Caretakers – Personal Advocacy


Your Caretakers should be taking care of you, you shouldn’t be taking care of them.  


The cartoon above was an actual conversation between he and I.

I would like to introduce you to Ino, he was my caretaker.   Chemotherapy was terrible, but he made the experience nearly unbearable.  He was supposed to keep the house clean, prepare my meals, keep the cat litter box clean and provide me with transportation.  In exchange for this, his rent was free.


I used to have a problem setting and enforcing boundaries.  For most of my life others have stomped and walked all over me.  Lovers, friends, caretakers and especially family members have violated my boundaries.

Its taken some time but I have learned how to establish effective boundaries. They are set when our pain surpasses our tolerance.  It is the moment when we are overwhelmed and we decide to take a stand.

This is the story of Ino, and this is how he motivated me to set and enforce my boundaries.  I am embarrassed to write this, but it is such a great example of how people can take advantage of you while you are going through chemo.

The Comfort of My Bed

As I laid in bed I could hear my cat meow incessantly through the door.  His soft white paws tapped in a maddening pattern.  In the living room I heard the scratching click of Ino’s cell phone as he texted.  Every minute a terrible ring blasted from his phone throughout the house.

Beside me was a partially filled bucket of vomit.  My head ached and my stomach spun, I felt the food in my belly slowly sneak its way up my throat. I was so tired, the chemo was sucking all the life from me.  Ropes of exhaustion tightly twisted around my bones, tearing at my muscles.

On my side I felt a stab, the sensation of a searing hot knife slicing through my flesh.  Around that pain was nothing, an absence of feeling, like pins and needles. It felt like my back was wrapped in a blanket of numbness, a void, a nothingness except for the pressure of a rock.  The rock was the hardness of a bone, a thing that was my scapula.

My chest felt like my hair was being pulled from the inside out.  My skin stung and my hair ached.  There was a roving pain in my flesh, it hurt and throbbed like a chemical fire.

It was hard to breath, even more than normal.  My coughing made my chest muscles scream.  I had a weight on my sternum and liquid under it.  My lung felt swollen and engorged, fat and bloated.  I would cough then retch.

Strolling Into My Living Room

I rolled out from the covers and placed my feet to floor.  My toes were numb like rubber and my joints hurt as I stood.  The muscles of my legs felt like they were filled with glue as they moved.  Slowly I ambled into the living room.

Though the air purifiers roared they were overcome by the stench that permeated the house.  It was rotten and fetid, soaking everything with the smell of death.  The garbage can was filled to the floor with waste and the kitchen sink was a mountain of dishes.

A cloud of flies hovered and flew and the sour smell of cat feces was thick.  It had been weeks since I was able to get my caretaker Ino to clean the cat litter box, to do the dishes, to clean the house.  I looked over at him as I passed to enter the kitchen.  He sat, staring down, clicking his fingers against the shiny screen of his phone.

I stood within the center of the kitchen and looked around at the insanity. Turning toward him I asked if he would help me do the dishes.  His reply was unbelievable, he said he couldn’t help me because doing the dishes gave him flashbacks.  Then he went back to texting on his phone.

I had enough, I couldn’t live in this hell.  This was the moment my barrel had been filled, pouring over the brim.  It was the moment my pain crossed the threshold of my tolerance. With my body in agony I did the dishes, I cleaned the house and he sat and watched as I did his job around him.  I had to call my friend Tony to ask him to come and clean out the cat litter box, because Ino refused to.


If you would like to read or listen to a poem related to INO go ahead and click this link.

For more about personal advocacy click on these links

Power Advocacy Podcast

Experience of Treatment – Personal Advocacy

Your Caretakers should be taking care of you, you shouldn’t be taking care of them.




  1. I hope you promptly kicked his lazy, self absorbed ass out of your door and locked it!
    I think, I would have shoved his stuff in trash bags and thrown it on the front lawn for him to retrieve at his leisure…& changed the locks, PRONTO!

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.