasive shame. But Holy Cow---the way the fear was coming to me was absolutely Biblical.
I could see her reaction as I spoke and we both got it that this is not just a psychological issue but a spiritual and even theological issue.
But here is what is both troubling and baffling me. I did not grow up in a fire and brimstone family; no one taught me to fear a punishing God; all of my spiritual practice and professed belief is in a loving God. But these fears belong to another belief system that I have not had any awareness was operating inside me.
Have I channeled my father’s early Catholic God? Is this cultural? Past life echoes? The collective unconscious? Really, it makes me wonder and it makes me pray.
This deeply held and silently operating belief is in my way. I knew it and my therapist knew it. I said to her, “This is in the way; this is why I cannot decide and why I cannot think clearly.” She had the exact image as I spoke this fear: There is a large boulder in my path.
I knew at once that even the image was Biblical. There is a stone blocking awareness, clarity and peace. The stone is blocking my belief in a loving God and in God’s will.
Who will roll away the stone?
This is what I said to her: “I am afraid that if the cancer comes back, and if he dies, it is because I allowed this relationship to be, and I’m afraid that if the cancer comes back and he dies that it is my punishment; I will lose him and I will be humiliated.”
Even as I said those words I was amazed that it was coming out of me and I knew that was the true fear. Fear not just of cancer --that will hurt him or kill him—awful all by itself—but that in some way it is a punishment of me—and that the punishment takes the form of abandonment and humiliation.
Yes, of course these are my “issues” fear of abandonment and pervasive shame. But Holy Cow---the way the fear was coming to me was absolutely Biblical.
I could see her reaction as I spoke and we both got it that this is not just a psychological issue but a spiritual and even theological issue.
But here is what is both troubling and baffling me. I did not grow up in a fire and brimstone family; no one taught me to fear a punishing God; all of my spiritual practice and professed belief is in a loving God. But these fears belong to another belief system that I have not had any awareness was operating inside me.
Have I channeled my father’s early Catholic God? Is this cultural? Past life echoes? The collective unconscious? Really, it makes me wonder and it makes me pray.
This deeply held and silently operating belief is in my way. I knew it and my therapist knew it. I said to her, “This is in the way; this is why I cannot decide and why I cannot think clearly.” She had the exact image as I spoke this fear: There is a large boulder in my path.
I knew at once that even the image was Biblical. There is a stone blocking awareness, clarity and peace. The stone is blocking my belief in a loving God and in God’s will.
Who will roll away the stone?
Throw Them Over the Edge
Managing my own thinking—and not scaring myself to pieces –is one of my ongoing challenges as a caregiver and partner. Here is my new strategy to deal with scary thoughts.
Every morning I walk at the YMCA. The track is elevated and overlooks the large gym floor below. That’s a help often because I get to watch the Pilates class or the killer Boot Camp group grunting and puffing thru a workout that would kill most Marines. Watching them makes me very happy to be walking or jogging.
Today as the fear thoughts started in on me I had a new thought, “Throw them over”. So each time my head cooked up a new “What if…” scenario I’d say “Nope, over you go.” and toss that thought and picture over the railing and onto the gym floor below. It also helped to imagine these scary thoughts as scared, bratty little kids so when they land on the gym floor they can run around and wear them selves out—away from me!
Every morning I walk at the YMCA. The track is elevated and overlooks the large gym floor below. That’s a help often because I get to watch the Pilates class or the killer Boot Camp group grunting and puffing thru a workout that would kill most Marines. Watching them makes me very happy to be walking or jogging.
Today as the fear thoughts started in on me I had a new thought, “Throw them over”. So each time my head cooked up a new “What if…” scenario I’d say “Nope, over you go.” and toss that thought and picture over the railing and onto the gym floor below. It also helped to imagine these scary thoughts as scared, bratty little kids so when they land on the gym floor they can run around and wear them selves out—away from me!
Wednesday, September 23, 2009
Scared to My Roots
I had a hair appointment today. I love the woman who does my hair. She has the best color sense and a gift for seeing the whole person: face shape, hair type, and personality. She was the person who told me, “You have 43 cowlicks; your style will always be messy, sexy layers with lots of movement.” After learning that about my hair I now just ask for “messy sexy layers” and my hair looks and feels like me. And it moves a lot. Just like me.
She is also a great people person. We talk about relationships, men, sex, aging, work, and we talk about his cancer and how that changed my life. Therapy and great hair for just one, well, pretty big price.
Today when I sat down she said, “I’ve been worried about you.” She told me about another client that she’d mentioned before. This other client, a man, also had colon cancer about a year before John. She has used his story as a way to console and encourage me. The other guy did well and was always doing well. He just remarried a few months ago.
But now, bad news for this man I never met and whose name I don’t know. Cancer has returned and it’s wicked. Pancreatic cancer at full blast and “He has”, she tells me, standing very still behind my chair, looking at me in the mirror, “he has a year to live.”
I sit for 30 minutes while that information and the new warm-toned, golden hair color penetrates to my roots. Cancer back. New marriage. A year to live. Am I looking in my own mirror?
She is also a great people person. We talk about relationships, men, sex, aging, work, and we talk about his cancer and how that changed my life. Therapy and great hair for just one, well, pretty big price.
Today when I sat down she said, “I’ve been worried about you.” She told me about another client that she’d mentioned before. This other client, a man, also had colon cancer about a year before John. She has used his story as a way to console and encourage me. The other guy did well and was always doing well. He just remarried a few months ago.
But now, bad news for this man I never met and whose name I don’t know. Cancer has returned and it’s wicked. Pancreatic cancer at full blast and “He has”, she tells me, standing very still behind my chair, looking at me in the mirror, “he has a year to live.”
I sit for 30 minutes while that information and the new warm-toned, golden hair color penetrates to my roots. Cancer back. New marriage. A year to live. Am I looking in my own mirror?
Lying Awake
Too many “What if’s?” I lie awake and they flood me: What if the next blood test is bad? What if the mark on his leg is more cancer? What if I have to face this again? For him? For me? What if I lose my job? Will my friends make it through another round with me? It was hard on everyone last time; everyone worked so hard to help me and us. Under all of this is the big one: What if we don’t have time? What if we don’t get to live out the love and hope and fun we have looked forward to? What if he dies while his kids are so angry? Will there be enough time for them to reconcile and not out of guilt? What will happen to them if they are forced to choose guilt or fear? Is there enough therapy in the world?
I keep trying to find a solution to the unsolvable. I keep wanting to make the equation come out right. But I don’t know how to solve for X and I don’t know the formula for his happiness, my peace, his kids to be well. The shortcut terrible solution I offer him is go back, go back.
They will never know how many times I sent him home and he wouldn’t go back.
I keep trying to find a solution to the unsolvable. I keep wanting to make the equation come out right. But I don’t know how to solve for X and I don’t know the formula for his happiness, my peace, his kids to be well. The shortcut terrible solution I offer him is go back, go back.
They will never know how many times I sent him home and he wouldn’t go back.
Monday, September 21, 2009
Caregiving Touches All of Us
Former First lady Rosalyn Carter said this about caregiving:
“There are only four kinds of people in the world—those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
“There are only four kinds of people in the world—those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
Saturday, September 19, 2009
Wonder Woman's Bracelets
At the end of the day
It’s your bracelets I want.
Not your hair
Or silly headband
Not the girdle
Belting your abs of steel.
Not even your courage
unadorned.
But the bracelets?
Yes, the bracelets
that can stop death.
It’s your bracelets I want.
Not your hair
Or silly headband
Not the girdle
Belting your abs of steel.
Not even your courage
unadorned.
But the bracelets?
Yes, the bracelets
that can stop death.
Tuesday, September 15, 2009
Patrick Swayze
The news that Patrick Swayze has died makes me so sad. Like many people I loved him in Dirty Dancing and loved that he was a handsome but not quite classic handsome guy. And then over the past 20 months we were pulling for him even knowing that his cancer was bad and that his time was short. Watching his fight to work and love while undergoing fierce treatment made him all the more admirable and yes, manly. Prayers for him and for his family. And in his honor today let’s put on the music and dance.
Wednesday, September 9, 2009
Colonoscopy Done
All done and happily at home. Still a tad woozy from the magnificent drugs. (No wonder Michael Jackson had his own.) Results were fine. Doctor was great. Karma: It was John’s doctor.
Here’s my lesson though: One of my real fears was that I might have colon cancer as a kind of punishment for this relationship. Ok, I know that I say I believe in a loving God, but at times like this I must really have a mean Old Testament God lurking somewhere inside my belief system.
Other cancer caregivers have you had these kinds of fears about your health?
For the rest of today I just say thank you to that and all other gods and look forward to a lovely chicken breast and baked potato for supper.
Tonight at 8pm Obama speaks to Congress on healthcare. That too is part of Love and Cancer. Let’s listen in at 8PM.
Here’s my lesson though: One of my real fears was that I might have colon cancer as a kind of punishment for this relationship. Ok, I know that I say I believe in a loving God, but at times like this I must really have a mean Old Testament God lurking somewhere inside my belief system.
Other cancer caregivers have you had these kinds of fears about your health?
For the rest of today I just say thank you to that and all other gods and look forward to a lovely chicken breast and baked potato for supper.
Tonight at 8pm Obama speaks to Congress on healthcare. That too is part of Love and Cancer. Let’s listen in at 8PM.
Tuesday, September 8, 2009
Colonoscopy Mine
It’s 6:30. Normally dinner time but tonight I am drowning in 64 ounces of peach flavored Vitamin Water and Miralax. Yes I am doing it. I am –finally—having my colonoscopy tomorrow. So it’s prep time: Four Ducolax and a big bottle of Miralax with the once a favorite now doomed to bad associations, peach flavored water.
I’m more than halfway there but I made a terrible mental calculation. When I read that I needed to drink 8 ounces every fifteen minutes my brain told me that was four glasses. Yes, you see why I am a writer and not a scientist? Do the math I did not do—it's way more than four glasses.
Ok, I’m back now…uh huh, the stuff is working. I put the new Vogue in the bathroom and –I’ll be wanting to change this—“Gourmet Rhapsody”—the new novel by Muriel Barbery—she wrote the amazing book “The Elegance of the Hedgehog” but the new book is about the food critic from Hedgehog and yes about food. Food! Foood! Oh God food! I swear I’ll never drink peach Vitamin Water again and will I ever want to eat food again. Be right back….
So yes I am doing this thing that I have put off. And no the issue is not this prep and it’s not the procedure. Look up my bum all you want. (Truth: I will shave my legs tonight and use self-tanner—so what if I’m unconscious—I’m naked and I’m vain.)
No, the real issue is what happens after the procedure. In an instant I can be back in that miserable little curtained partition with John—now almost two years ago—and the doctor’s words, “you have a problem.” I really do like that he did not say “we..” He was clear about that; he said “YOU have a problem.” Then he used the words “growth” “cancer” and “surgeon”. The rest is history and the rest is on this blog—(if you joined us late go back to the early entries.) John had no symptoms and no problems. We were planning to go out to lunch but instead we went to a surgeon and went home to make a million medical phone calls.
The other issue is this: I’ve seen colon cancer up close and I’ve seen the surgery aftermath up close and I’ve seen the chemo up close and as wonderful as John has been through all I of it—it was pretty shitty.
That seems like an appropriate place to end. More to come.
I’m more than halfway there but I made a terrible mental calculation. When I read that I needed to drink 8 ounces every fifteen minutes my brain told me that was four glasses. Yes, you see why I am a writer and not a scientist? Do the math I did not do—it's way more than four glasses.
Ok, I’m back now…uh huh, the stuff is working. I put the new Vogue in the bathroom and –I’ll be wanting to change this—“Gourmet Rhapsody”—the new novel by Muriel Barbery—she wrote the amazing book “The Elegance of the Hedgehog” but the new book is about the food critic from Hedgehog and yes about food. Food! Foood! Oh God food! I swear I’ll never drink peach Vitamin Water again and will I ever want to eat food again. Be right back….
So yes I am doing this thing that I have put off. And no the issue is not this prep and it’s not the procedure. Look up my bum all you want. (Truth: I will shave my legs tonight and use self-tanner—so what if I’m unconscious—I’m naked and I’m vain.)
No, the real issue is what happens after the procedure. In an instant I can be back in that miserable little curtained partition with John—now almost two years ago—and the doctor’s words, “you have a problem.” I really do like that he did not say “we..” He was clear about that; he said “YOU have a problem.” Then he used the words “growth” “cancer” and “surgeon”. The rest is history and the rest is on this blog—(if you joined us late go back to the early entries.) John had no symptoms and no problems. We were planning to go out to lunch but instead we went to a surgeon and went home to make a million medical phone calls.
The other issue is this: I’ve seen colon cancer up close and I’ve seen the surgery aftermath up close and I’ve seen the chemo up close and as wonderful as John has been through all I of it—it was pretty shitty.
That seems like an appropriate place to end. More to come.
Monday, September 7, 2009
Labor Day
Labor Day is the best holiday weekend, coming, as it does, with nice weather and no obvious family obligations. There is, however, a strum of anxiety that crosses these few precious days. This is the last call of summer and we want to order one more round of fun before the house lights come up on the day after Labor Day. In that harsh back-to-work glare we’ll have to take another look at the lists and the lives that summer’s warm intoxication allowed us to deny.
There is something good for us though in this Labor Day process. This is the time when many of us sort and discern and make our decisions for the coming year.
The New Year begins now, and we know that in our bones. For at least twelve years we started over on the first Tuesday in September. Back to school meant that we could try out a new identity forged over the summer. Maybe your look changed. Had you let your hair grow? Or cut it short? Would everyone sense the sophistication you gained visiting your sister in L.A.? Back in June you were that same old kid, but every September a new you debuted the day after Labor Day.
There were inner changes as well. In September you promised yourself you'd be more popular, more friendly, more outgoing. Or maybe you decided you'd study more and hang out with the good kids. Every single year you could try something new. You could be a scholar this year after a past as the class clown. Or you could be the friendly one after years as the grind and curve setter. The opportunity for a re-do came every year the day after Labor Day. And it still does.
No, January isn’t the right time for New Year’s resolutions. How could it be? We’re too busy with the holidays and broke from gift giving. Are you really going to create a new body or mind or spirit in the middle of all that? Come on.
September is the time to not only promise yourself a new exercise program, but to start it. It's light after work and it's not too cold in the morning. September is also much better than January for starting a diet. You are coming off a summer of fresh foods, and you’re not bloated by 30 days of holiday treats and booze. As for a new look; who can afford one in January? You wear your name off all your plastic just trying to get through the holidays, and then tax time is creeping in.
No, the new look and image and relationships you have been promising yourself come in September just as they did when you were a kid. Remember how it worked in Junior High? You decided to wear a tweed jacket because that summer you discovered poetry (or girls who liked poets). Or you promised yourself that you’d set your hair in a smooth flip every morning to look like those girls in the magazines.
In September you could try out in public all the looks you had practiced in the mirror behind your bedroom door. So what if the good intentions only last a few weeks. Some part of it always stuck, some part of the “new you” was the real you-- and real change-- and that's how you moved on.
We still can. The new you begins now. This is the time to be kinder, nicer, smarter, to listen more, eat less and hang out with the good kids. It's a new year. Happy New Year!
There is something good for us though in this Labor Day process. This is the time when many of us sort and discern and make our decisions for the coming year.
The New Year begins now, and we know that in our bones. For at least twelve years we started over on the first Tuesday in September. Back to school meant that we could try out a new identity forged over the summer. Maybe your look changed. Had you let your hair grow? Or cut it short? Would everyone sense the sophistication you gained visiting your sister in L.A.? Back in June you were that same old kid, but every September a new you debuted the day after Labor Day.
There were inner changes as well. In September you promised yourself you'd be more popular, more friendly, more outgoing. Or maybe you decided you'd study more and hang out with the good kids. Every single year you could try something new. You could be a scholar this year after a past as the class clown. Or you could be the friendly one after years as the grind and curve setter. The opportunity for a re-do came every year the day after Labor Day. And it still does.
No, January isn’t the right time for New Year’s resolutions. How could it be? We’re too busy with the holidays and broke from gift giving. Are you really going to create a new body or mind or spirit in the middle of all that? Come on.
September is the time to not only promise yourself a new exercise program, but to start it. It's light after work and it's not too cold in the morning. September is also much better than January for starting a diet. You are coming off a summer of fresh foods, and you’re not bloated by 30 days of holiday treats and booze. As for a new look; who can afford one in January? You wear your name off all your plastic just trying to get through the holidays, and then tax time is creeping in.
No, the new look and image and relationships you have been promising yourself come in September just as they did when you were a kid. Remember how it worked in Junior High? You decided to wear a tweed jacket because that summer you discovered poetry (or girls who liked poets). Or you promised yourself that you’d set your hair in a smooth flip every morning to look like those girls in the magazines.
In September you could try out in public all the looks you had practiced in the mirror behind your bedroom door. So what if the good intentions only last a few weeks. Some part of it always stuck, some part of the “new you” was the real you-- and real change-- and that's how you moved on.
We still can. The new you begins now. This is the time to be kinder, nicer, smarter, to listen more, eat less and hang out with the good kids. It's a new year. Happy New Year!
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