My dear sweet friend,
It’s been way too long! oh goodness! I have so much to tell you. I’ve missed you.
Last week my mother was rushed to the hospital. Her heart rate was 167 and she was experiencing a very irregular heart beat. The doctor thought her Parkinson’s was shutting down her autonomic system, which operates the heart and lung. Her system was no longer able to do its job properly. They hooked her up to tubes, machines and meds, and soon she was breathing well and her heart rate began to return to below 100.
She was under a lot of pain with her heart having trouble delivering oxygenated blood to her extremities – her feet and legs especially. She was put on morphine to relieve the pain. By the second day, I could tell she was beginning to drift away. Her moments of recognition were diminishing and I began asking her questions as she became more and more agitated and anxious and in greater and greater pain. I could tell she didn’t want to be living this way any longer.
Unable to talk, I told her to squeeze my hand for ‘yes’.
“Do you want to go home?” – yes
“Do you want to have your feeding tube put back in?” – no response
“Do you want to go home without a feeding tube?” – yes
And so began my conversation with my father, the man who is afraid of losing her, and believes he can’t live without her.
He finally agreed to comfort care, which is another word for hospice. It’s when the doctors all agree that there’s nothing more they can do to help, and we as a family agree to bring our mom home to live the rest of her life in comfort, away from the tubes and wires of the hospital. Papers were signed, and exchanged. My mom had already signed a DNR (Do Not Resuscitate) years before, and even though my dad refused to honor it, in his moment of distress, we managed to convince him that these were my mom’s wishes.
He kept focussing on getting her home, and away from the hospital, not fully understanding that we were all in acceptance of the possibility of death. (He remains in denial that she will eventually die, and I’ve realized as much as I try to explain to him that humans weren’t created to live forever, he refuses to believe it.)
“I’m not going to let her die without me.”
The doctors unplugged her and rushed her home by ambulance. She arrived safely. My brother and I had transformed his office into a bedroom, with photos of all the family on all the walls, floor to ceiling, and some of her favorite paintings. We had her favorite flowers, red roses and white orchids sitting next to her bed. Over the bed we hung a mobile with all the photos of her grandchildren for her to see. She opened her eyes, and you could see the look of wonder and peace, and joy of feeling the love.
She settled into a deep sleep, and the next day, the hospice nurse took me aside to tell me I needed to call the mortuaries and to begin preparing for the inevitable. My father was crying by her bedside, holding her and squeezing her, begging her not to leave. Her lips were purple, and hands swollen.
The very next day was the miracle. After my sister sat with my dad all night listening to him beg us to put her tube back in, I sat with him and asked that he just try and remember all the stories and memories he’s had with her, and to try and share them with her by her side in a loving way – not focused on his fear, begging her to stay, but focusing on the love they share and have shared.
He held her hand, and stroked her head, and began to tell their story. Before long her eyes opened, and she looked like a little girl listening to her first bedtime story. It was a moment I will always cherish. She was awake, alert and happy.
“Mommy are you hungry?” – yes, she squeezed.
She slowly ate her soup, which I had to deliberately and intentionally spoon in tiny amounts since she lost her ability to swallow without danger last year and resulted in the feeding tube that my father insisted she have. With no feeding tube, and a defective epiglottal flap, food could easily go down into her lungs, and she could aspirate, we were warned. The nurses could not feed her knowing the danger and risks involved, but we as a family knew how much my mom loves her food, and had decided that that was a risk we were willing to take, rather than deny her food.
By the end of this miraculous day of love, hospice had moved this tiny woman who was non responsive, from critical continuous care 24/7, to stable, twice a week visits. We were all witness to the miracle of love, the power of faith, and the courage and will of a tiny woman who wants to enjoy her last days surrounded by family in the quiet of her home.
As she fell asleep for the night, I read her a note that Riki had written to her, thanking her for the lessons she had taught her. She had told Riki (my second daughter) to not be ‘frugal’ – to not be afraid to spend your money on experiences and life. You can save your money for things, but it’s the wealth of the experiences with the people you love that will be with you forever. I could see my mom smile as she drifted off to sleep.