waiting for mom to die

Husband and I were on our way to a lakefront cottage for a week*. We had rented it the year before, and peopled it with family and friends until we were literally bursting at the seams. We took turns cooking, and drank margaritas and copious amounts of wine, and had a fabulous time. But this year it was just the two of us, a conscious decision that we would alternate this week on a yearly basis, one year with as many people as we could squeeze in, the other just the two of us.

Saturday, our first day, was also the first day of a three-day gig for me at a nearby music camp, accompanying for an international brass competition. Husband loitered in the parking lot while I rehearsed, and then we headed the rest of the way at around 5 p.m. We stopped and shopped on the way, filling our cart with food we would both enjoy, and that we would enjoy even more because it wouldn’t be accompanied by the groans of picky children complaining about our choices: arugula, lots of seafood, sharp cheeses, local berries and corn and tomatoes; lots of good wine, loaves of sourdough. We tucked the grocery bags around and between the duffels and pillows and bedding and board games in the back of my Prius.

The first few days of the trip were quite cool and cloudy, but the sky would always clear faithfully right at sunset, so I ended up taking dozens of pictures as the view changed dramatically (well, it seemed so at the time) every few seconds. On the second night, Sunday, the clouds and water seemed to be competing to see which could display the most and most varied shades of purple, and one bird in particular seemed to be posing for his portrait by zipping back and forth in front of my camera and across the gleaming path laid down by the sun across the water.

On Monday morning, very early, the taptaptap of the coming rain woke us, and Husband dashed out to the deck, naked, to rescue chair cushions and towels. Monday night we made a fire in the hanging fireplace, using wood we had bought for $3/bin from a stand alongside the road. While we were loading the wood into the back of the car the neighbor’s mutt had dashed across the road to greet us, sniffing at our ankles and then the car door. I thought he might get in the car and go off with us, but his owner called him back, and he trotted across the road, no one seemingly concerned about the possibility of any oncoming traffic (there wasn’t any). We then drove to the nearest town, buying food at an excellent Mexican restaurant and beer at the Mexican grocery to bring “home” to eat. At the grocery the owner’s two children played in the store window, their black eyes shining as the younger one peeked out from the cardboard cutout he was hiding behind.

Tuesday was to be our first full day at the beach, as the brass competition had kept me traveling back and forth the previous three days. Monday night Husband had asked me about my “ambitions” for Tuesday, so I had listed them: sleep until I woke up, drink lots of coffee with breakfast, read on the beach, take a nap, swim if it were warm enough, a long walk on the beach before dinner, a good meal and a good bottle of wine with dinner, and then losing at Scrabble by the fireplace after sunset (I only win Scrabble in Pisa). I had managed the first two things, and had just settled down in my beach chair with “Ulysses” (I’m trying, but am mostly just puzzled), when Husband appeared at the bottom of the stairs with my phone in his hand and a concerned look on his face. One of my sisters had called the landline at the cottage, and told him to have me check my voicemail.

It was my oldest sister telling me that mom had taken a sudden and dramatic turn for the worse, was in what the medical professionals called a stage of terminal restlessness, and was about to be sedated. The goal was for her to sleep, and, once sedated, it was doubtful that she would ever wake up. If we wanted even the possibility of one more conversation, or at least her awareness of our presence, we needed to come. Now.

The most recent development had been five days earlier, when, out of frustration with continuing digestive problems, mom had informed this same sister that she wasn’t going to eat anymore. We all figured that, once she had taken a day or two off from eating, her digestive system would “calm down” and she would resume eating at least jello and broth and the other few things that hadn’t been aggravating her stomach.

But all of these problems were actually a result of the fact that she had been diagnosed with a glioblastoma over five years ago, a couple of years after having one mastectomy, and a couple of years before having another. (These two cancers, the brain tumor and the breast cancers, were completely unrelated.) In hindsight, the digestive problems were probably a sign of her system shutting down.

She had outlived the prognosis for people with glioblastomas by around four years. She had long exceeded the protocol for chemo, and had discontinued it more than year earlier, merely because it wasn’t known what being on that type of chemo for that long would ultimately do to/for her. When the brain cancer began to show progression again she resumed the regimen that had been previously effective, but was immediately so tired and felt so generally unwell that she decided it wasn’t worth it and discontinued it shortly thereafter.

(It would seem that, with all of this history, this call wouldn’t have been a surprise. But it was. As one of my sisters put it at one point, we had been sprinting a marathon since May, with no view of where or idea of when we would reach the finish line.)

We decided to drive up, about 100 miles from where we were, so we filled up a water bottle and threw a couple of peaches and a can of almonds into a bag, and headed out. It seemed that our drive was destined to be thwarted by “life is a journey” drivers, and people turning left against a lot of traffic. What we calculated would take an hour and forty minutes or so took well over two, and mom was deeply asleep by the time we arrived.

I sat by her side in her hospice room for over three hours as friends came and went, giving quick hugs and kisses on a cheek or forehead, and ducking quickly out blinking away tears and patting us sympathetically on our shoulders. When we would tell mom that someone had arrived she would move one foot, which we took to mean that she heard and understood, although nobody could tell us for sure. When I was alone with her I sat, wishing I was one of those people who just knew what to say, convinced that she could hear us and would want us to talk to her and around her, but not knowing what to say. When I did speak, I would look at her feet. Neither moved.

When we left that night we drove to a nearby newly-opened, highly-acclaimed restaurant, and Husband and I ate a delicious meal — baked sunflower served on a tomato puree and topped with goat cheese and puff pastry, broccoli raab with lemon, caramelized scallops on creamy polenta with eggplant and tomato chutney, grouper on parmesan risotto so creamy and cheesy I’ve sworn off “healthful” risotto for the rest of my life as a waste if not a betrayal to the spirit of risotto itself. We accompanied the meal with a Sonoma Valley Chardonnay and finished with dark chocolate cake over a raspberry reduction. I felt this topped off the surreality of the day, and we toasted my mom and her life while I savored every bite and felt pathologically guilty for doing so (the story of my life; I’m nothing if not conflicted).

The expectation was that, once sedated, my mom would probably continue in this sleeping state for anywhere from a couple of days to a week or more. Our plan was to drive back to our cottage, spend Wednesday there, and return to her hospice room on Thursday.

I sat on the steps leading down to the water that night and listened to the endless ssssswwsssshh of the water against the shore. The moon was markedly absent, so the stars shone in stark relief against the night sky, and a plane at one point flew directly across the Big Dipper.

Wednesday was a beautiful day. We felt like we were stealing it. We slept in, puttered around, walked a good ways along the beach, picked up a plastic bag full of dead balloons and ribbon and plastic water bottles and other detritus on the way back; then I sat in “my” chair and watched the water. I checked my phone every ten minutes. We cooked a delicious meal, and had just settled in to a game of Scrabble when my sister called. Mom’s breathing had changed markedly a couple of hours before, and became slower and slower, until they — two of my sisters and my youngest brother — realized that it had stopped.

Mom had died.

We actually had gone through many weeks in May quite sure it was just around the corner as she recovered from a brain bleed after she fell in her apartment. It had been discovered early in May that she actually had two large blood clots: one in her leg from ankle to thigh, which had caused severe swelling and pain, and one in the airway between her lungs. We had rallied, and set up a schedule to have someone staying with her until she became more steady on her feet as she started a regimen of blood thinners and breathed oxygen from a portable tank. Blood clots, or what is technically referred to as Deep Vein Thrombosis (DVTs), are common side effects of some cancers, as apparently the presence of certain cancers in the body alter the chemistry of the blood and make it more likely to clot. She was moved into hospice after the brain bleed and resulting paralysis on her left side left her unable to get up by herself and required the use of a catheter. Early in August she had regained strength and mobility, was able to walk with a walker, was deemed a hospice “failure,” and moved to an assisted living facility. This move was short-lived, and her return to hospice had just been completed on Monday.

And on Wednesday she died.

We drove back up on Thursday and stocked coolers for visitors and went through dozens of her photo albums to assemble a collage of pictures of her and her friends and family and travels. Back to the cottage Thursday night, up for the visitation and funeral on Saturday and Sunday. The services were evangelical, and disappointing to me as they seemed to focus on the pastor’s vision of what awaited her after her death, (a vision I don’t necessarily share, and certainly without all of his certainty,) rather than a celebration of her life and family. Maybe it’s just me, and my state of mind at the time, and my fate as the sixth of eight children, and my pervasive sense for most of my life that the afterlife mattered more to my mom than I did. I know there were conversations I had wanted to have with her, but chose not to, realizing that they would only try to serve what I needed, probably fail, and probably make things worse between us than they already were. I’m sure this is not only my story, but that of many. I also know there were conversations she had with my sisters about these very things, but she never had them with me.

I know she did her best; we all do. Knowing this, I am still sad that I will always feel that her best left me feeling that something was lacking. I worry that my children will feel the same.

At the burial we released balloons into a gorgeous blue sky, and I remembered all of the balloons we had picked up along the beach.

We drove back to our cottage the day after the funeral, Only Daughter in tow. The owner of the cottage had graciously offered to extend our stay for a few days, as our week had ended up so fragmented and difficult. We drove more than a thousand miles that week, and hadn’t spent more than 36 hours in any one place. We were very grateful.

We spent Monday afternoon, Tuesday, and Wednesday morning at the beach. It was warmer, and lovely, and surreal. Only Daughter practiced her balance beam routine on the deck’s benches; the water warmed enough for us to swim; the sunsets were beautiful.

On Wednesday morning, our last day there, we took one more long walk on the beach. A short way into the walk we encountered a gull, apparently sleeping, but as we neared he turned his head weakly towards us, and then tried to drag himself sideways away from us with a wing. He was clearly severely injured, and we know enough about seagulls to know not to try to get close to help. We walked our “usual” long path, and watched for him upon our return. He was still there, caught in the edges of the tide, waiting to die.

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*This all happened in mid-August. I have just found time, and the frame of mind, to write it now.