A Sad Memorial Day

“Don’t be ashamed to weep; ’tis right to grieve. Tears are only water, and flowers, trees, and fruit cannot grow without water. But there must be sunlight also. A wounded heart will heal in time, and when it does, the memory and love of our lost ones is sealed inside to comfort us.”
― Brian Jacques, Taggerung
The short-term rehabilitation/nursing home unit at the hospital is a sad place.  My mother is not adjusting well to being there and is angry and frightened.  She dislikes the community dining room where she is forced to be with the other patients, many of whom have had debilitating strokes, are suffering from dementia or Alzheimer’s, or have incurable, chronic diseases.  She cannot find compassion for them.  They have nothing to do with her, she claims, as she continues each day to feel sorry for herself in spite of anything I say to her.

In the dining room today there was a pianist playing patriotic songs.  The aides had brought in several women who lay in their recliners unmoving and staring at something no one else could see.  One woman sitting near me seemed to be in another place in her mind as she folded and refolded the terry cloth bib she had worn an hour before during lunch.  A man called Danny was wheeled into the room in his chair.  He seemed to be paralyzed from the waist down, but I had not heard him speak at any point during the previous week.  Two other women were lying bent into a seemingly uncomfortable position in their chairs half asleep.  Only a few women appeared to be able to speak or even appreciate the music being played.  My mother sat in absolute silence beside me, showing no response of either appreciation for the music or a desire to escape from the room.  At that moment I felt like I did not know the woman sitting next to me, the mother I loved, the mother I had cared for since the death of my father and my sister, the mother who this morning swore at me for not visiting sooner, for not taking her to see the Memorial Day parade with my granddaughters whom I see now only once or twice a year because I cannot leave my mother alone.  The accusations flew and the pain began.  I had spent most of every day for the last few months with my mother, either at her apartment, at my home, or in the hospital, and it was just not enough for her.

Where she will go next I do not know.  She may go home with 24-hour care that will quickly deplete all her savings.  She may go into a nursing home or dementia unit which will do the same thing.  No matter what, her time with me is limited.  I thought I had experienced all there was of sadness.  I was wrong.  When I bend to kiss her forehead and tell her I will see her tomorrow, I know as soon as I am gone, she will cry and be afraid and I will go home with an emptiness inside that will surely never leave me now.

Night Watch

“Never fear shadows.  They simply mean there’s a light shining somewhere nearby.”  —Ruth E. Renkel

Night Watch

It’s three a.m. in the semi-dark room where my mother and I spend the nights, she on the sofa curled into child-like roundness while I sleep in fragments of time on the chair nearby.  The wall clock ominously ticks the passage of time. This is a night watch I suspect other daughters are assigned to as their elderly parents reach the end of their lives.  I have been on this journey before but not alone.  This is different.  This is the last of my original family.  Sadness intensifies in the silence of the endless nights.

I long for daylight, loving the way the sun lights the tips of the foam flowers in the perennial garden, the rosebushes just starting to show leaves, the bellflowers swaying in the back garden, soft wildflowers just beginning their entrance into the warm days of late spring and early summer.  With daylight comes a sense of hope, of jobs to be done, nursing duties now beginning, activity replacing those silent moments of fear in the night when nothing can be done but the desire to find something that can be done thrives instead.

I long to be in my bed upstairs, listening to the soft snores of my dog and feeling the tiny body of my cat curled up at my feet.  I long for the normalcy that I took for granted just a few months ago.  But still I don’t wish for the night watch to end because that will mean an even greater sadness, an even greater sense of loss, more than my current feeling of having lost the mother I used to know, the energetic, creative woman so many others also love.

I listen for her breathing.  I cringe when she coughs and relax when quiet comes again.  But still there is that slow passage of time in the night.  Hour by hour I check the clock and toss and turn and think and try to conquer the rising panic in my chest, wishing for daylight and the hope that it might bring.

How Doctors Fail Elderly Patients

“Cancer is a word, not a sentence”. –John Diamond

I have spent another two weeks in the hospital with my mother, this time with even more devastating diagnoses–kidney failure and cancer, on top of her multiple TIAs and heart problems.  We thought we only had to deal with the consequences of the strokes, high blood pressure, and minor heart attack.  Now we are facing one of the most important questions both patients and doctors have to deal with today.  That question is how to keep a patient safe and comfortable without using interventions that affect the quality of a person’s life at the end.

Because we have been at two very different hospitals this past month and met doctors from several different fields, I no longer have a very positive image of modern medicine.  We are veterans in our family when it comes to dealing with cancer.  We are well-educated and reasonable.  We are also compassionate.  Many of the doctors we have dealt with in the last month have been clinical and arrogant.

One very young neurologist (who is not my mother’s main neurologist) told her point-blank in a cold tone of voice that she had Alzheimers and we had better get prepared for the coming years.  Her own doctor did not diagnose that.  I would expect that kind of diagnosis to result in prescription medication and further evaluation.  That did not happen.  He delivered his diagnosis and walked away.  I followed him and informed him that I was extremely upset that he would tell my mother that to her face without more testing.  He informed me that his style was to tell it like it is.  Be blunt, in other words, and ignore the fact that the patient in front of him was 89, had a history of strokes and high blood pressure, and was now in worse shape that when she entered the hospital because of his arrogance and lack of compassion.

A similar experience occurred in another hospital last week when my mother was diagnosed with cancer.  Send her home to die, was the suggestion.  Her kidneys would fail, she would go into a coma, and die peacefully.  Not a bad way to go, according to the doctors.  However, my mother was active, strong, with a fighting Irish spirit.  She was devastated when she was told there was nothing they could do.  Surgery had failed and the cancer was shutting down her kidneys and causing the strokes.  One doctor told me he felt guilty because of the suffering that resulted in patients he had tried to save.  He actually said, “One day I will meet my Maker and I will have to justify to him all the things I have done to patients. My brother and others have suffered before they died because I tried to intervene.”  He said we have a problem facing death in this country.  We use too many methods to prolong life.  He had many regrets over that.  I am upset that he interjected his own personal agenda into a decision concerning my mother’s life.  She wants to live.  She wants to do whatever will save her, but she also does not want to suffer the way my sister did.

Then into the picture came my medical oncologist and radiation oncologist, both of whom offered hope.  They would give her radiation treatments, shrink the tumor, and open up the kidneys.  She couldn’t handle chemotherapy, they said, but the new kind of radiation therapy called IMRT offered great hope.  My mother smiled.  She laughed.  The nurses loved her.  She took her walker and walked the hallways.  She ate the terrible hospital food with enthusiasm because she wanted to be healthy.   Hope changed her from an elderly woman lying in bed waiting to die to a happy, elderly woman who added joy to the lives of the nurses and hospital workers.  Even if the treatment didn’t work, even if something else killed her, these days and weeks of extended life without discomfort or pain would be worth it to many people.

All four members of my immediate have dealt with cancer.  My father and sister did not survive.  I did.  Why not my mother?  It makes me more determined than ever to be an advocate for my mother, to protect her from those doctors who just give up on a patient, and I cherish the doctors who offer hope, even though it is cautious hope.  I will take hope in any form to hold on to my mother for just a little while longer.