Leaning Into Sharp Points

Here is what we know about family caregivers:

65% of people who need caregiving rely on family and friends for assistance. Most of these caregivers are women; in fact, the National Caregiving Council estimates that 75% of caregivers are women. The odds are good that you are or you know one of these women. What you may not know is that caregiving is a health and career hazard for women.

 Metropolitan Life has studied caregiving and its economic consequences for many years. They report the 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

The costs are very high. So what do we do about that?

Yes, there are lots of workshops and support groups but one of the realities of caregiving life is that caregivers don’t have time to attend the groups they need to. They struggle. And they pray. And they read.

Stan Goldberg’s new book, "Leaning Into Sharp Points", is a gem for a caregiver’s library. Goldberg is a professor, hospice volunteer, researcher and family caregiver. His book is wonderfully straightforward and frank. His advice is platitude-free and that comes from real life experience.

Goldberg not only says “bad feelings are ok” he names them and gives examples. In my many years as a family caregiver and coach for other caregivers I have found that the most energy draining aspect is the bad feelings –those things we think we should not feel and are determined never to admit. Goldberg has been there. He admits them.

Another gift in this book is the chapter on talking to non-caregivers. Based on the statistics about the rapid rate of aging there are fewer non-caregivers around but they do torture us with suggestions, ideas and platitudes. This chapter made me want to make copies to hand out as soon as the well-intentioned, “Now you really have to take care of yourself”, chatter begins.

The book is paperback. The price is right and so is the size: You can fit it in the tote bag to the doctor’s office and the oncology center.

A Poem: Gratitude

When I write the word “Gratitude”

I think recovery.

I don’t think “cancer”.

I think gratitude for him

for me, for this

--surely not this?

We are grateful or we are not.

We say Yes! and Thank you!

All around me well-meaning

friends say,

“You can say ‘No’!”

But I say Yes

I don’t No

Who knew…

“It’s like a relationship on steroids” I

told a friend

then I realized

that was no metaphor.

Vacation Daze

We are home from Pittsburgh. The ‘Burgh is my home town and this was John’s first visit so I felt some pressure to have the City of Champions make a good first impression. And it did.

That’s the pleasure of going home as an adult and as a tourist—I know what I wanted to show off so we stayed on the waterfront downtown and visited the The Scaife Mellon Art Museum and the Carnegie History Museum (my refuge as a kid) and we ate very, very well. We took the incline for dinners up on Mount Washington and the trolley to breakfasts down in the Strip Yards. And the best part for both of us was watching the Pittsburgh Pirates beat the Miami Marlins at PNC Park. Beat ‘em Bucs!

So many memories. Most of them good. But I also found myself narrating my caregiving history as we traveled around Pittsburgh: “This is the hospital where my mother was first admitted; this is where I brought her after her stroke; this is where she lived in her coma; this is the hospital where Larry was finally diagnosed; this is the hospital where I brought Larry every week; this is the hospital where he died.”

And there were other things that I did not say to John but that came back to me in such vivid memory: the route from the airport when I came every other weekend to take care of Sig and then Larry; the restaurant where he fell down and couldn’t get back up and my ache for him over his humiliation; where I shopped on what turned out to be the day of his last hospital admission; the hotel in Oakland where I stayed all those nights so that I could walk to the University Medical Center.

e.e. cummings say that our lives are measured in tea spoons but I measure mine in hospital visits and loved ones cared for.

It was fun to be in Pittsburgh as a tourist and not a caregiver—to reclaim my hometown as an arts rich, sports fanatic metropolis. To perhaps balance the other memories by making summer vacation memories there with John.

Keep Out

“I have never found anything in a man’s wallet, dresser, glove compartment or medicine cabinet that made me happy.”

I used that line in a short story many years ago and it may be one of the smartest things I have ever written to myself. Today I would have to add: cell phone, laptop, iPad and maybe Facebook, though I know many married couples who are in and out of each other’s social media all the time. That gives me the willies. I like a stronger boundary in my coupled life.

This week John is editing some essays I wrote 20 years ago. Many are about relationships, dating and marriage. It’s taken this long for me to feel like he can read what the reading world has read for years. A bit strange maybe, but as I prepare to write a book I’m looking at the line between the written word and the lived word.

But even now, happily married for some years, a man’s wallet still feels like a hot potato to me. 

A Life Worth Ending

The link below is to an article from the May 28th issue of New York Magazine titled, "A Life Worth Ending". It's a powerfully persuasive case for talking to our families--and friends--about how we want to live as we age and how we want to die as we decline.

Let's not fool around with this one: we are going to die. Denial--as this article makes powerfully clear--only ensures that you will die in misery with no dignity and that your family caregivers get to watch you in their own misery with no dignity for them either.

This is bigger than cancer. It's about as big as the Boomer Demographic Bump--lots of us aging rapidly and living longer (not necessarily happy news because we will live longer with more disability and chronic illness).

One powerful quote from this article: "We cured cancer for this?"

Read this article and forward this blog post to your friends and family and kids and in-laws and your book club and Rotary and hairdresser and your ex. Yeah, especially your ex.

Here it is:
http://nymag.com/news/features/parent-health-care-2012-5/

Family on the Beach

We are back from the beach and salt water hair and not enough sunblock and too much ice cream. This weekend felt like old fashioned summertime. Visiting John's mother with loads of extra family added including two babies which just make you smile constantly. Beach walks, family talks, too much food and then some bonus time alone on the beach. Rumors of sharks made it more exciting and real sitings of schools of seals made it sweet.

Somehow we got to here which includes in-laws that I love, family stories that we are part of now, and an ease with past and present both real and normal.

Came home to news of two deaths--a friend to cancer and a former colleague to medication errors. In its own sad comparative way that made the weekend sweeter too. Life is short. The reminders are all around us. I still worry about every little thing and work too hard and want the writing to be "just-so" and then I think, "just for today".

It's a good summer this year. I'm glad we are in it.

Who Has it Harder...

There’s a subtle competition in CancerLand. It happens with both patients and caregivers. It’s called “Who has it Harder?” and it goes like this:

What kind of cancer does he have? Colon cancer? What stage? Stage 3. Oh, that’s too bad. My brother had stage three, and he had a total bowel reconstruction. Oh wow. He had a resection, colostomy for six months, then another surgery. Yeah. It’s hard isn’t it? He didn’t miss a day of work. Oh, he missed a year. I had to take six months off. Quit my job. Retired early. And I had my own scare. Breast cancer two years ago. Me too. Mastectomy? No, lumpectomy but a year of chemo. No chemo but lymphedema forever. Yeah. I can’t do anything anymore. He has….

Maybe it’s because our worlds shrink so much? Maybe the chemo works on our lives just as it does on the tumors?

How do we fight that? How do we not engage in “Who has it harder? Maybe it’s CancerLand small talk? I feel so small I have to make cancer bigger? Or maybe it feels so bad and we feel like no one else understands so we keep the focus on the only thing we now feel expert about.

How to step out of the game? Get a life? Surrender to win?

Dressing the Part

So today was hospital day for John’s big tests. And I was reminded of my guidelines for caregivers in hospitals. It’s dangerously close to Glamour Magazine’s Do’s and Don’ts—but I swear there is science in this advice:

You must dress up. Caregivers listen to me on this. You are thinking “comfort” but your more important goal is “power”. Yes, you have to sit around in these clothes all day but you want to be seen and you want to be heard. And yes, you—like a teenager being told how to dress for an interview—may say “But that shouldn’t matter”. And you're right. It shouldn’t. But here’s reality: It does. And in Cancer Land the stakes are high. The impression you want to make is: See Me, Hear Me…(do you hear the music from Tommy?) and Take my requests very seriously.

No sweats for you. No baggy in the bum jeans. No hair-in-ponytail-with-no-makeup look for you. For the patient? Yes. Comfy time. And no valuables, no watch or wallet. But for the caregiver: you wear your good watch, nice earrings, stylish scarf and make up. It is a kind of job interview after all.

So that was my strategy today. Belly full of nerves and an arm full of bangles. Also I always go with the valet parking. It is not more expensive. They stamp that ticket so it’s free and much nicer, especially when leaving the hospital with a drooswy man.

And John was drowsy! The anesthesia was heavy and his reaction was quite funny. In the recovery room he was lovey-dovey, and curious about every detail of every little thing. Because I have never seen him take a drug or even a glass of wine it took me a few minutes to realize what I was seeing. But when he held up his little plastic cup of cranberry juice and slowly turned it around and around saying, “Isn’t that a beautiful color?” and “That’s soooo pretty” that I realized that he was stoned. Here is the straightest man in the world talking like Cheech & Chong.

That was fun.