Caregiving and the fight-flight-freeze response

Judy Long
Judy Long

Fight, flight or freeze. Those are the three traditional options we humans have when confronted with dangerous or overwhelming situations. Judy Long suggests a fourth: challenge. For caregivers whose stress levels often keep them on a high-fight-or-flight alert, this new option can come as good news.

Long spoke recently on Caregiver Resilience and Well-Being: Sustainable Caregiving at a meeting in San Francisco. “The ‘challenge’ response,” she told members of the San Francisco Bay Area Network for End of Life Care, “can actually have biological benefits. When you can look at (your stress) as excitement you can actually perform better.”

Judy Long, who is currently Palliative Care Chaplain in the Department of Neuropathy at the University of California San Francisco, has an extensive list of credentials in things like Mindfulness-Based Stress Reduction and Mindful Self-Compassion – the academics underlying today’s insights into the caregiving business. And for those in the trenches of caregiving, small suggestions can offer big help.

“Sustainable caregiving,” Long says, involves “all of the things we do for ourselves when we’re involved with caregiving. I know how exhausting it can be. But we can all be doing things that have great meaning, that are nurturing and nourishing for ourselves.”

Long tells of completing her chaplaincy training, which included a year of training at the University of California San Francisco. One year later, she says, she was asked to take on a six-month chaplaincy at UCSF – assigned to the neonatal intensive care unit, commonly referred to as NICU. “I wondered how to keep myself centered in all that terrible suffering.” The patients in NICU are mostly premature or very sick hands-with-heartsinfants, lying in “isolettes.” While extraordinary progress has been made, and continues to be made, with successful treatments, having a newborn in NICU is stressful for parents, and many infants die. It falls to the chaplain, much of the time, to tell a parent his or her baby will not survive, or will have permanent damage. “I found out I was okay with that,” Long says, partly for having had some time in between training and actual chaplaincy work in a difficult setting.

“I’m a pragmatist,” Long says; “I always ask what works.” She was determined not to fall into the trap of many caregivers: “overwhelm, shutting myself off from caring by building an armor. Caregiving also points back to ourselves.”

Long credits one of her teachers and mentors, Roshi Joan Halifax of the Upaya Zen Center in Santa Fe, NM, with offering guidelines she uses to guard against the common pitfalls of isolation – “there are a lot of opportunities to be isolated while trying to do good” – and the sense of helplessness. “I call them my three points: purpose, connection and control.”

Long’s audience at the recent meeting included many who have chosen, as Long herself has, a career path in the caregiving field. It also included three older women, among whom is this writer, who are fulltime caregivers for their husbands: one with peripheral neuropathy, one with both cancer and progressive memory loss and one with Parkinson’s disease. For the family caregiver, purpose and connection are clear. But control? An elusive element at best.

Which brings us back to the fight-flight-freeze business. Challenge may still be an option.

 

Willie Parker vs Reproductive Oppression

Dr. Willie Parker
Dr. Willie Parker

“The Racialization of Abortion,” Willie Parker titled his talk; “A Dirty Jedi Mind Trick.” He then spent about 45 lively, provocative minutes elaborating on the theme.

The occasion was a recent Grand Rounds presentation at the University of California, San Francisco School of Medicine, where he addressed a standing-room-only crowd of (mostly) young interns for an event that more commonly draws a smattering of attendees. But when Willie Parker comes to town, it’s a good idea to bring in extra chairs. Parker is an African American physician, a provider of abortion and reproductive health services to women who would otherwise be denied them, current board chair of Physicians for Reproductive Health, a ferocious defender of women’s rights and fearless citizen. He is also this writer’s personal hero.

Parker explained in his opening remarks that his “is heart work and head work. Dr. Martin Luther King said the heart can’t be right if the head is wrong. (King) also said we have guided missiles and misguided people.” On the podium, delivering a rapid-fire lecture in behalf of reproductive justice, Parker is akin to a guided missile consisting of equal parts passion, outrage and statistics. The youngest of six children whose mother sent them to church three times a week, he speaks with the cadence and conviction born of those roots.

“There are over six million pregnancies per year in the U.S.,” he says. “Half of them are unintended. Of the unintended pregnancies, half end in births; half in abortions. One in three women under 45 will have an abortion. While unintended pregnancies have fallen among the upper classes, they have increased 29% among the poor. Blacks and Latinos are disproportionately likely to have unintended pregnancies…”

And it is at this point that Parker’s inner preacher takes over. “People,” he says, “we’re gonna get ugly for Jesus.” It is his challenge to those who attack him, most often fundamentalist Christians, for protecting the reproductive rights of his mostly young, Black clients. Often they also accuse him of participating in “Black genocide.” It is this myth — that abortion is a government plot to eradicate the Black race – that leads to the Dirty Jedi Mind Trick theme.

“It is epidemiological mischief,” he explains. “They take data, put a spin on it that is not intended, and then start a ‘call-and-response’: You have white people saying abortion is racist, getting Black people to say Amen. They can put a cultural war in your framework. It’s important that we recognize the significance of this message, and debunk it.”

In addition to the epidemiological mischief there are outright lies. Former presidential candidate Herman Cain, an African American Tea Party Republican, said in one speech that 75% of abortion clinics were in Black neighborhoods, to encourage African American women not to have children. Parker says the correct figure, according to the Guttmacher Institute, is 9%.

“At its core,” Parker says of these efforts, “it is patriarchal and insulting. They assume a woman is not capable of making her own decisions about her own body.”

What’s needed now, to combat all this, Parker says, “is a new framework, to define this community problem as Reproductive Oppressionon. Reproductive oppression is the control and exploitation of women and girls and individuals through our bodies.” Parker cites the long history of reproductive oppression that includes “forced breeding during slavery, sterilizations, and human experimentation on Puerto Rican women for the contraceptive pill.

“Current examples of reproductive oppression,” he says, “include limiting access to reproductive healthcare, family caps in welfare, and federal and state laws restricting access to abortion.”

But there is hope. Parker cites Atlanta-based SisterSong and its formidable co-founder Loretta Ross as embodying the principals of reproductive justice. Parker lists these as:

1 – Every woman has the right to decide when to have children.

2 – Every woman has the right to decide if she will not have a child.

3 – Women and families (deserve) the resources to parent the children they already have.

4 – Every human being has the right to primary sexual pleasure.

Anti-abortion forces would certainly argue against at least the first two. Parker’s message to the young interns was that it’s not just argument, but twisted myths and dirty tricks that are being used to deny those rights. He maintains it’s the responsibility of the medical community, among others, to stand up for women who are suffering from being denied, to fight against reproductive oppression.

In all likelihood, Willie Parker will keep right on leading that battle.

  *   *   *   *

(Read Dr. Parker’s statement on the recent Supreme Court ruling against restrictive Texas abortion laws: http://prh.org/)

 

To Have (or maybe not) a Stroke

Heart attack

“You’re not leaving here with your blood pressure that high,” the doctor said. It was 189 over something equally ridiculous. It was not interested in coming down. Finally she said, “Okay, pick up this prescription on your way out and take it the minute you get home.”

Vividly running through my head were images of my mother, who suffered a series of strokes that eventually killed her in her 70th year. Plus images of assorted aunts and others who suffered debilitating strokes and often early deaths.

“But . . . but,” I said to the doctor, as I have repeatedly said since my carefree youth; “I don’t have high blood pressure. My three older sisters? They all had high blood pressure. They also all had beautiful auburn curls, while I got the utterly straight, dishwater blond hair. So, shortly into our adulthood, I took to saying, ‘OK, keep your gorgeous curly hair, I’ve got the good blood pressure.’ It seemed like a pretty fair trade.” My physician said, not unsympathetically, “Those genes may have caught up with you.” And just like that, I joined the ranks of the hypertensive. That great mass of humanity waiting apprehensively for the stroke or heart attack that might swoop in and end it all.

By the time I got home I was visualizing an immediate demise.

Unlike my mother’s generation, though, today’s hypertensives have internet encyclopedias worth of information and an arsenal of drugs bewildering enough to induce a small stroke if you really try to figure them all out. Beta blockers. Diuretics. Angiotensin II receptor blockers. Vasodilators. A good doctor, whose advice you can follow, at least on which meds to take, is a great boon. french fries

The rest of the try-not-to-have-a-stroke business is fairly straightforward. Quit with the nicotine, and moderate the booze (or quit that too.) Watch the weight – extra poundage, especially around the midsection, can increase your stroke probability rather dramatically. Walk for at least 30 minutes a day, increasing the distance as you can. (Swim, bike, exercise.) Salt can do you in fast; if you’re trying to stay within the recommended 1,000 to 2,000 mg per day, a large order of fries (350 mg) might not be a wise choice.

This writer is good with most of the above – excepting an occasional uncontrollable urge for a small order of fries. Plus whatever that was I picked up from the Kaiser pharmacy definitely worked. One tiny little pill, and the next day my blood pressure was 114 over 85.

Maybe I’ll stick around for a while.

Dying On Your Own Terms

Mileva Lewis with the author
Mileva Lewis with the author

Do Not Resuscitate? Allow Natural Death? Do everything to keep me alive? Whatever happens, I don’t want tubes down my throat! Keep me out of Intensive Care Units!

End-of-life decision-making gets tougher every day.

Dying – that straightforward, universal human experience – now often involves a bewildering assortment of choices and decisions. And most of us are poorly prepared. We have core values (and usually more than a few fears and family histories) that come into play in making end-of –life choices, but too many of us are caught unawares.

At a recent Commonwealth Club of California event Mileva Saulo Lewis, EdD, RN, used a “values history” approach to explain how these difficult decisions are made, and to help audience members walk through the process. “Values history” translates: What matters to you? Why? It was developed at the Center for Medical Ethics and Mediation in San Diego.

“Values,” Lewis explains, “are the criteria by which you make decisions.” They might be rooted in your home and family, your faith community, college or university, workplace or elsewhere, but one’s values underlie all decision-making. And the reason all this matters today, especially with end-of-life decisions, is that medicine and technology have made seismic shifts over the past half century.

Lewis spoke of how the patient/physician relationship, one of these shifts, has moved from the paternalistic, “father knows best” model to what is now often termed “patient-centered” care – shared decision-making. This new model requires patients not only to be well informed, but also to be proactive and to make their values known.

The goals of medicine, Lewis explains, include curing disease, relieving symptoms and suffering, and preventing untimely death. The patient’s part is to make sure the healthcare provider explains and counsels adequately, and respects the patient’s expressed wishes. Ideally, decisions will be made in concert.

Lewis outlined some of the factors to consider in end-of-life decision-making such as how important to you is independence, being able to communicate with others, being pain-free and other end-of-life circumstances that have been frequently discussed in this space. She suggested one tool that has not been mentioned here, and is an excellent aid: the Ottawa Personal Decision Guide. However you make (and record) your personal choices, she stresses the importance of thinking through your values, writing down your wishes and – most important of all – talking it all over with friends, family members and your healthcare provider.

“Know yourself,” Mileva Lewis says. “Communicate. Trust yourself, and your healthcare provider. And be proactive.”

Heeding Lewis’ advice can help protect your values, and insure that your end-of-life wishes are respected.

My Problem With the Pope

Pope Francis
Pope Francis

Pope Francis the Good is one truly uplifting presence on the world stage. Millions of us welcome and rejoice over his messages about helping those less fortunate, building tolerance and seeking justice – all goals that could use reinforcing in almost every corner of this turbulent planet. Even for us Protestants, it’s a good time to share the name Frances, by whatever spelling.

But the pope and I have a small disagreement.

Should a woman have control of her own body? Not if it contains an embryo, or if she might want to prevent it from growing an embryo, according to the pope.

Abortion? Absolutely not, says the pope. Being a forgiving sort, he has empowered more priests to “forgive” women who have chosen to have abortions and would like to continue practicing their Catholic faith. But once conception occurs – no matter that it’s the result of rape, incest, abuse or a limitless range of very personal issues – the woman must be shoved aside and all focus be on bringing that unwanted fetus into a life of questionable care. And any woman who has made this very personal decision must “seek forgiveness”?

This writer does not profess to be a Biblical scholar, but I have not found, or ever had anyone point out, anywhere in the good book that it says Thou Shalt Not Abort. In all the centuries of mostly men who wrote and have subsequently interpreted the Bible, somehow they – including centuries of presumably celibate priests – have simply opted to deprive women of all reproductive freedom. And today they would still deny a woman’s right to exercise free will.

But it is on the issue of contraception that the pope’s messages ring false, and harsh. One cannot fight poverty and simultaneously demand that poor women bear more unwanted children. If one so adamantly opposes abortion, how can one ignore the fact that adequate contraception would prevent millions of unintended pregnancies – and reduce abortions exponentially?

According to a recent New York Times editorial, a “2014 poll of 12,000 Catholics in 12 countries found that 78 percent supported contraception; in Spain, France, Columbia, Brazil and the pope’s native Argentina, more than 90 percent supported its use.”

The Guttmacher Institute, quoted in the same Times editorial, reports that some 225 million women who want to avoid unintended pregnancies do not use (often cannot access) reliable contraception. “Providing them with contraception would prevent 52 million unintended pregnancies, 14 million unsafe abortions and 70,000 maternal deaths a year.” Even if you don’t care about the maternal deaths – as is clear with “Pro-Lifer’s” everywhere – how does it not make sense to prevent the 52 million unintended pregnancies and 14 million unsafe abortions?

Could someone please ask the good pope to consider these facts? He probably won’t get that request from House Speaker John Boehner, one of twelve children, but he could get it from his equally faithful follower former Speaker Nancy Pelosi. Pope Francis is reportedly a very good listener.

One can only hope.

Holding Silvan: A tale of loss and love

The new mother’s worst nightmare came in shards of bewildering words: “subdural hematoma… basal ganglia… thalami…sagittal sinus…” And the terrible eventual diagnosis: “severe hypoxic ischemic encephalopathy.”

 Monica Wesolowska
Monica Wesolowska

Once they had processed the meaning of it all – that their beautiful baby had no functional brain, no hope for a life, Monica Wesolowska and her husband David made the hardest decision ever required of parents, to let their infant son die. It was a decision complicated by advanced medical technology, a world into which the family was swept up, and by the wrenching physical, emotional and moral issues. But the two grieving parents clung fiercely to the conviction that they were choosing what was best for their son, and to the determination that for whatever time he had they would give him comfort, care and abundant love.

Wesolowska tells this tale with unflinching honesty in Holding Silvan: A Brief Life, a small book that manages to keep the reader mesmerized with what is ultimately a story of courage and, above all, life. She spoke with this writer recently about the book, and those days.

“I wanted and needed to write it,” Wesolowska says, in response to a question about whether the writing was therapeutic. “I felt very fortunate to be able to spend time remembering Silvan. Also, to revisit the time, do research…” Years later, both the experience and the firstborn son are integral to Wesolowska’s life; in the days and weeks after Silvan’s birth there was time only to struggle with the issues at hand. It is the immediacy of this struggle, overlaid with the love that surrounded Silvan as he died, that holds the reader.

After publication, we asked, did Wesolowska get negative feedback? “I was surprised at how little,” she says. “In part, I think it was because so few people want to read a book about the loss of a baby. A few heartening back-and-forths, when people came around. But the most difficult (discussions) are with parents of brain-damaged children. It turns out that what they’re dealing with is much less extreme (damage.)” In such cases Wesolowska tries to communicate the singularity of the choice she and David made. “My goodness, I would never suggest a child with disabilities is not absolutely loveable. I’m not here to judge the difference of your love.”

Holding Silvan coverThere were helpful and unhelpful things that people said and did as Silvan was dying and in the aftermath. The best, Wesolowska says, “were the people who told me I was a good mother. What I was going through was motherhood, and a deep love. The hardest to take were when people said ‘Why didn’t you let him die a different way,’ or ‘How can you be so certain?’”

No one, though, tried to talk them out of their decision. In their Berkeley, CA area, “We were in a kind of liberal bubble,” she says. “But we really struggled toward the end. Legally, it was frightening.”

For all the fear, tragedy and loss, Holding Silvan is surprisingly uplifting. And, Spoiler Alert: there is a happy ending.

 

Illness, Wellness and Procrastination

gumby & stethoscopeYou may have had an experience like this: some nagging health issue not quite bad enough to take the time to tackle. Or with a solution that seems too painful, too bothersome… so you let the issue keep on nagging, usually getting worse.

For me, it was a minor foot issue – okay, an inelegant ingrown toenail. My good pedicurist, alternating with a private podiatrist (my healthcare provider does not provider for regular foot care,) kept the darned thing at bay for the past four or five years. It was a pain in the foot, but on the scale of one to ten it peaked to eight only rarely. Almost a year ago, my podiatrist reached the limit of his patience.

“Look,” he said (while I tried not to look,) “I’ve nursed this thing along for months, maybe years longer than need be. Go for the surgery.” He drew a few lines to show where a slice of toenail would be cut off. “Kaiser has some excellent podiatrists. It’s done with local anesthesia and only takes a few minutes. Three or four weeks of soaking etc, keeping it clean, you’ll be fine.”

Those were the words he spoke. What I heard was: Local anesthesia! Sticking needles in between my toes! Three or four weeks with one foot in a pan? A month without walking along the admittedly dirty park trails? It took me another six months to screw up my courage. Months of anticipated agonies one could hardly wrap the mind around, months of despair over a lengthy recuperation…

Toe 8.7.15Finally I took a deep breath and scheduled the surgery. Instead of (or before; I still wasn’t looking) the shot in the toe there was a freezing action the doctor said would “feel like ice pouring over the area” which was, in fact, breathtakingly painful for about 15 seconds. And that was it. A few minutes later I was handed a sheet of instructions for “after a nail procedure,” fitted out with a Velcro’d boot, and sent off to drive home. It was all I could do to remain pitiful enough for a few hours’ sympathy. The next day, the fancy bandage came off. Recovery boiled down to Band-Aids and a little pother of three-times-a-day soaking for 5 minutes. Probably the most difficult part of this long-feared episode was being confined to home for two days, soaking, elevating (not critical, but perhaps helpful) and feeling pitiful. By the end of the second day I was going stir crazy. So I suited up in socks and Birkenstocks and went to a jazz service.

There I met an old friend who left San Francisco several years ago. “I guess you hadn’t heard about Bob’s surgery,” she said, when I asked how long they’d been in town. “They found a tumor on his kidney. He was at the VA, and they took out one kidney, his urethra, a lot of other stuff. They say he’s fine now. We got an apartment here so he could recuperate.” About that time her recovering husband walked up for a hug.

“Well,” I said, “I was going to complain about my toenail.”

 

 

Fighting off dementia

DementiaAlzheimer’s – already afflicting well over 5 million Americans – is expected to claim more than 16 million of us by 2050 if a cure isn’t found. Today it is at the top of the Bad News list of potential diagnoses for almost anyone over 50. Justifiably so, since the Centers for Disease Control and Prevention reports than one in three seniors now die with Alzheimer’s or other dementia.

That’s the bad news.

The good news, explained recently by Patricia Spilman, M.S. at a sold-out Commonwealth Club event in San Francisco, is that there are things one can to do lower the risk, and perhaps slow the progress of the disease. Spilman, who is Staff Scientist at the Buck Institute’s Bredesen Lab, should know. She has spent more than two decades researching neurodegenerative disease, and has written and spoken extensively on Alzheimer’s and related diseases.

“Forgetting,” Spilman says, by way of reassurance, “is normal. You don’t need to remember where you put the car keys last week, or a doctor’s appointment last month.” And studies – including one by Buck Institute founding President and CEO Dale Bredesen M.D. that is fascinating even for a lay reader – suggest that cognitive decline can be slowed, or in some cases reversed.

Spilman’s prepared remarks consisted largely of useful, realistic advice about how to delay the cognitive decline most of us will experience at some point. The audience, ranging from 20-somethings to more than a few senior citizens, was furiously note-taking throughout (or furiously jotting down questions for the Q&A session to follow.)

Exercise – particularly activities that combine movement and navigation such as tennis or golf – is at the top of the list. “It’s easier if you have a partner,” Spilman suggests, “because this adds the important element of socialization. Walking, plus climbing, is particularly good if you try new routes.” More than a few audience members nodded knowingly when Spilman noted the increasing, widespread dependence on mindless GPS. “Take the opportunity to look at a map,” she said.

Cognitive decline can also be offset by paying attention to the critical need for plenty of sleep. To help with a good night’s sleep, Spilman advises allowing at least several hours between eating and going to bed, and having a dark room. Chronic stress is relieved by a combination of exercise and sleep, along with those other preservatives of gray matter, yoga and mindfulness meditation.

Also good for the brain: almost any sensory stimulation. Music, smells, touch. Spilman cites Oliver Sacks’ Musicophilia: Tales of Music and the Brain, and Norman Cousins’ Anatomy of an Illness, in which Cousins treated himself with comedy as useful reading.

“Do something new every week,” Spilman suggests; “every day. Have goals in later life. Take classes, volunteer, build intergenerational relationships, pursue spirituality, encourage others to change and to grow.”

Computer games can improve cognition also. Spilman did not mention any specific sites, but this writer has enjoyed BrainHQ, and other brainy items from Posit Science’s Karen Merzenich, as well as introductory games on the Lumosity site. Most fascinating of all is the University of California San Francisco (UCSF)’s Brain Health Registry, in which anyone can participate; it’s free, and your brain might wind up helping someone else’s brain one day.

The Q&A segment following Spilman’s talk was fast and full of both personal stories and pertinent questions: “What’s normal decline?” (The difference between not remembering the movie star’s name and not being able to do a job well. You might keep a diary of cognitive function.) “What about genetics – the father-daughter-son factors?” (Yet unproven.) “How about overexposure to electromagnetic fields? (Don’t have unnecessary radiation.) And enough other issues raised for two or three more hours.

No one’s brain, in any event, was idle. Which indicates that everyone in Spilman’s audience was lowering his or her risk of Alzheimer’s.

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