Chapter 5: Which Camp are you Going to?
by: Steve Eilenberg
Without explicit dialogue, two camps formed. There was the “D” camp with Karen and David as sole members and the “M” camp, with Sarah, Aaron, Susan, Marie and me. I was out-posted at a nearby hotel and practical Susan was staying at 928. David spoke little but still managed to insulted her culinary offerings. Not in the “amusing” way he referred to Mary’s cooking, he instead intended to be hurtful. At 928, Susan was ignored, but when out and about, David would call her cell with insistent “where aaare youuuh!” and “Get baack hererrrh” messages. A charitable view would be he found comfort in family under his roof. The reality was probably a mixture of comfort and jealousy for the attention being shown Mary. Karen, David’s foot soldier, was in a peculiar position. By all appearances pre-surgery, she didn’t seem to particularly like Mary and had squarely blamed her for some of her crippling emotional issues.
As children, Susan, Karen and I shared some common fears and social phobias. This was reinforced by example as my father would mow the lawn, nap or change the car’s oil when we had visitors. Karen was otherwise quite different from us, with attachment and trust issues causing her to squirm away from any show of parental affection and to violently rub off cheek kisses. Understandably, Mary restrained herself with toddler Karen; many years later, Karen accused her of not showing her enough affection. Mary reluctantly agreed, but without the necessary explanation. From then on, Karen thought she had license to treat Mary with some degree of outward disdain.
(Atlantic City boardwalk. From left to right: Sarah, Mary, Susan, Steven and Karen)
In the hospital, Karen was uncharacteristically well organized and publicly showered Mary with attention and care. She acted as a go between the medical staff and some of the family, and spoke incessantly to Mary at bedside. At one point I heard her tell Mary “It’ll be great in the (nursing home). I’ll read to you all day, feed you, and even scratch your nose. You won’t have to move a muscle!”. Mary looked at me with a look I interpreted as “kill me now…KILL ME NOW!”
I am still reconciling Karen and Mary’s relationship, not that there’s a real point, but there doesn’t have to be. As a baseline, Karen considers the death of a friend or relative as a betrayal. She once told me during a 3 a.m. rant “Why get close to relatives when they just die on you!” Karen was referring to our beloved Uncle Dave Welsh who died a few months shy of his 100th birthday. He was robust almost to the last day and, by the way, looked for all the world like Mr. Clean! How much of Karen’s smothering was a show for the room, for David, or perhaps a guilty attempt to undo her decades of rudeness. Maybe it was fear of another relative dying on her.
(Uncle Dave, David Welsh giving a wink)
I can only imagine how the nursing staff viewed us. The husband, shuffling and sullen, standing then sitting bedside an hour or two, several days a week. He would not acknowledge the staff and was generally in their way as they did their best to work around him. Mary would try to cheer him up and when exhausted, insisted that he go home “to rest”. Karen, physically imposing and emotionally labile was probably feared. Susan, with a keen eye, quietly attended Mary’s every wish. Sarah, an RN herself and former hospice nurse, acutely saw procedural, nursing and physician shortfalls. She did her best to call out the most serious or at least the ones that were potentially manageable. I would fly in from San Diego, and armed with an iPad and winter coat, did my best to observe, ask questions, not push too hard or be too toxic. I had to remind myself that I am not their consultant and not their colleague. I tried to be the best son I was capable of being.
The stress and guilt of this progressively hopeless situation was consuming. I sorely wanted a do-over for Mary. A do-over at another hospital, with another medical team or perhaps no operation at all. Just my old red headed mother soon to graduate from rollator to wheel chair without knee replacement. In reality, a wheel chair in a senior retirement living situation was unlikely. There would be no mahjong and bingo for her. David was a needy recluse surrounded by abandoned computer parts, date pits, used Kleenex and post up notes which cryptically held important usernames, passwords, financial accounts and the like. Their ramshackle home on a busy road had such a bad floor plan that even with great effort, it would have been a bitch to sell. Karen, David and Mary were each pathological hoarders and there was a shuttered office occupying much of the first floor. David would not go willingly and there was the unspoken Karen debacle. My crystal ball had my mother rollating around a few rooms and crawling up and down stairs until a broken hip or shoulder sent her away.
Even before her surgery, she and David were starting to have falls, a perilous sign that things were unraveling. Around the time of Hurricane Sandy, my father fell just outside their bathroom. Mary fell, trying to help him up and there they were, like turtles on their backs. People do die this way, in their own soil from dehydration.
My father and I shared a common fantasy that we could take her to a ‘good hospital’ and at the front door, smarter docs would be waiting. They would put their considerable brains together and come up with a plan. In reality, she was sick as hell, a metabolic, malnourished disaster. A bloated, weak 81 year old woman on dialysis. She had no meaningful rehabilitation for her knee and best case, would never walk again unassisted. We would have to wait this out, in this hospital and with these doctors. We all focused on her kidneys as they seemed pivotal. In retrospect, I’m not sure they were.
Tuesday, January 8th, 2013: I receive an iMessage from Susan. She is bedside and includes a picture of Mary on a bedpan. The message said something like “Mary is urinating!” What a strange but wonderful message. In this picture Mary has a broad grin, like a toddler who had successfully pooped by itself. Her spirits lift and I call to congratulate her. She was giddy and chatty. I forward the message to my cousin Peter, in Rochester NY. He is a hospitalist there, Karen and David’s stalwart, extra ear and strong shoulder to lean on, as well as medical soundboard.
(Mary smiling in her hospital bed after urinating a few pitiful drops)
Peter does not ‘do’ e-mail but messages me back from what I imagine an ancient flip phone “She looks gud!” It was a false alarm. This was the last time she ever urinated.
(I don’t have many pictures of cousin Peter, so this will have to do)
There was a brief transfer from the hospital to a second skilled nursing facility. I was hearing about it from San Diego and don’t remember many details. The snippets I do remember include being strapped into a lounge chair where she would eventually slump down, towards the ground. Calls were slowly answered and every other day dialysis meant an ambulance ride to the outpatient center, which made the in hospital center seem cheery by comparison. Family was kept out during the dialysis session. Karen was not allowed to attend or read to her.
Mary bounced back to Hackensack septic again, bleeding and with faltering mental status. Again to a double room with a noisy roommate. She was dispirited but could still rally a bit with good company.
Susan writes of her time at bedside: “…from the beginning she was intent upon telling us how much she loved us. She looked at me with huge eyes and with a directness I hadn’t seen in her before. She wanted us to hold her hand, to massage her feet, to rub her head, and she held us too. Her face became that of the young woman she once was and somehow was still, and, later, as she put on water, of the middle-aged woman she had been too, and she was beautiful almost beyond belief, and all love. Sometimes, as she gained briefly a little strength, she lost some of that clarity, but the less she could speak and more lucid she was. But then too she became scrambled and talked of her legs as “those green things” (they weren’t green) and of her pillows as “papers” and “CT papers” that needed to be taken out from under her and moved. She didn’t always know where she was. But mostly she knew, even if the words were wrong.”
On this third hospitalization, there was still no air bed coming. No adequate wound care or nutritional consultation. Her gut continued cramping and bleeding and when she wasn’t getting blood, was being readied for dialysis. Her catheter was still finicky and a more permanent fistula was scheduled. The surgical fistula involves connecting a forearm artery directly to a vein, causing the vein to enlarge and toughen up. When ‘mature’, large needles would go into the fistula, for taking blood out and back in, after filtration.
It was 6 weeks since her kidneys failed. At this milestone of hopelessness, both Susan and Karen offered up their kidneys to Mary. I felt guilty not offering but knew it was not feasible as she was not a transplant candidate. I also knew that Mary would only take a kidney from her child over her cold dead body.
Days blurred together but one morning was particularly memorable for a comment from David to no one in particular stating that he was dying of metastatic disease. Mary heard this and the entire M camp was quickly informed. The next day, he was confronted by Susan, or possibly Sarah. What did he mean that he was dying? Did he have a premonition, or a bad dream? Was it dementia or delirium? Sorry to say, I even imagined he was trying to steal back attention. He flatly denied that he said any such thing. Still curious, we dropped the subject.
The kidneys were really gone. This is nothing like those ‘coma stories’ you hear about when someone awakens after 20 year sleep, hungry and in need of a shave, haircut and debriefing. At this 6 week landmark, we set up a conference with her internist, Dr. Patel, the nephrologist Dr. Zaldan Suldan, the gastroenterologist Dr. Gull and the gerontologist Dr. Sarkar. My father, Karen and Susan were on site. My cousin Peter and I were conference calling in. Dr. Suldan felt that the kidneys were shot. The gastroenterologist thought with the sketchy condition of her inflamed and bleeding colon, colonoscopy was risky. Dr. Sarkar had no idea why Mary was so weak and Dr. Patel was just making affable comments interposed with comments like “I would have bet the farm that her kidneys would come back”. My father thought that she should have her colon removed as it was the source of pain and bleeding. He stated it was a ‘minor procedure’ “You just unplug it…it’s rotten so it needs to just come out”. It was general consensus that Mary would probably not survive this major operation and if she did, she would be saddled with a colostomy which probably wouldn’t heal given her bloating and malnutrition. She would never have consented to this operation.
David took this opportunity to publicly tear apart the gastroenterologist in front of all saying things like “Did you actually go to medical school?” and… “Do you actually have a diploma you can show me?” My 92 year old father, addled with Parkinson disease and near deaf was now a raging bull. He wanted to eviscerate. This is when I hung up.
David rode home quite triumphant. He asked Susan what she thought of his performance and, to a fault, she told the truth. She told him he was out of line, cruel and inappropriate. She thought it was counterproductive to Mary’s care and selfish. It was now clear to him that she was in the M camp and an enemy under his roof. Hearing this, I suggested she move to a hotel. She told me she didn’t have the money, instead became more scarce than ever and he stopped answering his calls from her iPhone.
I don’t recall if my father called me again to brag or tell me it was my duty to come out until Mary was better. Some details remain hazy; a mixture of truth, bad dreams and imagination.
My last phone conversation with David came soon-after the public rant. He bragged about the incident and told me it was my duty to come out until Mary was well. It was “my duty”. He went on…
David: “Stayven…I feel so guilty. So guilty about this whole thing!”
I pause and think to myself. Oh my god! He feels guilty over haranguing Mary all these years to get the surgery that has killed her. At that moment, I am feeling so sad and sorry for him and say: “Dad, you didn’t know. You couldn’t know it would turn out this way. This was routine surgery…”
David: “What? NO! I feel bad because in my condition I couldn’t be there to fix things. I couldn’t fix her care”. I’m thinking to myself. THIS…THIS? is what you feel guilty over? But say: “Dad, I don’t think this was fixable…the sepsis…I mean…I think her fate was sealed with the sepsis and all”.
coming soon: Chapter 6 “I Ran Over My iPad”