Advice from Life’s Graying Edge on Finishing With No Regrets

By JANE E. BRODY

Published: January 9, 2012

 

 

• At 17, I wrote a speech titled, “When You Come to the End of Your Days, Will You Be Able to Write Your Own Epitaph?” It reflected the approach to life I adopted after my mother’s untimely death fromcancer at age 49. I chose to live each day as if it could be my last — but with a watchful eye on the future in case it wasn’t.

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My goal was, and still is, to die without regrets. For more than 50 years, this course has served me well, including my decision to become a science journalist instead of pursuing what had promised to be a more lucrative and prestigious, but probably less enjoyable, career as a biochemist. I find joy each day in mundane things too often overlooked: sunrises and sunsets, an insect on a flower, crows chasing a hawk, a majestic tree, a child at play, an act of kindness toward a stranger. Eventually, most of us learn valuable lessons about how to conduct a successful and satisfying life. But for far too many people, the learning comes too late to help them avoid painful mistakes and decades of wasted time and effort. In recent years, for example, many talented young people have denied their true passions, choosing instead to pursue careers that promise fast and big monetary gains. High rates of divorce speak to an impulsiveness to marry and a tenuous commitment to vows of “till death do us part.” Parents undermine children’s self-confidence and self-esteem by punishing them physically or pushing them down paths, both academic and athletic, that they are ill equipped to follow. And myriad prescriptions forantidepressants and anti-anxiety drugs reflect a widespread tendency to sweat the small stuff, a failure to recognize time-honored sources of happiness, and a reliance on material acquisitions that provide only temporary pleasure. Enter an invaluable source of help, if anyone is willing to listen while there is still time to take corrective action. It is a new book called “30 Lessons for Living” (Hudson Street Press) that offers practical advice from more than 1,000 older Americans from different economic, educational and occupational strata who were interviewed as part of the ongoing Cornell Legacy Project. Its author, Karl Pillemer, a professor of human development at the College of Human Ecology at Cornell and a gerontologist at the Weill Cornell Medical College, calls his subjects “the experts,” and their advice is based on what they did right and wrong in their long lives. Many of the interviews can be viewed at legacyproject.human.cornell.edu. Here is a summary of their most salient thoughts. ON MARRIAGE A satisfying marriage that lasts a lifetime is more likely to result when partners are fundamentally similar and share the same basic values and goals. Although romantic love initially brings most couples together, what keeps them together is an abiding friendship, an ability to communicate, a willingness to give and take, and a commitment to the institution of marriage as well as to each other. An 89-year-old woman who was glad she stayed in her marriage even though her young husband’s behavior was adversely affected by his military service said, “Too many young people now are giving up too early, too soon.” ON CAREERS Not one person in a thousand said that happiness accrued from working as hard as you can to make money to buy whatever you want. Rather, the near-universal view was summed up by an 83-year-old former athlete who worked for decades as an athletic coach and recruiter: “The most important thing is to be involved in a profession that you absolutely love, and that you look forward to going to work to every day.” Although it can take a while to land that ideal job, you should not give up looking for one that makes you happy. Meanwhile, if you’re stuck in a bad job, try to make the most of it until you can move on. And keep in mind that a promotion may be flattering and lucrative but not worth it if it takes you away from what you most enjoy doing. ON PARENTING The demands of modern life often have a negative effect on family life, especially when economic pursuits limit the time parents spend with their children. Most important, the elders said, is to spend more time with your children, even if you must sacrifice to do so. Share in their activities, and do things with them that interest them. Time spent together enables parents to detect budding problems and instill important values. While it’s normal to prefer one child over others, it is critical not to make comparisons and show favoritism. Discipline is important when needed, but physical punishment is rarely effective and can result in children who are aggressive and antisocial.

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Family

We lost a very dear client that we’d been with over 6 years on Christmas Eve. Her death was not unexpected, she was on hospice we had been helping her husband manager her care in the apartment at an assisted living facility where they had just moved. In the days that followed her husband succumbed to years of stress and caregiving, he went into the hospital for pneumonia. The family had started gathering here from all corners of the USA for the funeral but the funeral kept getting delayed because of the ongoing hospitalization of her spouse. There was no longer a family home so everyone was staying in hotels waiting.
So finally they decided to have the funeral in the hospital chapel so the family members could get back to their homes.
THis got me thinking about how scattered families are these days, mine included. All my family and my husbands family are in Texas. THis family of my deceased client was/is a strong vibrant family, 7 grand children, even a great grandchild. Adult children who were involved over the miles.
What struck me is how much my client needed this family in the last years of her life. Embarrassed about her failing health and her appearance shed shut friends out of her life so all that was left was her family. But because family was so far away and scattered the family visits were few and far between. And this family is by no means unique in living away from their elderly parents….. if anything they are the norm.
As a care manager Ive always asserted that family is who you can count on as you age especially in those last years of often failing health. Family Family Family. People have a hard time understanding this because so many times in later years the friendships are even stronger bonds than the family. Because they are local. BUt friends tend to start dealing with their own failing health, if they are all of the same age.
Seeing all the family young and old gathered for my beloved clients funeral made me both sad and happy. Sad for my client because how shed have loved to have seen all them in one place! But also happy…. after all they are her legacy. THis family who cared enough about their mother, grandmother, great grand mother, cousin to come all the way across the country to pay their respects. Looking in those faces, I saw her there and realized that her life had been a true success, full of love, connection and yes family.

Life goes on, and on.,,,

Life Goes On, and On …

Juliette Borda
By JAMES ATLAS
Last Updated: Dec. 17, 2:15 PM CST
A FRIEND calls from her car: “I’m on my way to Cape Cod to scatter my mother’s ashes in the bay, her favorite place.” Another, encountered on the street, mournfully reports that he’s just “planted” his mother. A third e-mails news of her mother’s death with a haunting phrase: “the sledgehammer of fatality.” It feels strange. Why are so many of our mothers dying all at once?

As an actuarial phenomenon, the reason isn’t hard to grasp. My friends are in their 60s now, some creeping up on 70; their mothers are in their 80s or 90s. Ray Kurzweil, the author of “The Singularity Is Near: When Humans Transcend Biology,” believes that we’re close to unlocking the key to immortality. Perhaps within this century, he prophesies, “software-based humans” will be able to survive indefinitely on the Web, “projecting bodies whenever they need or want them, including virtual bodies in diverse realms of virtual reality.” Neat, huh? But for now, it’s pretty much dust to dust, the way it’s always been — mothers included. (Most of our fathers are long gone, alas. Women live longer than men.)

It’s the ones who aren’t dead who should baffle us. My own mother, for instance, still goes to the Boston Symphony and attends a weekly current events class at Brookhaven, her “lifecare living” center (can’t we find a less technocratic word?) near Boston. She writes poems in iambic pentameter for every occasion. At 94, she’s hardly anomalous: there are plenty of nonagenarians at Brookhaven. Ninety is the new old age. As Dr. Muriel Gillick, a specialist in geriatrics and palliative care at Harvard Medical School, says, “If you’ve made it to 85 then you have a reasonable chance of making it to 90.” That number has nearly tripled in the last 30 years. And if you get that far… it’s been estimated that there will be eight million centenarians by 2050.

It won’t end there. Scientists are closing in on the mechanism of what are called “senescent cells,” which cause the tissue deterioration responsible for aging. Studies of mice suggest that targeting these cells can slow down the process. “Every component of cells gets damaged with age,” Leonard Guarente, a biology professor at M.I.T., explained to me. “It’s like an old car. You have to repair it.” We’re not talking about immortality, Professor Guarente cautions. Biotechnology has its limits. “We’re just extending the trend.” Extending the trend? I can hear it now: 110 is the new 100.

Is this a good thing or a bad thing? On the debit side, there’s the … debit. The old-age safety net is already frayed. According to some estimates, Social Security benefits will run out by 2037; Medicare insurance is guaranteed only through 2024. These projected shortfalls are in part the unintended consequence of the American health fetish. The ad executives in “Mad Men” firing up Lucky Strikes and dosing themselves with Canadian Club didn’t have to worry. They’d be dead long before it was time to collect.

Then there’s the question of whether reaching 5 score and 10 is worth it — the quality-of-life question. Who wants to end up — as Jaques intones in “As You Like It” — “sans teeth, sans eyes, sans taste, sans everything”? You may live to be as old as Methuselah, who lasted 969 years, but chances are you’ll feel it.

Worse — it’s no longer a rare event — you can outlive your children. Reading the obituary of Christopher Ma, a Washington Post executive who had been a college classmate of mine, I was especially sad to see that Chris was survived by his wife, a daughter, a son, a brother, two sisters and “his mother, Margaret Ma of Menlo Park, Calif.” Can anything more tragic befall a parent than to be predeceased by a child?

These are the perils old people suffer. What about us, the boomers, now ourselves elderly children? One challenge my entitled generation faces is that many of our long-lived parents are running through their retirement money, which leaves the burden of supporting them to us. (To their credit, it’s a burden that often bothers our parents, too.) And the cost of end-stage health care is huge — a giant portion of all medical expenses in this country are incurred in the last months of life. Meanwhile, our prospects of retirement recede on the horizon.

Also, elder care is stressful and time consuming. The broken hips, the trips to the E.R., the bill paying and insurance paperwork demand patience. A paper titled “Personality Traits of Centenarians’ Offspring” suggests this cohort scores high marks “extraversion, openness, agreeableness and conscientiousness.” But even the well-adjusted find looking after old parents tough.

In the mid-’80s, when the idea of the “sandwich generation” was born — boomers saddled with the care of aging parents while raising their own children — it seemed like a problem we would eventually outgrow. Twenty-five years later, we’re still sandwiched, and some of those caught in the middle feel the squeeze.

So what’s the good part? Time spent with an elderly parent can offer an opportunity for the resolution of “unfinished business,” a chance to indulge in last-act candor. A college classmate writes in our 40th-reunion book of ministering to her chronically ill mother and being “moved by how the twists and turns of complicated health care have deepened our relationship.” I hear a lot about late-in-life bonding between parent and child.

My mother needs a minor operation. “I’ve outlasted my time,” she says as she’s wheeled into surgery. “Anyway, you’re too old to have a mother.” Thanks, Ma. What about Rupert Murdoch? His mother is 102. Also, if I’m too old to have a mother, why do I still feel like a child?

Two weeks later, Mom comes to Vermont to recuperate. My father, who died a decade ago at 87, is buried in the field behind our house (hope this is legal). His gravestone reads “Donald Herman Atlas 1913-2001,” and it has an epitaph from his favorite poet, T. S. Eliot, carved in italics: “I grow old … I grow old …/ I shall wear the bottoms of my trousers rolled.” Mom likes to visit him there. Standing over Dad’s grave, she carries on a dialogue of one. “I thought I’d have joined you by now, Donny, but I’m a tough old bird.” As she heads back up to the house, she turns and waves. “À bientôt.” See you soon.

Not so fast, Mom. I still have issues.

James Atlas is the author of “My Life in the Middle Ages: A Survivor’s Tale.”

Finding Christmas Joy In A Nursing Home

I went to a Christmas dinner with a client this evening at his nursing home facility. There was much merriment going around as the organist played old christmas standards and the maintenance man dressed as Santa went from table to table saying ho ho ho ho. I looked around at the tables with the elderly folks most in wheelchairs and their families all enjoying themselves and marveled once again how adaptable a species we are. Working with elderly I’m reminded of this over and over.

I’m sure none of the people there ever imagined themselves living in a nursing home much less having a Christmas dinner with their families there. But they were making the best of it. And even having a good time.
I looked at my client who has out lived most of his friends and family and is currently in rapid decline. This is probably his last Christmas. He knows it. He has much to be depressed about .,,,And yet there he was moving his body to the song “Jingle Bells” and singing along. Having a jolly time. To the outsider his life might look bleak. Hopeless. Doomed. But there he was tapping his foot, jingling all the way.
Seeing my clients find joy In the small, the ordinary, the things I take for granted is truly a great gift and a valuable lesson in not only how to age but how to be truly alive every day.

Plain Speaking at End of Life

This is topic I feel very passionately about.

THE NEW OLD AGE BLOG
Plain Speaking at the End of Life
By PAULA SPAN
Last Updated: 12:06 PM CST
Dr. Stephen Workman, an internist at the Queen Elizabeth II Health Sciences Center in Halifax, Nova Scotia, takes exception to the language physicians use with patients near the end of life. In one of his recent publications, he called language the most important tool health professionals have to improve the care of dying patients.

I wanted to know more about his ideas, so we spoke by phone.

Q.

You’ve decried the way hospitals and their staffs treat the dying, calling it “an avoidable tragedy.” Why does that happen?

A.

The system is geared for intervention. The narrative of medicine, the stories doctors love to tell and patients love to hear, is that we can identify the problem and fix it. It’s hard to say when that’s no longer true, but there comes a time for all of us.

If physicians challenge their belief that they can cure everyone, they will identify a lot of people who are dying or at risk of dying. And generally care gets pretty rational after that. Once we recognize that someone is dying and that dying people have a claim upon us, things usually become more humane and compassionate.

Q.

Can language make that much difference?

A.

You’re always struggling against expectations. Something else can always be done; there’s always another test and another treatment. So it’s important to let people know when we foresee death.

When I see patients who I think are at risk of dying, I say to the family and patient, “You could die during this hospital admission. Is that something you’ve been thinking about?” Then you can go forward and ask, “What have you been thinking, and what are your expectations?” When you plant the seed that death may be the outcome, people have more acceptance.

They can initially be very shocked: “My goodness, I never knew he was that sick.” They need time to come to terms with it. So you give them more time, rather than tell them in the I.C.U. that it’s time to turn off the ventilator.

If you support them and attend to their needs, most patients and families are very accepting.

Q.

You specifically say someone is dying?

A.

If death is such a terrible thing that I, the doctor, am unable to face it, then I’m asking too much. If I can’t talk openly about dying, how can my patients and their families bridge that gap?

Q.

Why do you disapprove of the more standard approaches? Doctors often say someone is “doing badly” or is “seriously ill” or “critically ill.”

A.

They’re true. But if you say, “Your father may well die,” you will get a different response. When you tell someone that, you create a moral obligation to deal with the fallout, the tears and grief and anguish.

Attempting to avoid that is like wanting to do surgery but not ever wanting to see a patient bleed. You can’t give honest, compassionate, effective care if you’re not comfortable seeing someone cry, and you’ll never give good care at the end of life.

Q.

You’ve written about your preference for telling families that treatment hasn’t been effective.

A.

We have to acknowledge the impotence of our attempts at some point. “We’re not winning. The treatment’s not working. She’s dying despite our best efforts.” People understand if you make it clear that treatment has failed. It’s not that we’re giving up; it’s that we really tried, and we can’t save her.

Q.

But you’d rather not say, “She’s failing to respond to treatment.” Why’s that?

A.

Because it’s shifting responsibility. “The patient is failing to respond” — that naughty patient! As if a good patient would get better. I prefer, “Our treatments aren’t working.” That puts the responsibility on me.

Let’s acknowledge that the human body is incredibly complex and our treatments are simple and only work sometimes. The problem is not the patient; it’s our technology. Let’s be more humble.

Q.

Similarly, you don’t speak in terms of “switching to comfort care.”

A.

I don’t switch to comfort care. I discontinue any treatments that don’t contribute to comfort. Because if this is the day you’re switching to comfort, what kind of care are you switching from? A patient’s symptoms, like pain or shortness of breath — weren’t those important yesterday?

There is no switch. We are always providing comfort care. We’re going to stop the things that don’t help you be more comfortable. Once you acknowledge that a patient is dying, nobody says, “Continue doing the things that hurt.”

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How We Act in Crisis

I just saw George Clooney movie called the Descendents which is a story about a middle aged man dealing with the slow death of his wife who became brain dead after a boating accident.
He has to shepherd 11 and 17 year old daughters through this process as well. The family is rift with dysfunction that comes out in often funny ways, its a wonderful very well acted movie. And realistic. The movie got me thinking about how people react in crisis, how I react to crisis as well as how the families and elderly folks I work with do.
I am pretty calm in a crisis…this is something Ive found out about myself over time. I was in the big san fransisco earth quake of 1989…i had just moved to nth calif from Texas and had not ever experienced an earthquake much less a big earth quake. I was working in an outdoor shopping center when the earth started to rumble and heard a coworker yell ” earthquake run outside fast”!!!….(to avoid glass). I did as instructed and once the quake was over I was ready to go back to work. Thought it was just another earthquake. We were without power and phone service for almost a week after the quake so there was no going back to work.

When crisis happen its important to be calm but not too calm especially if the crisis involves something that needs to be acted on like in the movie the Descendents, the George Clooney character had to mobilize to say his goodbyes.

The movie got me thinking about how people react in crisis and decided there are 4 main ways people tend to behave:

Rational. When something major happens, these folks go on autopilot. They are able to suspend all emotions while taking immediate action to deal with the crisis.

Denial. These people simply cannot deal when things get out of control. They may physically leave the scene of a crisis, or they might distract themselves by making jokes or talking about something unrelated.

The Emoter. When emoter is around, the whole world knows it. These are the people who react openly and acutely to a crisis by crying, screaming, fainting, or generally freaking out.

The Observer. They need to know all the facts about a crisis situation. They want every detail, down to what color socks you were wearing when your lawnmower was stolen. These people are looking for answers and will stop at nothing to get them.

Alzheimer’s and the Invisible Sibling

The Alzheimer’s Reading Room

Alzheimer’s and The Invisible Siblings
If you’re burdened by a family member who is missing-in-action, what do you do?

By Pamela R. Kelley
Are Alzheimer’s Caregivers
the Forgotten?
Buried in the comments to Bob’ s article, In the Bunkhouse, Random Thoughts Edition, and in reference to the growing number of Alzheimer’s caregivers (almost 15 million), I noticed this exchange:
Carole: “What I’d really like stats on, are those who have a close relative with Alzheimer’s … and they refuse to help. I want a stat on the deadbeats so they can see themselves officially identified. Right now they are invisible”.

Nancy: “ Hear, Hear!!! I totally agree!! If everyone who identified themselves as a primary caregiver also indicated how many siblings they have who do not help … well, my conservative estimate is another 15 million!!!”

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Many of us who are the One have experienced intense disappointment, hurt, and anger when we feel like we’ve been abandoned to our mission by those with an equal stake in our loved one’ s care.

Reading the above exchange made me wonder about those invisible siblings and adult children.

How can they blithely carry on without realizing how important and meaningful a small act in support of the caring mission would be? Then, I began to identify all of the assumptions I made when I formulated the question.

I assumed that they are untroubled by their abdication of support responsibilities. I assumed that they know what to do in support. I assumed that they are capable of empathy, for their afflicted parent as well as for their burdened sibling.

Is it reasonable to assume any of this?

Why should it matter whether the invisible sibling is troubled by their inaction? Perhaps because we want to believe that eventually their consciences will prod them to action. Perhaps we cling to this hope despite months and years of evidence to the contrary simply because hope is part of the gravitational force that pulls us forward and through every day.

Maybe they don’t know what to do after all.

The last thing the caregiver needs is another task — that of educating the absent ones on how to help. No primary caregiver can manufacture compassion and empathy in a person unfamiliar with these states of mind and heart. That Herculean task need not be added to our abundant responsibilities.

Everything we choose signifies something about us. We who have chosen to be the One need only consider the invisible ones to realize that another choice existed, and it’s a choice we rejected.

Spending our emotional capital lamenting the incomprehensible choice made by those who have turned a blind eye or hardened their hearts will only deplete us. We can’t afford that.

When I’m troubled by matters like these, I look for a way to frame an invisible sibling’s behavior that explains it. I’m just looking for some sort of rational context so that I can steel myself against future disappointments.

What can feel punitive usually isn’t intended in that way. Contextualizing it lets me put this burden aside for a while, if I’ m lucky.

If you’re burdened by a family member who is missing-in-action, what do you do?

How do you keep those feelings from intruding in the positive and caring environment you work so hard at maintaining?

Pamela R. Kelley is the full-time caregiver for her mother, after serving as her long-distance caregiver for more than four years. Before her caregiving role took primacy, Ms. Kelley directed an American Bar Association-approved paralegal education program at the University of Alaska Anchorage from within UAA’s Justice Center. As she transitioned to full-time caregiving, she prepared a resource manual and presented lectures on long-distance caregiving to her UAA colleagues. She is a 25-year member of the Alaska Bar Association, and concentrated her years of active practice in the areas of commercial transactions and creditor representation in complex bankruptcy cases. Over the years, she has published many articles on topics as varied as cyber-stalking and antitrust law. Ms. Kelley lives, works and writes in Anchorage, Alaska.

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Original content Pamela R. Kelley, the Alzheimer’s Reading Room

Caregiver Burnout

Broken, Briefly
By CELIA WATSON

It was time to stop working, to emerge from my home office into Mom’s world, and I was really frustrated.

I was struggling with a new book idea. No matter what I tried, nothing seemed right. It left me in a really bad mood. Although I knew the struggle was just part of the process, having to stop right then to look after Mom seemed like the final straw.

Fuse/Getty Images
I’ve been taking care of my mother, who is 93, for a year and a half now. Mom has vascular dementia and lives in my home. I’d thought we were doing pretty well. I had no idea I was about to experience an episode of caregiver burnout.

In the living room, Mom stood indecisively between the couch and the sliding glass doors. She had a sweater and a paperback clenched under one arm, the newspaper and a New Yorker under the other, her purse, a glass of water, a banana and a hardcover book gathered against her belly in her hands. Although the day was already warm, she was wearing an old cardigan, one that must have escaped my hideous-clothing purge. Her head was swinging from one side to the other as she looked alternately at the whiteboard inscribed with the day’s agenda and the clock on the mantelpiece.

She reminded me suddenly of the polar bear in the Central Park Zoo, back in the old days before the big renovation. The yellowing giant used to stand there in front of the bars of his tiny concrete cage, swaying from foot to foot, swinging his restless head from side to side, his forehead matted into furrows.

“Now,” Mom said the moment she saw me, “it’s 11:24. Is it time for us to go?”

We were going to a friend’s house for lunch at noon, and our departure time was written boldly in black on the white board: “leaving at 11:45.”

“Mom, look at the board,” I said, the explosion of anger inside my body leaving me rigid. I hate being rushed, and I thought: I really don’t know if I can stand this anymore.

“Well, all right,” said Mom, looking at the board. “Oh yes, leaving at 11:45. Is that enough time to get there?”

“Yes, it is,” I answered tightly, brushing past her.

“O.K., well I’m all ready to go whenever you say.” Mom sat back down on the couch, still holding her extra sweater, banana, purse, glass of water and reading materials.

In the kitchen by myself, I gripped the edge of the counter, feeling like a bad person. I thought: I’m just having a bad day.

But the day didn’t get better, nor did the next. Everything Mom did irritated me. When she raved about the beautiful trees, I hated her hyperbole. When she shrank from someone’s touch, I hated her coldness. When she marveled over obese people at the grocery store, I was enraged by her superciliousness. Her own son had died from complications due to obesity. “Ma,” I said roughly, “do you remember my brother?”

I felt battered by qualities in her that had hurt me when I was young. But these were harms from which I had recovered years ago. I knew my mother loved me and would give me her last nickel, the clothes off her body, her last breath. She would lay down her life for me, as I would for my kids, I knew it.

So why did I hate her?

Everybody talks about caregiver burnout, how you have to make time for yourself or you won’t be able to go on. But nobody talks about how burnout creeps up on you, how it starts to happen before you even realize it. Burnout can be hard to recognize.

At first, being Mom’s caregiver was difficult but exciting, with lots of highs and lows. I was happy to buy her new clothes and to steal away the old icky ones that were many sizes too big. I was thrilled to demonstrate to Mom that once her pure white hair was washed and styled, she was not (as she claimed) bald. She looked absolutely beautiful.

In the beginning, I also fell easily into anger. When Mom accused my son and his friends of stealing her car, which actually was parked in the driveway, I was insulted and angry, not reassuring. Only later, after Mom’s repeated panics about losing her car, did I find my compassion. The car, which she no longer drives, symbolizes her independence. And in truth her independence is being stolen as she ages, bit by bit.

In due course, the drama evened out. We got the basics in place and developed a mutually acceptable routine. Every day, I take time for myself to write, and I give time to Mom to go out and do things. We rarely get angry, and we have a lot of laughs. Mom seems happy. I thought I was on an even keel.

So why all of a sudden did I feel as if I didn’t love my mother, that I hated taking care of her?

“What you’re describing is really a matter of resentment,” said Barry J. Jacobs, psychologist and author of “The Emotional Survival Guide for Caregivers.” “Sometimes caregivers have a difficult time distinguishing between resenting the caregiving and resenting the person. It’s a clear sign of burnout.”

Caregiver burnout often manifests as resentment, anxiety, depression, sleep problems or waking up with a feeling of dread. Many caretakers, Dr. Jacobs added, don’t realize they are burning out until they are “very symptomatic.”

“Often people make a commitment to caregiving as a matter of course,” said Dr. Jacobs. “It’s about family. But they don’t know what they’re signing up for, or how long it will last. At first, caregivers are able to set aside other aspirations, hobbies and friendships to focus on caregiving. But as time goes on, that takes a greater toll.”

Like many others, I’d set aside a lot of my usual activities, things I do without Mom: long walks, going out with friends, even a full-time job. Because Mom always wants to go with me, I do almost nothing without her.

I didn’t think about burnout until a friend asked if I were still practicing meditation every morning. I had to admit I wasn’t. In fact, I couldn’t remember when I’d stopped — sometime in the past year. The very next morning, I returned to my spiritual practice. Instead of racing to my office to hammer away at my book project, I settled in with my prayers, my pillow and my silence.

And a small miracle occurred. As I emerged into the living room, I saw Mom standing on the deck outside the sliding glass doors. The oblique light rebounded off the pale boards, the faint wind ruffled the crabapple tree, and Mom’s white hair lifted, shimmering. Suddenly, she was once again beautiful to me, her diminishing form etched and attenuated by loss, and I no more than a bolder echo of her essence. I could love again.

The suddenness with which my feelings reversed after meditation helped me to recognize burnout for what it was. I didn’t hate my mother. I was spiritually and emotionally exhausted.

Dr. Jacobs listed several essentials for avoiding burnout: physical exercise, respite, replenishment and balance. “Sustainable caregiving requires a lot of self-reflection,” he said. “It requires flexibility and a real commitment to revising the plan on a regular basis.”

I’ve taken that advice to heart. Not only have I rededicated myself to my morning spiritual practice, I’ve started going out with friends in the evening — without Mom — and taking a walk alone every day. I am also putting a respite into place. Once every few weeks, a friend will stay with Mom for 24 hours while I take a break elsewhere.

The experts say that caregivers must make time for themselves, but what I realized is how important the quality of that time is. Time for oneself doesn’t mean time working alone, even when it’s work I love. It means taking time off to connect with friends, to have fun and for me, most importantly, to renew from a wellspring deeper than my own.
N

Still Falling For Her…Poem about Aging

STILL FALLING FOR HER

The phlox in the jar is softening,
from the sphere of it a blossom flutters,
and the whole sagging thing makes me think
of my mother’s flesh, when she was elderly, and it was
wilting, keeping its prettiness in its old-fangled gentleness.
It’s as if I’m falling in love, again,
with my mother, through the gallowsglass of my
own oncoming elderliness, as if,
now that she has been gone from the earth
as many years as a witch’s familiar
has lives, I can catch glimpses of my mother, at
moments when she was alone with herself, and would
pick up her pen and Latinate
vocabulary, and describe what it
was like, on their last cruise, when she rose,
by invitation, from the captain’s table,
and stood behind the black, grand
Steinway, in the open ocean,
and sang. I do not need a picture to
remind me of the look on my
mom’s face, when she sang – extreme yearning,
a yearning out at the edge of what was
socially acceptable
on a ship like that, and you could also see
how happy her face was, to be looked at,
and you could see her listening to her own voice,
to hear if it started to go flat, or anything
she needed to do to get the music
to its hearers intact as itself, I am falling,
and I do not feel that there are rocks, below,
I think I may go on falling, like my own
flesh, for the rest of my life, and maybe I’ll
still be falling for my mother after
my death – or not falling but orbiting,
with her, and maybe we’ll take turns
who is the moon, and who is the earth.
— Sharon Olds

The Exodus from Nursing Homes

From the New Old Age Blog in NYT

A Slow Exodus From Nursing Homes
By PAULA SPAN

If you’ve helped an older relative move into a nursing home in the past year, you’ve likely heard a nurse or administrator pose The Question: “Do you want to talk to someone about the possibility of returning to the community?”

The resident will hear The Question again every three months, when her condition is reassessed. She’ll hear it if there’s a significant change in her condition. Whatever her health issues, whoever is paying the bill, Medicare regulations adopted in October 2010 mandate that she (or a family member or guardian, if she’s not mentally competent) be asked it.

A nursing home resident has always had the legal right to leave. In the past, though, “the question was asked, and nothing had to happen as a result of the answer,” said Barbara Edwards, director of disabled and elderly health programs for the federal Centers for Medicare and Medicaid Services.

Now, The Question has been reworded to make its point — you can go home again — more explicit. As important, a resident’s “yes” now triggers contact with an outside agency that will explain how going home might work.

All this can startle or irritate a new resident’s unwitting relatives. “For most family members, it’s taken a long time to convince a loved one to move into a nursing home,” said Lori Smetanka, director of the National Long-Term Care Ombudsman Resource Center, who’s been hearing an earful about the change.

Now, before a resident has fully unpacked, she said, “Here’s the facility asking, ‘Do you want information about moving out?’ It’s caused some real problems.”

You can imagine. So federal officials are reworking the regulation. By April, the resident will be asked whether she wants to hear The Question every quarter. If she declines, she’ll only hear it annually. But she’ll hear it.

The fact that it’s being asked so frequently reflects a fundamental shift in how the federal and state governments view long-term care. For decades, advocates protested that Medicaid, which pays for most long-term care, was spending way too much on care in the places nobody wanted to be — nursing homes — and very little on care in the places almost everyone preferred — their homes, or as close to home as possible.

The effort to change that, called “rebalancing,” has made progress. In 1999, nearly three-quarters of Medicaid dollars went to institutional care, only 27 percent to home- and community-based services. A decade later, spending on institutional care had declined to 55 percent, with about 45 percent going to home and community services.

A program called Money Follows the Person, adopted in 2007, and provisions in President Obama’s health reform law have accelerated that process. Now, some states spend most of their Medicaid budgets to help maintain older and disabled people in their own homes and apartments or in assisted living. Most of the rest are scrambling to follow suit.

Nursing home populations and occupancy rates have been falling for 20 years. With states now moving thousands of Medicaid recipients out of nursing homes, that’s a trend likely to continue, especially since nursing homes are almost always the most expensive option.

“It’s been a tough road for states to set this up,” Ms. Edwards said. Cuts in nearly every state’s social services budgets haven’t helped.

Moreover, many residents are too frail and sick or too demented to function well outside a facility, even with home care aides and meals on wheels and other kinds of support. Or they may fear living alone and answer The Question with a firm no.

“We don’t want to move people out of a nursing home into isolation and depression and decline,” said Sondra Everhart, state long-term care ombudsman in New Mexico, who directs a staff of four helping residents move. “That’s not a successful transition.”

But the exodus, though still modest, is happening.

Texas, a leader in this respect, helped more than 5,000 people move from nursing homes to community housing from 2007 through June 2010. Michigan, New Mexico, Oregon and Washington also have strong programs.

Mississippi and New York, on the other hand, still spend far more money on nursing homes. Between 2003 and 2009, nursing home occupancy barely budged in New York and actually increased in Mississippi.

“The biggest barrier to transition is housing,” said Ms. Everhart. After a couple of months in a facility, old people may no longer have a home to return to, if they gave up an apartment or sold a house and dispersed most of their possessions. Moving into assisted living, which most states classify as returning to the community, may not be what they had in mind.

“At least, it’s not a hospital bed,” Ms. Everhart said.

Her office has also learned that nursing homes are not so keen on discharging residents. “They make money keeping you in,” she pointed out.

But hundreds of New Mexicans are, nonetheless, making the transition. Later this week, I’ll tell you about a 92-year-old who has, so far, pulled it off.

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