Monday, October 31, 2011

Forgiving Everything, All the Time

I do it every day, several times a day, it’s one of the dances Marty and I do.

I reach under both of her arms, get a secure hold, make sure she is anchored with her right leg on the floor and use my prodigious frame to pull her to a standing position.  Every day when I do it I manage to move her arm, her leg, her back in such a way she says, “Ouch.”

As I lead this dance I then ask, “What’s wrong?”

Marty then names the pain, names the location of the pain….”You hurt my leg,” “You hurt my arm.”
I say, “I’m sorry.”

She says, “That’s okay.”  Every time, she says, that’s okay, every time she immediately forgives; grants grace and forgets the infraction, just like that, just that simple.

It never fails as I push Marty in her wheel chair down the hall and make the left turn into the kitchen I bang one of her legs into the wall.  If not that wall then I find something else like a door, or the facing of the door or something else immovable.  

It’s the same dance.  Marty says, “Ouch,” and then names the pain.

I say I’m sorry, she says, every time, all of the time, “That’s okay,” instant grace, instant forgiveness.

To know Marty’s past is to understand this forgiving and forgetting nature is not natural for her.  Before the strokes she did not suffer fools gladly or any other way, before the strokes if she suffered a slight she let you know she suffered the slight and she would remind you five years later about the slight.  She didn’t necessarily hold a grudge; she gently massaged and nurtured it until it was time to reap the benefits.

That’s not the new normal.  The new Marty lets it all go and has the grace and love to accept things, accept her life in a way that is really remarkable.   It would be easy for her to complain, to turn to resentment, to live her life caged by anger at the tragedy of her life.  She chooses to live otherwise.

She says doesn’t really have a choice.  She says it’s not a matter of choosing, it’s simply a matter of living with what is.  What she says is that being angry; being difficult would not make her life better or easier in any way.  I say she makes a choice every day to life with acceptance and grace, I say she chooses to live with forgiveness every time I run her into a wall.

We don’t get to choose everything.  The blessings and curses of our lives sometimes just happen, not based on what we did or didn’t do, they just happen, regardless of what we do.  Our choice comes in how we adapt, how we accept, how we live in the life given each of us.

I marvel everyday at the way Marty lives her changed life and the simple grace that she embodies.  You see it every day as she accepts what is her life today, as she is rolled from side to side to get dressed, as she is picked up and moved around to her wheel chair, as she takes what pills are provided, as she eats whatever is place before her, as she simply lives without complaint, remorse or self-pity.  

Knowing Marty as I do, knowing and understanding who she was before, her ability to adapt and accept is nothing short of remarkable, her acceptance of my help is nothing short of miraculous.  Caring for Marty with her willingness to simply say every day, every time, “That’s okay,” makes life a lot better for all of us.

Tuesday, October 18, 2011

Who the Hell Am I?

I am a west Texas born and bred male, raised on football, baseball, guns, church and hard work.  In my mind men were tough, quiet, hard and loyal, we were not taught to be sensitive, caring or nurturing, we were the hard men meant to provide safety and comfort.

I played football, I played baseball, I hunted, I worked in cotton fields, in the oil fields and in construction.  I grew up believing I was the quintessential Texas male, refusing to express fear, doubt or leave the toilet seat in the correct position.  Feelings of softness, gentleness, empathy, or nurturing were not part of what I thought of as masculine, feelings in general were not part of who I wanted be, caring for the sick was not the work of a man, unless of course you were a doctor.

Okay, I admit I had some soft spots.  I fell in love too easily and too often and I cried every time I heard the song, “Rudolph the Red Nosed Reindeer”.  No one would play with him and I felt bad for him, it’s hard being an empathetic male.

In my first and only real career I worked in the business end of the electric utility business for 26 years.  I was great as an independent employee working with customers, I was really very good as a supervisor of people, I was probably less than okay as a captain of industry.

My next to last job with my company was as that captain of industry, a pretty big dog on a very big ship, trying to guide the ship through the turbulent seas of change and greed.  I was always pretty good at inspiring people, at painting a reasonable vision, and understanding an employee’s perspective.  I was never very good at giving bad news, meting out discipline and telling truth to power, not a good recipe for success as a captain of industry.

I successfully guided my various organizations through all of the iterations of the same company and massive changes that has been a significant part of the business climate for the last two decades.  During one of my last performance evaluations my boss told me was that I needed to harder and meaner and less empathetic, more of the classic business guy.  He thought I needed to be freer with criticism, be more hardnosed and more cut throat.
I tried that, I really did.  I tried to move past the nurturing part of my DNA, that subjective empathetic part of my personality.  I was a flop.  Invariably when I tried to be a hard ass I was not just an ass, I was also a jerk.  Marty tried to tell me, she tried to tell me that I wasn’t being myself.  I can still hear her telling me to be to be who you are, who you have been, not what they want you to be.

When I left my job in my mind’s eye I still wanted to see myself as a big bad businessman who did business in a hard but fair manner, who treated employees with the bare amount of dignity and drove them to excel.  I still saw myself as a man’s man who could be stern, who had high expectations of everyone, including myself.  Nurturing, taking care of my woman was not on the top of my mind.

She tried to tell me, over and over again she tried to get me to recognize myself, then she got sick.  Not just a little sick but catastrophically, cataclysmically, death bed kind of sick; the kind of sick that changes the lives around you, the kind of illness that requires care, that requires nurturing, that requires all day, every day care giving by someone who cares.

For a year I pushed back, I couldn’t do this, it wasn’t my calling, it was against my very nature, it was not me.  I was plagued with the anxiety of second guessing and doubt, I was captured by what I thought I should be and more importantly what I thought I wasn’t.  The days of even wanting to be that business man of old, that captain of industry, became lost in the urgency of our new normal life.  My life, my self, wasn’t so much changed as it was discovered by the pressure of reality. 

Somewhere along our journey, with Marty’s help, I found the guy who cried about Rudolph, the guy who instinctively cared that the other reindeer excluded him.  I discovered that it was okay to be afraid, that it was okay to be tender, that it was honorable to care for those who could no longer care for themselves.  

Marty taught me, she showed me who I was, who I could be, what my true calling was.  I chafed against it, I fought against it, but it was what I was meant to do.  Through Marty’s illness, what I was meant to be, found me.  Could I be nurturing, could I conquer my self-doubts for just anyone?  I have no idea,  I don’t have to know that,  I only know that caring for Marty, watching over her is what I was supposed to do, it is what my life was supposed to be.

I always thought that the first sign of maturity was when you realized there was more stuff to know than what you already knew.  I have since come to realize that understanding all that you don’t know is just part of it, somehow you have to start to know who you really are and start living that life, not the one you thought you were or who you wanted to be.  Sometimes we discover somebody completely new.

Monday, October 3, 2011

A Circle of Caregivers

I sat in the parlor of our church listening and talking, mostly listening to the stories of the other family caregivers.  We had gathered together to talk, to listen, to think, to find ways to help those who were providing care for loved ones. 

There were women who had seen fathers and husbands through the worst of dementia, who had cared for them as they slowly passed.  There was a wife and daughter of a husband and father who had moved to a care facility.  There was the wife who was just really starting on her care giving journey as her husband was slowly but surely needing more and more help.  There was the niece who had willingly taken on the job of caring for her aunt and there was me.

Everyone had unique stories, unique but the same in so many ways.  As I listened to them talk of the fears, the worries, the fatigue it all sounded so familiar, spoken by different people at different stages of life, all in the same storm.

We talked about health care, embarrassment, ignorance, unknowns, fear, patience, and love.  Each of these people, as they spoke, as the tears came, did not have to profess their love for their spouse, father or aunt, it was assumed, the love, the respect, the loyalty was lived through their dedication and actions.

The stories were poignant, especially as some in the room talked of coming to the decision they were no longer able to care for their loved one alone, at home.  Those painful decisions, to move their husbands to a care facility, were largely made out of the need for survival for both the caregiver and their charge.  You could tell those decisions were painful; the women felt they had not made the best decision, but the only decision remaining.  

That’s the real conundrum of caring for people with long term, descending ailments, there are no good decisions, there are no right decisions, and inevitably you end up making the only decisions and those decisions invariably kind of suck.  Making those kinds of life altering decisions is one of the most stressful, heart wrenching parts of care giving.

Then we talked about the loneliness.  Maybe lonely isn’t the right word, it’s really more of a feeling of isolation from the normal ebb and flow of life.  When you work, when you fully participate in the life flowing in the outside world, you are part of the world, part of the community, experiencing the rhythm of life.  When your life revolves just around what’s inside your home, what’s inside a nursing facility you don’t experience life in a normal way, you are set aside, you are isolated.

So many of my own relationships revolved around work and Marty was the social secretary in our house, she was the one in charge of most of our outside experiences.  All of that went away when I quit working and Marty had the strokes.  I have been beached, out of the ebb and flow.

After the strokes, after we came home for the last time, everything became about Marty, about her recovery, about what happened behind the walls of our house.  The walls then become something of a fortress, you forget about what’s outside, I only saw the outside through the perspective of how it will affect the person I was most responsible for, Marty.

Remarkably I don’t resent any of that.  I’m as surprised by that as anyone, I’m not the self-sacrificing type.  I’m selfishly doing what I was called to do; I’m doing, regardless of the repercussions, the most decent thing I’ve ever done and frankly I’m proud of that.

I think everyone in the room that evening would agree with that.  From the daughter to the aunt to the spouses, I suspect they all confront the pain of their families’ illness every day.  Those that have lost people, still deal with the ramifications of those tragedies every day of their lives as they try to re-establish themselves in that rhythm of outside life.

The talk helps; the communion of these souls satisfies a part of my being.  There are no answers to most of the issues, most of the issues are part of the more unseemly part of life that some of us face too early in our lives, some face for too long, same face too often.  

I hope we bring this group back together in the future, not to look for answers, not to bitch or wax nostalgic, but to simply share the lives we have in common.  That’s what so many living more normal lives do every day.