coming out of my shell

coming out of my shell

Sunday, March 15, 2015

Wait a Minute!

Hey, wait a minute!  Do you remember last time when I said there were no further incidents at the nursing home?  I forgot something.

This post is a bit macabre.  Please note I am a fallen away, pre-Vatican II Roman Catholic, so I can quite literally go medieval on your ass.  I stopped going to church in the late 1960s when the Catholic Church instituted reforms to modernize the mass.  Because I stopped being a Catholic at that point in time my religiosity has never been altered or modernized.  I take my spirituality straight up and I yearn for dead languages, strong incense, and Gregorian chants.  It is a religion that no longer exists in reality, but it is still and always a part of who I am.  I am culturally Catholic in the same way that non-religious Jews are culturally Jewish.  There is nothing I can do about it.  If you do not want to see this side of me then please do not read the following.  Wait for my next post where I promise I will leave death and dying aside.  I may even write about the beautiful weather we are having.

So much was stolen from my mother's room at the nursing home, at the assisted living place she lived in before she was moved to the nursing home, and at a rehabilitation center she was in for a short time a few years ago after surgery.  I am not sure if the wretched thieves were aides, nurses, roommates, or other wandering residents - but multiple people stole things from her rooms in each place.  It is a sad fact of life at nursing homes.  We learned to move anything of value to my sister ERB's house.  What innocents we were at first.  I still have a hard time imagining how someone could feel they are entitled to steal an old woman's belongings when she is at her weakest and most vulnerable.  The assisted living home where she lived for about 5 years before being moved to the nursing home last year was the worst.  Drugs and candy were always disappearing.  Before we figured it out someone stole her diamond engagement ring out of her dresser drawer.  It was supposed to have gone to my baby sister, ERB, as a reward for spending all those years being her principal caregiver.  You might ask, "Why did you let her take her jewelry to a place like that?"  I might answer, "Try telling an older woman who is still in her right mind that she can no longer keep her engagement ring with her when she moves into a private, one-bedroom apartment in an assisted living home."  

The coup de grâce came when she was dying.  Someone stole both of her favorite rosaries from her home-room (let us call it the "living-room") while she lay dying in a different room (let us call that room the "dying-room") in another wing of the nursing home.  She was moved from her "living-room" right after she had the stroke, and for the following week she was in the "dying-room," a large private room where the family could maintain a private vigil.  Her two rosaries were always draped over a picture frame next to her bed in the "living-room" so she could reach them if needed.  One was her special rosary; the one she specifically stated, in writing, was to be buried with her.  It was given to her by one of her sisters, and it had been blessed by Pope John Paul II; a man who was also a victim of Parkinson's Disease.  He died, has been proposed for sainthood, and will eventually be canonized.  He was an absolute rockstar to my Mom. 

We should have retrieved those two rosaries and put them by her death bed, I know, I know.  If only I could turn back the hands of time.  We were all a mess, though.  I must confess no one thought of it.  We were overwhelmed.  We rarely went down to her "living-room." I could probably come up with a few more excuses.  However, in retrospect I must say: "mea culpa, mea culpa, mea maxima culpa," which roughly translates from the Latin as "It's my fault, it's my fault, it is REALLY my fault." 

I know theft is a crime, but please humor me for a few minutes while I consider the act as a sin.  This rosary theft is a sin not only against my sweet mother and her family, it is a transgression against the nursing home community.  The wretched thief exists, but since we do not know who it is we begin to suspect everyone.  I really hate that, because the vast majority of the staff and residents there are kind and good.  Putting her/his co-workers under the cloud of suspicion is a whopper of a sin, way bigger than a mere venial sin, it is a mortal sin for sure.  This sin impacts on many innocent people in many ways.  The injustice almost takes my breath away considering the complex repercussions of one casual, selfish, voluntary act.

I like to assume the wretched thief was a twisted Catholic AND a moron who thought she/he was entitled to a memento of my mother.  Why else would someone take two rosaries?  Because I am a sinner myself, I choose not to forgive the wretched thief.  Not now.  Hopefully someday, but not quite yet.  It is too soon.  Instead,  I hope this sin haunts the wretched thief in the dark, disturbing her/his sleep continuously until the wretched thief returns the rosaries to the social worker.  Then I might forgive her/him.  Okay, we all know that's not gonna happen.  It is an idle fantasy of a grieving child.  It is only in the irrationality of my grief that this fantasy makes me feel better.  I hope for justice and, okay - make me say it: revenge.  But even if the rosaries were returned, what would we do with them?   We will not dig up the casket to put the rosary in her hands if it suddenly appears.  She is holding a different rosary now, anyway.  It is just not the one she wanted. The time has passed to make this right for my mother.  Still, I wish I could let this go.  

I have not been a practicing Catholic since the late 1960's; however, it is all coming back to me now.  My better self would pray for a miracle,  hoping the wretched thief would come to her/his senses, return the rosary, and do penance for her/his sin.  Unfortunately, my better self seems to be missing in action along with the rosaries, diamond ring, other jewelry, knicknacks, pills, candy, and cookies that have disappeared over the years.  For now, I look for justice.  Still, what is justice in this instance?

Hopefully I will eventually realize that if I am still angry about this then I am foolishly allowing the wretched thief to continue to hurt me.  My anger merely keeps the sin alive.  True forgiveness involves freeing oneself from anger and allowing the sin to rest only with the sinner.   Perhaps that is justice?  I don't know.

Sunday, March 8, 2015

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. 

Sunday, March 1, 2015


I am sad to say that my mother is dying. I flew to Northern Indiana early Wednesday morning to be with her and help my siblings care for her in her final days. We have spent the last few days making sure all of Mom’s 16 grandchildren have had a chance to talk to (at, really) her on the phone and give her their love or say their goodbyes from whatever part of the country they happen to be in.  

Mom has been unresponsive for most of the time I have been here. It is best when she is unresponsive, because she is in so much pain when she is semi-conscious. She rarely opens her eyes now. 

It is likely she had a significant stroke overnight between Monday and Tuesday. She has a do-not-resuscitate directive in place.  Interestingly, terminal DNR patients are not taken to the hospital. The nursing home simply tries to make the patient as comfortable as possible until the end.

The first couple of days she was in agony, and she was not tolerating morphine well to combat the pain.  It was awful. My brother called Hospice and a kindly team of nurses and aides came to the nursing home to take over pain management for her. What a truly wonderful organization Hospice is. They care. Of course the nursing home staff care, too. They have been very sweet to all of us. They moved Mom into a private, larger room which can accommodate the many children and grandchildren who are stopping by. We are keeping a constant vigil in her room, day and night.

ERB told me that on Tuesday afternoon a number of family members were in the room with her, including 3 grandchildren. She, of course, is comatose.  However, in the midst of their visit she suddenly tried to sit up and open her eyes. Then she laid back down and said "God, it's beautiful!" I was happy to hear this story, and even more happy that some of her grandchildren were there when it happened. That story will stay with them as long as they live, and it will reassure them that death and dying can be a beautiful part of life.