May 30, 2003

• Learning About Death

  
  

  It's an old saying that in life, the only certainty is death.  Many of you who read my blog know that over the past few months my Grandmother has been approaching death.  It's been a difficult time for my family.  Grandma Lillie has never been an easy personality and the stress of these final days and weeks have intensified the extremes. 

  
  

  We just went through the process of caring for my other Grandmother as she approached death.  That was a wrenching four months as she gradually diminished following a massive stroke.  We had long to ponder the ethical and practical implications of modern health care.  Is it a mercy to use all possible life-reserving measures when a patient is in pain? or suffering with massive debilitation?  Should we use maintenance procedures such as feeding tubes and respirators which could keep a body living for years? These questions are much better contemplated before the decision has to be made.  We thought as a family that we had the plan worked out.  We knew the wishes of the women themselves, and we thought we were comfortable with the answers.  Until we had to give them.

  
  

  With Granny the issue was the feeding tube.  She had told us that she didn't want one, that if she ever got in "that shape" we should prevent medical staff from beginning that process.  Then she had her stroke.  The stroke impaired her speech and ability to swallow.  But she was still there.  Granny recognized her family, nodded and shook her head as much as possible to let us know that she still had preferences about her care.  She held on to our hands when she couldn't nod, and gave the slightest squeeze to communicate.  Finally, she was reduced to blinking her eyes.  One blink for yes, two for no.  If we had refused the feeding tube, her death would certainly have occurred months before it did.  But, none of us were willing to deny her sustenance, because she was there in that bed.

  
  

  No such measures are being taken with Grandma Lillie as she has entered the dying process.  We discussed and debated starting the feeding tube.  It seems unfair, as though we must have loved Granny more to fight and keep her with us for so long while we allow Grandma Lillie to pass from this world on the schedule her body sets.  Of course there are differences in their medical condition.  Grandma Lillie is weaker, less able to tolerate medical procedures which might save her for a few more days, or end her life immediately.  (Engaging a feeding tube is a minor surgical procedure, but becomes a major ordeal for a patient on the edge of death.)  Granny was mentally alert with us right up until the very end.  Grandma Lillie has been lapsing more and more frequently into sleep and coma.  But it's very difficult not to feel as though we have somehow cheated her, robbed her in these final days by caring for her differently than we cared for Granny. 

  
  

  Death has a way of accentuating individuality.  The single question at the fore of all our thoughts has been When?  Doctors are notorious for being wrong in their predictions.  We all know of cases where people who were given six months to live are still walking around years later.   Other patients who just had a physical last week and got a clean bill of health, drop dead of a heart attack while out in a fishing boat.  Every single individual person has a death experience that is in someway different from the experience of any other person on the planet. 

  
  

  The people in our culture who understand the death and dying process better than any other group are those involved in Hospice Care.  We learned about Hospice when caring for Granny.  This program exists in some form in every state and community of the country, and is dedicated to pain management, dignity, and gentle nurturing through the inevitable process.  The hospice group supporting my family provides all medication and medical equipment.  They visit the home every day monitoring the health of the patient and those who are providing care.   

  
  

  Just over two weeks ago, Grandma Lillie's condition deteriorated markedly.  She entered what is known in hospice care as the "pre-active phase of dying."  This phase lasts on average about two weeks.  Of course, individual patients are often exceptions to the rule.  Some may stay in the "pre-active" phase for as little as three days, others may take a month or more.  The final stage of life before death is the "active phase" which on average lasts three days.  Grandma Lillie began this phase three days ago.  She's never been average so it's no surprise that she seems to be pushing the statistical envelope because as of this morning, she continues to labor for breath. 

  
  

  The hospice people are there.  As my parents, my aunts, and others gather to care for Grandma Lillie, the hospice workers care for them.  They take a turn sitting with Grandma Lillie so the others can catch a nap, go to the grocery store, or maybe even just walk outside on the deck and breathe air that doesn't have an antiseptic odor. 

  
  

  Keeping vigil may be the most important thing that anyone could ever do for someone.  Doctors tell us that dying people hear up until the very end.  They may not be able to physically respond, but they are more peaceful, less stressed when they have loved voices speaking to them.  But watching a person you love die is the hardest thing I can imagine ever doing.

  
  

  I've talked to my boys about going to my Grandmother's side.  They are young, Michael will be 9 in three weeks, Tucker is 6.  But they were there 18 months ago for Granny's passing.  Tucker said, "Mommy, I know had to take care of Grandma in bed.  I tell her stories, Michael reads her favorite book, and we talk to her.  But Mommy, I don't like it when they start making that sound [and here he demonstrates with a gasping wheeze] right before Grandmas become dead humans."  Well, he knows what he's talking about.

  
  

  Waiting is hard.  Not only am I from a generation that expects life to conclude with all the ends tidily wrapped up within two hours of the start of the film; I'm from a culture and a generation that hasn't dealt much with death.  We haven't had a major war with tens of thousands of dead.  We have seen such breakthroughs in medical science that death has lost much of it's frightening immediacy.  When I do genealogical research, it's always brought home to me that death used to be a familiar visitor to families who lost children to scarlet fever, brothers and sisters to pneumonia, and young parents to diptheria.  I had the impression for a long while that the blended family was a post-modern phenomenon brought about by the rising rate of divorce.  Genealogy teaches me that there have always been a significant number of people in blended families.  The difference is that a hundred years ago, they blended after the death of a spouse.

  
  

  Grandma Lillie has seemed at times to be harsh and unsympathetic in discussing deaths of those she has known.  I wonder if it seemed to her that I didn't take it seriously?  How could I know what it was like to see a baby brother die?  Or to lose a parent before I graduated high school?  How do you live with the certain knowledge that death is always waiting around the corner?  I'll be forty years old next month.  And for my whole life death has been an event two generations removed.   People of my grandparent's generation are gone.  But I still have my parents, aunts and uncles.  Not one cousin from either side of the family is lost, I even have cousins who've survived illnesses like leukemia which were 100% fatal 50 years ago.  Death has not seemed real to me.  I know it's out there.  But I know it in an academic way.  Grandma Lillie has known it in her life and heart.  Now one more time, she's teaching us lessons we still have to learn.

  • 10:13 am
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