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.