Catharsis

I never understood why Mom died.  More specifically, I did not understand why she signed a do-not-resuscitate (DNR) order.  I could not understand why she would choose to die while there was still chances that she may live. 

"But what if we tried this? What if we tried that?" is what kept going through my mind while it was all happening.  I wonder if I was grasping at straws in order to deny the inevitable, or if she had simply just gave up.  Part of my was so angry when she decided to unplug her life-support machines.  I could not understand why she wouldn't just wait it out a little longer; what if there was hope just around the corner but she never got to it? 

But then I realized two things.  These realizations are recent, because it is only with time and distance I can even think about those horrible days. 

She was tired.  She had been battling so many things the past few years of her life.  First, and probably the catalyst of what was to come, she had 5 heart bypasses and a replacement of the mitral valve in her heart.  It was a major surgery that held a great deal of risks.  But it was either have the surgery or she would die soon of a heart attack.  So she choose surgery.  It was a grueling surgery and an even more grueling recovery.  She was in so much pain afterwards, for months.  A cracked sternum does not heal quickly or without pain.  She had trouble getting her lungs back to capacity.  She often did not do her breathing exercise. 

The artificial valve, made of titanium, made a very audible clicking sound as the blood circulated through it.  It sounded like the tick-tock of an old clock.  One could hear it ticking away inside her if they sat near her.  The ticking drove her crazy.  It was all she could hear, all the time...tick tick tick tick tick tick, endlessly.  She never became accustomed to hearing it.

Because it was an artificial, metallic valve (as opposed to an organic valve from a pig) she had to take blood thinners to insure she did not throw a clot.  A clot would have meant a stroke or an embolism or a heart attack.  However, blood thinners are tricky.  If the blood was too thin she could bleed out internally or externally if she cut herself.  A person on blood thinners whose blood is too thin becomes a functional hemophiliac, a danger in itself.  If her blood was too thick she ran the risk of congestive heart failure or the above-mentioned stroke/heart attack.  So, she went every two weeks or so to get her blood thickness tested; the doctor would make an adjustment to her blood thinner medication to make sure the blood viscosity was just right.  It was a never-ending battle.  It was a hassle for her. 

Inevitably, he blood did become too thick at one point and she suffered a stroke.  She was at work in a meeting when the stroke hit her.  Her face became numb and dead on one side.  He speech became slurred.  Thankfully she was aware enough to immediately know what was happening to her.  She grabbed the arm of someone as they were leaving the meeting and said "help" at which point 911 was called.  The ambulance came immediately.  She called me at work from the ambulance but misdialed the phone number and ended up calling my boss, who had a similar last name as me (she dialed by last name to get to me).  My boss, pale and with wide eyes, came to get me, because she immediately knew what was happening. 

I got on the phone in my boss's office and mom was trying to speak.  She was slurred, she told me she was having a stroke and heading to Blount Memorial Hospital.  I had never been so panicked in my life.  I started to pass out, everything around me collapsing in a whooshing sound.  Somehow I didn't pass out though, thank God.  My friend Megan rushed me to the hospital in her car because there was no way I could safely drive in my state.  We got to the hospital, got back to her room in the ER and....she was fine.  The paramedics were able to administer the clot-busting medication in the ambulance and the medication worked.  It all could have turned out so much worse.  It wouldn't have happened at all had she been on top of her blood checks rather than putting them off. 

Next, she got breast cancer.  She went to one of those mammogram buses that travel to people's workplaces.  They saw something unusual in her scans.  She went in for a biopsy and the results showed she had ductal carcinoma in situ, stage zero.  This was a type of breast cancer of the milk ducts within the breast.  The cancer was at such an early stage that if she had a mammogram even a month earlier they would not have seen it.  (Side note: never put off getting a mammogram, ladies!).

I went with her to the oncologist appointments.  I learned more about breasts and breast cancer than I ever knew.  She and I would talk late into the night about it while we waited for test results, while we waited for the oncologist to determine a treatment plan.  Because mom had a titanium heart valve it would have been extremely difficult or impossible for her to undergo radiation, because the radiation would have hit that valve and caused all sorts of even worse issues.  Because she was on a blood thinner any surgical option would have been at a much greater risk.  Chemotherapy is not traditionally used for her type of cancer so at least she didn't have that to worry about.

It was decided that a lumpectomy would be the solution.  The tumor was small enough that they could have removed it with wide margins, leaving most of her breast intact.  However, this would also have increased the risk, slightly, that the cancer would/could return if the margin of tissue removal was insufficient.  Mom was adamant that she didn't want that scenario, so she opted for a full mastectomy.  She had the surgery and, once again, she had an awful recovery period.

When one is on blood thinners and surgery is called for, the patient has to be transferred from the pill form of blood thinners to one that involves a series of shots.  This happens prior to and after surgery.  It is time consuming and painful and complicated.  The risks of stroke or blood clots increase because the shots don't allow for "fine tuning" the requisite blood levels of the drug as is the case with pill therapy. Her post-mastectomy recovery was painful and required that her surgical bandages be changed frequently.  She also had a tube sticking out of her surgical site which made it uncomfortable for her to sit or lay or sleep. 

Because of the blood thinners and the roller coaster of keeping her blood at the proper thickness, she began to have complications.  Once, when her blood was too thin, she fell down the stairs outside.  She bled everywhere and she had to go to the hospital to get the bleeding under control.  Other times her blood thinness would turn a simple cat scratch (she was as obsessed with her cat as I am with mine) into a waterfall of bleeding. 

But what killed her in the end was that her blood became too thick.  This lead to sever edema of the legs.  Edema is when you retain water/fluid in your body, causing swelling, usually in the legs.  What is so frustrating to me in retrospect is that all of her doctors were unconcerned about the edema.  A few days before she went into the hospital that last time her heart doctor said it was no big deal and sent her home.  With edema often comes congestive heart failure, so I didn't understand why the doctor was unconcerned.  I was adamant that the doctor was wrong so I implored mom and dad to get her back to the hospital.  They agreed and took her to the ER at Blount Memorial, her home away from home. 

They drained 35 pounds of fluid from her that first day.  Yes, 35 pounds.  That is not a typo. 

They also discovered the prolonged edema had caused the congested heart failure that I was worried about.  They admitted her into the cardiac care unit of the hospital.  Two days later her heart stopped for the first time.  She coded at 4 in the morning.  They brought her back.  She had to go onto a respirator to help her breath.  At that point she did not have a DNR. 

They moved her to ICU.  At that point mom was insistent that point Mom signed a DNR.  She did not tell us about it or talk to us about it before doing it. 

She coded again.  Her heart stopped in the ER.  She rescinded her DNR and allowed them to save her.  I am not sure of the specifics; I assume she was still conscious as it was happening so she gave them the OK to continue.  It is common practice to ask a patient if they want to rescind a DNR, along the lines of "nod your head if you want us to rescind the DNR".

While in the ICU it was discovered that she had ulcerative colitis.  Basically she had an ulcer in her colon, causing her bowels to be in array (I won't go into details).  This was causing waste fluid to leak into her blood though, which would eventually cause sepsis and death.  She was too medically unstable to receive surgery to fix the ulcer yet she would die without the surgery.  And yet she had improved just enough that they were able to take her off her respirator a few days prior so at least she was breathing on her own again. 

Surgery would require her to go back on the respirator, and the doctor said she had a very very slim chance that she would ever come of the respirator a second time.  What do you do?  How do you make an impossible choice? 

Mom decided to do the surgery.  At least a maybe-death was better than a certain death.  Miraculously, she made it through the surgery just fine and went back to the ICU. 

Another miracle happened when. against all odds, she was able to come of the respirator a second time.  She improved.  She was moved to a regular room.  We were making plans for her to return home.  She was having trouble swallowing though, not uncommon for people who have been on a respirator for a long period of time.  Granted, she had been in the hospital about 6 weeks at this point, a long time as far as respirators go.  But she WAS improving.  Mom gave me a shopping list of things she would need once she returned home...Here is the list I made on June 12th; I still have it in my phone:

Not a very big list.  but it represented a future of having my mom back with us again.

She coded again.  She again rescinded the DNR.  She went back to ICU, back onto the respirator.  The chances of her getting of the respirator a 3rd time were slim to none.  It was a huge setback.  It was something I could never, to this day, wrap my head around.  We were a couple of days away from her getting to come back home and now...what now?  We were in limbo.  The doctors were talking about long-term care options, such as having a ventilator at home.  Mom did not want that.  I don't think anyone would want that, and yet, I held onto that because at least she would be at home, alive.  We sat in limbo, waiting.

At this point I had taken a leave of absence from work and was staying at the hospital 24/7.  I couldn't not be there.  The nurses were so kind and thoughtful the whole time.  They brought me blankets and pillows and let me go back to see Mom outside of ICU visiting hours.  I got to know the hospital's every corner, every nook and cranny.  I knew when the cafeterias opened.  I knew the quickest way to go outside and the shortcuts to get through the hospital quickly.  That whole time seems like a blur to me now but I can still remember it all so clearly, a curious paradox of memory.

It was at 8 am one morning when I was in the waiting room watching TV.  I was there alone.  Dad had went to work, the cousins had went home for rest.  We were all in a holding pattern, just waiting for something to happen, waiting for some sort of outcome to occur. 

The ICU nurse ran to get me, told me to come quickly.  I thought she had died.  I was so scared.  I was alone. 

Mom was fussing with the respiratory therapist.  The goal was to wean her off the respirator.  I was not sure what the fussing was about until the respiratory therapist spoke to me outside.  She asked me if my mom had a DNR, though it was clearly marked on her doorway.  There was some confusion because up until now mom had rescinded the DNR each time something happened.  I explained she did have a DNR and it was still active.  I hated that DNR and disagreed with mom greatly when she told us or the doctor's told us (I am not sure how I found out about it exactly) about it.  The nurse told me mom kept writing on her pad of paper "let me die, let me die".  One can't speak while on a respirator so patient's usually communicate by writing.  I went into the room and saw the pad of paper and my mom was crying.  I had never seen so much pain in someone's eyes and don't think I ever will again.

I watched her write again on her pad of paper..."let me die".  I tried so hard to keep it together, for mom.  I didn't want her to know how bad it hurt me to see this and I didn't want her to see me crying or upset.  I can't get her eyes out of my mind, I see them now as I am writing this.

I go out to the hallway with the respiratory nurse and one of the ICU nurses.  Her ICU doctor was paged and met us.  The hospital social worker came.  I believe a hospital lawyer was there too.  I was distraught and confused about what to do, if there was even anything I could do.  The doctor explained to me they could not go by what she wrote because she had just received an injection of pain meds an hour or two earlier.  Because she had narcotics in her she was not of sound mind and thus they could not act immediately on what she had written.  It was decided, and I agreed with the logic, that they would test her blood and when the narcotics were out of her system they would inquire further on her wish to die.  I called Dad, I called my brother, I called everyone.  I explained what was happening.

A few hours later the narcotics were out of her system. Dad was there by then.  We all went back to her room, Dad and I and the other medical staff.  We had already explained to her about the narcotics and how we were waiting for them to clear her system.  We asked her what she meant by what she wrote earlier.  Again she writes "I want to die". 

It was then I knew it was all over.  There were to be no more miracles, no more chances, no more hope.  Mom was exhausted.  She was so tired.  From our viewpoint watching from the outside all we could see is "but let's try this, let's try that...give it more time, keep trying". 

But from Mom's perspective I can't even begin to imagine how tired she must have been.  She fought so bravely for so many years....through major heart surgery, stroke, breast cancer, functional hemophilia.  Mom was done.  She simply had no more left to give and now I understand that.  It is so easy and blasphemous to say what you would do in that situation but until you are the patient in the bed none of us will really truly know.  Mom didn't just decide to leave us; she did the best she could.  She just didn't have any more in her to give. I often wonder if part of her decision was that she didn't want us to have to take care of her.  She had said many, many times in her life she didn't want us to take care of her.  She said this as much when she was well as when she was sick so I believe that is what she felt.  I think the prospect of being tied to a respirator at home was too much for her to handle.  So, she chose to have live support unplugged.

In a way it was a blessing that she was taken off the machines.  She was able to speak, though in a whisper.  She was able to write down the specifics of her funeral: she wanted roses, which was bizarre as she had never previously shown any special affinity for roses.  She wrote down the songs she wanted played at her funeral and what song she wanted my cousin to sing at her graveside.  She wrote down that she wanted me to stay with Travis, that he was good for me and good to me, regardless of the deep issues he and I have been having at the time. 

It was all so surreal and I felt detached from the reality in front of me.  I think the only way I made it through those times was to become detached, a detachment I have had for years now.  Today is the first time I have written or really spoke of those days, because the pain has been too great.  I have been so angry that she let go, that she gave up.  I always intellectually understood the stages of grief but never really believed those stages to be correct.  The stages of grief model is useful, but rather than stages grief is more like a tornado.  Emotions and acceptance and anger and  bargaining and acceptance are not neat little flow charts of one thing leading to another.  Grief means you feel all of these things at different times and sometimes at the same time.  There is nothing neat and tidy about grief.  Grief is never linear; it is constant, it is messy, it is cathartic, it is sad, it is a relief...all at the same time.  I know now Mom let go because that was the only option left to her.  I know love impacted her decision along with exhaustion.  I know she would not have wanted to ever leave us and I know what we want is not often mirrored in the reality in which we find ourselves.  I want mom back but that is not the reality.  I want things to have turned out differently, but that is not the reality.  Mom and all of us wanted another miracle but that was not the reality.  All I can do is be comforted that she is in a better place and she is not hurting or suffering.  It has taken me all this time to understand that and believe it.