I have taken to waking up at three or four AM in a state of (pick one) sadness, anxiety, unidentifiable angst or worry over the future of the planet. It’s not something I recommend, and hopefully it will not become a permanent habit. But I do note that I wrote about it on May 22, 2016. Had totally forgotten that profound essay, which may say something about its profunditiy. This one, however, is about solutions! The earlier one did in fact have a bunch of potential solutions, because it was inspired, at least in part, by a wonderful New Yorker piece that the inimitable Patricia Marx wrote about the limitless assortments of insomnia aids currently on the market. What follows are the things that get me back to sleep – – – eventually.
Watching the night skies. This has to be #1. Works best for me, thanks to the happy circumstance of having a large window that looks westward over San Francisco 7 floors below. I often get reflections of the city lights onto the clouds (or fog) above; occasionally I get a setting moon. Staring heavenward does not require turning on the lights or getting out of bed – unless the sight is so remarkable I feel the need to capture it with my iPhone camera. The conviction that something more competent than the planet’s current inhabitants is in charge enables me to talk myself down from whatever woe has me in its grip.
If I do the turn-on-the-light-&-make-a cup-of-tea thing, there are the wonders of modern technology for #2. My smart phone spends the night in another room (something I find necessary to my sanity) so accessing it requires a measure of wakefulness (see above.) But then there it is with its handy little Calm app. Or better still, I will pick it up to find my friend Liz has just sent a video of tall trees in a Georgia forest sending their fall leaves off into a symphony of gentleness. If that doesn’t lull me back to sleep, there’s an entirely other solution now that the accursed device has injected itself into my insomnia. Ninety percent of the non-existential things about which I am stewing have simple answers that Safari can provide: Yes, that book I need is available at my Western Addition Library branch! Here are the directions to a repair shop! An email just arrived from the editor I thought didn’t like my story! (What’s he doing up at 4 AM? Not my problem.) Spirits calmed or problems solved, I can then manage to go back to sleep.
And now that the light is on, the book is there. I am pretty careful not to keep Bram Stoker or Franz Kafka on the bedside table, or any of those excellent books about apartheid or the Holocaust, however fine they might be for daytime reading. But I’ll have A.S. Byatt, or Laurie Colwin, or Edith Wharton – any of those lovely friends who can pull you so deeply into a story that they will displace the cause of the insomnia. Of course, you might not want to put the book down, but that’s another problem altogether.
Insomnia is not an easy foe. It may indeed require calling in the troops Marx uncovered – eye masks, stretchy hats, blue lights, Valium, whatever. But before you go to all that trouble and expense I hereby recommend the good book, the internet solution or the celestial assurance that the universe is in good hands – if you’ll just go back to sleep and quit worrying about it.
“I thought I would have a life,” Sharon said to me. “My youngest is now in college, my husband is nearing retirement and we thought we would have a life. Instead, I am juggling time with my father – who’s in an independent living facility but is certainly not independent – and my mother who lives alone in the house she’s had for 40 years. My mother is, how do I put this?, needy. Suddenly she needs help with all sorts of things and I have been designated The Helper.”
It was one of the saddest mini-conversations I’ve had in a very long time. I had known Sharon for less than an hour. She is 54. She was visiting a friend of mine, and this report came when 6 of us were having lunch at the retirement condo where I live. Actually, other than one sixty-something I’ll call Joan, I was the only one in the group older than 54. At 86 I happily accumulate younger friends as often as possible, since the rest of us keep dying off. My lunch guests were talking about what a good spot I am in, especially since my children all live in faraway states. That was when one 40-something said, “I wish my parents would consider moving to a place like this; they don’t want to leave their big, three-story house, and I’m afraid I’m going to be trying to take care of them there by the time I hit my fifties. And that’s when Sharon chimed in with the comment above: “Yeah, I thought I would have a life . . .” And Joan said, with a wry smile, “Welcome to the club.”
I have another friend I’ll call Robert, a business associate with whom I’m not all that close. But because he knew I was writing this piece he told me a similar story. His parents are somewhat younger than this octogenarian writer, but not that much. They had what my friend describes as “a rather loveless marriage” for more than 20 years, but when it ended – with his father leaving to be with an old sweetheart whom “he probably should’ve married in the first place” – that was the last time they spoke. His mother later found a new partner, and both parents, though neither remarried, were contentedly partnered for many years. Not long ago, though, his mother’s partner died, and at about the same time his father’s partner sold their house (which she owned) and moved to another state to be near her daughter. Robert’s father “now rents a room in a home not his own — surviving on Social Security and a small amount of work— surprised he’s still here because he thought he would be dead 10 or more years ago and did not plan to see his 80s.” So much for life plans. “Both are alone and needy now, in different, complementary ways,” Robert says. “If they could somehow bring themselves to talk to one another, perhaps they could begin to chisel away at the layers of resentment, hostility and blame that destroyed their relationship.” Apparently this won’t begin to happen any time soon, however, as Robert tells me they maintain no interest in communicating. His mother lives alone in a home she owns and craves companionship; his father has little money left and needs a roof over his head, a more secure one than the stranger’s home in which he’s been unhappily existing for more than two years now. Robert laments they are in a unique position to help each other, if they were open to it. As their only child, Robert sees this as the sensible alternative to driving him crazy. But he also admits they might not reflect upon or even begin to realize just how their current lives affect him.
Two messages stand out: Needy parents, and children going crazy as designated helpers.
These two examples may not be universal, but they are surely not uncommon. The upside is that many such parents have children at least able to help. (Many parents also have children who are delighted to be caregivers, resulting in a blessing for all. I’m just not sure this is often the case.) But consider the aging elderly who have no (available) children and even fewer resources; be grateful if you’re aged and have one or the other. The downside, at least across the U.S., is a growing inter-generational tragedy. My unscientific micro-sampling, conducted over a period of several weeks, turned up a half-dozen youngish Boomers caring (with varying degrees of joy & satisfaction) for septuagenarian or octogenarian parents, and a handful of Gen-X’ers caring for Boomer parents. Two of the latter have serious financial concerns put this way by one: “So I’m spending my retirement savings on my mom, and – considering my choice not to have children myself – wondering what’s going to happen to me.”
The above, should you want to consider it as such, is an open letter to parents of my generation. Here’s the thing: 100% of us are going to die, which will definitely not be the worst thing that ever happens: just look at all the great people who have already done it. Most of us will need some degree of care by someone, in the months or years leading up to our deaths. Some of us have more choices about our final years than others, but there may be ways to get through our geezerhood without upending our children’s lives – if we talk with them about it.
I can say this with some authority, having inhabited this strange new realm for roughly two months now. And though I concede probably 90% of the widows of the world – more, if you count Syria, Afghanistan, Mozambique, etc – are way worse off than I, still I can feel pretty pitiful about it with very little effort at all. Because:
No matter how independent you might have been for how long – and in six wearying years as a caregiver I have surely gotten used to flying solo – there is a weird stigma thing one now feels, as if an indelible W had been surreptitiously stamped onto one’s forehead. Accented by a gray veil that is technically invisible, but all-enveloping. The status is distinctly different from being single, or divorced, on both of which I can also speak with authority. Singlehood and divorce imply a chosen freedom, an aura of devil-may-care, if you will. Unless one all but takes out an ad proclaiming I don’t want this! I need a partner! (been there done that too, I’m afraid) the solo by choice can have a pretty good time doing exactly as he or she pleases.
Widowhood, on the other hand, is the Great Unchosen. (Well, unless you do in an unloved spouse with an axe or something, and choose to spend your widowhood in the penitentiary.)
It is like being suddenly halved. The other side of the bed is too vast and cold; the placemat on the left too perpetually vacant. The ability to spread out the New York Times without knocking over the adjacent morning coffee does not compensate for the darkness spoken by that empty space. Half of you reads the paper and sips coffee; the other half of you waits in vain for commentary on today’s breaking news or for the request for another piece of toast. The toaster isn’t even half functional any more; it only grudgingly accepts the new reality.
Widowhood is forever opening doors onto sadness. Occasional doors open to rooms full of people who feel sorry for you. They’re only being kind, but still. Many doors open into areas of couplehood where you no longer belong. And who can predict how many zillion times you open the door on coming home, calling out greeting and overflowing with tales that can no longer be told — because who can tell tales into a void?
The world shifts and resettles. Life goes on. Widowhood – even for the young, who lose husbands to stupid wars or senseless tragedies – is likely forever, since we females have an unnerving habit of outliving the males of the species. One adjusts, explores new avenues of finding joy.
“I don’t know where I am,” I said. “I don’t recognize this place.”
“Well, you did get here. Where’s your car? Did you drive?”
“I don’t know how I got here.” And since I also didn’t know where I came from or where I lived, it was not going to be easy to get home.
My short-term memory had totally, inexplicably vanished
I had just told the story of my long-ago (1956, to be precise) back-alley abortion at a fundraising event for nonprofit TEACH (Teaching Early Abortion for Comprehensive Healthcare) in a San Francisco theater. One five-minute speaker followed me, and the program ended. When we got up to leave – I was on the second row next to my young friend Alexa and her visiting aunt and uncle – I didn’t know how to get to the lobby. Since I had met with other speakers onstage before the event and had led my guests to our seats, something was obviously weird. We finally did get to the lobby, where we had met and visited before the event, and the above exchange took place. At that point something weird turned into something frighteningly wrong.
Alexa left her aunt and uncle to find their own way back to their hotel, summoned a cab and gave the driver my address. Later I would have a dim fragment of memory about being in the cab, and another fleeting memory of entering our building, going up to our condo and then seeing my husband.
“Something’s wrong,” I said. “I need to go to the hospital.” He and Alexa had long since come to that conclusion. She had been texting with one of my children on the east coast and on the phone with my husband since the exchange in the theater lobby. Finding my car safely in its garage space, she had already called a cab to get to the emergency room. But after that moment of seeing my husband, the next four or five hours are lost to me forever.
Since I come from a long line of stroke victims, that had been the immediate fear. But it only took a few tests in the Kaiser ER to rule out stroke, a few more to rule out other serious afflictions and arrive at the diagnosis of TGA. Sometime around 2 AM my conscious memory swam back to the surface of reality, which was Alexa sitting on the side of my bed. Then, with a little help from some drug they gave me, I fell asleep.
Fewer than one half of one percent of people in the U.S. experience episodes of TGA every year. It is most common in people between ages 56 and 75, with the average age being approximately 62 – unless I’ve now upped that by a decade or so. For the victim, TGA is really no big deal. You don’t remember anything anyway; but there’s no pain, no suffering, no after-effect and no permanent damage. All I do remember is the comforting vision of my lovely friend, who is known as my West Coast Daughter (now additionally Guardian Angel), sitting on the side of my bed. I was visited by numerous concerned physicians and nurses, several of whom said they’d never heard of TGA.
But now we all have! Before sending me home the next day the very cautious Kaiser people did an MRI of my head, and lo, my brain was still there. Actually, it was functioning on remote even while I was malfunctioning. When posing the traditional questions about what year it was (Nope, didn’t know) etc the ER doctors asked if I could say who is the president of the U.S.
Three things you and I have in common with the rest of the world: We are born, we live, we die.
Dying being so universal, it seems appropriate to talk about it. But the truth is we seldom do that, unless it’s happening to somebody else. An interesting group of people who do talk about it got together recently for a global conference in Lisbon I was lucky enough to attend, The End of Life Experience: Dying, Death and Culture in the 21st Century. It was put on by Progressive Connexions – Interdisciplinary Life, a not-for-profit network registered in the U.K. (Freeland, Oxfordshire) and a successor to the organization that ran earlier conferences I attended in Prague and Budapest. Full disclosure: Part of my motivation for the hard work of creating papers for these events is the mesmerizing pull of Prague, Budapest and Lisbon. That mea culpa is now out of the way.
As end-of life conferences go, this was the best. Not because any great, existential questions were answered, but simply because it proved so eloquently that we’re all in this life (and death) together. We struggle with the same questions about pain, loss and grief; we face the same dilemmas about aging, illness and dying itself. Whatever corner of the planet, whoever we are.
In my group in Lisbon were a couple of anthropologists, professors of everything from Philosophy to Nursing to English Literature, an actress/storyteller, some doctors & nurses & clinical psychologists, an interfaith chaplain, a textile artist – just lovely people from corners of the planet like Portugal, the U.S., Canada, Malaysia, U.K., Australia. Ordinary people sharing extraordinary insights shared below (and in subsequent posts on this page.) No attention was paid to titles and degrees – a very good thing for me, since an MFA in short fiction wouldn’t exactly be at the top of the list; attention was paid only to the voices, insights and generously shared thoughts. Here’s the first report:
Pain. Nobody gets out of life without pain, and since it’s often a big factor in end-of-life experiences, pain got its share of attention in Lisbon. Conference chair Nate Hinerman (a professor at Golden Gate University in San Francisco) submitted a paper titled “The Death of Hospice” which was in the first conference segment. Because he was committed to keeping to a strict time schedule – and this was a talkative group not easy to settle down – Hinerman skipped the actual presentation of his own paper. But it was appropriate to the broader issues addressed in the first segment, of which I was a part. There are some big questions here.
“I argue that as boundaries blur between palliative care, hospice care, and patient-centered curative care,” Hinerman writes, “ultimately, palliative care ought to the goal.” Palliative care means, essentially, do everything to alleviate pain – for patient and family alike. Focus on quality of life rather than life-extending treatments and technologies. “Patients do not benefit,” Hinerman says, “from boundaries like those, say between disease-centered care and palliative care. Or say between palliative care and complex chronic conditions management. Or again, especially between palliative care and hospice.”
In other words, are these fine points (which are eternally argued by professional groups – as well as insurance companies) focused on you and me – patient and patient-advocate – or somewhere else? Boundaries get blurred. “We still need policy changes to support this (palliative care) work, and payment structures to ensure coverage of palliative care.” Hinerman says.
Which brings us to another common theme: money. In both the formal sessions and in casual conversations throughout the conference, the issue of the almighty dollar was often raised. The problem of how to pay for healthcare needs is not confined to the U.S. But more common, and more complicated, is the also-universal question of distribution of finances. Such as: if we spent less on the last few days of life – emergency room and intensive care unit costs are significant especially in the U.S. – could we put those dollars to better use somewhere else?
My own paper looked at two different models of Continuing Care Retirement Communities in the U.S. One is a church-related not-for-profit community with independent living, assisted living, nursing and dementia units. Newcomers must be mobile and reasonably healthy, and pay a substantial entry fee, but – as my brother-in-law remarked when he and my sister moved into a similar facility in another state, “the advantage is, they can’t throw us out.” The other is a condominium building in which residents own their apartments but buy into the management company, a national for-profit corporation which furnishes meals, assisted living in owners’ apartments, activities, etc. Both have substantial monthly fees; the condominium community’s are higher, but when a resident dies at least the heirs profit from the unit’s sale. CCRCs now number almost 2,000 across the country – and, while fairly well regulated, none of them are cheap. It is a very big business. One of my questions is: should these populations of aging and dying Americans, among the most vulnerable of groups, be caught up in a multi-billion-dollar enterprise? If something comes up that requires a choice between the aging residents and the bottom line, which direction do giant corporations usually go?
After my presentation, which was mostly a group discussion about such choices, a conference speaker from Malaysia approached me to apologize for not having participated. “In my home,” she explained, “if I were to allow my parent to live in one of those places, no matter how nice it might be, it would bring great shame on my family. Our culture mandates that the family take care of its aging members.” Ah, so. In our U.S. culture, that was also true as recently as two or three generations ago; but we have become so scattered, and so technologically and institutionally advanced, that living with family through dying is a rarity today.
All of the above offers more questions than answers. But they are universal questions and worth pondering: When you’re seriously ill and in pain, what kind of care would you choose? Where would you prefer to die, ICU or at home? Where will you spend the retirement years leading until you die? Pondering – and creating written plans – could avoid a lot of grief for you and loved ones alike.
Next week: The Lisbon Conference: Appearances from beyond the grave
in addition to supplying trained providers, and maintaining ongoing public engagement.We need to increase the consumer demand, and at the same time, continue to pursue palliative care with hospital administrators, so that those services can be bolstered.
One of an occasional series on the advancing years
It’s more than a little ominous: 85. I mean, look at all those good people who missed this mark in just the past few months or so: Oliver Sacks, 84 – just barely. Dead Poets Society founder Walter Skold, 57. Peter Mayle, 78. David Cassidy, 67. Stephen Hawking for heaven’s sake, 76. Approaching 85 is its own little why should I still be around anyway? season of guilt.
So perhaps it’s only right that the impending milestone might involve a teeny negative or two. Guilt will do it every time. For me, it’s a nagging suspicion that this party is about to be crashed. On March 15th of my last turn at being 84, for example, I woke up at 5 AM, even before the alarm rang, to catch a flight beginning an overseas adventure. Everything went right. Bags properly packed. Good breakfast. All devices and power cords cross-checked. Problem-free trip to the airport. Zip through security. Thirty minutes before boarding time, when I heard my name being summoned to Gate 11 it was not even a surprise. Probably left my wallet at home, I figured, or someone just called to say the conference had been cancelled. It was so unexpected, this call, that by the time I reached the gate I was fully reconciled to having had too much good fortune for any one day. They wanted to offer me $500 on a future flight if I’d trade my Business Class upgrade. Such is the emotional hazard of approaching 85.
Then there is the limitations business. Pre-80, who worried about acknowledging limits? Certainly not I. At 72 I signed up to run my first marathon, just because I figured everyone should try to run a marathon before hitting 75. A bout with breast cancer intervened to mess up my training, but I got back on track at least enough to finish the half, feeling absolutely confident I could’ve kept right on going. (Although probably not for another 11 or 12 miles.) And then. One day in Paris, having inched past 80 with no further temptations into distance running, the ominous stairs challenge sneaked up on me. I had only recently moved, at the time, out of a 4-story house in which I was constantly zipping from laundry (ground level) to studio (4th floor) with nary a care. Thinking it would be fun to trip up the circular staircase to the top of Notre Dame right before closing time, I got about 30 steps and decided to let the rest of the group go ahead. More slowly, I climbed another 20 or 30 steps before my little heart said, “I don’t think so.” This would’ve been less embarrassing were not the Notre Dame lookout designed as one way Up, straight across, and one way Down the other side. Luckily for me the concessionaires were just closing up shop and let me follow them down the Up staircase, which is why I did not have to spend the night locked inside the cold stone walls of Notre Dame.
Ever since, I have begun to notice limitations on previously-negotiable San Francisco hills. If the heart doesn’t send out alerts, the lungs huff and puff their indignation. This happens a few times to my intense consternation, and I make an appointment with my doctor. I complain a lot. She orders tests that proclaim everything is just fine and dandy. She speaks briefly of the really sick people under her care, mentioning a few of their ages and afflictions. “You’re 84 years old,” she observes; get over it.”
“Almost everything will work again if you unplug it,” my good buddy Annie Lamott famously said, “including you.”
Heeding Lamott’s excellent advice, this writer has recently unplugged from a bunch of things. Huffington Post’s blogger roster. The list of ushers at 10 AM church services. Automatic evites to a bunch of meetings & gatherings I don’t really, really need to attend every month. Happily, this means simultaneously unplugging from a zillion email lists. Email lists for activist groups like MoveOn, Indivisible, Stand Up San Francisco, etc etc etc etc are something to tackle another day.
Unplugging even extended to regular blogging on this esteemed franjohns.net. But it’s still a joy to post when something worth posting comes to mind and time can be found. It’s also a joy to hear from readers who still read. (Most of all the email from someone I’ve never met who asked when I would be posting again on franjohns.net. Thanks, and here you are!)
Unplugging, though, is tricky. Technology still confounds. Much of life in today’s world must remain plugged in and operational: computers, printers, TV remotes, modems, iPhones and assorted other too-smart devices, home security systems, garage doors, you name it. For technologically challenged people like yours truly, having the passcodes for all these plus a lifetime of data stored in a cloud in the ethersphere for safety’s sake is a source of great comfort. One does not ever want to unplug from The Cloud.
Meanwhile there are the wasted hours on phones tapping through menus that, should you get to an end, lead to a recording that says “We’re sorry, but the office is closed. Please call again tomorrow.” And the wasted hours on the computer tapping through Help links that eventually lead to articles you do not have time to read, written by frustrated others who had a similar issue but probably nothing to say about yours.
Every now and then, though, one encounters a simple solution to a simple problem. This occurred recently when my lovely Surface computer blinked confusedly at me and went blank. The horror.
I dearly love my Surface. But I am a certified geezer and technologically inept. I did know I simply needed to shut it totally off & restart it. With my old laptop I did this by unplugging, and removing the battery. But my svelte little Surface has nothing so old school as a clunky, removable battery. I called the Microsoft number with fear and trepidation, figuring I’d be writing off the morning.
Within two minutes I reached an utterly charming young man. “Hold the Start button down,” he advised. “Keep holding it. Now we’ll just talk for a little while. You think 30 seconds isn’t very long, and it’s hard to figure out just how long it is.” Whereupon we had a pleasant exchange of several sentences about the fog in San Francisco. “OK,” he said then, “We’ve actually been talking for just over a minute. If you need to do this another time, just keep an eye on your watch. If you hold the button down for 30 seconds it will shut completely down.” This is valuable information.
And lo, when I pushed the Start button again, all was well, It just wanted to unplug.