Tag: Compassion and Choices NCA

California/General interest/Lifestyle/seniors
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Moving in with mom and dad

by Fran Johns

Waiting lines at the bathroom? Overflow in the kitchen cabinets? Welcome to the suddenly multi-generational family home.

Yesterday a friend of mine was alternately laughing and crying (I mean, literally) over the tales of her once comfortable, now overstuffed home. Her daughter and son-in-law, both unemployed for an extended time and overwhelmed by mounting debt and loss of health insurance, recently moved in with the older generation. With them came three grandchildren, ages 3, 8 and 11. It could make a great sitcom pilot. “My husband was so desperate to get into one of our two and a half bathrooms the other day,” she said, “that he suggested getting one of those take-a-number things they have in hospital waiting areas. The kids put labels on their snack bar boxes, but now I can’t even find which shelf the boxes got stuffed into or what they’re hiding behind.”

Welcome to the brave new world of extended-family housing.

The extended family is making something of a comeback, thanks to delayed marriage, immigration and recession-induced job losses and foreclosures that have forced people to double-up under one roof, an analysis of Census Bureau figures has found.

“The Waltons are back,” said Paul Taylor, executive vice president of the Pew Research Center, which conducted the analysis.

Multigenerational families, which accounted for 25 percent of the population in 1940 but only 12 percent by 1980, inched up to 16 percent in 2008, according to the analysis.

For the rapidly growing 65+ segment of the population, there’s good news and bad news in this. Loneliness is often cited as a great fear among the aged. At talks and workshops this writer often does on end-of-life issues (advance directives, end-of-life choices, etc.) the response to any “What do you fear most?” question is never “death,” almost always “pain,” “isolation” or “loneliness.” When younger generations move in, loneliness is unlikely, but other problems may well take its place.

The analysis also found that the proportion of people 65 and older who live alone, which had been rising steeply for nearly a century — from 6 percent in 1900 to 29 percent in 1990 — declined slightly, to 27 percent.

At the same time, the share of older people living in multigenerational families, which plummeted to 17 percent in 1980 from 57 percent in 1900, rose to 20 percent.

While the pre-World War II extended family may have been idealized as a nurturing cocoon, the latest manifestation is too recent and a result of too many factors, positive and negative, to be romanticized.

“It calls to mind one of the famous lines in American poetry, from Robert Frost: ‘Home is the place where, when you have to go there, they have to take you in,’ ” Mr. Taylor said. “I don’t know that I can offer a value judgment of whether it’s good or bad. It reflects our time.”

The decline of extended families coincided with an exodus to the suburbs, where many young adults preferred to raise their children, and the enactment of Social Security and Medicare, which made older adults more financially independent.

A lot of factors combine to create the more than 49 million adults currently living in multi-generational homes, the census figures show. We’re living longer, getting married later, getting divorced more often, losing jobs and losing homes. One ray of good news is that the homes now housing multiple generations tend to be larger than a generation ago. Two and a half bathrooms for three generations still beats the olden days of one bathroom for a family of five. But not many families get along as well as the Waltons did. “We love the kids and the grandchidren,” remarked my stressed-out friend mentioned above, “but my son-in-law’s first paycheck is going to go for the down payment on a new apartment.”

Households With Extended Families Are on the Rise, Census Shows – NYTimes.com.

California/General interest/Health/Lifestyle/Religion/seniors/USA/Women
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More on mortality: living strong, dying well

by Fran Johns

It’s hard to think about the death of my sister Jane (below) without thinking of another death we faced together.

Our father, in his 90th year on the planet and his 20th year of widowhood, started putting the pressure on Jane and me to come to see him one Thanksgiving. As we were in different states and had families and other things needing attention, getting to Virginia required some doing. Our dad had two daughters in between Jane and me, but she was the executor of his estate and I was the one who brought comfort because I closely resemble my mother. We four daughters usually visited at different times in order to stretch out the audiences for his story-telling and generally keep an eye on him. This time he was adamant. He wanted the two of us there together.

In mid-January we got it worked out. Jane and I met in Atlanta, having to spend the night there because the Richmond airport was snowed in. We managed to get on the first plane to land in Richmond the next morning. After picking up a rental car for the drive to Dad’s home in Ashland we took him to lunch at the only place open in town. He was impatient to get back home. Once there he did his traditional monologue about his 12 flawless grandchildren, a reassurance, of sorts, of his posterity. Then he shuffled off to his room for a nap.

And that’s where we found him when he didn’t answer a call to dinner. Keeled over, on his knees at the head of his bed, where he had said his prayers for 90 years. Having  departed this realm in the midst of a conversation with God, all arrangements complete. He and God had long maintained a strong, conversational relationship.

Not all of us can engineer our departures so efficiently — you had to know my father. Or so gently as Jane’s closing days with her family around, singing hymns. But there are millions of such stories (some of which are in the book, Dying Unafraid, that was motivated by the first story above, if you’ll pardon a little blatant self-promotion here; it’s still in print.) The great majority of those stories happen not because the central character had an unshakable faith in some deity or other (although that does tend to help matters) or because he or she had mystical powers or superhuman strength and determination, but because the central character accepted his or her mortality. We’re born, we live, we die. The facing of, and preparation for, its eventual end often makes dying better and always makes life richer.

That’s the lesson of these two stories. Dying unafraid tends to happen to people who live unafraid. And who talk to their families and friends, and complete their advance directives, and make it clear what their choices are. This is equally true for the young and the old, the fit and the infirm.

What are you waiting for?

California/General interest/Health/Medicine/Politics & Causes
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Life, love and palliative care

by Fran Johns

My greatly beloved sister Jane died this morning, a peaceful end to 84 years of a life extraordinarily well lived. For a few days she had been on palliative care.

Palliative care. File that term away for yourself, your parents, your friends and family. It’s the new best thing, even though for centuries it was the old best thing: keep me comfortable and let life come full circle. For centuries we believed that life was a cycle: birth, Stuff, death. Some people’s stuff was better than others, but there was a general agreement that death happened, so it made sense to ease it along when the time came. Usually it didn’t take long. Often, if ease was not to be had, the family doctor invited everyone in briefly to say goodbye, closed the door and administered a shot of morphine.

Then we invented chemotherapy and ventilators and feeding tubes and miracle drugs and adopted the national attitude that one is supposed to live forever. Plus, we invented lawsuits. So dying turned into something horrid and often painful, something one is really not supposed to do. Physician aid-in-dying for the terminally ill became illegal; even talking about it gave Sarah Palin the death panel willies.

My sister Jane was a gifted artist who told me, a few days before she died, that she’d reached the apex of her career because one of her recent paintings was stolen from a show currently on view. (She was also delighted that others were selling well.) She was a remarkable mother, hostess, book-lover, friend, and about the world’s best big sister. The day after our last conversation she had respiratory failure (quit smoking, please, if you haven’t already) and began to die.

Jane was briefly on a ventilator, which I hated as much as she, but one does what needs to be done. Very quickly she moved from that to palliative care. Her husband, four daughters and assorted grandchildren gathered around to sing songs, hold hands, administer foot rubs, report to her remaining two sisters and innumerable friends that all was well.

This is not an argument against miracle drugs or aggressive interventions when appropriate, or even against feeding tubes and ventilators — although if you catch my children approving such things after I conk my head on the curb please remind them of my explicit instructions to the contrary. But it is an argument to confront mortality, complete your advance directives, talk to family and friends about your own wishes no matter how young and immortal you feel yourself to be, support compassionate and humane dying. Advocating for decent health care for the living wouldn’t be a bad way to start.

Palliative care is a valuable new/old thing. So are big sisters like Jane, although they are hard to come by.

California/General interest/Health/seniors/USA
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Needless pain, senseless dying

by Fran Johns

His wife is dying. If she’s lucky, she will be dead before you read this. If he has his way, she will hang on — for what purpose I am not sure, since she is now barely conscious and in terrible pain — but, in his words, she is “not ready to close the curtain.” He cannot bring himself to say the D-word out loud.

Joe — not his real name — called me last night. I am not sure for what purpose the call was either, except he’s quite understandably angry and I was a handy person to be angry with for a while. His wife was a supporter of an organization I serve, as a board member and a one-on-one client volunteer. Compassion and Choices N.CA is a chapter of the national Compassion and Choices nonprofit organization. We advocate for everyone’s right to a humane and compassionate death, which Cathy — not her real name — is not having. We also advocate for changing the laws that ban physician aid in dying, and the right of a terminally ill, mentally competent adult to hasten his or her own dying if living a few more days or weeks becomes unbearable. Cathy’s life is past unbearable by now.

After suffering for several months with back pain, trying chiropractic sessions and over-the-counter medications, Cathy wound up in an emergency room in mid-November, almost accidentally having an MRI that showed the tumors throughout her body. Lung cancer had metastasized to her brain, spine and almost everywhere else. THIS IS A GOOD TIME TO CALL HOSPICE. Joe encouraged Cathy to fight on. She is in terrible pain, and worse than the pain, Joe says, is the difficulty she has breathing, which keeps her from sleeping because she feels like she’s drowning — “but she doesn’t scream out, exactly…” he said. I wonder how heroic she must need to be for him. She is down to 89 pounds.

As gently as possible, I suggested he call one of several excellent local hospice organizations which I’d earlier mentioned to Cathy’s friend who connected us. As a matter of fact, Joe said, he had already called one of them, they’d been over, he was impressed with them. I was almost beginning to breathe myself when he added that he still wanted to talk with the other I had mentioned (Big mistake. Why did I do that?) and had made an appointment with them to come after the weekend. I suggested they would not mind coming on a weekend.

Denial is a perfectly legal way to deal with things, but it should have its limits. If your spouse, partner, child, friend or parent is terminally ill and in unremitting pain, hospice can be the kindest word you have ever spoken. Hospice care IS NOT about “giving up,” or about dying. It is about comfort, pain management, living, peace. It is entirely possible to sign up for hospice care, change your mind and start some newly-discovered intervention later if one should be found. Probably at some point, you will say the D-word out loud. It won’t kill you.

Joe and Cathy are highly educated, financially well off, widely known and admired. He spoke of moving her to their second home nearby where she could enjoy the ocean, and perhaps take time “to say goodbye to her friends when she feels a little better.”

General interest
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Doctors, neckwear & the male brain

by Fran Johns
Bob-baldric
Dr. Liner in his Baldric

This space is happy to offer up-to-the-minute insights, today’s concerning connections between neckties, germs, the male brain and other organs.

First, reporter Rebecca Smith writes in today’s Wall Street Journal that neckties may be helping spread flu germs, and many people inside and outside the health care industry think they should go.

“The list of things to avoid during flu season includes crowded buses, hospitals and handshakes. Consider adding this: your doctor’s necktie.

Neckties are rarely, if ever, cleaned. When a patient is seated on the examining table, doctors’ ties often dangle perilously close to sneeze level. In recent years, a debate has emerged in the medical community over whether they harbor dangerous germs.

Several hospitals have proposed banning them outright. Some veteran doctors suspect the anti-necktie campaign has more to do with younger physicians’ desire to dress casually than it does with modern medicine. At least one tie maker is pushing a compromise solution: neckwear with an antimicrobial coating.

BUT HOW ABOUT JUST SWITCHING TO THE BALDRIC?

My friend Robert Liner MD, a distinguished physician/piano player/tango dancer/fellow board member of Compassion & Choices of N.CA and general Renaissance man, made this switch some time ago. In rather characteristic Liner fashion, he then established a company which produces Baldrics in order that others may enjoy them.

Earlier Baldrics were worn by most respectable Scots so they would have something handy from which to hang their swords. But for the 21st century, as Liner writes on his company web site:

We are re-inventing the Baldric for present day men and women on the go. I originally conceived the idea of the Baldric as a new fashion statement for men. Instead of a constricting necktie, a man could dress up with a Baldric. Instead of carrying a sword, the modern man could employ his Baldric to carry his sword equivalent: a cell phone, I-Phone, Blackberry or other p.d.a.. Additionally, in place of a bulky wallet, he could keep credit cards, folding money and small personal items easily accessible in a secret pocket in his Baldric. The Baldric is a hybrid: it’s a necktie alternative that performs like a sleek, modified, minimalist messenger bag.

Contacted today about the germ issue, Liner reports he had indeed heard of such. “Of course, it’s seemed to me,” he muses further, “that the more significant problem with neckties from the point of view of health and world peace is the possibility that neckties reduce blood supply to the male brain. This may account for a good deal of what looks like irrational behavior on the part of my sub-species. This can especially be a problem during adolescence and at other times (ie. most of the time) when demand is placed upon the male circulatory system to divert blood to an organ that is not the brain but sometimes functions in place of the brain. Under these circumstances, the male blood stream can hardly afford to have any restriction placed upon the “choke point” by a necktie so that what little blood is left available to go north to the “main brain” is impeded, resulting  in chaos on a global scale.”

Considering the problems of H1N1 and other viruses, and the potential for advancing world peace as Dr. Liner suggests might happen with fewer neckties, this space hereby blatantly endorses the Baldric.

California/Lifestyle
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Calling all ghouls & goblins

by Fran Johns

A Halloween exclusive for readers of this page!

You don’t really like to dress up funny? You have to go to a costume party? Or a significant event that calls for acknowledgment? This solution, requiring a minimum of supplies and bother, is offered:

Get three friends to accompany you. One needs a clergy collar. The second needs a black hat, preferably a giant black hat such as cowboys or German carpenters wear. Number three needs a name badge designating support for the fine end-of-life nonprofit Compassion and Choices. And number four needs identification with an insurance agency. You thereupon represent the Obama theme song “Signed, Sealed, Delivered; I’m Yours.” The originating group (my friend Deborah, #1; my husband, #2; myself, #3 and friend Diane, #4) is happy to offer this suggestion as a seasonal public servce.

We are going as a Death Panel.

General interest
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What to do about Mom?

by Fran Johns

My friend Joan is distressed about her mother.   Joan – that’s an alias, we both value her privacy – lives quite near her parents, visits regularly, helps out with finances, health issues and everyday needs. They are in their late eighties. Other siblings live in other states. Until recently everything was fine; now the parents are in separate areas of their assisted living residence, Joan’s mother is in frequent despair and need. What’s a daughter to do?

This story is being repeated thousands of times every day across the country. Only this story has a peculiar twist: Joan’s parents did everything right. They lived frugally, planned ahead, raised their children to be successful and independent, moved early into a retirement community which offers care through illnesses minor and terminal. With Joan’s help they kept their affairs in order, including updated advance directives. (You don’t have your advance directives done? Horrors. Let me know and I will be at your door, cyberspacially speaking, to walk you through them immediately.) Joan’s parents were among early advocates for advance planning and end-of-life choice.

Joan comments: “Frankly, Mother is tired of being alive.  She’s not depressed, just ‘finished’, especially as she sees these slow declines in her quality of life as a steady and inevitable progression.  Her greatest desire would be to have a massive stroke and not survive.  But then her greatest nightmare would be to have a stroke and live . . . Even with the best advanced directives reflecting her choices, that’s a fine line to navigate.”

The moral of this story is that no amount of planning and preparation can guarantee the kinds of last months and years we might want. My own mother died peacefully at home, followed 20 years later by my father, same story. But that was in 1967 and 1987, in the small town of Ashland, Virginia where they had lived since 1939. The town looked after them; their out-of-state daughters merely visited and counted their blessings. Towns and neighborhoods like Ashland are in diminishing supply.

But all is not gloom and doom; this writer is constitutionally unable to write doom and gloom. Joan is at least clear about her parents’ wishes, and her parents have good care plus all allowable precautions: DNR orders, POLST forms, understandings with their medical professionals. Most of these are possible for today’s Boomers and their Beyonder parents; if you can’t find them I’ll happily tell you how. Joan’s parents are also in housing of their choice. And those choices are many: co-housing, retirement communities, assisted living facilities, many of them available to middle and low income Americans. Anyone over 50 who thinks he or she should postpone considering all of these issues, documents and choices until next year is delusional. Essays re housing choices have appeared in earlier Boomers and Beyond posts; others will follow. The secondary moral of this story is that without planning, late years can quickly turn into hell for elderly parents and adult children alike.

What we don’t have, of course, is health care such as Joan’s parents still enjoy for others who need it. The thing is, we can.

General interest
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Grassroots Healthcare Reform

by Fran Johns

If we get a health reform bill, it may be thanks in part to a push from the ground up. That belief is leading to a variety of grassroots support endeavors.

At a hospital-sponsored town hall meeting on the issue this week in San Francisco attendees were invited to take the microphone to tell their stories. Probably a bad idea at any meeting, since such an invitation guarantees off-point rambles and rages and this one certainly proved the point — but there were enough horror stories to assure everyone that our current non-system is a train wreck.

A cardboard cut-out of President Obama stood at the back of the room (there was a lot of photo-op going on before things got started) and the promise was that videos of the stories would go straight to Washington to help speed passage of the hoped-for health reform bill.

Participants told of needed care that couldn’t be found, needed drugs that couldn’t be bought and the widespread suffering of the un- or under-insured. A panel of local experts presented aspects of the hoped-for national plan and spoke of San Francisco’s own moderately successful effort to provide health coverage for all.

Speakers were asked to keep their remarks to under three minutes, another dictum doomed to failure, and a few did. My own plea (one minute, forty seconds) was for inclusion of some guarantee/protection of individual choice at the end of life. It stemmed from working for many years (as I still do) with terminally ill adults who seek options including hastening their dying. It was tempered in deference to the hosts, since St. Francis is a member of Catholic Healthcare West and the opposition of the Catholic Church was largely responsible for defeat of a widely popular physician aid-in-dying bill that narrowly failed in California two years ago. And the likelihood of such a controversial issue getting into the massively complex bill we may or may not get is somewhere between slim and none, but what the heck. With Mr. Obama standing there, I couldn’t resist.

At similar gatherings around the country, I suspect the message and the messengers are much the same. Health reform is a national need that translates in millions of heartbreaking individual stories.

My personal favorite message came from panel member Catherine Dodd, PhD, RN, District Chief of Staff for Nancy Pelosi in her pre-Speaker days. Dodd explained the current three-fold status (two in the Senate and one in the House) of the healthcare bill and defended its  probable cost. Then she threw out one new number: 19.7. After everyone had let 19.7 sink in, she told us that is the number of years it has taken this country, every time a health reform bill has been floated, to bring it up again. “We can’t afford another 19.7 years,” she said. I think she’s right.