Today is about advocacy. Advocating for my mom was necessary, challenging, and also the most rewarding work I have ever done. In the last two years of her life, it became a full-time job, as my brother often pointed out.
Advocating for the infirm is not for the faint of heart. It requires tenacity, and equal parts charm and pit bull. Luckily for my mom, I am blessed/cursed with these qualities. Over the years, my advocacy role shifted, depending on the circumstances.
At visits to her geriatrician, I was my mom’s memory, gently suggesting to her that her answer to the doctor’s question was not quite right, filling in gaps, and providing accurate information in a way that would not unnerve or offend her. Tact has not generally been my greatest strength. Necessity is the mother of invention, however, and I developed the skills I needed to ensure that my mom would have the easiest path possible on her final journey. My mom’s geriatricians – both in New York City, and in Cambridge MA – were brilliant, compassionate, kind, and creative. We worked collaboratively – I knew, as her doctors did, what my mom wanted me to do –she was clear about her wishes to the end.
Hospitals, on the other hand, provide huge challenges for any patient – especially the elderly, who are often impaired by some form of dementia. So many doctors –especially those recently out of med school, are overly invested in the “fix-it” model of medicine. They do it in good faith, I think, but it’s not always the right thing for the patient. This was particularly true during my mom’s final hospitalization, after her stroke. I had to invoke my mom’s DNR (Do Not Resuscitate) four times in as many hours. Invoking it even once was wrenching. Four times was almost beyond my capacity. Thanks to my sister and brother, who had my back 100% of the time, I managed to breathe my way through that horrible day.
My mom was very clear that she wanted to leave the hospital and go home – to her apartment at The Falls. The doctors were reluctant to let her go. The social worker was reluctant to let her go. I was her advocate. My mom wanted out. It was my job to get her out. I was understanding – “yes, I know it’s Saturday…I’m sure we can do this if we all work together.” I was pushy – “I need you to get the oxygen ordered – we are taking my mom home today.”
I was brutally frank with the resident, after he suggested it wasn’t in my mom’s best interest to leave – that she might… The last word was unspoken, but meant to be a strong message to me: Do you want to kill your mother? I looked this young doctor in the eye, and said, “What? She might die? She’s probably going to die. She wants to be in a place where she’s comfortable. Not in a hospital. Are you going to make her better? Take away her paralysis? She has Alzheimer’s, she has severe aortic stenosis. What’s her long-term prognosis?” He told me my mom should go to a rehab facility. I informed him that seniors often did very poorly in rehab, that their cognitive abilities often worsened considerably. I reiterated that my mom expressly stated that she did not want to go to rehab. She wanted to go home. He grudgingly agreed that he would release her, but it was against medical advice. That was fine with me. She was going home.
We took care of the details, got a hospital bed and oxygen delivered, ordered an ambulance for the mile-long ride back to The Falls, and took her home. My mom thanked me as we rode home in the ambulance. “It’s my job,” I said gently, and kissed her on her forehead. It was the calmest I had seen my mom since she her stroke.
When we arrived at The Falls, my mom’s friends gathered around her, thrilled to see her again, even in her diminished state. Most importantly, I knew my mom was where she wanted and needed to be – whether to continue her fight or let go. At that point, none of us knew what it would be.
More to come tomorrow. Thanks for continuing to read about this last mile in my mom’s journey.