Not on MY Towel!

“He doesn’t talk to me.”  The tiny lady squirmed in her chair and pulled her polyester print dress tightly across her knees.  She hugged herself and continued her story.  She didn’t drive and she was stuck in a tiny apartment with her nasty dying husband who treated her like a maid from a third world country. “  He comes out of the bedroom. Walks outside. To smoke. Doesn’t say nothin’ to me. Like I’m not even there.”  Several of the other caregivers in the room nodded. 

“I know it’s hard.”  The matronly facilitator stepped away from her flip chart and focused on the woman.  “My husband completely ignores me too.”  I thought she might burst into tears.  I could not believe what I was hearing.  And all that nodding of approval and understanding.  Could she be condoning bad behavior? 

So uncool for a facilitator.  She was  supposed to be our leader.  The rest of us came for support and direction and to cry during our allotted turn.  I was not prepared to listen to how I should grin and bear the meanness of my patient.

“Why do women put up with this?”  I wondered.  A guy is dying of cancer and the woman who is busting her tail keeping him alive and comfortable gets treated like a fly-infested plough horse?  What is wrong with this picture?  Caregivers need hugs and encouragement to keep plodding along.  I refused to believe that Rich was a saint.  I knew better, but these caregivers seemed to be suffering beyond the call of duty.  I didn’t understand their acceptance, but I could relate to how it happens.

Rich and I had talked at the beginning of his illness about my limitations.  “I’m not a nurse and I’m not a farm girl,” I’d reminded him. I had worked in offices all my life so I was just a 5-foot-5-inch woman with puny arms and a stiff  “computer” neck.  

Yet, Rich resisted my early attempts to make my job easier.  I suggested upgrading our glass-enclosed tub/shower.  I had to lie to get his approval, right down to the grab bar.  I said I needed it.  He scoffed at having “stand-by” help from a bath aide when he took a shower until he fell backwards and landed on the shower seat.  He tried to shame me by saying that the bath aides probably wondered why someone young and strong like me needed help. 

He was dying.  I wanted to love him, not argue.  I passively skirted confrontation while I picked up after him and bit my lip as his litter filled our home, turning it into a hospital suite.  I felt like I was “flopping” at a friend’s house because I had somehow gotten squeezed out of my own.  I even struggled for a place to hang my bath towel.  Unlike my toothbrush and lotions which had been stowed away long ago with all my other personal stuff, the towel needed a place to dry out.  Rich had his two favorite towels.  (None of the others were soft enough.)  So it was obvious which one was mine.  The one that I kept moving around to be out of his way. 

The day came when I walked into the bathroom and found my towel violated.  A soppy wash cloth had been flung into the middle of it.  I stared at the soaked wash cloth oozing into my towel on the towel bar and my negotiation skills and positive attitude abandoned me. 

I steadied myself with a deep breath and stomped out to the livingroom.  “How dare you,” I growled.  ”You may be sick, but you’re not THAT sick.   I live here too . . .”  Rich stopped me with an apology before I could properly vent.  “I knew when I did it, I shouldn’t have.  It won’t happen again.”  I wanted to rant more but he cut me off.  “I said I won’t do it again.”  And he never did.

He knew better, but I had to stand up for myself.  I had to draw a line and demand respect.  If you don’t like being treated like a nameless domestic for hire, then start acting like the strong, organized crisis manager that you are.  And don’t let anyone with a flip chart tell you otherwise.

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Tags: caregiver abuse, caregiver dignity, caregiver respect, demanding respect as a caregiver