Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts

Monday, July 2, 2012

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.

Friday, January 6, 2012

The Patient's Checklist

This week I read a review copy of a new and very handy book called, "The Patient's Checklist". While ostensibly a book for patients to take with them to the hospital--this is actually a great book for family caregivers and advocates. Elizabeth Baily had the experience of managing her fathers care--some complicated care--and this book grew from her experience.

It is, in fact, filled with checklists to use before going to the hospital and at the hospital and after. Lots of methods for keeping track of who's who and what's what and what comes next.

This is a book that everyone over 50 should have as they care for their parents and siblings and to pass on to their kids who in turn will be taking care of them.

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.

Monday, December 22, 2008

No Port No More

Today back to St. Peters Hospital to have John’s port removed. The port was installed seven months ago and he received chemo thru that opening in his chest. A handy device but an alien object.

I was cranky all morning though. Truthfully, it was a bad hair day but I was also unhappy to be returning to this hospital which feels like the scene of the crime. Amazing how those feelings come back. The fear during his initial surgery…seven hours became 11 and then 14. His pain and my pain and her pain too.

The port was installed In June and chemo began a few days later. Since then our lives have been about cancer and chemo when they are not about love and sex. Quite a distillation.

But today I was there again, wandering hospital hallways, finding the cafeteria and gift shop and the chapel. This was the chapel that I visited so often that long week when he could not talk or sleep or eat. That scary week when—I realize now—we didn’t even know how much scarier this could eventually get. So that chapel was home.

My prayer today was for his health, for her peace, and for my freedom.