Palliative care for the living

Today I went to a talk called, Planning End-of-life Care, given by Dr. Ira Byock, the author of Dying Well and The Best Care Possible. Dr. Byock is, among other things, the Director of Palliative Medicine at Dartmouth–Hitchcock Medical Center. He is a very polished, engaging speaker; authoritative, charming, and occasionally amusing. I picked up several one-liners that I hope I’ll remember when next I am in need of a bon mot at a cocktail party, but on the whole, I was disappointed.

My father is not aging well. No one has told us that he is dying; he could well live many more years, but how is one to know? While he has good days and bad days, the bad days are getting so much worse that the good days don’t have to be that good to qualify! He is very weak, his voice is soft, and he spends most of his time sitting with his eyes closed even if he is not actually sleeping. It is difficult not to interpret his condition as the beginning of the end. I was drawn to this talk, billed as “A Palliative Care & Advance Care Planning Public Forum,” seeking enlightenment about what’s down the road, even as we continue plan for his long term care.

I interpreted the phrase “Advance Care Planning” to mean that one could plan for the necessary care in advance. That was a mistake, because aside from hearing platitudes like, “Care involves physical, emotional, social and spiritual aspects,” I didn’t learn anything particularly actionable. I was hoping for answers to questions like, when do you give up and move your father to a nursing home; is it practical to teach home health aides how to use a hoyer lift; where do you get a hoyer lift anyway; and if the patient can’t walk does that necessarily mean they need to be confined to bed?

I did perk up when Dr. Byock said that for palliative care at his hospital, Dartmouth-Hitchcock, “You don’t have to be dying; you have to be mortal.” Hmm. Well, Dad’s mortal. If that’s the criteria, shouldn’t there be some palliative care group that we can call who will come in and show us how to provide him with a better quality of life while he’s alive? I’m sure that all the nurses in the audience who were collecting CEU for attending found the talk worthwhile. I could have stayed in bed.

Taking care of an elder at home can be a labor of love, or an act of desperation, or a little of both. Every day is a new adventure. Two bad days in a row are cause for grave concern. Two good days in a row are proof that we are worrying unnecessarily. Do you need more than that to understand how crazy making it can be? And if all the caretakers end up crazy, who is left to help my dad?

Please believe me when I say I’m not trying to hustle my dad along. But quick, unexpected deaths that result from a heart attack, an accident, or an “Act of God” (to quote insurance companies) have got to be easier than watching a slow decline. As Byock said, “Death is a natural disaster that awaits us all.” We can rail against it all we want, but, “We’re going to die. Let’s get over it!” I’m not ready to get over it yet, but that doesn’t mean I won’t quote him over drinks one night soon.

Open-faced sandwich generation

The “sandwich” generation takes care of their children and their parents at the same time. My only child is pushing eighteen, drives herself pretty much everywhere she has to go, and doesn’t require much in the way of mothering. I can’t really lay claim to taking care of two constituencies at the same time.

To be honest, I’m not even taking care of my parents. I’m helping my mom take care of my dad. Actually, I’m helping my mom take care of the business of taking care of my dad. I arrange for and keep track of caretakers, schedule and attend doctor’s appointments, and roll over CDs when they mature. I’m a jack-of-all-trades and if there’s something I can’t do, I have a husband I can press into service. Today, however, I was stumped.

My father’s driver’s license is about to expire. Now, don’t tell him, but he’s unlikely to need a driver’s license again. Regular readers may remember the post, Keep on keepin’ on, from last summer, at which time we had every intention of letting him get back behind the wheel someday. That, however, is no longer an option, even if by some miracle he recovers enough to drive: I donated his beloved 1988 Chevy Celebrity wagon to Habitat for Humanity for the tax deduction. What’s the problem then, you’re wondering? Who cares if his license expires? Well, for one, he cares. Giving up your license is a rite of passage (or whatever you call the reverse of that) that no one contemplates happily. If you have your license you can hang onto your pride by maintaining that you choose not to drive. I understand completely. It’s probably the same reason I pay extra to renew the motorcycle license I haven’t needed in thirty years.

There’s also a practical use for a driver’s license that is unrelated to driving. A driver’s license is one of the few ways that you can prove you are you. It is the “picture ID” that you take everywhere, perhaps hoping that one day you’ll be carded again when you try to buy a beer, even though you know it’s more likely that you’ll be hit by a truck crossing the street, in which case it’s important that the police are able to identify your body. For those who do not drive, but still wish to purchase alcohol and be able to prove they are who they say they are, there is an official Massachusetts ID. To get an ID, however, you have to present yourself in person to the Registry of Motor Vehicles and prove that you are you.

You also have to go to the Registry in person if you want to renew your driver’s license after the age of seventy-five. Dad has good days and bad days. On a bad day it can be difficult to get him into the car. I searched the Registry’s web site for a loophole that would allow him to turn his license into an ID online, but alas, found none, which means we won’t be heading for the Registry any time soon.

My father can’t be the only elderly gentleman in this situation. People who give up their licenses are clearly not as mobile as they once were. Shouldn’t they be able to use the RMV web site to trade their driver’s license for the more pedestrian form of ID? Given that a license is the gold standard for proving who you are, that’s all they should need, don’t you think? Someone needs to convince the registry to change that rule. Anyone else want to take that on? I’m just too tired. Hey, I may not be as busy as a genuine member of the sandwich generation, but even us open-faced sandwich types run out of energy for tilting at windmills. For now, if someone needs to see a picture ID for my father we’ll hand them an expired license, and if they won’t sell him the beer, I’ll buy it for him.

Holding Silvan, a memoir

Memoirs aren’t easy to sell, unless your last name is Kardashian, or your nickname is Snooki. Even beating cancer (which sounds like a hell of a story to me, because who doesn’t like a tense medical drama with an upbeat ending) probably wouldn’t be a good enough hook to hang your memoir on these days, unless you’re The Nanny herself, Fran Drescher, author of Cancer Schmancer. However, buried in the glut of memoirs by celebrities that are full of TMI and low on substance, there are stories to be found, told by real people like you and me, that will resonate as only a tale of true life can. Holding Silvan, a brief life, by Monica Wesolowska, is one of those stories.

holding silvan cover

As you can tell by the title, this is not a happy book. It is the story of a couple who are told shortly after the birth of their first baby, Silvan, that he was born severely damaged and is unlikely to survive past a year. The outcome of the book is determined early when Monica and her husband decide that Silvan should be allowed to die. The heart of the story is the struggle to defend that decision, while learning how to cherish the time they have with their son.

Ms. Wesolowska’s writing is unsentimental, but the power of the emotions is inescapable. She writes of a hike she takes with her husband while Silvan is still in the hospital. “He is enduring his grief by keeping busy, by consulting outside doctors, dealing with insurance, filling the car with gas while I am left free to feel every ripple of emotion. The postpartum hormones coursing through me amplify my grief, make it come in waves that bowl me over. But I can’t stay like this all day. I can’t sustain this drama. The feeling is passing. The need to be prostrate is gone. There is nothing to do but go on.”

On the surface, Holding Silvan is a book for others who have experienced the loss of an infant. It is comforting to know that you are not alone in the world, that others truly understand your unique pain. But I’m certain that some who share that pain will read this book and rail against the couple for the choice that they made. The public debate over how to manage healthcare for those who cannot speak for themselves has been raging since before Karen Ann Quinlan was removed from life support in 1976. If you are the sort of person who believes in life at any cost, then this book is not for you. If, however, you understand that emotions are not black and white; that we all project our feelings onto others; that quality may trump quantity when it comes to the days of our lives, you should read this book.

The subject of Holding Silvan is an infant, but the message of the book applies to all. Life can be cruel, and tough choices need to be made, but our memories sustain us, and there really is nothing to do but go on.

Bread and milk

The video, Bread and milk, is a modern-day meme that makes fun of people who panic when a storm is predicted. You like to make fun of those people, too, don’t you? Why else would the video be so popular? However, when the weatherman whips those people into a frenzy, and the snow does pile up, those people are the ones sitting snug in their homes with their comfort-food-of-choice while the scoffers stare mournfully at their impassable walkways wishing they had remembered to get gas for the snow blower.

Last weekend, the weather fear-mongers were out in full force warning that Boston could expect eight to ten inches, with the heaviest snowfall between seven and nine at night. We were supposed to go into town to see the Boston Symphony Orchestra preform the soundtrack to West Side Story, live, while the movie played on a big screen above their heads. The outing was a gift from my in-laws, who were to accompany us. Now, when it comes to inclement weather, I can be very low key until a more panicky sort gets me riled up. On the day in question, I was plagued by indecision. We agonized about whether or not to proceed as planned, or hole up at home. We discussed all the possible travel permutations, including how long it might take to slog home from the Alewife MBTA station, three and a half miles away. Then my mother-in-law announced that she was going “come hell or high water” and it was decided; we, too, would brave the storm.

Forgoing classy, Symphony-worthy outfits, we opted for clothing suitable for braving the elements, jeans and clunky, ugly, snow boots. We picked up my in-laws, drove to Alewife, parked in the garage, and caught the red line to Park Street. There we changed to the green line and rode it a few stops to Symphony. When we emerged from the subway, the wind was blowing, but the snow was quite light. We walked a few blocks to a Japanese restaurant and dined on sushi, maki and teriyaki, all the while keeping an eye on the weather. When we walked back to Symphony, right smack in the middle of what should have been the worst of the weather, it was still not doing much of anything.

Judging by how full the hall was, symphony audiences are a hearty breed; you would never have known that a storm was meant to be raging that night. When it was over, we all agreed that West Side Story was looking a tad dated, but that the orchestra more than made up for any shortcomings that the movie might have had. As we prepared to leave Symphony Hall, I was filled with trepidation. We were about to find out if we’d made the right call by coming out, or if we were going to be punished for our foolishness. We stepped outside into—not much of anything—and headed back to the subway.

I was mighty relieved that the dire predictions had come to naught. It would have been a shame, and a great waste of money, if we had bailed out on the evening. I was also angry at having wasted all that emotional energy. For a few days after, I was solidly in the camp of those who make fun of people who panic when snow is due. Then another storm was announced and I headed out for bread and milk.

Good old George

George was a happy guy; some thought unnaturally so. Life had not been kind to him and yet he had a smile for everyone, friend and stranger alike. If you were a friend, he would stop and ask how you were and share a story or a joke. If the situation presented itself, in line at the bank or filling his tank at the gas station, he might do the same with a stranger. People who knew George always walked away remarking how wonderful it was that he was such a happy man, “In spite of it all.”

Ginny was the opposite of George. She led a comfortable life, born into a family that had more money than it knew what to do with. Good fortune notwithstanding, she went through life with a sour expression on her face. She never had a kind word for a cashier or a waitress, nor did she acknowledge anyone on the street, and woe to the person who knocked on her door to ask if she was familiar with their candidate for school committee. It was not unusual for people to mutter, after encountering Ginny, “Bitch.”

Barleyville wasn’t a big town; most folks knew each other, at least in passing. And if they didn’t, they certainly knew the stories. George’s wife had passed away suddenly when they’d been married for less than a year. Everyone agreed that it was a horrible accident. And it had happened so soon after he lost his parents. If the dog hadn’t alerted George he might have succumbed to smoke inhalation, too.

Ginny and George had gone through school together, all the way from first grade to high school graduation. Ginny always said there was something suspicious about George’s wife’s passing. Most everyone thought she was jealous because she’d had a crush on George in high school. Ginny was the only person in town that George didn’t smile or nod at when they passed each other on the street.

There was a pond in Barleyville that froze over in the winter. Saturday mornings the peewee hockey players would be out there as soon as the sun came up. They had to get an early start because the men’s team took the ice at eleven sharp. They had to get their game in before the afternoon shift at the factory. When they left, the figure skaters came out, mostly women practicing figure eights and such, but there were lots of young people, too.

One Saturday in February, when the peewees got there, the police turned them back. It was the damnedest thing. Ginny had fallen into the pond at the one spot where it wasn’t frozen over. Everyone knew to avoid that spot. It was there every year. People were so used to it, the town didn’t even bother to put a sawhorse in front of it anymore. George was the one who found her. He’d tried to pull her out, but was afraid of going in himself, so he’d called 911 from his cellphone. The rescue squad was too late.

No one was particularly sorry to hear what had happened to Ginny. They did, however, feel bad for George, “After all he’d been through.”

One peewee player, Timmy, had been early the morning of Ginny’s accident. He told his dad later that he saw George with his hands in the water.  He wasn’t supposed to use bad words so he didn’t tell his dad that then he heard George say, “Bitch.”

And they danced

This week, more short fiction


Sheila hadn’t known anyone at the wedding. She wasn’t even sure why she’d been invited. The mother of the bride was a distant relative of her father’s. She’d met her once; the bride, never. She nervously smoothed her gray, wrinkle-free skirt over her knees, plucking at the hem so it would reach further down. The knee-hi stockings were a mistake, but pantyhose made her sweat. You couldn’t see her knees when she was standing up, but when she sat down and crossed her legs the elasticized tops of the fake nylons were visible. She crossed her ankles instead. She felt like a child in a painting, posed and uncomfortable.

The wine glass she was holding was empty except for a thin, round slice of lemon. She’d asked for water at the bar and that’s what she’d been served. Why did they put lemon in it? If they thought people wanted flavor, why not serve lemonade? Maybe she should have had a glass of wine instead. She still could, she supposed; perhaps with the meal. It wouldn’t do to get light-headed though. She didn’t often come to town and she was nervous about finding her way home again.

She was sitting at table eleven, the furthest one from the head table, closest to the door to the kitchen. She didn’t mind that; it was also the furthest from the band. There were eight chairs and the two across from her had been claimed, tilted forward to rest on the edge of the table. Sheila assumed that their occupants were dancing or mingling. She hadn’t recognized any of the names on the other cards for table eleven, but she hadn’t expected to.

She was staring at the kitchen door, willing it to open so they could start the meal, which would give her something to do, when a voice to her right said, “Is this seat taken?”

Startled, she looked toward the floor, shaking her head in little movements from side to side, like a horse trying to twitch off a fly. The voice pulled the chair back from the table and sat down. She looked as far right as she could without moving a muscle. She could see most of the body, which appeared to be clad in a navy blue suit, and the black shoes, which needed polishing.

“Are you a friend of the bride’s or the groom’s?” the voice asked.

“Bride,” she mumbled without turning her head.

“I’m sorry. I didn’t understand that.”

“Bride,” she said again, as her cheeks exploded into color.

“Groom, here,” he said. “Actually, distant relative of groom. Never even met him.”

Surprised, she allowed her head to turn toward the voice. “Me, neither.”

“You’ve never met the groom either?”

“The bride. Never met the bride.”

“So why are we here?” he asked with a little laugh. It was a nice laugh, friendly.

Sheila shrugged and shifted in her seat, being careful not to uncross her ankles. She tried desperately to appear casual as she studied his face. It was a pleasant face with round cheeks and a high forehead. He wore rectangular black glasses with thick lenses. She assumed they were stylish; she knew nothing about fashion.

“What say we dance?” he asked, pushing back his chair.

“Oh, no, thank you. I don’t dance.”

“That’s okay, neither do I. We’ll pretend we do. Come on.” He held out his hand, inviting her to stand up and join him.

Sheila uncrossed her ankles and pushed back her own chair. She took his hand and as they walked to the dance floor, the elastic on her left leg gave up and her knee-hi stocking sagged to her ankle. And then they danced.

Abandoned, by people I hardly knew…

The For Sale sign appeared without warning and before many days had passed, the word Sold was nailed on top, the letters much bigger than the ones in the sign below, tacky in their obvious bid for attention. It hadn’t even been a year since those neighbors had moved in and our reaction was swift and strong. How could they possibly leave us?

M came over to deliver the news in person. She didn’t know me well, but somehow she knew I would be devastated. We were very much alike, she and I, if you discounted the twenty-five years between us. She had been offered a dream-job in Pittsburgh, no, she hadn’t been looking, and had convinced her husband to make the move. They would be leaving with their two young children before the month was out.

The age difference tilts the other way with the neighbors across the street. H and J are my parents’ age and have been keeping an eye on us for years, taking care of our cats when we go away and spoiling Hannah. M told me that after her mother met me she said she was relieved that we were next door, presumably because we could act in loco parentis if necessary. I probably am M’s mom’s age, but I didn’t feel maternal so much as connected.

M and J seemed to be younger versions of ourselves.  They were like-minded, sharing our worldview, our politics, our sense of humor, our religion. At least, I like to think they did. We didn’t actually spend much time together. We meant to, really we did, but since they had young children we weren’t sure how to go about socializing with them. I was looking forward to the spring when we’d be able to hear each other in our yards and could call back and forth to initiate a visit. If we’d been better, more proactive, neighbors we’d have more reason to miss them, but that’s cold comfort.

The house is actually on the street that runs perpendicular to ours. We see the right side of it from the back of ours. Before M and J moved in last spring, it was occupied by two elderly sisters. The shades were always drawn, and we rarely saw lights in the windows on the side facing us, so we never bothered to put curtains up in our kitchen. There didn’t seem to be any need for privacy. We reassessed when M and J moved in, knowing that one of the rooms facing us had their infant son in it, and the other was their bedroom. They assured us that they weren’t bothered by our lack of curtains, so our windows stayed naked. Recently, when it was time for their son to go to bed, we made faces at each other from our windows. I could feel the affection.

The Gentle Giant moving truck was here yesterday. The movers loaded up the contents of the house and rumbled away, Pittsburgh bound. Last night the house was empty. It won’t be for long, but that knowledge doesn’t help. I don’t want to get to know new neighbors. I want the ones we had. I’m sure that over time my feeling of abandonment will fade, but I’m going to go buy curtains for the kitchen anyway.