The Red Stain

Dad's cancer progressed quickly; he had lost a lot of weight and his skin became pasty in colour in just one month.  He was getting chemotherapy to control the pain and prolong his life as long as possible.  When his pain became unbearable, he would be on a pain management plan only.  His desire was to stay at home for as long as he was able to.

On one of my visits with Mom and Dad at their place, while sitting at the kitchen table chatting,  Dad got sick.  He jolted up from the table and headed toward the bathroom.  He took a couple of steps then became unsteady and sat down on a chair in the living room.  He doubled over in the chair and vomited blood on the white carpet.  When he felt better he stood up from the chair and said he was going to lye down in his bedroom.

I grabbed some carpet cleaner and sprayed the red spot on the rug.  I dabbed it to get as much of the stain out as possible.  Mom stood hovering over me and asked if the spot was coming out.

"I don't know if it will come out."  I said and then changed the focus from the stain to what was more important.

"You know what this means?" I asked her nodding my head thinking that Dad needed medical intervention in the way of an intravenous fluids or a blood transfusion.

"Yes."  she said.  "But your father won't go to the hospital."

I paused in thought about what I was going to do.  It was dad's decision and if he wanted to stay at home we would get palliative care services through home care.  One of us siblings would have to be there at all times because mom would freak out if on her own during situations like the one we had just experienced.  There was only one thing to do and that was to ask dad to make a decision about whether he wanted to go to the hospital or call home care.

I knocked on his bedroom door and entered the room.  I found him lying on his bed.

"Dad, now is the time you have to decide whether you are going to the hospital,"  I said.

I didn't mention that if he went to the hospital likely he would not be coming home but that was understood.  He placed his left arm over his forehead but said nothing.

"I'll give you time to think about it.  Let us know what your decision is when you are ready,"  I said as I slowly and quietly shut the door behind me.

I headed back to the kitchen table and sat down.

"What did he say?" mom asked.

"He is deciding.  We need to give him time:"

"How long?"  mom asked.

"As long as it takes."  I replied knowing that it was a big decision.

If he decided to stay home, homecare services would be required on daily bases, possibly more than one visit a day to manage the intravenous and pain medication.  As he got weaker he would need help to the bathroom, then assistance managing body functions in his bed.  I knew he was reconciling all this "invasion" into his home in order to remain there.

If he decided to go to the hospital, he would be saying good-bye to the home and comfortable surroundings he worked for all his life.  His home is where he can be himself  and be surrounded by his family.  In the hospital he would become a patient; just a person in a bed known by that bed number, who had to fit into an institutional routine, with a roommate that is a total stranger.  The stranger and his visitors would know everything about Dad's bodily functions and status of his death.  These strangers would possibly be the last people he sees or says something to.  I can't imagine being faced with that decision; home or hospital.

Mom and I waited at the kitchen table for him to surface from his bedroom.  It took a while.  A couple of times we looked at the clock and wondered how much longer it would be.  As far as I was concerned, he could take all the time in the world to make a decision with such gravity.

Finally dad emerged from his bedroom and simply said,

"Okay, let's go."

"Okay,  I'll make the arrangements to get you there." I said to reassure him that he didn't need to fuss with any planning to get himself to the hospital.

He then went back to his bedroom to lie down.

Since Diana ended up being Dad's medical coordinator I called her to let her know the situation.  We agreed that an ambulance should be called because Dad was too weak for anyone to manage getting in and out of a car.  Besides, an ambulance with paramedics attending to Dad would be a better situation for him if he got sick again.  Diana said that she would let Trisha know and meet up with us at the hospital.

I took mom with me in my car and met up with Dad and his paramedics at the hospital.  He had been checked in at the emergency department reception desk and Dad on his stretcher was placed in a hallway to wait.  It didn't take long for Trisha and Diana to join us.  Diana informed us that she had called our brothers Carl and Jim.  They both came to the hospital as well.  Diana had made arrangements for Dad's Oncologist to come to the hospital to assess Dad and let us know what we could expect and then Dad would have to make a decision about how aggressive he wanted any further treatment.

We waited for hours for Dad to be moved into the emergency treatment area.  While waiting we found a chair for Mom to sit in beside Dad's stretcher and made sure at least one of us was with them at all times.  While we waited we took turns getting coffee for each other.  I took breaks from the emergency room and walked around the hospital hallways occasionally sitting in chairs where I found them on my journey.   Often my brothers and sisters would run into me while we each paced our chosen hallway circuits and stopped to talk, then proceeded with our pacing.  I wondered how Dad was feeling but didn't ask him when I checked back where he was waiting.  He seemed to want to drift into sleep and so I didn't initiate conversation with him.

When I waited with Mom and Dad I noticed him jerk out of his sleep and Trisha pointed out that the head of Dad's stretcher was just adjacent to a door that staff frequently opened to go in a room and let the door go to slam shut.

"Oh my gawd!" I said to Trish when I then witnessed it happen.  "They don't know that the door bangs shut right by Dad's head"

I then tried to point this out to each of the staff as they let the door bang shut but I could not get their attention as they hurried in and out of that room so I got a piece of paper, a marker and tape from the emergency reception desk and put a sign on the door saying,

'Please do not let the door bang shut."

It didn't help.  No one took the time to read it;  I don't think anyone noticed it.  Getting in and out of that room without delay was a priority to the staff.  They did not notice anything around them as they hurriedly performed their routines mindlessly.

Finally Dad was taken to the emergency nursing station which was laid out with a long row of stretchers each encircled by a curtain which could be opened or closed.  Again we waited.  I knew there was private waiting rooms in the emergency department so I asked the charge nurse behind the desk if we could occupy one of these rooms.  The charge nurse told me without looking up from the desk that those rooms were for families who had someone here in a serious condition.

"My Dad is dying, the whole family is here and waiting for his doctor to assess him and let us know what to expect.  We have to make a decision about his future treatment," I told her in an attempt to plead my case for needing a private area.

"He's dying?"  She asked.  Now I got her attention because she raised her head to look at me.

"Where is he?" she asked.

I pointed in the direction where Dad was and told her our last name.  Immediately reacting to my information she asked a nurse nearby who heard our conversation to check "Balmes" in bed 18.  The nurse went to my Dad's stretcher, grabbed the closed curtain around him and with one extended arm motion whipped the curtain open.  The investigating nurse then whipped the curtain shut with the same determination that she opened it and shouted to the head nurse behind the desk,

"He's not dying."

I walked away from the desk, very embarrassed and felt bad for my dad as I thought about what had just happened from his vantage point.  I didn't go to him to explain why a nurse would suddenly whip open the curtain, then just as quickly whip it shut and exclaim so everyone around could hear that he was not dying.  I left the emergency department and journeyed on one of my favourite hallway routes.  During my journey as I though about my conversation with the nurse behind the desk, I resolved that the private room was being saved for family members of serious trauma patients.

Gradually I built up my nerve to return to the emergency nursing area and I met up with Diana.  She explained that Dad's oncologist did not come to the hospital but did a consult with the emergency physician over the phone and they decided to admit dad.

Thinking ahead I mentioned to Diana that we should ask for a private room.  If this was going to be the place we were going to say good-by to Dad I wanted it to be as private and intimate as possible.

"There may not be a private available now but he would be a priority on a wait list to get one." I said to Diana.

"How do we ask for a private room?' Diana asked me.  She relied on me for this type of thing because of my familiarity with hospitals having worked in them for years.

"We should ask at the nursing station." I said looking over to the desk hesitantly because I did not want to see the same nurse there as when I asked for a private room.

Yup, she was still there and I grabbed Diana's arm and pleaded with her to go ask for a private room. Diana denied my plea because she felt I was the one who knew how to get these kind of things done.

"Okay," I said, "but you have to come with me.

Diana and I sheepishly waded over to the desk and stood there not wanting to interrupt the nurse but at the same time hoping she would notice us and ask us what we wanted.  To no avail, she ignored us.  Diana nudged me in the arm with her elbow and under her breath said,

"Say something."

With trepidation I said, "excuse me."

The nurse looked at me but said nothing.

Quickly while I had her attention I said,  "My Dad is being admitted and we would like to request a private room"

Her response was quick and to the point and dismissive.  "You need to be grateful that he gets a room at all."

Diana's mouth drooped open and her eyes began to glare.  I grabbed her arm and pulled her away from the desk.

 "We are not going to  get anywhere with her.  I know who to call tomorrow during business hours with our request.  Lets get something to eat while Dad is transferred upstairs to his room." I said.

We asked Mom and Trish if Dad had been given a room number.  He had, and Trish shared the room number with Diana and I and then we went to the cafeteria to decompress.

After eating we roamed the large hospital looking for Dad's room number.  We found  the room and entered what could be described as no less than the muddled pandemonium of Abaddon.  They had put Dad in a bed in between two other beds in what was considered a two bed room.  Beside Dad's bed was a plethora of poles with hanging intravenous bags, a blood transfusion, and vital sign monitoring equipment.  The nursing staff had to side straddle manoeuvring around the poles to get to Dad.  Because there was not room for any of us to be beside the bed  we stood in a group slightly removed from the foot of his bed limiting us to mere observation.  I'm not sure that Dad knew we were there.

Because there was no opportunity to visit and because it had been a long day I decided to go home.  I announced my decision to my leave.  I told my mom of my intention to get Dad moved to a private room the next day and left.

As I drove home I reflected on the events of the day.  I witnessed my Dad  bravely choose to "walk away" from his home and all that he had worked for all his life;  from his personal space in the world to the unknown.  As a hoarder this would be impossible.  I had walked away from my house of horrors but I was forced to because of my illness and I did not know that I would not be going back there.   When my sister took me to the hospital I did not think about whether I would return to my home or not.  If I was challenged to go to the hospital and never return home again I likely would have chosen to stay at home to at least clean up first, then go to the hospital.  The state of my house and my guilt about the state it was in, was always prominent in any decision I made including choosing between my health and guarding my home ensuring that no one entered into it until I have made it presentable.

My Dad himself chose to leave everything whereas a hoarder cannot part with anything.  What is more remarkable about his decision was the extent of it.  He never spoke or enquired about his house, things or anything  that needed to be done thereafter.

I did phone the bed management coordinator at the hospital the next day and explained my Dad's situation and requested a private room.  I also described the interaction I had with the nurse at the desk in the emergency department the day before.  The bed management coordinator apologized for the way my family was treated  She asked me if we had been asked by anyone what type of room we wanted, be it a ward with four beds, a semi with two beds or a private.  I told her we were not asked.  She then pointed out that it was hospital policy to ask and again apologized.  She put Dad on a wait list for a private room with a top priority status.  He got a private room later that day.

I liken Dad's experience on that day in the emergency department to what my beloved beagle Mindy went through the day I had to euthanize her.  She was fifteen years old and I knew her day would come.  She had already been diagnosed with kidney failure and I diligently watched her for signs of poor health.  Over time she stated vomiting daily and she was became frail.  She didn't move unless she had to.  I held her close and cuddled her for a couple of days when I noticed she had a rapid heart rate that remained consistent over that time.  I asked the vet how much longer Mindy could live like this and I was told  it could be a couple of weeks.  I did not want her to suffer for that long so I called a friend to come and help me take her to the vet to end her trauma.

We had got Mindy to the vet and we were placed in a room to wait.  Mindy was placed on a doctor's table and I held her in my arms while we waited.  I could see in Mindy's eyes that she knew she was in trouble.  That was bad enough but she started trembling when hammering and drilling on the other side of the wall began.  This was not the peaceful death I wanted for her so I asked to be put in a different room but even in the new silent room she continued to tremble.  She trembled and then went completely still.  To this day I feel bad about this and remember herMindy's trembling as part of her death experience.  No dog, much less a loved one should have to experience trembling fear during their last moments in life because of  the mayhem around them.  I also remember vividly to this day what happened to Dad the day he surrendered his death experience to the medical profession.

The phone call you knew you would get at sometime that you always regretted.

Things had become routine in my new home.  I walked my dogs daily at the off leash park by the river.  Others at the park liked watching my dog's particular antics in the river and I liked watching the their amusement  while they watched my dogs.   Morgan, the black lab would pound the water's surface with her big paw causing an upwards cascade of splashes which she would then try to catch in her mouth.  Mindy, the beagle would race with other dogs to catch a tennis ball I threw into the river.  At the off leash all dogs innately know the rules and catching a ball often became a team sport.

My niece Daria and her husband Ansel had a beautiful husky they named Askar.  They lived in the city and liked to exercise their dog at the off leash.  On occasion we would walk our dogs together.  We had decided to walk the dogs together on an upcoming Saturday.  Meanwhile my dad was waiting for news on a biopsy he had on a stomach tumour.  He had been complaining about stomach reflux and had difficulty eating when the doctor had discovered it.  Our family did not have a history of cancer and I was confident that the growth was benign.  Either that or I was in denial because I was not worried about his diagnosis at all.

It was that Saturday morning Daria, Ansel and I planned to walk the dogs at the off leash when Diana called me with the news that our dad in fact had cancer.  When I heard the news it felt like I had been slapped by a cold wet rag which left me stunned for a moment.  I said nothing.  Diana continued,

"we are all going to mom and dads so I'll see you over there?"

"I'm walking my dogs with Daria and Ansel and then I'll be there"  I said.  "Does Daria know?" I asked.

"Yes."  Diana said.

"Okay," I said, "I'll see you at dad's later,"  and I hung up.

Daria and Ansel with Askar met me at the off leash as planned.  I remember it was a great day.  It was in the summer and the sun was shining but it was not overly hot.  We headed off on the off leash trails and talked about dad's diagnosis and what the immediate future was going to be like.   We talked about if we thought his disease would be quickly progressive and how much he would suffer.  We talked about how we should not have been surprised at the diagnosis given the difficulties he was having eating lately with his poor appetite and acid reflux.  We reflected on how he was looking thinner these days and had no energy.  We talked about other people's experience that we knew of, with cancer in an attempt to predict what he would be going through.  We talked about how we thought my mom would deal with it.  All this talk was rational and unemotional.  I think we might have been in the denial phase of the grieving process.  I also think that being in nature with the sun  caressing our skin and then permeating into our souls facilitated a sense of calm.

We walked for over one hour at the off leash park and then headed over to my mom and dad's home.  I was so happy that I could walk that long.  We walked slowly which allowed me to walk further and longer. By the end though my legs were burning and I had reached my limit.   When we arrived everyone in the family that did not live far away were already there.  We were greeted with background chatter and bursts of laughter.  It was like a normal get together for a bar-be-que for example.  No one was talking about the cancer.

Diana's greeting however was not so usual.  When a hug would have been normal, especially at such an occasion where we were together to digest bad news, instead she simply said,

"Where were you.  I thought you'd want to be here sooner?"

"You knew Daria and I were walking the dogs at the off leash park."  I replied appealing to her sense of logic.

With her eyes fixed on mine she said, "I just thought you would want to be here."

I could not respond to her thinking that I should have been at dad's sooner than I had arrived .  All the thoughts about why I felt that I could take my time joining up with the family, and my thoughts about why she would want me there without haste circled around in my head and I could not land on a reply.  Adding to my confusion was my hurt by the way she approached me.

My interaction with Diana set the tone for the rest of the gathering for me.  I was hurt, went into my self doubt mode and became introspective in all I did and said making myself feel awkward inside.  I have been this awkward many times.  It doesn't take much for me to feel judged because I house the fear of being judged.  As Criss Jami in his book Killosophy said,

“It has always seemed that a fear of judgment is the mark of guilt and the burden of insecurity.” 

I experience guilt when I too quickly take on  the victim role from my self perceived judgement.

I regret now feeling that way because that evening for me became about me and not the reason I went there, to be with everyone dealing with horrible news.  Notice I say "regret" rather than "feel bad" that I allowed myself to get hurt that evening.  I regret that I did react this way, but I am not holding myself accountable, do not feel guilty or bad about myself.  I can see it this way now, but at the time and many other times,  I react by taking on the victim role.

Thinking back to that evening, if I'd been more aware of my propensity to react like a victim I could have stopped it in it's very quick charge on attach and either made fun of Diana's expression or out right asked if she was upset about something.

Diana would have either laughed, said there was nothing wrong or told me what was bugging her, most likely one of the first tow even if something was bugging her.  She is not good at talking things through.  I also know when she feels attacked and not to proceed.  Her fight or flight response is neither.  She freezes like a rabbit.  I have never made her freeze but I have witnessed it.  She freezes and doesn't even blink.  I didn't think it was humanly possible for a person to not blink for an extended period of time but her facial expression froze she did it one time for a good half an hour.

As that evening wore on although I remained feeling awkward emanating from my self inflicted guilt.  I did come out of my introspective shell however long enough to wonder why we all were there.  Were we there to make ourselves feel better or for dad to feel better.  I didn't know if dad wanted to be alone for a bit to digest the news but he wasn't given the choice.  I have experience working with dying people and their families and I know for sure that everyone handles bad news and grief differently and there is no way to predict anyones reactions.  To make people's responses even more unpredictable, just add into the mix the family members relationships with each other and who takes on what role in crises.  As dad's illness progressed, I would find out how my family's dynamics would play out.

In the midst of all the activity around my dad,  I approached him and asked him if all the activity around him was something he wanted.  He looked around and said,

"It's nice I guess, to know everyone cares.  but I need to make sure I have a good picture for my funeral.  I don't think there is a good recent picture of me to use at the funeral."

We then got the family photographer, who had her camera with her to take pictures of dad and some group photos.  Dad chose one of him that he really liked and that is the one we used as his portrait at his funeral.  We all have a copy of that picture as well.