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.

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?

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!

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?

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.

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.”

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
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.

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.

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!