There’s no way to sum up the summation of a life, no need to document every bit of a parent’s decay, perhaps no blog worthy of sacred last words. But, largely for my sake, I’ve written up something of July 18th (when I arrived home to Knoxville) to October 26th (when Mom died). Read on if you want to.
Surgery and “Recovery”
I got home from Vienna on Monday, 18 July, after a fantastic week in New Jersey/New York with cousins. That evening Mom and Hannah and I got the awaited call – a surgery date two days hence. This was good – we were getting anxious about Mom not having enough recovery time to feel good for Hannah and Peter’s wedding on 20 August. Surely a month would suffice?
I think they said Mom would be in the hospital a few days, maybe till the weekend. We were told there were risks involved in the surgery, uncertainties in what they would find. But, however pleasant the surgeon’s bedside manner, we were to learn that perhaps surgeons tend to be an optimistic lot – downplaying difficulties and not especially gentle when it comes to follow-up care. After all, they are used to cutting open the body – and the only reason their work is potentially healing is that God made the body to restore itself, re-knitting damaged tissue and mending broken skin.
The night of Mom’s surgery was truly wretched. Although the surgeon told Hannah and me that it was the worst thyroidectomy that he’d ever done, we were still unprepared to see our collected, poised, calm mother bandaged, anxious, and fighting a breathing tube. …Friday, still in ICU (side note: I have a better appreciation now for what people mean when they talk about being in ICU – the constant of machines running and beeping, the staff who seem to be, and maybe are, dealing with more pressing cases down the hall), the surgeon showed up to tell us the dreaded news that the cancer was the rare (1-2% of thyroid cancers) that is the worst. I’m pretty sure that after he left was the only time we all three cried. We were a bit embarrassed that we were caught off guard by the arrival of Mom’s radiologist, who somehow managed to be both pleasant and a tad intimidating (though also with a sense of humor, which surfaced on other occasions). …The saving mercy of the day was our friend Elaine bringing a picnic. We weren’t allowed food in ICU, so Hannah and I and Elaine sat in the hospital courtyard with comfort food and the better comfort of a good friend.
Time passed. Mom didn’t want visitors, seemed anxious, discouraged. We realized in hind-sight that part of this was anesthesia taking time to wear off, but it was terrible to see Mom not “herself.” On the 25th, a stomach tube was deemed necessary – swallowing difficulty not allowing for normal food intake. This was explained as a five-minute procedure – but the surgeon didn’t mention that it would be extremely painful after he’d finished his work – till the abdomen recovered from the shock of being penetrated by a quarter-inch tube. At the last minute, a trach was also considered necessary, the undesirable solution to breathing troubles and tangentially essential for the PEG tube surgery. We were assured that it could be “temporary,” and that talking with a trach in your “real” voice was not impossible. But, without sugar-coated it, I guess that Mom would have said that living with a trach was the closest she ever got to hell.
We went home after 9 days, scrambling to be ready for the transition. Although I’d say that Hannah and I are both pretty competent, observant people, we aren’t nurses, and we were not prepped very well for the demands of home nursing. So, there was a steep learning curve, not to mention maddening phone calls to straighten out medical supply issues. Mom kept a small bell by her bed, so she could “call” us any time. Hannah wrote out a list of all the medications and times to administer them, plus the food, and we followed it with religious zeal.
The weeks up to the wedding were a blur. Hannah tried to juggle wedding planning and helping Mom (and succeeded, I must say). I tried to care for Mom without missing out on the fun (and stress) of wedding prep. Aunt Renie, Mom’s younger sister, arrived to help, at our request, Mom’s wish, and her desire. She threw herself into whatever needed doing.
Other friends and family helped – many with wedding preparations, and so many all autumn long. If I list people, I will surely miss someone obvious. But, how can I tell the story without naming names? There were the nurses: Marilyn came out of the woodwork, a family friend of many years, who devoted untold hours to sitting with Mom and researching with me various alternative treatments. Vicki, another nurse, popped in at the shortest notice, and didn’t weary of offering a calm reply to crisis calls and texts. My first morning alone with Mom, she coached me over the phone the first time I had to suction Mom’s throat (at which point we both panicked – Mom insisting I call Vicki, I insisting I couldn’t do it till I knew she was breathing). Caroline, another nurse, who volunteered mornings her son was at pre-school. Jewel, a doctor, who sat with Mom so I could get out a bit. I’ll remember sharing amazing take-out Indian food before going shopping in the rain one Sunday afternoon.
Other friends came with meals, sent flowers, did house-cleaning, sat with me over cups of coffee, listened to long harangues about my frustrations with medical suppliers, popped in unexpectedly. To borrow the words of the author of Hebrews, I do not have time to tell about Linda and Anita and Paige and Elaine and Phyllis (and many more), who through faith offered encouragement, brought laughter, spoke truth, and generally went above and beyond anything we could have expected.
Relatives came from far away, too. Aunt Susan knows the path from St. Louis to Knoxville well, coming in April for Easter, May for Dad’s funeral, August for Hannah’s wedding, September for the Labor Day weekend, October just to be there and help, and November for Mom’s funeral. Aunt Renie, from Phoenix, must have spent two months, more or less, in Knoxville, this summer and fall. Young at heart, chipper, chatty, practical, prayerful. We spent a lot of good and intense time together. From farther away yet came cousin Laurel (left), all the way from New Zealand, to share her and Mom’s birthday (October 12). This was a very unexpected visit, and an absolutely rare treat to get to know our cousin better, benefit from her readiness for any practical task, bask in oddly summer temperatures for mid-October, see the front porch and then Mom’s room turn into a veritable florist shop of birthday bouquets, and enjoy her calm and cheerful spirit (and guess how much it meant to Mom to have her come).
Never in my memory has there been a warmer, sunnier fall than this year. While farmers no doubt bemoaned drought – and more recently, local communities mourned the devastation of wildfires – I couldn’t help but be glad for every single sunny, warm day. In late October, we were still wearing shorts and pretending like it was early September. The trees hung on to their leaves, which finally turned glorious golds and reds in November.
Mornings seemed to be the time when Mom could finally get some decent rest. After interrupted sleep at night – every four, then three, hours for medicine, plus trips to the bathroom or coughing fits – the quiet of the new day was balm to weary bodies and tired minds. She slept, or dozed, and I drank huge cups of coffee and cream, often stealing away to the front porch (within ear-shot of Mom’s bell). It was the one time of the day that was usually quiet – no phone calls or home health visits.
Small joys have room to bloom in quiet moments. Hanging out a load of laundry, clotheslines strung in front of the sky’s bright backdrop, was a delight. Sitting on the front porch watching an ant – noticing his crazy shadow that exaggerated his tiny features, watching him trudge along with a bit of booty for the anthill, wondering if the little fellow viewed my toes with the same confusion the enigmatic Easter Island statues engender in us 21st century folks. I felt at these moments again like a child – engaged, if momentarily, in quiet contentment, or simple wonder. There was a strange peace in knowing there was nowhere else to be.
It must be a defining element of humanity – however easily some of us are bored, however eager for adventure – that we look for, long for, routine. Routine gives something to measure by, aim for, rest in. Routine doesn’t fit very well with being sick, or with caring for the ill. But, in Mom’s case, a certain amount of routine was absolutely necessary. We did our best to stick to the timetable for medicines and food (at its peak, about 15 different administrations per 24 hours), but it was hardly a satisfying rubric for measuring time or “progress.”
Early on, Mom would still get herself up and dressed and perhaps sat down in the kitchen for tasks she had in mind. Certainly the weeks of daily radiation treatments were their own routine – but an increasingly difficult task to check off the list, and accompanied by expressions of anxiety that were so out of character for Mom. As time progressed, I’d try to coax Mom from bed in the afternoons, perhaps for a bit of time on the front porch, or just a change of scenery in the living room. If she wasn’t up for it, and if I was trying to make inroads on odds and ends on my computer, we’d at least manage to haul equipment (oxygen and humidifying machine) to the living room in time for the nightly news broadcast at 6:30 and for Jeopardy at 7:30. Hardly the most worthy entertainment, but splendidly predictable, and some little window open into the wider world. For some number of days, during commercial breaks, Mom and I would do as many of her swallowing exercises as she could manage. They seemed more like torture than helpful, but it was some part of not giving up and holding on to the slim chance Mom could still manage to pass a swallowing test and be up for sharing a cup of coffee or a bite of real food….
One glorious bit of routine for me was weekly dinners with a small group of friends. They very graciously agreed to regularly meet at my place, meaning I could be on call for Mom and dance between her room and the conversation and dinner going on in the kitchen or dining room. I’m afraid I avoided reminding Mom it was Thursday night dinner with “the girls,” lest she find it necessary to call off what felt like a staple of my sanity. Thursday suppers provided me some outlet for creativity, too. Whether the wisest thing to balance tart baking and keeping tabs on when to crush the next round of medicines, I did enjoy putting some baking ideas into practice.
Another bit of routine was music. Mom asked for piano music – from me, or Aunt Renie, or cousin Laurel – with a repetition that could only be interpreted as enthusiasm or desperation. A few times she wanted classical music, but mostly hymns. I’m afraid I got sick of paging front-to-back, or for a change of pace from back-to-front, of the hymnbook, but she apparently found the music calming, appreciating the well-known texts. For a bedtime song, though, the preferred piece was Debussy’s “Clair de Lune” – I don’t know how many times I played that.
We always had bedtime prayers, too, their own routine of pleas for good sleep and whatever else the day’s mustard seed of faith allowed.
Interruptions, welcome and less so, were more the norm. Home health visits were helpful and valued, but usually they also were tiring for Mom, and for me meant a certain outpouring of verbal energy and sometimes decidedly too much small talk and rehashing of the latest information. Hannah and Aunt Renie and I all had our ups and downs of establishing routine, as I rather less than gracefully adjusted from being primary caregiver to weeks of shared caregiving.
Another aspect of caregiving, which evaded fitting into a neatly ordained routine, was exploration of treatment options. I spent countless hours sifting through websites, making lists, writing emails, talking with doctors and nurses, and checking in with Hannah and with nurse friend Marilyn. It was, if nothing else, a way to expand the lexicon – beyond radiation and chemotherapy as general concepts, there were drug names and their commercial brand names, research doctors’ names as institutions like Mayo and Dana-Farber and the National Cancer Institute (names like Dr. Bible, or the doctor whose first name was, no kidding, “Electron,” or even, at UT, a Dr. Junior Univers). There were clinical trial names and acronyms of genomic mutations. And everywhere, rabbit trails, everywhere decisions.
I don’t think I went into the research with any great hope of finding a cure, but it’s my all-or-nothing personality that meant that, once the task was begun, research had to be systematically conducted and extraneous options be duly eliminated. In the end, both Mom’s oncologist (a wonderful man) and Mom herself determined that none of the “options” were really viable – or worth the increased misery they would likely cause. Along the way, I was amazed by the several doctors – one a specialist known around the world for anaplastic thyroid cancer, and two research doctors at big-name medical institutions, plus specific local physicians – who took time to discuss the situation over phone or email or in person, and who, instead of belittling the non-medical person’s questions, took them seriously.
The biggest and most maddening interruption to any sense of routine was the hospital stays. There were three before I got home in the summer, which I’m sure Hannah could describe as frustrating at very best. After the nine days in the hospital following surgery, Mom was once more in the hospital, for five nights in September. It all started with a low sodium level. I got a call from one of the doctor’s offices that we should go into ER and was told that they might want to admit Mom. Note: NEVER, unless you really are on death’s door, go to the ER on a Friday afternoon.
We arrived about 3:30. Patients and caregivers milled about, sat around. Of course, I can’t know what emergencies there may well have been, arriving by ambulance or helicopter, but no one in the waiting room looked needier than (or perhaps as needy as) Mom; but she sat there for hours, hunkered down in her wheelchair, waiting. Finally around 6 p.m., we were ushered back to a room and bed of sorts, though they just wadded up sheets for a pillow. Eventually an IV was hooked up, and then staff disappeared for long stretches. Around 1 a.m., they said a room wasn’t ready, but we could go to a transition room. As soon as Mom was settled, I wended my way to the hospital cafeteria for a 2 a.m. supper. Back in the room, we tried to sleep. Around 6 a.m. they gave Mom some food finally – but they didn’t ask me if she could take a whole can at once, and suddenly she was sick just as a real room was finally going to be ready. It was an awful nightmare.
All the doctors were good over that stay, and the nurses were probably fine. But, I doubt I won too many brownie points with them – resetting the over-sensitive and ever-beeping IV machine, questioning methodology that didn’t match what worked fine at home, prowling the hall to find a nurse when pain medication was overdue, fending off offers of “breathing treatments” that at times had a way of seeming to be more about the respiratory therapist having something to feel good about than making the patient feel better. Well, that’s a pretty bleak summary, but I was incredibly frustrated, knowing that each day meant overall decline of motivation and energy. (You know, they say that for every day in the hospital, you need at least three days to recover once back home.)
However, even there, there were saving graces – a kind respiratory therapist who thought creatively and tried to minimize shocking treatments; a doctor who went out of his way to correct a mistake; the meal lady who started offering me meals; the discovery of the stairwell, which meant the pleasurable workout of a dozen flights up and down before the reward of a big breakfast coffee; the Starbucks card that got me through breakfast and beyond every day; friends who visited.
My communication with Mom over her last three months was centered around day-to-day affairs and markedly low regarding any sorts of “meaningful” conversations. For one thing, after the surgeries, she couldn’t talk. However, being a clear enunciator, she was easy to understand as she mouthed her words, at least up till the last few weeks. But, most of the time she was just so very tired, or just hanging on till the next pain medication was due. Writing was a good back-up, but less personal somehow, even if delivered in her neat, confident hand – that, too, got muddled at the end.
So, besides mouthing things or writing them down, Mom communicated her patience and endurance and faith with a pretty ready smile, a compliance with the routine of food and medicines, sometimes interest in reading or being read to, requests for hymns on the piano, and pushing herself to get up at times that her bed most certainly was the simpler alternative. She communicated weariness and discomfort with reduced engagement, a lower tolerance for my typically enthusiastic chattiness, with inquiries about timing of pain medication, with requests for prayer.
There was also, perhaps, a subtler communication – a transmission of trust, confidence, or dependence on someone specific. Aunt Renie, Hannah, and I, the family who spent the most time with Mom this fall, caught catches of this. Mom wanted Aunt Renie there to pray, most of all. Hannah had a gift for logistics – piling a dozen pillows just right – and she and I made a good transport team. By default of being the most on-hand, I became the favored “suctioner,” a dubious honor, to say the least.
If you’ll pardon a bit of medical information, what isn’t thoroughly explained to you when you are told you need a trach is that the throat of a trach victim is constantly rejecting a foreign entity (the trach) and constantly producing the only means it knows of mollification (congestion). The strong patient coughs a lot, seemingly endlessly, in semi-successful attempts to dislodge the congestion. But, coughing is tiring work, and sometimes the go-to method of removing and rinsing the detachable portion of the trach doesn’t suffice. At these moments, a little machine, fitted with a slender suctioning tube, is necessary to do the job. (Do be sure to ask the respiratory equipment delivery man to please give you a machine that actually works.) So, when coughing becomes sufficiently ineffective or panicked, the “nurse” tears open a suctioning kit, hurriedly puts on the enclosed sterile gloves, picks up the sterile suction tube and attaches it to the machine (without compromising any must-stay-sterile equipment in the process – or she has to start over), and proceeds to insert the tubing into the patient’s trach, anywhere from a couple of inches to maybe six inches. Done unsuccessfully, it makes the patient feel like she is being gagged and suffocated. Done successful, it does all that and manages to extract phlegm or hardened secretions from the airway. Let’s just say, Mom was a patient patient.
The Home Stretch
In early October, Hannah returned to Knoxville, just six weeks after her and Peter’s wedding. It was pretty obvious, by then, that Mom really couldn’t keep managing to get to doctors’ appointments or attempting to meet progress goals with home health nurses and therapists. And, I was about at the end of my rope in terms of energy, after a month of nights on solo duty. Hospice had already been strongly suggested, but we decided to wait till Hannah got home to make the decision. Really, it seemed like a relief – to accept that we could focus on helping Mom be as comfortable as possible (or as little uncomfortable as possible), even if we kept praying for God’s healing intervention.
Once the hospice service was set up, Mom still enjoyed visits (mentioned above) from Aunt Renie, cousin Laurel, and Aunt Susan. One day a dear Korean couple drove all the way from their home in southern Georgia in order to say “good-bye” to Mom, 17 hours in the car in one day. The last weekend Mom was really coherent, Hannah and I asked a handful of her closest friends just to drop by, if they wanted to. A whole Saturday and Sunday afternoon friends came and went, carrying a wealth of shared experiences and unique perspectives on Mom.
At night, we went to a one-day-on, two-days-“off” shift, sleeping, or trying to, in Mom’s room – lest she slip towards the edge of bed or not be able to ring her bell when she needed help. The frequency of her needing something grew by leaps and bounds. We massaged her feet, and someone stayed in her room pretty much all the time. The last days, it grew very hard to communicate. But, just a couple of days before she died, when she had become largely uncommunicative, she seemed once while we were all gathered in her room to take time to look directly at each of us, as if in some sense to say good-bye. Was there some question in her eye – some person she was still looking for? We wondered if she was wondering where Dad was. We hoped very much to be with her when she died, and that she wouldn’t go in the middle of a respiratory crisis. There was one especially terribly attack, when we thought she was gone, and that the suctioning had been either too much or not enough, but she slowly started breathing again and regained a “normal” oxygen level.
Her last night I happened to be on duty – first on a mattress on the floor, then next to her in bed. She was incorrigibly congested, but no longer seemed troubled by it. I got up what felt like countless times, but she didn’t wake. Morning finally came, and slipped away. In the afternoon she died around 1:30, with Hannah and Aunt Renie and me with her. Our prayer for her going peacefully was answered.
…The following days were filled with a host of practical details. Before family arrived from Massachusetts and New Jersey and New Zealand and Pennsylvania and Arizona and Missouri, however, Hannah and Aunt Renie and I managed to steal away for a wonderfully refreshing hike up to the Chimney’s, the delayed fall colors on glorious display.
Services were about 10 days later. Our pastor at Cedar Springs gave a beautiful homily, based on John 11, and Hannah and I asked some specific family and friends to say a few words. What blew me away was how seriously they took the challenge, and in just a brief couple or three minutes captured something beautiful of what they treasured in Mom’s friendship, something of who she was and is. Hannah read a long selection of Scriptures, and during the service a soloist sang “I Know that My Redeemer Liveth” from the Messiah and also the early American hymn “What Wondrous Love Is This?” Before the service, I played classical prelude music with dear friend Kathleen, a cellist, who flew down from upstate New York.
The next day was the burial service – hymns, and a homily by family friend and long-time pastor John Stone, from Psalms Mom had especially liked. After services both days, church friends showered us with meals, so that all of the out-of-town family could be together and visit.
There doesn’t seem to be a blog post word limit, but here I’ll stop and pick up next time with other thoughts…..