State of Grace
(It’s the 2020 Holiday Season, and the 1stanniversary of my beautiful, spirited mother’s passing is fast approaching. For me, the annus horribilis that is 2020 began last mid December, when my siblings and I received “the call” summoning us to drop everything and jump on the next flight to southwestern Florida. My mother had been rushed yet again to the hospital and was “not doing well.”
Shortly after her death I began to write of the profound and painful experience as her Medical Proxy, of having to make difficult medical and healthcare choices, of being responsible for life and death decisions of my most important family member. At the time I considered it a burden, a painful and beautiful and awesome but crushing responsibility. In hindsight, after so many months into the coronavirus pandemic, I now understand that as well as an enormous responsibility, it was indeed a privilege. An honor. To be able to be present and share my mother’s final days, to see her ecstatically happy and smiling, surrounded by her family at Christmas was such a gift. To help ease her transition as much as we could. To mourn her passing with loved ones at not one but two – in Florida and in New York – heartfelt ceremonies. A profound, important passage that so many families has been robbed of since this f*cking pandemic has infected our world and changed our lives. The stories of the elderly sequestered and shut away in their homes, assisted living and nursing residences, away from everyone and everything – from life itself - for month after month; of sick people dying alone in their bed, except perhaps for health care workers encased in scary but necessary hazmat suits; of families unable to mourn properly, surrounded by the love and support of others–
Tessima brought me into this world; I now see how fortunate I was to have this opportunity to witness, to be present, to be with her, as she left it. A loving circle without end.)
It’s okay, mom. We’re here. We got you. It’s all right. Just relax. Just let it go.
Words seem so weak and stupid at times like these. Anything you say ridiculous, flimsy, insufficient.
“I’m not afraid of death. It’s the dying part I’m not crazy about.” She started talking about dying, about wanting to die, for a while now, since … when did it start? Some time after her breast cancer reemerged for the thirdtime, traveling from one side to the other and back again? (Her first bout was over four decades earlier, at age 39; her second a decade ago, her third, ongoing …) After mysterious “masses” - not cancerous but not necessarily not cancerous - were discovered on her lungs? After her shoulder replacement surgery, followed quickly by another breast surgery, triggered a nasty, painful, debilitating case of shingles that lasted months?
I’ll take the pain, mom. It’s okay. Give it to me. I can handle it. Let me have it, I can take it away for you.
I asked her - we all begged her - not to move. It would be too difficult for her children, all living miles and miles from Naples (Florida, not Italy), to effectively oversee and organize the many doctors and procedures and medications treating her myriad illnesses and conditions. To help care for her daily needs, complicated by her lack of strength and mobility due to painful joints (from arthritis), impaired vision (from macular degeneration), compromised breathing (from those mysterious lung masses) and general unsteadiness (her porcine aortic valve replacement still worked like a charm, but her own mitral heart valve was starting to leak, causing weakness and lightheadedness especially when getting up and standing). To dash down at a moment’s notice in an emergency, which began occurring on a regular basis.
What could I do? I laid my hand on her upper abdomen, wishing I could draw out the pain, lift it out of her body, take it away -
It’s okay, mom. Just let it go. Relax. I’ll take it.
Monday I got the call from the hospital. Mom was in the ER Again. As one of mom's two Medical Proxies, they needed to inform me that she had requested a DNR. Yes, I was aware of her wishes. But I didn’t think much of it. Yes, she had been falling more often since she moved to Florida in May just seven months earlier, her falls frequently ending up in the ER as per protocol at All Season, her new “assisted living” home. Alas, this was just the new normal, nothing to be too concerned about. She started slowing down some time ago from her mother’s “bad feet” and the agonizing joint stiffness in her knees and her one unreplaced hip, going from cane to walker to now mostly immobile. We were researching a motorized wheelchair/scooter so she could more easily zip around All Seasons. Her last few trips to the ER uncovered a touch of pneumonia; her latest trip revealed a case of double pneumonia. Serious? Probably not too, let’s wait and see …
By Tuesday she seemed much better, energetic, laughing, joking, her old self, ready to go home. She’s doing great, said Uncle Petie, no reason to fly down. Then on Wednesday mom became woozy, slurring her words, slipping in and out of consciousness. We waited, relying on locally transplanted relatives for updates on her condition.
On Friday the 13th, on the December Cold Moon, the final full moon of the decade, mom wasn’t better; she hadn’t eaten or spoken coherently in two days. We booked last-minute flights and dashed down from the Northeast; her eldest drove in from Georgia. We arrived to find her groaning and wincing in discomfort. “We" was comprised of my mother’s five children (or combinations thereof: Juliana, Regina, Theresa, John, and Catherine), plus a few other relatives including her not quite daughter-in-law and two granddaughters (Xio, Xiana and Chiara), one of her favorite sisters, her husband and their daughter/one of mom’s favorite nieces (Aunt Chickie, Uncle Petie and Diana), and a small chihuahua (Bijoux), regularly smuggled in by Juliana. A crowded, sometimes boisterous hospital room.
Very distressing, seeing your strong, sassy, beautiful 86 year-old mother unresponsive, twitching, moaning for several days straight. Attending MDs as well as doctors from each specialty - neurology, cardiology, oncology, pulmonology, etc. - were not optimistic; they felt the combination of mom’s illnesses – comorbidities - would make most any treatment risky, painful and ultimately futile. And she expressed in her paperwork and numerous conversations with anyone who would listen her desire to forego invasive medical interventions that might prolong her suffering and compromised quality of life. She said she “had a good life” and was ready to wrap this up. Hospice agencies were hovering on the floor, stopping by the room, available to talk, handing out literature. Earnest and available to help. One hospice nurse, trying to expedite our decision-making process, informed us that she probably wouldn’t last until Christmas -
Then, miraculously, on Sunday, Mom woke up. Like nothing happened. She was luminous, comfortable, lucid, energetic, surprised but thrilled to see her five children all together in her room. The last time her normally bickering, feuding family were in the same place at the same time was probably at our father’s funeral 15 years earlier. Relationships amongst the siblings, always combustible, tenuous and fraught with unresolved childhood grievances and indignations, had grown more even contentious over the years when business and financial matters further fueled those ancient fires.
But now her kids - middle-aged adults - came together around her bedside, leaving their animosities and differences elsewhere. We were pleasant, civil with each other, even marginally friendly. O, Holy Night! A Christmas miracle! The Merriest Christmas in years! Except for her slightly compromised speech which corrected itself after a day or two, mom was dazzled and dazzling, delighted, feeling healthy and happy enough to fully enjoy the moment. Which lasted nearly one wonderful week. We assured her that all will be well, that she need not worry about anything - her healthcare, her lodgings, the persistent problems of managing and dividing her estate - we’ll handle everything, amicably. Like grown-ups. We helped feed her, wash her hair, brush her teeth, change her clothes. We’d have it all figured out as she gained back her strength and was able to leave the hospital. She seemed to be doing so well that two of her kids decided to fly back home to work, to enjoy holiday plans. I was not convinced she was out of the woods, so my sister Juliana and I stayed. John and his family stayed as well, continuing their Florida vacation.
And then, that weekend after Christmas, the pain came.
This pain was a new pain, one we hadn’t seen before. Not the crippling joint pain that had been ruthlessly haunting her, that kept her up at night and mostly immobile during the day, that nothing (we tried everything, including medical marijuana) short of opioids, which MDs now refuse to prescribe, could temper. She described it as a pressure, a tension, like someone squeezing, squeezing her upper abdomen. Or was something happening around her heart? That leaky valve? Or on her lungs? She couldn’t say. She just knew it was beginning to hurt, terribly.
From her initial description, the doctors and nurses assumed this new pain was caused by a GI issue - she'd begun to eat solid food after days in an unconscious state - and gave her medicine to aid digestion. Which seemed to work, mitigating the symptoms. For a moment. Until it didn’t. Until it became obvious that the pain was caused by more than constipation or gas.
She was now waking up disoriented and in distress. “Oh, no! What are you doing here? I told him to leave you alone! He’s only supposed to take me!” When I asked “he” who, she couldn’t say. But we clearly weren’t supposed to be around, and she clearly was distraught by the fact that we were. So I asked if she had seen Johnny, her husband, the love of her life, or Nanny and Grandpa, or Grandma and Grandpa Greco, or Uncle William or Aunt Eva or Peggy or Harriet. (These people are all long gone.) She hadn’t. I offered that she was still here, with us, not yet wherever she was meant to go with “him.” That seemed to ground and calm her. For a time.
When the new pain arrived after a brief pain-free respite, my mother no longer had the strength or will to fight it. She just wanted it to end. Medical options, including the palliative ones which had been mitigating her symptoms since she arrived mid-month, no longer worked. Her blood pressure spiked to frightening heights, then dropped to abysmal lows; every breath began to hurt; her kidneys began to fail. Decisions had to be made. Do we try the limited surgical interventions like dialysis available to someone in her severely compromised state? When she explicitly refused life-extending measures like feeding tubes, respirators? When her attending MD and entire team of specialists recommend against them?
Don’t kid yourself: the job of Medical Proxy is not for the faint at heart. It is an awesome (in the true sense of the word) responsibility. Literally life and death. Do not accept this responsibility unless you agree to make decisions regarding the health and medical care of another human being when he or she can no longer do so for his or her self. Unless you are willing to fully understand and honor his or her wishes regarding medical treatment and end of life issues, regardless of your own beliefs, values, agenda. This is difficult enough. And becomes exponentially more challenging when family and/or friends insert themselves into the mix, imposing their opinion, will, agenda …
Now, multiply that by four siblings, including a brother who decided that it was our duty to “be strong while mom is weak”. Meaning that he believed her condition and pain were clouding her judgment; that rather than fighting for life, her pain made her just want to escape, to just give up. He sited his own experience when a drunk driver in a pick-up truck making an illegal left turn took him out while riding his motorcycle -
The pain was so great, he claimed, that he too just wanted it to end. Exactly like mommy does now. So we need to be strong for her, to get her over this rough patch until she gets her fight back, to take every possible action including invasive ones, until things improve and her will to live returns –
So he found an expensive concierge doctor on line to intervene, to question the hospital’s doctors’ opinions, to offer alternatives that might have been missed or overlooked. He considered the hospital attending staff mediocre, dismissing mom as a “very sick” old lady claiming she’s ready to die. Of course, his doctor found treatments to recommend – short-term dialysis, perhaps aspirating the lung to relieve pressure, more medications. (All of which we had been discussing at length with mom’s hospital doctors; all of which seemed more intrusive than curative, all of which may or may not improve her condition. And then, only for a short while. Because her many illnesses – co-morbidities - would certainly win sooner rather than later. And at a price: more pain, a compromised quality of life while recovering, the possibility of infection and other nasty complications, an undignified death while being punctured and plugged with wires and tubing.
When your brother is grilling the doctors and taking notes, demanding more aggressive actions, insisting they talk to his man in California, making you feel like you’re killing your mother; when your sisters have an array of opinions making your head swim -
When the hospice nurses keep stopping by to see if they can offer any assistance; when your relatives have called in their parish priest to administer extreme unction -
When your mother barely has the strength to ask you to make the pain go away -
Let it go, mom. I’ll take it for you.. We’re here. Please try to relax.
… As Medical Proxy you try to respect your family’s feelings, but first and foremost you respect your mother’s wishes, as you understand them through many discussions first with her, then with her doctors. As much as you don’t want to lose her, you’ve agreed to honor what she - not you or your siblings or her doctors - wants.
So on the evening of Dec. 30thwhen we ran out of practical options, when she could barely breath and could no longer abide the pain in her upper abdomen, we called in hospice. We let go and let God. The hospital staff who had been caring for my mother since mid-month sent up a cart of snacks, fruits, drinks, coffee. Her nurse administered generous doses of morphine and when that wasn’t enough to blunt the pain, a hit of Ativan to take the edge off. And we sat with her, held her hand, mopped her brow, laid at her feet, and waited.
Never have I felt so helpless, so useless, so impotent, so unable to do anything, to make any impact whatsoever. All I could do was place my hand gently on my mother’s heart, and wish her pain away.
Then around midnight, as Dean Martin Radio on Pandora played Deano singing “Volare”, then Sinatra singing “Fly Me to the Moon”, then Bobby Darren singing “Somewhere Beyond the Sea”, with her children surrounding her bed, my mommy took her last breath and drifted away. Tessie was with us as we came into this world; what a privilege to be with her at the moment she left it. As she let go and let God. A beautiful, terrible moment. Glorious, sacred and so, so sad.
It’s okay, mom. We got this. We got you.
And she is free.
Comments