Death and Dying

My mother passed away quite peacefully earlier this week surrounded by 4 of her 5 living children and a wonderful Hospice nurse.  It was beyond lovely.  We were talking about her, telling stories, and she quite simply took her last breath and "gave up the ghost."  It was an unbelievably wonderful experience.  She was not in pain, went on her own terms, and she was feelin' the love.  

I had been staying in my mother's room at the nursing home for five nights prior to her death.  The nursing home was totally supportive of her and the family.  They transferred her to a large private room so we could all come and go as we wished.  We maintained a 24/7 vigil so she would never be alone. It was fascinating to observe the organizational behavior in a nursing home, and I came to know many of the staff members.  I can tell you they are overwhelmingly good-hearted folks. They all seem to do the very best they can.  The nursing home staff spend their days and nights working hard, quietly caring for and about people.  I noticed they proudly and carefully built relationships with each patient. I was moved by the many nurses, aides, food service workers, custodial staff, and administrators who came to her room to say their goodbyes, or to see how she was. They all seemed to genuinely like her. They told stories about her. They knew her.  Their kindness was an extraordinary gift.  Is the nursing home a perfect place?  Not by a long shot.  But what is?  Seriously.  Everyone is just trying to find a way to roll with the punches in this mysterious world we inhabit.

It took my mother a week to die.  She had been faring poorly for weeks, and had been refusing to eat.  She had a stroke during the night and did not wake up on February 24.  As always, my younger brother and sister were right there to take care of business.  When my older sister and I arrived from opposite coasts on Wednesday, February 25, the nursing home staff was still trying to give my mother morphine for the pain.  Unfortunately, she always had a bad reaction to morphine.  Wednesday afternoon we called Hospice.  A Hospice nurse arrived Wednesday evening to evaluate Mom and to set up her new pain management routine.  This particular nurse had started her day at 6:00 am that morning and would not go home until close to 11:00 pm that night. She was determined to stay until she found a better painkiller for Mom than morphine, and she did.  She found dilaudid the wonder drug.  Thank you, Hospice Nurse.

The Hospice nurse first tried to increase the morphine, because increasing the dosage sometimes works.  We tried that, but it did not work for Mom.  Morphine made Mom agitated and uncomfortable.  The Hospice nurse immediately sat down and did some research.  Mom was in the advanced stages of Parkinson's Disease and could not swallow pills.  Hospice Nurse found a liquid form of a drug called dilaudid that could be administered to Mom orally.  Unfortunately the local pharmacies did not have that particular liquid version on hand. The bad news: it had to be rush ordered from Indianapolis, 3 hours away.  The good news: the company would send it out right then and it would arrive before morning.  As soon as it arrived she would be administered the dilaudid and she would then be free from pain.  In the meantime, Hospice had the nursing home staff continue giving her adavin and morphine to try to relax her and free her of the pain caused by Parkinson's Disease cramping.

That was my first night in the bed next to hers.  By the time I awoke at 5:30 Thursday morning, I figured the new drug had arrived.  The medications given throughout the night were wearing off and Mom was grimacing and writhing once again.  I went to the nurse station twice asking for them to start her on the dilaudid.  I had been told the dilaudid arrived in the wee hours of the morning, but it had not been given to Mom yet.  Each time I went down there the Night Nurse told me they would get it to her in “a few minutes,” but no one came.  I was trying to be a nice person, but you know – my sweet mother was in great pain and I was the only one there to make it stop.  It was a job I did not want, but it was a job I absolutely had to do well.  I did not want to get angry, but my patience was wearing thin.  One of her favorite nurses aides stopped by to see how Mom was doing.  I told her what was going on and how many times I had been down there begging for help.  She said she would remind the people at the nurse station to bring the drug to us as she passed them walking back to the residential area of the nursing home.  She also told me to press the button on the call light for help to get their attention and remind them I was waiting.  At this point my sweet mother was literally writhing in agony.  I pushed that damn button and waited for 10 long minutes, but the Night Nurse never answered the buzz for help.  She never acknowledged it. Damn it!  I had to leave Mom alone again and speed walked down to the nurse station to demand the new drug.  I think of that movie with Shirley Maclaine running up to the nurse’s station screaming for pain meds for her dying daughter.  I get it.  I had to get right up in someone’s face to get some attention. I told the Night Nurse not to tell me again she would get the drug to Mom in a few minutes unless she specifically meant she would be there in 180 seconds, because that’s approximately what a few minutes are.  I told the two nurses that I understood they were busy and I knew they were understaffed, however, my mother was dying in agony and it was not about us, it was about her.  They were undergoing a changing of the nursing staff (from night staff to day staff) at that moment, and they made me wait another 10 long minutes for them in the room as my mother moaned and grimaced in pain.  Ten minutes, by the way, is 600 seconds.  I was in tears.  I was failing her when she needed me most.  I was not able to find the right words or do the right things to stop her pain.

When the Early Morning Nurse finally came down with the painkiller, she was clearly angry with me.  She told me that she was actually giving my Mom the pain meds 15 minutes before they were due.  I could not *&^%$# believe it.   Night Nurse had not updated the Early Morning Nurse at the change of guard about what was happening with the change in Mom’s pain meds.  I told Early Morning Nurse this was not a routine procedure, so when her drugs were "due" was not relevant.  I told her Mom was being taken off the morphine that morning because Hospice had determined it was not helping.  I told her Mom had never had the dilaudid previously AND that we had been waiting all night for it.  I told her that we had been promised that it would be administered as soon as it arrived.  I could not tell Early Morning Nurse exactly what was on my mind right then because, well, Mom was there and who knew what she could still hear. 

Early Morning Nurse was clearly hearing this information for the first time.  The realization that this was a simple "mistake" (yeah, let's call it a mistake) at the worst possible time nearly did me in.  My eyes were rolling back in my head and veins were popping out all over my forehead.  Clearly when I was down at the nurse station they were just “handling” me, biding their time until they thought Mom’s meds were due.  Why they kept saying they would be down in “a few minutes” instead of just telling me the truth (i.e., “We are not going to give her any more drugs until she is due for more drugs”) I will never understand.  It was the most infuriating example of “by the book” mentality and lack of communication I have ever experienced.  Had they told me the truth, I could have respectfully solved the problem immediately.  It was, as my sweet Mom would say, a sin and a shame.

This was the only bad experience we had with the nursing home during that long week of death and dying.  Hospice straightened everything out once they were informed and there were no further issues, nor any pain after that.  I made up with Early Morning Nurse (there was some hugging involved) as well as Night Nurse (who I actually came to like by the end).  I forgave them, they forgave me, and we got on with the business of dying.