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.

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?

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!

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?

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.

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.”

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.

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.

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.

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.

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!

Nurses are Your Ally

A friend’s mother has anal cancer. They begin the process. I give her the best of my experience: the notebook, the tips on chemo, the caregiver resources, the importance of nurses, how to ask a nurse a question so she can give you a straight answer. Another friend’s mother has just had her second surgery for throat cancer. She has had her larynx removed. Bad enough but then the complications begin: emergency surgery, hyperbaric chamber, feeding, bleeding. She is so ill. The siblings all live far away so the “When do I go?” begins. I share my strategies and perspective. Again, “talk to the nurses not the doctors.” Another friend talks to me about her sister-in-law’s ovarian cancer. It’s a year after surgery, chemo, chemo again, radiation and now more chemo. She talks about the nurses.

I remember the many nurses who helped me through my brothers’ illnesses and deaths. I remember the day that a nurse waited until the doctor had left the room—he had just given me a lengthy explanation of my brother Larry’s diagnosis—Anti-Trypsin Disorder—and the nurse must have seen me trying to make sense of the info and reaching for solutions. She took me by the shoulders and held me very still and said, “Your brother is very ill.” I’m sure I said “uh-huh, the doctor was just explaining that…” and she looked at me again and said, still holding my shoulders, “Your brother is very ill.” She may have said it three times before I realized that she was saying—in the only language she was legally able to use, “Your brother is dying” . It was so helpful and gave me such clarity about what I needed to do and not do going forward. He was dead in four months but the doctor had never communicated the seriousness of his condition. The nurse did and told me what I needed to make decisions and plans.

In all of the conversations about healthcare and end of life care and long-term care I think about the nurses who see up close what families struggle with and I remember how they helped me to take better care of my brothers at the end of their lives.

Gift of Desperation

I have been thinking about the good of this year. I didn’t plan on a complicated relationship and cancer, but who does? I have written so much here about what is scary, hard, worrisome and painful. But there is another side and I have to stop and remind myself of that sometimes too.

I’m not a fan of the “cancer is a gift and made my life more meaningful” school of thought. There are many other gifts I’d like and many other ways I’d prefer to find meaning. I’ll take community service and beach vistas over cancer any day but here we are.

Some of the good?

In the last 24 months I have had to get on my knees and surrender more than I ever have before—and I have surrendered more deeply. This has certainly affected my relationship with my faith and spiritual life. I began working with a spiritual director and began to study spiritual direction myself. The relationship and the bonus of living with cancer and being a caregiver with a Scarlet Letter got me back to doing intensive therapy and doing that work at a new level of intensity as well.

That willingness came from the gift of desperation.

And out of that has come new understandings of myself, my family, new ways of thinking and from that new ways of behaving. It’s a work in progress for sure but I can see the changes that I wanted for years but could not quite get to. My thinking—ever so slowly—is changing and thanks to the gift of desperation—I am getting closer to the woman I want to be.

And yes another gift has been sensuality and sexuality. because I was pushed—the gift of frustration and annoyance at the reticence to talk about cancer in the official world of Cancer Land—I started reading and writing and talking about sex and cancer, and well, you can’t do that with out doing your own home work, so now I also have a great sex life and who would ever have guessed that would be an outcome of these really tumultuous years.

What the Body Says

Yesterday even I was too aware of the constant fear and checking with myself to see if this is the whole of it. It’s not but it is too much I think. The proportions are off. There was so much good on vacation and so much good a lot of the time. One of the very good parts and the unexpected—No the American Cancer Society will still not talk of this—the sex is wonderful. I keep reading all these “sex isn’t everything and intimacy is more than sex” articles but really. We live in these “skin bags” as the Buddhists call them, and the mind body connection is real. So sex is not just of the body. Can’t have it both ways. As a dancer and athlete I know the power of what can both be stored in and accessed through the body. We can access our past, memory, emotion and self knowledge through the human body. It is that powerful. And then at the last minute we pull back and say, “Well sex isn’t all that important? Is that prudery? self-consciousness? American reticence or just another kind of fear?

I’m not immune. When I consider this relationship I think, “Too much sex?” and “Too much emphasis on sex?” Is it compensation for something else? But again I come back to the body. “The body does not lie” Jung wrote and Marion Woodman says “when in doubt ask the body.” But sometimes we need a translator for the body’s language.

Vacation Reentry

Home from vacation.

It was a week of eating well (Federal Hill in Providence RI), art (Brown and RISD Museums), books (The Providence Athenaeum, and 20-plus used bookstores across Rhode Island and Massachusetts) and yes, the beaches. Ocean smells and swells for days.

We had fun, we laughed and we talked as we drove. There is something about that side-by-side parallelism in the car that allows intimate conversations. The “what-if” talks and the “do you think…” questions.

But this is where I write about cancer and so I must admit that cancer was with us too. I noticed two brown spots on his thigh. Are they new? Had I not seen these before? There is little real estate of the flesh we don’t know of each other. Are these age spots or melanoma? This kind of thinking is a constant part of love in the time of cancer.

On the long drive we talked about later, the future and when we retire. I participate and enjoy planning the fantasy homes (beach or city or both?) but there is a parallel conversation that runs inside me: Will he be alive next year? Will he be in chemo again? Will the beautiful fabric we bought for our bedroom chairs be a painful reminder? Will I sit on that pale ocean blue and sand beige paisley alone some day remembering when we spotted it in that shop on this vacation?

Cancer in the News

Here is another soft spot or minefield for those who love in the time of cancer. While John is in-between treatments and we live in a kind of honeymoon state…no obvious signs but blood work in thirty days (tick, tick tick…) I read the papers.

This week two cancer stories:

Breast cancer research shows that even the teeniest involvement of a cancer cell in a lymph node signals high probability of recurrence. (They use the word "relapse" but that make cancer sound like an addiction and that it comes back thru the failing of the individual. We blame the victim enough already in cancer, can we not call it “relapse”?)

No John doesn’t have breast cancer but I read (worry) between the lines. He had those cells, he had lymph involvement. Cancer is cancer, right?

Next story is bad testing, errors in labs, so much cancer not caught thru medical error. Ok obvious fear trigger there.

And then he coughs and I get three for three.

Yes, all fear, worry, and my crazy head. But I know the other cancer lovers feel this. It gets us in the heart.

But good news: We are leaving for vacation tomorrow. Two city days for music, museum and food and five beach days for reading, walking, and time to quiet my fearful heart and just be together.

Oh yes, sex too. Lots and lots of vacation sex!

Marriages

Just finished the great book, “Olive Kitteridge” by Elizabeth Strout.

A great book about the heart and hope and love and pain of a really bitchy, grumpy woman. The book opens the veins I think.

In the interview with the author at the end Strout says, “A marriage is always a source of great drama for a fiction writer. It is in our most intimate relationships that we are truly revealed; that is why I write about a variety of married relationships.”

“We are revealed”, she says. Yes, that is why I like being married. Friends say to me, “You don’t have to marry him.” and others closer still say, “He has cancer; you don’t have to take that on.” They mean, “You don’t have to be a martyr.” But I am not a martyr. Strout nails it. “We are revealed.” Being married and maybe even being a caregiver is selfish. It is a lens, a way of seeing oneself.

A mirror from Wal-Mart or a self-help weekend might be the cheaper, easier way to be revealed and to see oneself. But marriage works. Even when it doesn’t.

Mastering the Art of Relationships

We went to see the movie, “Julie and Julia” today. I loved that it’s a writer story times two. Yes, Child was also a writer. It was her writing –on top of her love of food—that made her cookbook work. So I got to see two women who think they are other than they are, who, through the acts of cooking and blogging and cooking and crying become who they already were.

And, as every review has pointed out, both had men in their lives who survived the cooking and the crying and who were supportive of what may have seemed crazy or not exactly clear at the start.

As much as I want to follow Gloria Steinem’s advice and “Be the man that you want to marry”, I find that it helps enormously to have a supportive man nearby even as I become him.

And so, deeply inspired by this movie, I came home and made dinner for John from one of my favorite cookbooks, “The White Trash Cookbook” by Ernest Matthew Mickler published in 1986.

Here is the recipe. It is called “Freda’s Five-Can casserole.” Makes a great Sunday supper:

1 small can boneless chicken
1 can Cream of Mushroom soup
1 can Chicken with Rice soup
1 can Chinese noodles
1 small can evaporated milk
1 small onion minced
½ cup diced celery
½ cup sliced almonds

Mix all of that. Pour into a casserole dish. Bake uncovered one hour.
Serve with bread and butter, fruit salad and vanilla ice cream.

Another Other Woman

Yesterday I had dinner with a friend of a friend. We were introduced because we are both artists and women with management careers as well. My friend who knows I am always in that “this or that” tug of war with work said, “You should meet Mary; she has the same struggle.”

So we had dinner and I was delighted. She’s smart, funny, thoughtful and spiritual. We talked through dinner about our careers, the challenges of having two kinds of work that we love, the big step to getting studios, the building of our portfolios. She mentioned her husband, his support for her as an artist, how they talk about these career issues. I asked how long they had been married. “It will be 16 years this month,” she said.

So I asked, “How did you meet him?” And there was a long pause.
“Well", she said slowly, "when we met we were both married to other people.”

Yes, she was the other woman. It’s 16 years later and they are happy—and so are the exes. A gift this dinner. She is the counterpoint to those who say, “It never works out.”

Kids

We are onto the kids now. His sons. My daughter. They each have a place in this and each have feelings that are over the top. His sons call me names. My daughter defends her father. I talk to other parents and they all say, “Time, time, time.” “Give time time”.

I get that intellectually but I am emotionally impatient. It’s fear of course. Fear that it will always be strained, always be ugly, always be split.

Do we have enough solid ground to weather the strains of these grown children pulling from both sides? That is my real fear.

Kids, cancer, us and time. What will happen if all that collides?