July 9, 2019. It’s been two years…….two years today that I made the decision to remove my mom from life support. Then stand by her side, holding her hand, stroking her arm and face and watching her death. Though it is my belief that her spirit departed the day her body betrayed her. The day my world unraveled in one devastating phone call. She was no longer with me. Not that I could sense. However, that affirmation did not make the process any less heart wrenching or painful.
Two years ago the most hellish and unreal 3 days of my life tumbled me around and spit me out battered, with a broken heart and a gaping hole in my soul.
I alone was responsible for my mother’s fate. Would I allow her to exist in a vegetative state, hoping she would heal and emerge? Knowing that she would be permanently altered? Would I follow her wishes and allow her to die with dignity? What if I was wrong? What if I killed her too early or let her linger too long? Despite being counseled and supported by my husband, close friends, my father and my mom’s best friend, coming to a decision was the most difficult thing I have ever had to do. I knew her prognosis was grim from the start. I knew that the persistent period without oxygen grossly impaired and extinguished her brain function. I knew the fact that she wasn’t showing reactivity to painful stimuli or rousing at all wasn’t good. I knew when I sat with her for those days that she had left me. I gave her permission in fact. I whispered in her ear telling her that we would be ok if she chose to leave this earth and her life full of pain and grief, especially since living with the death of my brother. I told her to be selfish for once and do what she wanted to do. To go and join her dad, brother, husband, son and countless friends who transitioned into death. I let her know that we would be ok without her. I gave her the harsh truth. That she had a decision to make. If she wanted to remain here she would have to fight like hell. Her body was rife with a cascade of consequences from the large and multiple pulmonary emboli that had landed her here and was systematically shutting down. Here was ICU with 1:1 care and 24 hour monitoring and more tubes and machines in one room than I had ever seen in my 15+ year medical career.
From the beginning of the ordeal some part of me knew that this would be the end. That there would be no miracle or recovery. That she would never again open her eyes and beam at me or my child with love. I knew I would never again feel her embrace or hear her call me her sunshine or tell me she loved me. That gnawing awareness didn’t prevent me from hoping, wishing or praying but it remained nagging and constant.
I knew that if I allowed her to be attached to the devices that perpetuated her existence I would be doing her a grave disservice and dishonoring her wishes. I scrolled endlessly and obsessively through photos and videos of her living her full and active life. I showed the hospital staff a video of her teaching my daughter how to boogey board just 1 week prior to her elective spine surgery and told them that if she could not return to this lifestyle she wouldn’t want to live. They looked at me sadly, full of pity. Unwilling to admit the impossibility.
I reviewed the totality of procedures she had been through in the past 36 hours and the way that her body was shutting down.
I decided. I decided despite my own anguish. I decided to return to her the act of putting her comfort above my own. As she had done for me my entire life.
I stated my decision to the hospital staff and not one attempted to dissuade me. Hospice facilitated the transition from active life supporting measures to removing it all. They informed me of the potential length of the process and detailed what would occur.
Piece by piece the equipment was quieted and removed. Lastly, the ventilator. I refused to leave her side. I had to be present for her. It would be my last act of love to give her physical being. The last thing I could do for her. Our tiny band of support gathered tightly round her hospital bed. We cried silently. I barely breathed. My eyes never left her face. Her color immediately changed. Her breathing slowed then abated. It was over within minutes.
I have never regretted my decision. But my lack of regret does not negate the burden of my decision. That doesn’t infer that the decision was light or easy.
It remains my burden to honor my mom and allow her the freedom that this life did not provide her. It meant that I had to let the ways I knew her and loved her go and accept that she was no longer with me in a way I was accustomed. That the daily chats, the dinners and holidays, the girls’ shopping days and beach walks all ended. It meant the burden of of grieving while assisting my daughter in her own grief of losing her very special “Gigi”. It meant membership to the club of “Motherless Mothers”. It meant losing and finding myself again.
My decision ultimately kindled my reinvention.
So today, 2 years later, I can say that I have climbed from the deep pit of grief and emerged a new person. I can honor my promise to my mom. We are ok without her. We all have survived. I accept that she sends me messages of her presence, love and support in a different way now. I hope that she is at peace. I miss her every single day. I accept the burden of permanence and I live on because of it.