The Long Goodbye

Your Mother is always with you.
She’s the whisper of the leaves as you walk down the street.
She’s the smell of certain foods you remember, flowers you pick and
perfume that she wore.
She’s the cool hand on your brow when you’re not feeling well.
She’s your breath in the air on a cold winter’s day.
She is the sound of the rain that lulls you to sleep, the colors of a
rainbow. She is Christmas morning.
Your Mother lives inside your laughter.
She’s crystallized in every teardrop.
A mother shows every emotion ………. happiness, sadness, fear,
jealousy, love, hate, anger, helplessness, excitement, joy,
sorrow… and all the while, hoping and praying you will only know the good
feelings in life. She’s the place you came from, your first home, and she’s
the map you follow with every step you take.
She’s your first love; your first friend, even your first enemy, but
nothing on earth can separate you. Not time, not space…not
even death!

When Ronald Reagan was diagnosed with Alzheimer’s, he penned The Long Goodbye, a letter to the country.  He talked of the burden his wife Nancy would face in the coming years and you felt his love and concern for her.  One can’t really imagine the devastation of this disease until they live through it.  Personally, I didn’t see it as a burden, but rather the last loving gift one can give to their spouse, mother or loved one.  This burden is really borne of love and the loss is immeasurable.

Alzheimer’s disease robs one of their memories, their ability to communicate, their ability to do any of life’s basic functions.  Even worse, it causes one to lose their loved one over and over again across a long period of time.  My mother’s journey with this disease lasted over ten years.  The past six years, she was unable to speak or recognize any of her family.  She no longer smiled at us, attempted to speak, or get a glimmer of recognition in her eyes when we greeted her.  She was comfortable, cared for and well loved.  She was at peace.  Sometimes, I found comfort in the fact that she no longer was aware of what was happening to her, as I knew how much that terrified her.

Alzheimer’s disease causes one to say goodbye to their loved one, long before they actually leave.  To me, that was the worst part.   To have your mother sitting next to you, knowing she isn’t really there, is by far the worst pain I have ever endured.   You desperately seek that one glimmer of recognition when you greet her and long for the day she will smile, or look at you like she used to.  But, sadly that day doesn’t come.  What comes are long days of sitting next to someone who really isn’t there, your heart breaking over and over again.

Right before my mother stopped communicating, I had surgery on my ankle. It was the first form of sickness I went through without her love and support in my life.  I vividly remember crying over that loss.  One weekend, dad brought mom out to my house with him for a visit since I couldn’t go to visit them.  My mother was sitting on the couch in my family room that day.  When I stood up to go into the next room with my crutches, I remember her suddenly standing up and saying, “You need help?”  Lord, that moment meant the world to me.  Even deep in the depths of her new world, she still was trying to help others, to help me.  She was still there for me after all.

These past few years, I visited my mother at her nursing care facility on weekends, despite the two hours of inevitable traffic I faced each time.  There was no recognition of me, or engagement as I sat and talked with my father.  The only one she responded to anymore was my father.  She sat there with us always, but was no longer able to even try to engage in our conversations.  Each time we visited, the immense loss was like a slap across the face and heart.  Each time you walked away, you wondered if it would be the last time you were together.   Sadly, the last time I sat with my mother was early March, a full month prior to her passing. Sadly, I didn’t get to say goodbye to her or be with her when she passed.

When COVID first hit New York City, we heard repeatedly that the most vulnerable population was the elderly.  We heard our governor talk lovingly about his elderly mother and the need to keep her safe.  How fortunate for him that he has the ability to do that.  How fortunate for him, that his own mother was not in the hands of his policies as so many others were, including my mother.  How fortunate for Matilda, that she was exempt from the order his Commissioner of Health put in place, that ultimately caused the death of over 2,000 people identified as the most vulnerable population.

My mother’s death is hard for me to process, despite losing her over and over these past years.  My mother was one of the innocent victims of a policy that makes no sense.  My mother did not die from Alzheimer’s disease, or any other natural cause.  My mother died from COVID19, contracted at her care center.  My mother died when she was infected by a patient brought into that center due to these mandates, as did at least 6 other patients on her floor.  There is nothing I can do to change this outcome for my family.  But, there is something I can do to draw attention to the fatal flaw of this order in effect.  The order put forth by our Commissioner of Health, supported by our governor, is amazingly still in place despite this enormous loss of life.  In fact, Governor Cuomo seems to be doubling down that it remain as written.  His refusal to revise the order, coupled with the shifting of blame infuriates me daily.

I have lost my mother due to negligence on so many levels.  I have been met with callous remarks about how mom, living in a private room in a care center on lock down from the first week of March, likely didn’t get the virus from the patient that arrived the week before she got sick.  All of that to me is deflection.  Yes, she could have been infected from the one aide that worked with her.  Yes, lack of PPE and a plethora of other possibilities exist.  But, that does not change the fact that this order as written is flawed and poses extreme, unnecessary risk to this country’s most fragile population.  It is like throwing a match in a dry forest and blaming the store that sold the match, or the forest itself for being so dry.  The point is your order was the match that sparked this fire.

I am here as a motherless daughter, pleading with our governor to have some common sense.  To truly reflect on this order and change it.  To search his heart and ask himself,  if Matilda was in a care center, would he be able to sleep at night knowing that COVID patients were mandated to be admitted, despite an ability to truly keep the other patients safe.  Please take a moment to send an email requesting this order be reviewed and revised.  Do this in memory of my mother, Else Hess and the over 2,000 others who have perished in nursing care, alone, confused and unnecessarily.

If you would like to help others avoid this fate, please write to Governor Cuomo and the Commissioner of Health in New York at the following addresses:

Oxiris Barbot, NYC Commissioner of Health – Email Commissioner of Health

Howard Zucker, NYS Commissioner of Health – Email Commissioner

Andrew Cuomo, Governor New York State – Governor’s Email

The order came from Dr Andrew Zucker and Governor Cuomo.  If you are in NYC, please also reach out to your local politicians to report this abuse of our elderly population.

For those who have not read the order as written, here it is:

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