Last Things

His organs were failing, and the doctors felt he had only a few days.  He was stretched out in an easy chair, soft winter sunlight warming his ashen skin.  A few cubicles down, his family quietly sobbed as they spoke to the doctor about hospice.  He didn't want to hear about hospice, so he slept on.

I asked him if he wanted a foot massage, and he smiled and nodded.  I gently removed his shoes and took his feet in my hands.  "You're like a cat in the sun," I said.  He smiled and sank back into a doze.

As I massaged his feet, I realized -- this is the last massage he would ever receive.  Barring some miracle, my massage was the last one of his life.  The thought hit me with all the force of a fall from a great height.  How could I live up to this responsibility.  I paused, my hands resting on the tops of his feet, until I felt his breathing, and I felt how calm he had become.  The sun still fell across his face, his eyes were shut and he had a small smile.  It was a moment of ease for him.  In the midst of months of worry, treatment and blood tests, here was a small moment of peace.  I held that peace as I finished the massage.

Massage Dog

When she comes to the clinic for treatment, she soaks her hands and feet in ice for hours, in order to stave off possible neuropathy from her chemo.  She speaks softly, with a musical cadence that makes me think of rocking chairs and lullabies.  She smiles when she sees me because this means "the end of ice." 

She loves to undress for her massage, but today she can't.  The cold of the ice lingers and she is unable to warm up her thin frame.  She climbs onto the table, fully dressed, and slides underneath four blankets.  She shivers, and the deep breaths she takes, trying to relax, waver with her shivering.  I spend the first few minutes just doing gentle compressions over the blankets, defining the outline of her body and gently wrapping the blankets closer to her until she stops shivering. 

I uncover one leg, wrap my hands gently around her calf to continue compressions.  She smiles in the way I know -- the smile that comes before some beautiful thing she means to say. 

"There's a dog!" she says, clearly delighted.  "A big, shuffling dog, sniffing around the bottom of the blankets." 

I pause, hands still on her leg.  "Is this a good thing?"

"Oh, yes.  It's a wonderful dog, just sniffing around." 

We continue the massage.  Somewhere during the session, the nurse comes in to check on her.  She tells the nurse about the dog.  The three of us decide the dog's name is Bennie -- short for Benedryl. 

I don't often hear about someone's visual experience of a massage.  Whether it was the Benedryl or the open mind of a lovely person -- I appreciate the experience.

This is my dad's dog, by the way.  As far as I know, he has never been present at a massage.

The Hardest Day

10 a.m. appointment:  Woman my own age, recently cut short a trip abroad because of intense abdominal pain.  Doctors at another medical facility recommended hospice.  She says to me, "I know I'm not going to live a long time, but I think I have at least a little while left."  Just wants to relax her shoulders, which have crept up to her ears as she tries to power through continued pain. 

1p.m. appointment:  New client, 10 years younger than me, and "cuter than speckled puppies."  Loves to be active and is frustrated by the illness that keeps her hobbled.  Cries a little during the appointment, talking about her lost muscle tone.  I tell her --because it is the truth -- that she has better muscle tone than many "healthy" people I see.  She acknowledges but seems not to believe what I say.  There is something in her eyes as she leaves that I can't quite identify.  As I drive home, I realize.  It was terror. 

Later, updated news from home:  Grandmother (recovering from heart attack in the hospital) has damage to over 50% of her heart.  For a 90-year-old woman, this is not unexpected.  I call her and we talk.  She tells me my sibling is the favored child, but she feels okay saying that to me because I  "knew it already."

Finally, time to put the day to bed: enough food to eat, a warm place to sleep, and a partner to tell all this to. 

Gratitude.

Take this Compliment. Take it!

I think I'm pretty good at what I do, and sometimes I'll even say this to people.  But sometimes the intensity of someone's gratitude catches me off guard.

A while back I had a client -- patient -- in a medical facility.  A person facing a chronic, critical illness where treatment caused debilitating side effects, up to and including time spent in hospitals.  I was one of several appointments she had that day.  She struck me as a practical woman -- plain-spoken, realistic and unsentimental about her troubles.  And out of the blue she said:

"The treatment is worth it for this massage." 

A compliment so intense it almost paralyzed me.  How could my little massage justify such discomfort?

I know hyperbole when I hear it.  I know what she said was not strictly, literally true.  I also know that the truth in it had enough gratitude in it (from her, to me) to make me question whether I deserved it.  But who am I, in the midst of all her setbacks, to offer her another setback by questioning her experience?  Better, I think, to try my best to gracefully, gratefully, accept her compliment.

Women Who Think Too Much

I remember quite a few things about massage school, but the thing I remember most vividly is this exchange during a moment of intense frustration in an early technique class:

Teacher:Just get out of your head.
Me: I've been living in my head for 36 years, so I'm not going to get out just this second.

I believe I have met my in-the-head match. I gave a manual lymph drainage treatment to a woman who asked that I "narrate" the treatment so she could understand what was going on. At first I thought: "Yay! A client who really wants to take charge of her health!" But, after about 10 minutes of trying to talk from my head while working from my head and body, I was exhausted. And the questions kept coming. I could almost feel the different parts of my brain trying desperately to keep up. It was spinning plates while standing on one foot in a tub full of jelly.

I'm out of my head now. It's all worn down up there and won't be back until later. The sign on my door says:"Gone breathing."

Most Beautiful Massage Moment

Yesterday, I went to give a massage to Bette. *  Bette, a 30+ year resident of a local nursing home, had received a gift certificate for a massage or Christmas, and was finally ready to redeem it.  Bette had suffered a traumatic brain injury many years ago, and although cognitively functional, was not able to speak on the telephone.  Bette's mother, Rita, therefore, made the appointment.  Rita is a resident of the same nursing home, having moved there from her independent living apartment last summer.  Rita had received a couple of massage from me right after she moved  in, but as we talked she was most concerned that  her daughter was able to enjoy her appointment.

When I arrived, Bette showed me to her room, and Rita was waiting there.  Bette indicated that Rita could stay during the massage, to Rita's great relief.  Bette positioned her wheelchair, and Rita took a chair across the room.  As Bette and I talked, Rita pulled some sewing out of a bag -- one of Bette's dresses -- and proceeded to hem.  I should mention here that Bette is in her late 60s and Rita is in her early 90s.

About 10 minutes into the massage, Bette had her eyes closed and her breathing had slowed to that state which I think of as "melty."  She had stopped trying to "help" me, and was completely in her massage experience.  I glanced over to Rita.  Rita looked intently at her daughter, taking in Bette's relaxed state.  As she watched her daughter, the look on Rita's face was the same as a mother's hand stroking her newborn child's sleeping head. 

I have been told that my style as a massage therapist is "maternal," but I never quite understood what a compliment that was until I saw Rita watching her daughter.  The intensity of love and relief as she watched her beloved child gain some relief from pain was almost too much to take in.  I will remember yesterday for the rest of my life as a beautiful and transcendent moment in my career.

*--names and some identifying details have been changed

Short and (hopefully) Sweet

Tomorrow (April 9), my business partner and I will accept the Humanitarian Award from the Illinois Chapter of the American Massage Therapy Association.  We have been invited to say a few words, and because I can't possibly resist both a microphone and a captive audience, I have prepared a few words.  (Christine, my business partner, is immune to the spotlight and graciously agreed to let me speak.)  For your perusal, here is what I plan to say:

We would like to thank the AMTA of Illinois for this award, and Susan Barney for nominating us. We would also like to thank Ruth Werstler of the Bethesda Home and Retirement Center in Chicago for welcoming us into the community and providing the incubator where we created ElderCare Massage Chicago.

Our work is its own reward--rich and fufilling in all the ways we were seeking when we first went to massage school. Recognition like this, therefore, comes as an unexpected and humbling honor. Christine and I have known for a long time we wanted towork with older adults. It is not just the rapid growth of this populationand its associated demand for ccomplementary medicine that drives us. We truly feel that massage therapy promotes and supports human dignity as much as physical well being. We continue to seek to honor each client as they are, and to be person-centered in all that we do. Thank you for your support.

Live Forever?

Even after a few weeks, I am still thinking about this article from the New York Times' Sunday Magazine.  Billionaire David Murdock is doing everything he can to live to 125 years old.  While I admire him for being a model of healthy aging, I find his stated, numerical age goal a little disturbing. 

Take a look at this article.  I find the sections where he talks about his wife (deceased) very touching and somewhat sad.  He strikes me as a man touched and hurt by the loss of someone close, and trying to heal that hurt by conquering death.

The Billionaire Who is Planning His 125th Birthday

The Problem of Empathy

Mr. Morgan* appeared on the dementia unit early in the week.  He was tall -- well over 6-foot-2 -- towering over the other residents and all the staff, including me.  Although his voice was tinged by his own fear and confusion, when he spoke we could all tell he was a man used to being listened to and obeyed.  It clearly baffled him that we not only did not jump to his command, but that he could not seem to express that command in the first place. 

Mr. Morgan was generally easy to work with, however.  He never seemed joyful or giddy, but neither did he rail and fight against his own decline, or become seized with grief he could only express in rage, as his fellow residents sometimes did.  This made it all the more strange when I found him one afternoon, pushing his walker down the hallway like Sisyphus with the stone, his heavy brows lowered down onto his eyelids.  I walked with him a few steps, and when we reached  the end of the hallway -- the end of the world for the residents of the dementia unit -- I asked him where he needed to go. 

"I need to go home," he said, looking at me with his heavy face.

I had only been a Life Enrichment Assistant for a few months at that point, but I felt all the confidence of my ignorance, so I tried to use some approaches I read about.  Redirect.  Inhabit his world.  Find the truth, the true emotion behind the words.  "What is at home?"  I said.

He looked at me like I was the biggest idiot he had ever met.  "My home,"  he said, "It's my home." 

At this point, he was beginning to tire, so I directed him to a couple of chairs and persuaded him to sit and rest for a minute.  I asked him, "Why do you need to get home?"

His face worked for a moment before he blurted  out, "I need to get home to beat my wife!"

I don't know how I didn't run away in disgust or tell him exactly what I thought of cowards who hit their loved ones.  I don't know how -- but I sat silent with him for a few minutes.  Somehow, getting this sentence out calmed him.  Or perhaps he was finally physically exhausted from all the walking.  Either way, I was able to refocus his attention on lunch, which was being delivered right then.  He joined the rest of the residents in the dining room, and passed a generally quiet rest of the day.

In the moment of this experience, I remembered some of the best advice ever given to me about working with people who are in cognitive decline.  One of the family members of a resident said to me, "Do not have sympathy.  Sympathy paralyzes you and you just get stuck pitying someone.  What you need is empathy.  When you have empathy, you can feel what a person needs and you can do something about it."  This advice helped me every day of the job. 

But what do you do when your empathy tells you that what a person thinks they need is something awful?  This became the problem of empathy for me.  The first layer of understanding someone can take you to something unpleasant, dark or troubling.  It was learning to get to the next layer, down the the reptilian kernel of need, that was the problem.  What I eventually got to with Mr.  Morgan was that he needed familiarity, he needed the security of his routine and, however twisted that connection was, he needed the connection with his wife.  That was a need I could work with.  The truth, though, is that I was always on my guard around him after that -- especially when I spoke with his wife and learned that he did used to hit her. 

I have chosen a profession where I am in frequent, close contact with people -- often people in the midst of suffering.  Most of the time it is rewarding and energizing to meet someone where they are and make a small difference in their experience of life.  There are people, though, who challenge me to the core.  Mr. Morgan was only the first.  With each new one that I meet, I realize how much I have still to learn about empathy, and about myself.


*--names and other identifying information have been changed.

"Home" Again

Recently I had an interesting conversation with the Life Enrichment Director of a skilled care community where I work.  We were discussing an upcoming presentation I was preparing for other elder care professionals, and we found ourselves getting tongue tied when trying to come up with a way to refer to the places where frail elders live and receive care.  The names seemed either too clinical or too cumbersome. 

For example: "Facility."  We both bristled at the word, although it was the most efficient to say.  We couldn't get past the inhumanity of it, though.  A facility is a place where inanimate objects are stored, or where mechanical procedures are performed.  A temporary storage facility.  A glass recycling facility.  How could we use that word to refer to a place where human beings lived and, if our work was to mean anything, thrived?

Then what about "Skilled Care Community?"  Other than the fact that it takes too long to say, and is treacherously prone to being abbreviated and made into an acronym-word (SCC, pronounced "sick",) it just didn't strike us as descriptive of what this place should be.  It describes some of the work done by the people employed at the place, but didn't seem to say anything about the experience of the elders who live there. 

I came to the conclusion that day that we need to start a new movement -- a linguistic movement -- in elder care.  We need to start the movement to take back the word "Home."  "Home" fell out of favor a while ago as a reference to a place where elders live.  It was, I think, overused as a euphemism for something awful, and became a code word for a dreary, depressing existence.  The Home.  Putting someone in the Home. 

I think it is time we take back the original meaning of "Home."  Home as a place where you go to receive comfort, acceptance and love.  Home as your center, your touchstone.  Home as a refuge from worry and a haven from trouble.  Home, where the heart is. 

If we are truly applying the principles of person-centered care, the places where elders live should truly be Homes.  They should be populated with individuals whose mission is to respect each individual where and as they are.  Each person should feel that they have a place in the functioning of the whole, like each member of a good family has a role in the functioning of their home. And, as with any true and loving home we visit, every person who visits or works in the Home would show respect for the public and private spaces. 

So, starting today, I am beginning a campaign to reclaim the "Home."  Let's take the euphemism out of the word and apply it truly and faithfully to those places where elders live and receive care.  Let's use this word when we mean what we say -- not when we are trying to hide something unpleasant.  Let's speak of and create Homes, places of security and comfort, for all the elders in our lives.

The Third 30th Birthday

Five (!) years ago, my grandmother turned 90.  As part of the celebration, all her grandchildren put on a little talent show.  Being neither musical nor coordinated, I chose to write and read a little essay about her.  On the occasion of her 95th year, I have reprinted it below.

*********************************************************

I have tried to write this tribute in many ways: lyrical, comical and philosophical.  At some point, all things fall short.  I keep returning in my mind to one of my earliest memories of Grandma, and then again to one of Phil’s first memories of her.

Growing up, we always went to Grandma and Grandpa's house on

Old State Road

for Sunday breakfast after mass.  There was so much there for a child to observe: the smell of pancakes cooking on Grandpa’s perfect griddle, the slightly blurry faces of the Hummel figurines, and the tiny cups of orange juice you had to make last through the entire meal.  My most enduring and vivid memory, though, is of the blue felt silverware holder with the yellow edges.  Right before the meal, when the house smelled so full of breakfast I could hardly stand it, Grandma would take out the silverware holders, untie them, unroll them, lift up the flap and set the table.  Sometimes I even got to help.  If I was very lucky, we stayed long enough after breakfast to help put the silverware back in the pockets, fold up the flap, roll up the holder and tie it up again.  This particular shade of blue will always make me think of comfort, family, and making good things last by enjoying each tiny sip.  People call it light blue, robin’s egg blue, or even military blue.  For me, however, this shade will always be Grandma blue.

Some of you may remember that shortly after I married my husband, he decided to grow a beard.  Some of you may also remember that the results were decidedly mixed.  Grandma has always welcomed and loved him, as have you all.  When he had his beard, though, she was the only one who told him it didn’t look good and that he should shave it off.  The beard didn’t last much longer after that.  I can’t say for sure if it was because of what Grandma said, but I was glad she said it.

I linger over these two memories as we celebrate Grandma’s third 30^th birthday because, for me, they show the massive power hidden in this “little” lady.  She makes the everyday tasks of life, like setting the table, comforting and enduring.  And she can speak a small, kind word that makes us want to change for the better.

Book Review: The Emperor of All Maladies

I like novels that make me cry. I enjoy that total absorption in a fictional world that opens up some fiercely protected emotional reserve and pulls it out -- all with the gentle force of words. Only words -- put together in a specific way by a human mind that has all the same organic parts as yours and mine. It feeds my fragile optimism to realize that a person, just a person, can produce a fictional world so real and powerful that it makes me cry.

I recall three contemporary novels that have this particular power: The God of Small Things by Arhundati Roy, Bel Canto by Ann Patchett, and now, Cutting for Stone by Abraham Verghese.

I believe I came to this book a little late. I put out a plea on Facebook for something good to read, and at least four people mentioned this book. I found it in the new books section of the library. Only one of the five or six copies was available for check out. Somehow, this "new" book already had the darkened pages and slanted spine of an often-read book. I had just seven days to get through 550-plus pages.

I finished it in three.

The story, if you don't know, follows twin brothers, conjoined towns separated at birth, and their lives at a hospital in Africa. This is a gross over- simplification of a complex story, but I hesitate to summarize a story so perfectly compact. Yes, despite the heft of the book, the story was compact, contained. Every possible loose piece that could have rattled off into space found a way back into the puzzle of the story. Tragically deceased mother, troubled absent father, brothers drifting apart by distance and betrayals -- it all comes back together. Despite the tragic tones of the resolution, the ending of the story was deeply satisfying. Overall, this book has the feel of a life well and fully lived -- I grieved for the end but still felt grateful for the journey.

So now I will add my recommendation to that of my four or five (or more) friends. This is a well-crafted, lovely book. It is elegant in language and precise in construction. It reflects, I believe, the best of author's other profession (Verghese is a doctor) as well.