A New Start, A Successful Start?

I finally got a space in the rehabilitation hospital and I transferred there directly from the acute care hospital.   It had an amazing atmosphere with wide uncluttered hallways and cheery colours.  I was lucky enough to get a private room with my own bathroom.  The unit had an eating area where all the patients went to dine.  I got to know others with neurological conditions like mine and it was great socialization.  The meals were great and I began to eat again.  I needed to start eating because I had lost 50 pounds since the beginning of my illness and was below the ideal weight for my height.  Everyone from the unit  also went to therapy sessions together.   I felt like part of a community.  

After six weeks in rehabilitation, I was ready for discharge.   I progressed from not being able to pick up a pencil to writing again.  I could walk unassisted but I used my walker for for long distances for safety.  The only limitations that remained that affected my functional status was: my inability to manage stairs; I could not kneel due to loss of feeling in my knees; I continued to have nerve pain and numbness in my hands and feet; and I experienced poor balance in the dark or with my eyes closed.  I needed a stair railing and would lean against the wall as I ascend or descend the stairs and did it very slowly.  I needed a bath seat in the shower to use for when I closed my eyes to shield them from water or shampoo.  I avoided kneeling because it felt like I was kneeling on thick gel pads that dug deep into my knee joint  and it hurt.  Medications took care of the  pain in my hands and feet but they felt constantly tingly and numb. I got used to the numbness and felt it only when I thought about it however could not walk outside without shoes because if I walked on even a pebble it felt like a sharp knife piercing my feet.  I constantly dropped things I was holding in my hands without noticing so I adapted by strengthening my grip.

To determine if I could in fact live on my own my sister Diana had arranged for me to go to an assisted living suite on a trial bases. The suite included a kitchen with dishes and a bathroom to use to take care of myself.  Laundry facilities were available in the basement.   If I got into trouble, I could call for help and staff within the building would be available to assist me almost immediately.

I managed well and just after two weeks I knew I could be on my own.  Because my house sold I was looking for an apartment or townhouse to rent.  My friend Eddie agreed to drive me around and look at some places I found ads for.  I did not ask my sisters to assist with this because they did not think I could manage my dogs and would direct me towards places that do not allow pets.  It was important to me that I get my dogs back.  I had lost so much and I did not want to loose them too.  They were my family.

Eddie was one of the angels in my life.  She is one of those people who brightens up a room when she enters.  Her quiet, calm, kind, confident demeanour made everyone feel safe in her presence.  Her life was dedicated to helping others and I was blessed that she helped me.  She picked me up at the assisted living facility late one morning and by early afternoon we found a place that would accept my dogs.  It was a townhouse with a small back yard where I could enjoy gardening and let my dogs out to do their business.  

The townhouse was not ideal for me however.  It was built on a hill and had five flights of stairs.  Each living area was separated by stairs.  The effort it was going to take to manage all those stairs  was a compromise I was willing to make because keeping my dogs was my priority.  I filled out the tenant form and left it with the site manager who had to do a credit check.  Because I did not have a phone in the assisted living facility, Eddie provided her phone number for the site manager to get back to us.  Eddie then took me for lunch and while we eating the site manager called and said that the townhouse was mine and that I could move in at any time.

Eddie dropped me off back at the assisted living facility. I called my sister Diana and we talked about the logistics of the move into the townhouse and all of the things I would need to get to furnish it.   Nothing had been removed from my house when it sold and so I had nothing to move into the townhouse.

 To start living independently in the townhouse I needed furniture, dishes, cooking utensils, window coverings, linens, personal care items and clothes.  My family donated enough furniture to furnish every room except the bedroom which was a good start.  I went on a local Web site where people advertise things they are selling and I spotted a bedroom set that I liked.  It was vintage, from the late fifties, early sixties, looked in good shape and was cheap.  Trisha went to look at it and reported that it was cute and in good shape and so she bought it for me.

Diana nailed down a time when she and her husband could come up, gather up the furniture  donated from my family as well as the bedroom set that I bought.  They couldn't get up for a week so I spent that week on a Web site where people placed ads for things they were selling, to find things that I could decorate my new home with.  I could not drive yet and did not have my car so I could only buy things that people were willing to deliver to the assisted living facility.  There was a couple of things I just had to have and Eddie agreed to pick them up for me.  It was a good thing I could not drive because it kept the number of my purchases I made on that Web site down.

The day of my move arrived.  Diana and her husband got all the furniture into the townhouse and arranged them in their designated rooms.  They were not happy about the stairs.  Diana then picked me up from the assisted living facility and took me to my new home.  The place looked sparse compared to my last house.  It did not look homey. I was not used to so much empty space.   My brother Jim and sister Trisha were there as well as Diana's husband.  Jim was there to assist with lifting the furniture and delivered something I had inquired about from the Web site.  It turned out that his wife was the one that placed the ad I responded to.  They laughed when they realized that it was me that responded to their ad and decided to surprise me with the item at the townhouse as a gift.

I think Trisha was more excited about my new home than I was.  She insisted that I look at my new bedroom suite. 

"I told them your story and they threw in sheets and an ironing board" she said proudly of her accomplishment in securing the bedroom suite with the added perks.

I was happy with the bedroom furniture and thanked Trisha.

"Just think how this room will look when you get the bed made and window coverings up"  Trisha said with excitement.  'I have to go and touch base at home but will be back later.  Meanwhile Diana is going to take you shopping for dishes and window coverings and linens" she added.

Diana took me to the local Scandinavian big box store to buy linens and window coverings.  We were successful finding everything we needed and headed home to install the window coverings.  As we drove back to the townhouse I observed the traffic on the road and the houses we passed.  "I wonder where that driver is headed" I thought of the car in front of us.  I saw a car drive up the driveway to a house and I wondered where those people driving that car had been, and whether they were happy to be home, or did they come home to overwhelming problems.  I don't remember reflecting on these things when I was out driving prior to my hospitalization.  I had de-humanized the drivers of vehicles in traffic forgetting that it was a  person driving on their own journey and had their own perspective of the world.  "Everyone has their own perspective of the world therefore there are as many worlds as there are people" I thought.   I had not been so introspective before and likely my experience with my illness and disabilities prompted new perspectives and new thoughts.

When Diana and I got back to the townhouse we got the window curtains and shades up however we ended up with an extra panel for the kitchen. The next day she took me shopping for dishes and other household essentials and to return that extra panel of kitchen drapes.  On that second day of shopping we had a good day and got most of what I needed to cook and clean.  Our seamless productive two days ended however when we returned to the Scandinavian box store to get a refund for the extra kitchen curtain panel.  

When we entered the Scandinavian store, the customer service counter which included returns and refunds were immediately to the left.  On the right of the entrance was a bench along a wall which lead to the cashier area.  Diana suggested that I sit on the bench while she got through the line up to the customer service counter.  I sat down and looked around.  The line up to the customer service counter was quite lengthy so I got up and entered the store.  I looked at vases, storage containers and decorative pillows.  My legs started to bother me and it was about time I anticipated that Diana had got through the line up so I went back to the entrance of the store.  I saw Diana sitting on the bench.  Her shoulders were so drooped I don't know what was holding her up.  She stared straight forward with a blank stare.  As I approached her she saw me but her facial expression remained unchanged.  

"Did you get it returned?" I asked

"No" she said, "I had the wrong receipt."

"Oh crap", I replied.  I looked in my purse, found the correct receipt for the curtain panel and gave it to her.

"You don't have to get to the back of the line again." I asked.

"Yes, I have to" she said exhaling a deep breath.

"I'm sorry"  I said.  "I'll meet you back here in a few minutes."

Diana went back to line up for customer service again and I returned  to the store.  I looked at book shelves and desks briefly then returned to the bench.

I saw Diana sitting on the bench, this time she sat leaning forward resting her elbows on her knees.  Her face was again frozen and blank looking straight forward.  She looked stunned and I don't think she even blinked.

As I approached her I asked, "Job done?"

"No, they need your credit card to refund the money."

I got the credit card from my wallet and gave it to her.  Again I told her I was sorry but now she looked like she was in a stupor trying to anaesthetize herself from any frustration and I'm not sure if she heard me.

Diana went back and stood in line again, this time I sat on the bench by the cashiers.  Soon she returned.  Her walk was laboured like every cell of her body was heavy being dragged down by gravity.  The curtain panel was still in her hand.

"What now?" I asked.

"They need your signature" she said with little breath behind her voice.  This time I returned to the lineup with her.  We made our way to the counter and went through the refund process. I signed for my credit card refund and the errand was done.

I wanted to laugh at Diana's body language through out the whole process of returning the curtain panel if it weren't so frustrating for her. Back in her vehicle and on our way back to my townhouse I asked her how she felt.  

"I would have rather put pins in my eyes"  she said.  Then I laughed but not without regard for her tenacity to get things done.  Her fortitude is definitely her strong quality.

When she left that day I sat on one of my loaned chairs in my new living room.  I looked around and thought about how simple the place looked.  There was nothing on the floor or furniture; I had nothing to put on the floor or furniture.  I thought about the contrast of this new place to my previous home.  There was a world of difference.

Because nothing was done to tidy up my house before it was sold, it was listed as sight unseen and the buyer unknowingly inherited the horror inside.  I felt bad for whoever bought it and could imagine their disgust, surprise and colourful verbalizations as they entered the house.  I felt better however, when I found out it was a real estate agent who intended to do renovations and sell it.  It was a bigger job than he expected I would think.  And so I went from a home that I destroyed, to this new townhouse with nothing but furniture and essentials.  Was the move all that was needed to cure my hoarding I wondered?  At that moment I could not predict whether I was going to continue to hoard.

As a well known psychiatric television personality says "You can't fix what you don't acknowledge".  I have been transparent about being a hoarder to all the medical professionals I have been involved with.  However I didn't understand what precipitated my hoarding and therefore had not yet  acknowledge the underpinnings of the disorder.  I didn't know why I hoarded at that point. 

All I knew was that tomorrow I would call the kennel's where my dogs were and make arrangements to have them delivered to me in my new home.  I was so excited to see them.

Hoarder's Hospital Hell

Dear Jacquie,

I spent just short of six months in the acute care hospital.  During that length of time, my hoarding disorder was never discussed with me by the nursing staff.  I was never asked why I needed things around me and had problems throwing things out.  It seemed that the emphasis of the nursing plan for me was to keep my body clean and keep my area clutter free.  I have already talked about the imperative  showers every other day.  I wondered if they read the notes from the emergency department when I came to the hospital and was very disheveled and unkempt.  I wonder if because of the unhygienic state of my body the nursing staff ensured I kept my self clean even though it was very difficult for me to shower as I described in am earlier blog.

I wonder if the hospital staff, knowing I was a hoarder, made an extra effort to make me keep my area clutter free.   Every day there were discussions between the nursing staff and myself about throwing things away that were spread out over every surface available to me, including my bed side dresser, over bed table and window ledge.   In my mind it was logical that I would have a lot of things to live over months that I was there that would otherwise have a place in an entire hose.  I needed every item I had for personal care, clothing, socialization and recreation.   Every item had a purpose.

The nurses did talk me into throwing out the boxes containing the sorted puzzle pieces on the window ledge.  The boxes had been there a while and I had made no progress on the puzzle, mostly because I did not have a surface area big enough to build the whole puzzle.  I came to understand that completing the puzzle was not going to happen so I put all the pieces in the original box and the nurses threw the boxes out with my permission.  All that remained on the window ledge now were neatly folded incontenence pads, hospital pyjama pants and some books. 

I put the incontence pads and pyjama pants I collected from the linen carts, on the window ledge for easy access when I needed to replace the pads on my bed and change my clothing when I could not control my urinary  bladder and get to the bathroom on time.   I was responsible for making my own bed by this time.  I could accomplish making my bed as long as I balanced myself by anchoring a leg against the bed or held my hand on the surface of the bed.  I basically completed this chore one handed and it took me a long time but I could do it and took pride in completing it.  Keeping incontenence pads and pyjama pants near by meant that I didn't have to go to the linen carts every time I needed them.  This worked nicely for a while until one day I was told that I was not allowed to "stock" or hoard these items in my room and they were taken away.

After the incontenence pads and pyjama pants were taken from my room, I tried to hide them.  I discovered one morning however that my hidden items were gone.  This meant that during the night the nursing staff came into my room and went through my things looking for items they could take and throw away.  I had no other strategy for keeping pads and pants in my room so when I had an accident, I would have to hide the soiled wet pants I was still wearing with a long house coat and walk down the hallway to get the pads and pants I needed on the linen cart and return to my room.  After changing the soiled pad on my bed and pants I was wearing with the new dry ones, I would have to again venture down the hallway with the soiled items and put them in the laundry carts. I did not understand why the nursing staff could not see how much easier it was for me to keep the pads and pants in my room even after my explanation, but they would not relent.   I felt shame going out into the public hallway with soiled pants.

It wasn't just hidden pads and pants that disappeared over night.  Pieces of paper on my over bed table also disappeared.  I discovered that when I could not find a receipt for phone minutes my sister bought me.  That receipt had the login number I needed to enter on the phone when making a call.  I looked  for it everywhere between the pages of my books, amongst other papers, in my drawers, under the bed, and between my sheets. I had used it just the night before and in the morning I could not locate it. That receipt was worth one hundred dollars and it just disappeared overnight.   My sister visited later that day and she could not find it either.  She was pissed.

The nursing staff then began to taking items out of my room while I watched them and without my permission.  I often had a container of yogurt on my overbed table.  I was not eating well and the dietician after consulting with me regarding foods I liked included yogurt with all of my meals.  If I did not eat the yogurt, I would keep it for later.  One afternoon a nurse scooped up my yogurt and left my room with it without discussing why. I shouted out to her to leave it.  I wanted it.  She did not miss a step and continued to walk away.   I quickly stood up and using my walker I went into the hallway just in time to see what room that nurse went into.  I then saw her come back into the hallway and went in the other direction to where I was.  I went into the room where the nurse was and it turned out to be the utility room.  It was the place where the dirty laundry carts and garbage was housed.  I looked into the garbage and located my yogurt.  With close inspection I determined that there was no moist garbage that had been in contact with my yogurt, rather just dry paper.  I retrieved my yogurt and was on my way back to my room.  I didn't get far when the nurse who threw it out,  caught up to me from behind,  grabbed the yogurt from me, looked at me and with disgust in her eyes and gestured with her lips  three dry spits at me.  She then said in broken english "dirty garbage, you dirty" and I watched her march away from me while shaking her head. 

I'm not sure that I would have eaten that yogurt, and sure would not have retrieved it had it landed in messy garbage.  Looking back at it I think it was an act of control.  Someone had taken something of mine without any discussion about it and I saw it as an encroachment on my space and disrespect toward me.  I would have initially let her take it if she had explained to me that because the yogurt had not be refrigerated for a while it was  probably unhealthy to eat, and that she would take it but replace it with a new one. I would have let her take it and even felt that she cared about me.  

And so it progressed from taking things away from me secretly at during the night as I slept, to taking things without a word as I watched.   What happened next was a complete mystery to me.   It was in the afternoon during shift change and all the nurses were in a meeting called "report" where thy relay important things that the next shift need to know about their patients.   It was during that time when I heard the stairwell door just across the hall from my room open and close.  Just then a person wearing hospital garb who I didn't know or had never seen before sauntering into my room.  Very slowly with her arms held behind her back, she walked toward me while I sat on the edge of my bed, then she stopped and faced me from the other side of my over bed table.  She looked into my eyes but said nothing and her expression gave me no clue about if she was a friend or foe.  While keeping silent she  picked up many of my things on the overbed table one by one, looked at them then put them back down.

"Who are you?"  I asked.  She again looked at me with the same blank expression then turned around and left the room.

By this time I became suspicious of the nurses intent when "caring" for me.   There was  a wall of distrust I had built up with in me, which created a barrier in any interaction I had with them.  I pretty much got to the point where I tolerated them with passive obedience just to get through my time on that unit.  Then my distrust was validated when late one night a couple of nurses lied to me instead of admitting that they made a mistake.

It was towards the end of my months in the acute care hospital when one night a nurse brought me my sleeping pill in a little paper med cup and placed it on my over bed table.  Usually all my evening meds are brought together, but this night my sleeping pill arrived first, on its own.  I didn't always take the sleeping pill when it arrived depending if I wanted to continue reading or watch a television show.  So, even though my sleeping pill arrived I decided to wait until the rest of my meds come.  Meanwhile I continued to watch television.  

A while later the same nurse that dispensed my sleeping pill to me, came in and took the little paper med cup with the pill still inside.  I thought that was odd but perhaps she was going to bring it back with the rest of my meds.  I didn't have a chance to ask her why she was taking it because she came in and out of the room so quickly, like a flash in the pan.

Then later the rest of my meds arrived brought by the same nurse.  As she turned to leave I shouted, "wait, what did you do with my sleeping pill?"

She paused for a second and then said, "I put the empty paper med cup in the garbage."  

"The med cup wasn't empty."  I replied.  "I did not take the pill.  It was still in the cup."

"No, it was empty." she said confidently.

"No it wasn't.  I didn't take it out of the cup"

The nurse then reported that it was empty or she would not have thrown the cup out and left the room.

She said she threw the med cup in the garbage so I got up and looked in the garbage.  The garbage can was half full.  I noticed a blue streak down the side of the garbage bag that ran from the top to half way down where the garbage collected.  The blue was the exact same colour as my pill.  I thought if I followed that blue streak into the garbage I would find my pill. I was not trying to locate it to take it, but if I found it I could prove I did not take it and I could ask for another one.  I failed to locate the pill by superficial inspection.  The garage was wet and I did not want to venture to deep.  The fact that something in the garbage was wet however provided an answer as to why there was a blue streak down the side of the garbage.  The blue coating on my pill got wet and dissolved leaving a blue mark where it hit the garbage bag.

With my walker I went down to the nursing desk.  The nurse that gave me my pills was not at the desk but the head night nurse was.  I told the night head nurse that I needed another sleeping pill because the one I received was thrown out.  The head nurse said that they could not give me another one because they have to account for those medications.  If they gave me another one their med count would be off.

In an attempt to plead my case I said, "But it is not my fault that I didn't take it."  I said.  "The nurse threw it out."

The night head nurse then reported seemingly with knowledge of what happened, "Your nurse did not throw it out."

"Come with me and I'll prove it to you." I said.

The head nurse followed me back to my room and I pointed to the blue steak in the garbage can.  "That is the outer coating of my pill" I said.

The nurse with a glove on her hand moved the garbage in the can slightly.  "The garbage is wet" she said.

"I know.  That's why it left a streak"  I pointed out.

"The coating on your pill would not dissolve that fast" she said discounting the blue streak evidence.  "It doesn't matter, we cannot give you another pill".

By that time I was livid.  There would be no sleep for me that night, both because I did not take my sleeping pill and because I was too angry to allow my body to relax and sleep.

A couple of hours later while I was reading my nurse returned to my room.  Her eyes were teared up and she said, "I'm sorry"

I looked at her and noticed her sincere expression of apology.  "I believe you are." I said "for whatever reason I understand that mistakes are made.  What made me angry was that both you and the head nurse flatly denied that it happened.  That made me feel so powerless and made me feel like you guys (nurses) are not accountable leaving us (patients) vulnerable."

Again she told me she was sorry and I told her not to worry about it.  I didn't want her feeling bad all night after she clearly was sorry.

The next night when my blue pill arrived I did a coating dissolve test.  I licked my finger and stroked the blue pill.  My finger was coated with blue and where I stroked the pill the white centre could been seen.   Those buggers I thought.  I never thought to demonstrate the coating dissolve test to the nurses.  It didn't matter to me anymore.  I was right, but there was no reason to point that out to the nurses that really didn't care as long as they covered their butts.

Please understand,  I don't think that any nurse woke up in the morning and thought about ways they could treat their patients that  day to make them feel as undignified and powerless as possible.  Nor do I think that my experience in the hospital is the same for everyone. I know hospital staff are overworked and overwhelmed.  However for what ever the reason they did what they did and I perceived it as being authoritative.  

It might seem like I seem sensitive.  That is right, I am sensitive and in my mind I collect or hoard situations that validate me as a victim.  Being a victim is part of the pathology of my Hoarding Disorder.  Because I am sensitive I am trying carefully to tell the facts as they happened and then describe how those situations made me feel. 

As I write this I wish I had more backbone and stood up for my self.  I am not kicking myself for not being more assertive though.  Hiding the fact that I have a hoarding disorder for ten years took a toll on my self esteem which wasn't good to begin with.  A hoarder keeps the secret because they feel that if anyone knew, they would be seen as disgusting.  So the secret is kept because deep inside and you feel like you can't be liked if everyone knew who exactly who you are.  I could have stuck up for myself better while in the hospital but these guys knew my secret.   

I said that not one nurse asked me about my hoarding disorder or address it in any way  while I was in the hospital.  I did not receive a referral to a psychiatrist, psychologist, social worker, or mental health expert.  It was well known that I am an alcoholic as well as a hoarder and that was never addressed either.  There was one moment however when a neurologist asked me a question while doing the morning physician rounds, that lead to the first bit of insight into my hoarding. 

The group of physicians assembled at the end of my bed.  One of them looked at some paper on a clip board, looked up at me and asked, "How are you today?"

"Pretty much the same" I answered."

"Good" he said then the group of physicians all except one exited the room.

The physician that remained behind asked me, "I'm just wondering, what goes through your mind; what are you thinking when you are compelled to buy things?"  

I didn't know the answer to that.  After a few seconds of reflexion it came to me as clearly as if I was saying it out loud.  "If I don't buy it now, I will never get it."  I replied.

The physician smiled at me and commented that what I said was interesting to her then left to catch up with the others.   I'm not sure if she asked me this in an attempt to help me, or if she was curious about hoarding.  Whatever reason, it conjured up the first bit of insight I had regarding my drive to acquire things.  Later on, I would learn how to turn those thoughts around to where I was more than happy to leave things on the shelves at the store or say no to things people were getting rid of and offering to me.

*********
As I reflect on that hospitalization I have come to think that hospitals have evolved to become a cruel prank.  Most people agree to be admitted to the hospital when they understand they have to receive necessary treatment there.   But, when else would a person agree to sleep in the same room with strangers and have them know your business through indiscreet conversations with the hospital staff or family.  When else would a person choose to sleep in the same room with someone who craps the bed,  moans in pain, screams in their confusion, or perishes. When else would a person expect to be seen in public in pyjamas and at their worse while in the hallways.  When else would a person have to separate their emotions and thoughts from their body and throw out any expectation of dignity.  When else would someone succumb to obedience in their vulnerability to keep the peace.  

Hospitals are a place where things are done to you rather than for you.

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.