Cycles of Living and Dying . . .

Sebastian entered the world eight weeks ahead of schedule, weighing all of two pounds. His lineage is Korean/African American/German, which may offer an insight into how determined, individualistic and utterly beautiful he is. He had emerged from NICU (the neonatal unit at Kaiser) and gotten his fighting weight up to nearly six pounds when he first came to visit my husband Bud.

Bud w Sebastian 1.3.19
Sebastian (unimpressed) meets his honorary grandfather

That was about mid-January. In early February, about the 11th, Bud’s congestive heart failure of many decades took a sudden downward turn, and by Valentine’s Day he was in his last hours of life on this planet. Sebastian came to visit – well, he brought his parents too, but they are not central to this story.

His mom plunked Sebastian onto Bud’s chest, as he lay breathing heavily on his hospital bed, red balloons snagged from the downstairs dining room floating around. The last deliberate movement I can associate with my husband as he died was his left arm making a sort-of patting gesture toward the tiny pajama-clad bundle of new life on his chest.

We should all sign up for this: old life ending as new life begins. Seeing life as a natural continuum might not make much difference as we enter, but it could help us take more control of our exit – simply by confronting the fact that we will indeed exit. I like to think that my husband’s last moments were somehow heartened by the certainty that life does, and will, go on.

Bud was fortunate in other ways. Having reached his 90th year, he had been vocal about his readiness to die and had expressed his wishes clearly in writing. There are many good options now: hospice or palliative care, enforceable documents like DNRs and POLST forms (Do Not Resuscitate, Physicians Order for Life Sustaining Treatment,) etc. POLST formAnd in a growing number of states there is a right to confront mortality by hastening one’s dying. In California where I live there is the End of Life Option Act which gives terminally ill, mentally competent adults the right to ask their physician for life-ending medication. For many, that is a way to meet life’s end with extraordinary peace.

A relatively new organization, End of Life Choices CA, is part of this continuum, this big picture of Birth/Life/Death/Peace. EOLCCA provides information and personal support re  California’s End of Life Option Act and all other legal end of life options. It is among several nonprofits dealing with critical aspects of end-of-life care – and helping us all see more clearly that death, like birth, is a universal experience.

When training, recently, to be an EOLCCA volunteer I met a remarkable fellow volunteer named Lori Goldwyn, who may understand both ends of this continuum as well as anyone around. After earning an M.S. degree in Education and working in women’s health for several years, Lori had a homebirth 30 years ago that led her to become a childbirth educator and labor doula. “I came to believe in the value of supporting the natural process as much as possible,” she says, “for both the mother’s and her baby’s sake. A woman in labor contends not only with the pain of labor,” Lori adds, “but with the intensity of realizing that there’s no way out. She can’t escape, quit or divorce this one. The only way out – as is true with the rest of life – is through.”

Eventually the link between natural birth and natural death became clear. “While being with my mother in an inpatient hospice in 2010,” Lori says, “I was struck by the similarities between the birthing and dying experiences.” That epiphany led to her working in hospice and palliative care, as an End of Life Doula, and now also as a volunteer with EOLCCA. Her website, Comings and Goings, reasserts the validity of this continuum with this subtitle about Doulas: Caregivers to those on the threshold points of our Earthly existence.Moon & clouds

“When we get that terminal prognosis, or as we lie dying,” Lori says, “there’s no escaping this reality, this ultimate inevitability.” She quotes the Italian director Federico Fellini: “All we can do is try to become aware that we are part of this unfathomable mystery. We are a mystery among mysteries.”

As he grows, I think Sebastian will also understand this mystery, this continuum, as well as anyone. Sebastian started off in a softly-lit incubator watched over by his mother, a nurse. Weeks later, his honorary grandfather was leaving the planet. And they were able to trade greetings on their journeys.

 

 

On Parenting Aging Parents

Caregiving1         “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.Caregiving4 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.Caregiving5 “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.Caregiving3 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.

Caregiving6       It might be a conversation worth having.

 

Life, Death and Rebirth 2019

Note paperThe envelope is lying right here on my left, now looking altogether spooky. It is even stamped and addressed; that’s how close I was to getting a note into the mail.

Then the phone rang. The note was to begin, “So, how are things going? How’s Gerry? How are you holding up?” The envelope is addressed to Gerry’s wife Kathy.

Several months ago our old, dear friend Gerry, age 75, was looking after the horses on their beautiful Southern California ranch when his heart failed. They got him to the hospital, but then came the bad news: his heart could not be revived or repaired. His only option would be a transplant. The good news? Because he was strong and otherwise healthy, he was a good candidate for a new heart. The further bad news? In order to be on the transplant list he would need to remain in the hospital, in intensive care, ready.Heart in circle

Kathy and Gerry are what I would call salt-of-the-earth Good People. They are deeply religious, clean-living and hard-working, and committed to living lives of service and gratitude. Within a few days of Gerry’s diagnosis they found themselves in the unenviable position of waiting for someone, somewhere, to die. Some generous someone who had signed agreements for his organs to be donated. (It would presumably be a ‘he,’ as Gerry is a fairly big guy, and would need a heart coming from someone roughly of equal size and weight.) After talking with Kathy early on in this saga I found myself also having queasy thoughts: How hard should I pray for some good person – do bad people sign organ donor forms? – to die in order for Gerry to live? It is an across-the-board existential dilemma.

The longer he remained in intensive care, the further Gerry’s condition deteriorated. This  presented a scary picture but pushed him higher on the recipient list. In other words, the worse he got, the more urgent his need, the higher his spot on the transplant list. Another existentially fraught situation.

They waited.

New life - typewriterOn August 15 (or perhaps the hours before August 15 dawned,) a 34-year-old man died in another state. A man who was on life support in a hospital because at some earlier point he had taken the generous step of signing organ donor forms. One of Gerry’s doctors flew to that hospital, examined the heart, confirmed it to be a very good match for Gerry, and boarded another jet plane back to Southern California. Gerry was already opened up, his original heart beating – with a lot of help from outside sources – outside his body.

He is already back home. Part of the somehow endearing characteristics of these two old friends of ours is that they do not have email or participate in any social media. So it’s taken Kathy time to get around to calling friends with this lovely update.

Somewhere in the southwest a grieving family is saying goodbye to a 34-year-old they had not expected to lose. “Gerry cries every time he thinks of him,” Kathy says. “There are just no words.”Birthday candles

Other than these: “August 15th is his new birthday.”

 

A Reflection – or Two – on Widowhood

solitary_by_chibbitsuki
Solitary by Chibbitsuki

For the record: widowhood is the pits.

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. Doors

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.

But it’s still the pits.

How Not to Die in the E.R.

Doctors and nurses pulling hospital trolley,“I promise,” I said, “that I will not let them admit you; we’ll come back home today.”

My husband, who had lived with congestive heart failure for decades, was so filled with fluids that he was like a walking (sitting; he was wheelchair-bound) waterbed. This was a Monday. I am not medically competent, but I’ve been a hospice, AIDS/HIV and Compassion & Choices volunteer, and I knew enough to know he was sliding toward end-stage CHF.

In the ER I mentioned to assorted intake people that we would not agree to hospitalization. The physician who eventually arrived looked my husband in the eye and outlined the ways she could help him feel better and perhaps live longer (he was 89.) “But it will involve being in the hospital for a few days,” she said; “and I think that is not what you want.”

“That is not what I want,” said my husband, looking her in the eye.

“Fine,” said this saintly, beautiful doctor (name on request; I’ve already sent her a thank-you letter copying everyone I can think of.) “We will do what we can, and send you home today.”Martini

So we went home. It was a long day, and my husband was too weary even to finish his martini (an indication to me that he really didn’t feel well. The nightly martini was important.) He said he didn’t want even a bowl of soup. Bed sounded good, he said, but he was beyond cooperation. I then had to summon the Wellness people in our retirement condo building to help.

“Old person. Unresponsive. Call 911” said the Wellness people, as they helped me get him into bed.

“Do not call 911,” I said.

“We understand,” they said. “We love him too. But we have to call 911.”

The paramedics arrived. Paramedics are invariably the most gorgeous hunks. Two of the six who arrived had been to our apartment months before when my husband landed on the floor – he was 6’4” (at his peak) so it took paramedics to get him from floor to bed. “I remember talking to him about all this art,” one said. “And he was a Marine,” said the other. What’s not to love about paramedics? But. “We must take him to the ER,” they said.

“You may not take him out of this apartment,” said I.

It became an interesting battle.

“We understand,” they said. “We agree with you, ma’am. But we have protocols.”

Finally I said to the guy in charge: “You call your head person at San Francisco General and tell him you have this little old lady standing here with her husband’s DNR, POLST form and DPOA and she says we may not remove him from their apartment.” Actually, I was prepared to go over that person’s head. I have friends at SF General. But to his eternal credit, the in-charge physician  (may he survive and prosper) said, “Fine. Get him in bed and leave him there.”

Fran & Bud 5.28.18
The two of us

One of the paramedics saluted my husband as he left the bedroom.

My husband died three days later, in his own home where he wanted to be, with me scrinched into the hospital bed hugging him into the hereafter.

Had I not argued against the retirement home 911 protocols, and fought against the EMR protocols, he would have died in a cold, bright-lit hospital room with strangers poking and probing him and we the taxpayers spending thousands and thousands of dollars to make his last several days miserable.

What’s wrong with this picture? Only the caption.

The caption 99% of us would want is the one below the snapshot of my husband’s death, at home, with someone we love best hugging us into the hereafter.

Fully 60 percent of the U.S. population get the hospital caption — the one that goes with that blurry photo above — instead . (Another 20 percent get the nursing home caption.) One should not have to have a ferocious on-site advocate to let one die at home in one’s own bed. In addition to the DNR, the POLST and the DPOA there should be a JLMA form: Just Leave Me Alone, for those of us who concede that we’re actually going to die some day and work to keep our end-times as inexpensive and comfortable as possible.Heart

Until such time, I am grateful for the forms we do have, and for the two compassionate physicians who helped my good husband die the death he preferred. May he rest in well-earned peace.

 

John McCain & Death with Dignity

McCain, John-012309-18421- 0004
Official portrait (Wikipedia)

John McCain did it right. Not just carefully constructing the last word in his acrimonious exchange with Mr. Trump, or in the countless ways he demonstrated patriotism, dignity & courage and pointed out how democracy is now being threatened. I disagreed with his political positions more than I agreed with them, but in the last few years I’ve sent him more than one thank-you letter. The thumbs-down elicited my most enthusiastic note. But here’s what else he did right:

John McCain kept control of his dying – which is to say, the last piece of his living. In so doing, he left one more gift to America: some suggestions about how to die.

We spend untold energies, and untold billions of dollars, on the national obsession with avoiding death. In exremis we go to the Emergency Room – where tests and procedures are undergone, suffering is often prolonged and increased, and costs skyrocket.

Kathryn group1
Talking about dignified death with Kathryn Tucker

Here is some food for thought from a recent Arcadia Healthcare study: Just looking at the costs (forget the pain & suffering) of the final months of care according to where that final month took place – for the 42% who died at home, $4,760. Another 40% died in the hospital: $32,379. Dying in a nursing facility came in second from the top at $21,221.

I have no idea where John McCain was when he died, but I’d be willing to bet he was at home. Home is where 99% of us say we want to die – but we don’t work very hard at making that happen. Instead, we put off making plans, writing advance directives, talking to friends and family about what we want, planning our funerals. Seriously now, do you have anything written down about what you’d like for your memorial service? Senator McCain reportedly spent eight months at the end of his life lining up eulogizers, specifying music, contacting speakers, saving his family that often burdensome task.

Kathryn Tucker 9.20.18
Kathryn Tucker

But it’s the business of dying – living as one chooses right up until the time of death – that McCain seemed to do so well. Not many of us pay such attention. He apparently didn’t need to hasten his dying, but we would all do well to know about hastening, whether we choose it or not. Even in states where medical aid in dying is legal, dying patients put off making their own decisions, or find out too late that their physician will not participate. Fortunately for us all, there are people like Kathryn Tucker, Executive Director of the End of Life Liberty Project, fighting to protect and build the movement toward death with dignity. (I was privileged to host an event for the distinguished Ms. Tucker recently, hence the photos.)

So maybe you’re not as strong-willed as John McCain. Maybe you don’t have access to the Navy Band for your memorial service. But you can acknowledge that dying is something we humans do and write down what you want (or don’t want, like painful, expensive last-minute heroic measures) for yourself as you’re doing it. You can TALK to family and friends. You can send a contribution to ELLP. Or Death with Dignity or any on the other organizations working to make death with dignity possible.

 

Death, Dying and a Few Questions

Third & final report on a few highlights of the global conference ‘The End of Life Experience: Dying, Death & Culture in the 21st Century’ in Lisbon, March 2018

Question markWhat are the tough end-of-life questions facing the people of Australia? Pretty much the same as those facing the people of the U.S. Or the U.K., or Canada, or Portugal. A few of those discussed at the recent End of Life Experience interdisciplinary conference in Lisbon would include:

How, exactly, do we define death after all? Iona College Professor Vincent Maher, who holds a variety of degrees and whose career has included broad based legal, health care and non-profit sector experiences, presented a paper on the complex case of Jahi McMath. McMath was declared brain dead following surgery to correct a sleep apnea condition at Children’s Hospital, Oakland CA in 2013. She was 13 years old. Her family refused to accept the declaration of death and insisted she be kept on a ventilator. “Court interventions, news and social media exposure ensued,” Maher explains. “Fingers were pointed. What should have been a difficult but straightforward medical decision became a management, ethical and legal fiasco.” Eventually the family succeeded in having Jahi flown to New Jersey, one of two states (New York being the other) which follow a family’s definition of death. This policy was designed to accommodate Orthodox Jews, some of whom believe that the presence of breath signifies life. Jahi remains on a ventilator and feeding tube, with 24-hour care covered by Medicaid; her family still hopes to bring her back to California – where the coroner issued her death certificate in 2014.Grim reaper

Set aside the ethical, racial (McMath is African American,) financial and other questions, what is death? When the heart stops? When breathing stops? Or when the brain is dead? Medical technology can now keep a body functioning after brain death – organ donation is benefiting from this – but at some point, death takes over.

Can we keep control of our lives as they are ending? Increasingly, no, says Dr. Peter Saul, Senior Specialist, Intensive Care Unit, Calvary Mater Newcastle, NSW, Australia. “Dying in the 21st century in a wealthy country,” Saul says, “is now dominated by elderly people with significant disability, sometimes cognitively impaired, faced with making complex end of life care choices.” And those choices commonly follow “standard (medical) protocols and (are) in line with family wishes regardless of preferences recorded in advance care directives.” Australians, like the majority of people everywhere, would choose to die at home, Saul says; but “the entire structure and funding model of Western medicine greatly favors tertiary and hospital care over that provided in the community.”

Saul suggests that “the medical system at all levels would need to become proactive in creating genuine opportunities for choices to be available. This means asking more, offering more education, taking choice seriously and pushing back against a legal system that favors defensive medicine and over-treatment even in the same breath as pushing ‘patient autonomy.’”

So, is there anything hopeful on the horizon for the end-of-life experience? Definitely. Ottowa, Canada psychologist Morry Appelle and his wife, therapist Christine Appelle presented a paper on a discussion group they started five years ago “in an attempt to address more consciously and formally our own concerns of death.” They were surprised to find eager participants who became faithful, regular attendees, and who agreed to allow videos of some of their meetings to be shared. It is a remarkably effective way to confront mortality.

Planet earthThis writer left Lisbon urging the Appelles to publish a book about their novel idea, but you don’t really have to wait for the book. A group of friends or strangers willing to meet together for an extended period of time and simply talk through everyone’s fears and concerns offers an invaluable way to face, and embrace, life’s end. Such an experience could well lead to the patient autonomy and personal choice currently under threat in wealthier nations around the globe. It would undoubtedly help to have someone like Morry &/or Christine Appelle as facilitator. “Mostly,” they said about their experimental group, “we wished to look more intimately at the mystery of life and death, thereby dispelling some of its associated anxiety and fear. To the extent we could live out this life as fully and consciously as possible, we proposed that lifting the veil on death was a reasonable place to begin.”

The Lisbon conference did a lot of veil-lifting. Also lifted up? Questions worth pondering, wherever on this fragile planet we happen to be sharing our fleeting mortality.