Tuesday, June 18, 2013

A Fine Line: being loved -- being catered to

That's my honey, a few days before he died.  People mistook him for my father; cancer was so hard on him.  This is the only time I've published a picture of the two of us.  This blog, after all, is about life after widowhood.  But somehow, this seems like the time to show the chapter of my life that closed eight years ago. 
I've moved on.  But a book review I read today got me thinking, and I'm a little frustrated.  This book is supposed to be a primer for all potential caregivers.  The idea is:  take your cue about how to behave toward a sick person from that sick person.  I guess I want to tell you what I learned from my experience caring for a very very sick person for what seemed like an eternity.  Take your cue about how to behave from the sick person?  Well, that depends on the personality of the person who's sick.  Pain and fear and chemo make their mark on the personality.  I don't know about you, but I regress to the personality of a child when I'm sick.   Everything becomes about me, me, ME, even if cloaked in adult language.  Sure, loving sacrifice on the part of the caregiver is necessary.  But should the one who is 'needier' call the shots?    
Which reminds me - How much is a widow like a sick person?   

I know the book isn't about taking cues from a widow, but it does relate to us.  How many times would I have liked people to take their cues from me on how to help me?   This widow would have  milked it.  The world, fortunately, has not obliged my cues.  I am certainly better off for learning to supply for myself what I was convinced I needed from others.  I still want propping up, but do I need it?

Back to the original subject, from the perspective of a caregiver and sick person.  Right now I'm facing rotator cuff surgery, so this is sort of pertinent.

Should we take cues from injured or ill people on how to treat him or her? 

Yes and No.  My experience is, when I'm in crisis, I lose my ability to see alternatives, and this is when I really need other people's perspectives.  I discount them at my peril.  Sure I need a little of what I ask for.  I'd like people to cut me a little slack for my nearsightedness and self absorption.  But please, poke me if I take myself too seriously.  Don't treat me with kid gloves when I'm not a kid.  I keep my dignity to the degree I respect your dignity.

Now, if another person we love is actually dying, does this equation change?  Is this finally the time to take one's cues from them?  I don't know the answer to this one.  I wrestled with this for three long years, the minute we got word that my husband's cancer was terminal.   This was my answer.  To the best of my ability I let him own the show.  After all, he was the one dying.  I dropped what I was doing.   I took cues from him about what he needed and tried in every way to offer it to him.   After all, I wanted him to live.  We succeeded in turning a few months into three years.    My sacrifice on his behalf was sincere, but it was also my recipe for burnout, not to mention resentment.   I finally decided that since I'd be the one who would go on living, I needed to lighten up, and stop catering completely to him.  We loved.  We cried.  We laughed.  We said good bye.  We shared the sacrifice.

Below are this recently published book's cues on how to be a friend to someone who is facing cancer. 
  • Don't talk about cancer in military terms, about it being a battle
  • Don't talk about someone else who has been through something similar and made it out O.K. 
  • Don't say "I know what you're going through" unless you actually do. 
  • Don't tell your friend she looks great when she looks anything but. 
  • Don't ask "How are you, really?"  as it prompts all sorts of unwelcome thoughts.
I have followed little of the advice above.  Here's my take on loving someone through injury, illness and dying, point by point.
  • Fighting cancer is sometimes a war with many battles.  Talk about it this way if you want.  Cancer, like war, may require years of hardship punctuated by crisis and critical effort.  It takes courage and cooperation.   Speaking of it in these terms may instill dignity into the scary, shapeless, open ended experience of cancer. 
  • Do talk of something similar, but listen to the sick person's story, too.  Maybe hope can be drawn from others who have made it through.
  • If a person says "I know what you're going through",  they may be trying to build a bridge to us the only way they know how.  Is this bad?  Finding common ground even if our experience is different is humbling, but common ground connects us.  After all, we all suffer one way or another in life, don't we?
  • A friend can indeed look great, and need to hear it, because what is beautiful is what's in his or her heart, not outside.
  • Ask how they're doing, if you're interested.  In my experience, too few people ask how you are, really.  Maybe, if they ask, they will be there for you, really, when you need them.

Does this make sense to you?