Joan

Dear Jacquie,

Following my nerve conduction test that confirmed that I had nerve damage in my hands and legs I was put on a wait list for a rehabilitation hospital.  Meanwhile I was given medications for the immense nerve pain.  The pain medication slowly diminished the severely acute shooting prickles throughout in my hands and legs that I experienced.  The nursing plan while I waited in the hospital for the rehabilitation space seemed to be to keep me clean although none of the nursing staff discussed the nursing plan with me.

Every other day I was forced to shower and do it myself.  It was a long excruciating process.  I would gather towels, a face cloth, shampoo, body wash, shower slippers, an incontenence pad, a clean hospital gown and a clean housecoat on my lap while sitting in my wheelchair.  I wheeled myself to the showers which were set up with an outside curtain, a changing area with a bench and another curtain between the change room and the shower.  I would wheel into the changing area and put all the items I collected on the bench except the incontenence pad which I put on the floor to be used as a bath mat.  I organized the items on the bench in order that I needed them.  The soaps and face cloth I put adjacent to the shower and the change of clothing closer to the outside curtain.  I clumsily put the bath slippers on my feet.  At that point I became petrified every time.  I was afraid of falling or slipping on the wet floor.   I grabbed the tiled wall surrounding the shower, stood up then slowly stepped over a lip that prevented water from escaping.  Then, with one hand touching a shower wall (remember I needed input to tell my brain where my body was otherwise I would fall and feeling the wall worked well for this), I reached for the shampoos and put them on a shelf inside the shower, which was high enough for me to have to reach up to grab them.  Then I would  lean on a wall and turn on the shower and regulate the temperature while it was showering me.  Usually it was cold at first.  Finally I would reach up to grab my shampoo or body wash with the water showering my face which meant that I closed my eyes.  To maintain my balance with my eyes closed I leaned against the shower wall.  Most of the showering was done with my eyes closed while fumbling the wall trying to find what I needed to prevent the water or hair shampoo from going into my eyes.  When done, I would reverse the steps but I would get very cold from being wet and not able to grab the towels and new clothing until I removed my shampoos back to the bench and stepped over the lip back into the changing area.  There was no shower chair available to use like there was on the nursing unit I was on before.  All this was performed by me every other day which was a required of me.  Me, who did no exercise activity, was not working in the garden,  did not need to shower off any self tanning lotion, was not working on my car, or did not crap my pants, had to go through this torturous activity every other day.  I'm not sure why I could not give myself a wash over with the hospital wash pads at my bedside.  However, I was a hoarder, a dirty person and the nurses needed make sure I was clean.

Besides making sure I kept clean, the nursing staff constantly asked me to throw things out.  I had filled the window shelf with several boxes that contained sorted pieces to a puzzle, a couple of incontenence pads I took from the linen cart and four books.  My overbed table housed kleenex, the phone my sister gave me for Christmas, the receipt with the code to enter on the phone to access paid minutes, unopened yogurt, a note pad, a pen, usually a glass of ice water and a portable CD player with earphones and several CDs.  Mingled with these items were unstacked pieces of paper I used to make lists.

I collected the puzzle sorting boxes from the housekeeper.  I noticed she had the perfect size box, little depth with a big base, to put my sorted puzzle pieces in.  I forget what the boxes on her cart contained, but it it was something she distributed in each room she cleaned.  I asked her if she had any of those boxes that she had emptied that I could have.  She went to the utility room where she had discarded three and collected them for me.  

"I will give you this one on the cart when it is empty." she said.  She expected to have it empty after she cleaned another couple of rooms.

"Great", I said.  "I'll hang out in the chairs across from the nursing desk and wait for you to give it to me there."

I wheeled down to the nursing station and waited.  I saw the unit clerk watching me from over the desk as she sat and did her work.  

"This is going to be interesting" I thought.  I was anticipating a reaction from the hospital staff behind the desk when they saw the housekeeper gave me the box.  I was not disappointed.

When the housekeeper was done, she positioned her housekeeping cart beside me.  She took the empty box from the cart and proceeded to give it to me.  Before I could grab it, the unit clerk jolted from her chair and leaped half way over the desk while shouting at the housekeeper, "no, no, no, you can't give her anything."  This rant was observed by everyone at the desk.  I think it even startled some.  Anyway, everyone was looking at her.

"It's just a box." the housekeeper retorted quickly to disperse the awkward situation as fast as she could.

"Oh, okay.  She can have it." the unit clerk replied with approval.

I was actually pleased with the whole scene.  I saw it coming and I enjoyed getting her riled up just because it wasn't the best way to "deal with me" and she would reveal her ignorance.

***

My roommate in the hospital Joan, was around forty years of age, she had dark thick hair, had perfect facial features and was six feet tall.  She was a model in her earlier years.  She was suffering from a neurological degenerative disease and had deteriorated to the point where she needed a wheelchair for mobility, needed help getting into the wheelchair using a mechanical lift and two nurses, she was completely incontenent and nurses put diapers on her, required a diet of soft foods because she had difficulty swallowing, could feed herself but needed someone to set up her meal tray including opening containers of butter.  She needed help to go to the bathroom to have her bowel movements but rarely made it to the toilet because by the time a nurse could assist her to the toilet she had already soiled her bed or wheelchair depending on whether she was still in bed or up.  Joan's daughters had brought up some sweat suits which the nurses used to clothe her during the day. Joan lived with me in the same hospital room for two months while she waited for a space in a nursing home and I waited for a space in a rehabilitation hospital.

Joans hair had been cut short but it was not evident if it was a a real hair style or not because it was never styled.  When her hair was combed hair knots were taken care of but hair continued to stick out in various places.  That was good enough for the nurses.  I suspect that her hair was cut short to provide ease in combing and cleaning by others.  It would have been easy to style as well but that was never done by hospital staff or her daughters.

Joan was a ray of sunshine in the otherwise dismal, dark and oppressive hospital environment.  She made my days more than bearable, I looked forward to whatever spontaneous delights of companionship she extended to me daily.  Her company was not contrived but comfortably innocent.  Because Joan had difficulty with memory we had interesting conversations.  She displayed what I call the wisdom the demented.

The wisdom of the demented is demonstrated at the point where those who are suffering from continued memory decline, know they have memory problems but don't get frustrated by it, and simply respond in conversation vaguely.  They respond with an appropriate reciprocal question or a generic statement and therefore they can carry on a dialogue.  They won't remember the conversation however, neither will others get any detail but interaction takes place.  

For example, if I asked her if she liked her supper she would say "it was alright" or "did you?".  If I asked her when her daughters were going to visit she would say "I expect them to come soon".  If I asked her how she liked her coffee she would say "It doesn't matter, however it comes" or "same as you".  If I asked her what she had for supper she would say, "same as you."

Because Joan could not remember situations she did not store up grievances.  Every minute was a new fresh beginning to life.  She was always positive.  She did however, remember that I was her roommate even if the curtains between us were closed.  First thing in the morning she would call me.

"Autumn" she would shout with a good emphasis on the first syllable "Au".

"Yes", I would answer.  "What's up"

"Just wanted to make sure you were there.  It's time to wake up" she responded.

"I'm awake"  I would report.

It was a great way to wake up especially in the hospital.  I felt validated, acknowledged and valued.  As John Joseph Powell said in his book The Secret of Staying in Love (1974), "It is  one can know their beauty and perceive a sense of their own worth when it is  reflected back to them in the mirror of another loving, caring human being."  Joan did this for me and starting the day feeling loved and valued was great.

We became good buds.  We would decide together what to watch on television, comment on situations as they happened, and have meals together. Often I would set up her meal tray so that she could eat.  I would remove the cover from her dinner plate or take the wrapping off a sandwich and open sugar and butter containers. Over time I would even sit in front of the nursing station with her at her request, something I never could see myself doing since my first observation of this practice.   I would often go to the hospital cafeteria in my wheelchair and get both of us a treat and coffee.  Joan never offered me money for her coffee but that was okay with me because I knew she would not think to do this.  Besides, I don't think she had much spare cash and I was happy to do this for her.  She loved coffee and she would smile when she received it.  When I saw her smile I felt useful.  

That is about what our day looked like, a simple daily routine but the companionship eliminated the monotony. I wondered if life could be this simple. Is what goes on outside my hospital experience with Joan the unnecessary complexity of interactions between each other in the home, at work and in the community?  Could life be as simple as just caring about each other?

Not everything that occurred as a result of my companionship with Joan had positive results though.  I noticed that Joan would slide forward in her wheelchair and the nurses would frequently have to reposition her.  I mentioned to a nurse while she was boosting Joan up in her chair, that if her wheelchair had a longer seat she would not slide forward.  I pointed out that Joan was very tall and needed the length in a wheelchair to support her long legs.  I thought that this was a good tip.  The nurses would not have to worry about Joan slipping out of her chair.  As well, she would not be a high risk for a bed sore due to the tearing forces on her skin when sliding over a wet diaper.

The nurse told me that an occupational therapist had already seen Joan and done a wheelchair assessment.  "Well," I thought. "Does that mean that the current situation is alright?"  Let's say Joan was given a wheelchair with a lengthy seat by an occupational therapist;  Anything could have happened to that chair including hospital staff who desperately needed a wheelchair grabbing the first wheelchair they saw and it turned out to be Joan's and then an alternate one with a standard seat was  provided for her.  Or maybe the occupational therapist knew Joan needed a lengthy seat on her wheelchair but could not find one available in the hospital and planned to continue to look for one but did not follow through. Whatever happened, Joan was unsafe when she was up in the wheelchair she had and it was okay with the nurse.  The nurse thought she had completed her job by just sending the referral to the Occupational Therapy Department and was content to leave it at that, regardless of the outcome.  A simple follow up phone call to occupational therapy could have resulted in Joan being safer when up in a wheelchair and saving the nursing staff many hours of pulling her up when she slid down.

The nurse then told me that I needed to mind my own business.  From that moment on, I sensed any interaction between Joan and myself  scrutinized by the nursing staff.  I didn't care what they thought though, because I was confident that I was not crossing any personal boundaries.  I always had Joan's permission when I helped her and thought that our companionship benefited her as well as myself.  Even though I felt watched and judged when interacting with Joan, I was not prepared for what they did.

It was midnight and Joan was sleeping.  I had just turned the television off and I was prepared to go to sleep.  Four nurses came in and circled Joan's bed.  One of nurses unclamped Joan's nurse call from her sheets which woke Joan up.  

"Remember, we talked about this.  We are moving you to another room" the nurse said.  

Joan started flailing her arms and screamed, "where are you taking me?  I don't remember you telling me.  Autumn, don't let them take me."

"What are you doing?  Where are you taking her?" I asked the nurses

One of the nurses responded with "we are moving her to another room."

"Why?" I asked and got no answer.  I looked over at the empty space where Joan's bed used to be.  I felt like my best friend died.

I continued to ask nursing staff over days and weeks why they moved Joan.  All I would get was vague answers.  Finally one of the nurses who I liked said, "I'm not support to tell you but the nurses felt that Joan and you had an unhealthy co-dependence with each other.  I was stunned.  After mentioning the tip about Joan's wheelchair I realized that my suggestions were not welcome and I never made another one.  I just watched in silence as the care Joan could have received that would have made her life better was not done.  "Did the nurses not know how much time I saved them by getting things for Joan and setting up her meal trays?" I wondered.  None of this made any sense to me and the fact that they did it so underhandedly made me not trust them.  Why would they think I would trust them after that. I guess they didn't care if I did or not.  I know I gave them grief with my clutter but that was not Joan's fault.  Certainly they knew that this would hurt me, they denied me my friend.