UP TO THE PRECIPICE

Gloria Eleanor Clemente

Gloria was a strong woman.  Except for one serious hospitalization I never remember her ever being sick.  If she was ever sick she certainly never let it stop her.  Hardy stock those Clemente women.  Enviable for their strength, determination and longevity.  Gloria was my mother's next younger sister and would be 89 years old now.  

Sometimes strength can also be translated as stubborn.  Stubborn can masquerade fear.  Fear can hide embarrassment.  Nine years ago Gloria began to have some "female" problems.  After doing her best to hide her discomfort she finally confided in my sister who urged her to see a gynecologist.  After much persuading from the family, Gloria went to the doctor.  

The doctor immediately referred her to a specialist for what turned out to be cancer of the vulva.  The specialist performed quite radical surgery during which Gloria encountered some surgery-related problems.  After a very difficult recovery period she was doing remarkably well.  At her six month check-up the doctor was very pleased.

By the time the one year check-up rolled around Gloria had once again been hiding additional symptoms.  The doctor made the pronouncement that the cancer had returned.  If an original diagnosis of cancer is bad, reoccurrence is much worse.  

By this time early signs of dementia had been surfacing.  Signs easily recognizable to a nephew who had been taking care of his mother with Alzheimer's disease for a dozen or so years at that point.  The dementia combined with the problematic previous surgery ruled out another surgery.  My sister and I were in agreement with the surgeon.  We agreed to a consult regarding radiation therapy.  We also agreed that we would not tell Gloria the extent of her condition because of the dementia. These are very difficult but pragmatic decisions caregivers are faced with.  I decided it was more humane not to keep her completely informed.

The visit to the radio oncologist was devastating.  The doctor examined Gloria and then made an excuse to speak with my sister and me alone.  She said the treatment would be excruciating.  It would require weeks of  burning treatment with frequent hospital stays.  I asked the prognosis and the doctor said she thought Gloria would have four to six months with the treatment.  "With the treatment"!  My sister and I were stunned.  I looked at Patricia who was now in tears and then asked the doctor to please give us the information for Hospice.  There was no way we would put my aunt through torture for such little gain.

The doctor was lovely.  She said she was hoping we would choose Hospice and promptly contacted them for us.  We agreed that we would tell Gloria that her discomfort was part of the healing process, knowing that she would never be able to get thought the months ahead of her if she didn't have hope.  We knew what we were in for.

Within the week the Hospice representative was in my kitchen getting things started.  That was the first night I slept in a while because I knew I wouldn't have to face this tragedy alone in my home.  Now I had Gloria on Hospice and my mother with her advanced dementia.  I had been thrust into running a de facto nursing facility.

Hospice was miraculous.  There were people to take care of Gloria.  Supplies would magically appear at my front door.  There were numbers to call if [when] I was feeling overwhelmed.  Hospice looks after the whole family.

Overwhelmed happened.  Even the strongest of caregivers is mortal.  Between the stress of both patients, the parade of strangers through my home and seeing Gloria in ever-failing health, I ended up with pneumonia.  It wasn't horrible but it was a warning for me to take care of myself.  That is a caution to all caregivers:  TAKE CARE OF YOURSELF!    It's akin to the instructions on an airplane that "in case of loss of cabin pressure ...put the mask on yourself first and then help others".

Ultimately the excruciating pain exacerbated Gloria's dementia. My wish had been to make it through the holiday season which was about three months after the onset of Hospice.  We made it gingerly though Christmas but on New Year's Eve morning I was awakened at 7 to Gloria hollering.  She had gotten dressed and made it downstairs, which was miraculous, and was in full psychotic break.  She was no longer in pain but had been transported, in her mind, back 40 years.  She was calling for my father to take her to work.  My father had been deceased for 30 years at this point.

I called Hospice and ultimately made the decision for Gloria to go to their cancer wing at a local hospital that they served.  There were more ups and downs but I was able to rest knowing that she was being well taken care of.  I knew that I was no longer able to provide the comfort and care that was required to make her final time comfortable.

Seven years ago this week I got the 5 o'clock in the morning call, in the middle of a blizzard, telling me that Gloria had passed away.  The pain and suffering were over.  None of our lives would ever be quite the same again.  

Pushed to my limits I was forced to learn so much from this experience.  An experience that no one wants to  face but so many of us do.  I found strength and compassion that I never knew I had.  I learned more about caregiving and Hospice and bureaucracy  than any post-graduate degree could ever offer.  An education I never wanted.

Never feel that you have to face these challenges alone.  For end of life, Hospice is there to ease the burden and the trauma.  At other, less serious, times there is Visiting Nurse.  Consult your physicians.  Turn to your clergy.  Utilize the help that is out there for you.  It's never going to be easy but at least it becomes more bearable.