Friday's Inspiration Weekly
Burden or Privilege?

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Appetizers:
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I知 growing fonder of my staff;
  I知 growing dimmer in the eyes;
I知 growing fainter in my laugh;
  I知 growing deeper in my sighs;
I知 growing careless of my dress;
  I知 growing frugal of my gold;
I知 growing wise; I知 growing遥es,
  I知 growing old!
Old age is not a disease - it is strength and survivorship, triumph over all kinds of vicissitudes and disappointments, trials and illnesses.

How can I better understand the trials and rewards of aging, and of providing care for the elderly or infirm, especially if caring for a family member?


Entr馥:  When Elder Care Falls to the Young by David Molpus
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Maggie Ornstein was a senior in high school and applying to colleges when her 49-year-old mother suffered a brain aneurysm. An only child with no father around, Maggie was suddenly in charge of her mother's care, from insurance forms to dealings with doctors. Five years and many hospital stays later, her mother is greatly improved, yet Maggie remains her primary caregiver.

Few people as young as Maggie are thrust into caregiving. But increasingly, Americans in their 20s and 30s are taking on that role. More than a fifth of family caregivers are age 35 and under, statistics indicate. And in coming decades, eldercare will touch young people more and more.

On NPR's Morning Edition, I talked with young caregivers, and learned of the special challenges they face. At a time when their peers are starting careers and enjoying vibrant social lives, young caregivers must put their lives on hold.

"My life radically changed when my mother got sick," says David Cassady, a product manager in New York City's fashion industry. "Personally, professionally, I gave up a lot and had to devote my energies to other things - which were mostly caretaking." Cassady's energetic mother was struck with Alzheimer's at the age of 62, when Cassady was 34. During the past six years, he has helped her cope with her shock at the diagnosis, handled chores and hired home attendants.

Such stories are not unusual for many reasons,I discovered. High divorce rates leave spouses without a partner. Women are having babies later in life - so a mother in her 40's may need elder care by the time her child is 30. Sometimes, young people care for grandparents if a parent lives far away or there is an estrangement, says gerontologist Donna Wagner of Towson University in Maryland.

Most workplaces lack awareness of young caregivers' needs, partly because the field of eldercare is so new. Florida-based Coordinated Care Solutions is one of the first to offer pioneering assistance for these caregivers, ranging from telephone check-ins with patients to coordination of medical care.

For now, however, most young caregivers are on their own, with even friends and relatives offering little support. "If anybody had asked me seven years ago, 'If this had happened, would you have been able to handle it?' I would have said, 'Absolutely not,'" says Maggie Ornstein

About the author:

David Molpus, a freelance reporter for National Public Radio, earned his BA in sociology at the University of Mississippi and earned an MA in communications from American University. He is on the Board of Visitors for Guilford College, the only Quaker college in the South, is on the Board of Visitors for Trinity School of Durham, NC, and served on the parents committee at Bryn Mawr College. Molpus is married and has one daughter. His reports are aired regularly on NPR's daily and weekend news programs, including Morning Edition, and All Things Considered, which are each heard by almost ten million people every week.


Main Course: Stand in the Place, Be the Person
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One's life-work generally involves various types of relationships, even "spiritual partnerships," in the learning and growth process. The job of being the person for someone else's lesson is often difficult, but necessary.

Take, for instance, the situation of a caregiver for one who is terminally ill or otherwise severely disabled. How difficult it is to provide all of the necessary aspects of home care for one who finds theirself in such a situation! Unlike a baby, easily handled and quickly satisfied, a full-grown adult is difficult to feed, dress and clean up - especially if they are unable to assist with actions such as bringing the patient to a standing position.

Day after day, it goes on. The caregiver wants to scream, yell, throw things and generally let off some steam, and the reasons for doing so are legion. It's a lousy job, as anyone who has worked in a nursing home, or provided home care can attest. This is not a fun thing to be going through. As a matter of fact, this is yucky, plain and simple.

There is barely enough energy to flop down at the end of a long and trying caregiving day, and give vent to thoughts of, "I love this person, but this is certainly not the way I would prefer to express it. I wish I could trust someone else to do this job as good as I do it. I need all the patience and physical strength I can muster just to do this one more day, one more hour, one more minute."

At the same time, the individual being cared for is most often dealing with what life has thrown at them - a terminal illness like cancer, a disability due to stroke, it doesn't matter what the malady is. What matters is that things, for them (and you!), are not like they were when times were better and they were healthier.

Being the person that is sick, disabled or otherwise under the care of another is not easy, for all of the obvious reasons. The thoughts that go through the mind of that person are along the lines of, "I don't want to be here, I don't want things to be like this. I don't like being cared for like this, like a baby that can't feed or dress theirself. I even have to have help on the toilet, and there is where my last shred of dignity got up and left the room. Hell, no, this ain't fun."

It is difficult to visit someone in this situation, but even more difficult to be the person that provides such care. The patient can be intractable, uncooperative, or angry for any number of reasons, and the caregiver's patience and dedication to the task wears thin. Everything that can go wrong does. Everything that used to work doesn't. It's not easy to find some good in this, is it?

Aside from the process of anger, denial, acceptance and so on, that accompanies any situation that brings a caregiver and patient together, there can be a wealth of life lessons that a caregiving situation can provide for all participants - the one being cared for, as well as caregivers and healthcare workers, family and friends. Valuable lessons, found nowhere else, with no one else.

Yes, it takes courage to step into the scene and participate in the process, whether one is the patient, the care provider, or friends or family members. But, the lessons learned pay dividends long after the job of caregiving, or being cared for, comes to an end. No, it won't be fun, but stand in the place, and be the person. Others are depending on your participation, whether they have said so or not. They really can't do it without you, so don't run away from this, no matter how attractive that idea sounds. 

To those courageous souls who have been that person and stood in that place, to those who have been there and learned those lessons, thank you. Thanks are never enough, of course, but the value of your efforts and patience, and the valuable partnership that you have provided in life's learning process knows no measure.

Where would we be, without you?

Michael Rawls, Friday's Inspiration ゥ 2004


Second Helping: Diapers to Diapers by Barbara Quick
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Sure, it's hard sometimes being the sandwich generation. No sooner do we foreswear the baby diaper aisle in the supermarket than we find ourselves darting furtively down the adult diaper aisle for our parents

I'll never forget the day my mom and I took my grandfather then in his 70s to the hospital for a series of tests and were told that he had to have an enema before anyone would see him. Already quite confused by then and afflicted with Parkinson's disease, my grandfather wasn't in any way up to doing the deed himself. My mother looked at me helplessly. "Barbara, I can't! What are we going to do?"

There was only one thing to do. I took my grandfather by the hand and walked with him into the men's room which, fortunately, had only one toilet and a door that locked. Once we were in there together, my grandfather looked at me, startled. He was confused, but not too confused to know that his granddaughter had just asked him to drop his drawers.

I fought back tears. "Papa," I asked him, "How many times did you clean my bottom when I was a baby? It's my turn now. I owe you." I did what I needed to do; and Papa did what he needed to do. And I thought, thank God I'm able to do this one small thing for this man who throughout my childhood was always there for me.

Caretaking can seem like a burden, but there's also a secret way in which it's a privilege. Those long, sleepless nights when I was trying to breastfeed my newborn son brought out reserves of strength and stubbornness I never knew I possessed. Now my mom, always bubbling over with life and vitality, has cancer that's sending her back to her bed after each half-hour or so of activity. I'm growing close to her in much the same way I grew close to my son in his days of utter dependence on me.

Mom and I weren't close in this way before. She could go months without thinking about picking up a phone to call me. Now we talk on the phone every day. We went together to pick out a wig for her and it was the sort of mother-daughter fashion thing we never did when I was a teenager, because we were always fighting. I'm so sorry that my mom has cancer, but I'm also grateful that we're getting this chance to be so loving to each other, at long last.

This is what it means, I think, to be family - to allow our nearest and dearest to see us at our most vulnerable moments, to let them take us by the hand and help us through.

My baby son's milky, grateful expression as he gazed up at me from my breast after months of struggle to get the whole thing working. My grandfather's eyes when he realized that he didn't have to feel ashamed. The look my mother and I exchanged in the mirror when it dawned on her that going bald wasn't going to be the end of the world for her and she actually looked quite pretty in her wig.

These are the moments that seem to tell the whole story of what it means to feel connected to those we love.

Diapers to diapers, dust to dust. We nurture the part of ourselves that never grows up as we care for our children. We ease our own passage to death with every kindness we show our ailing parents. Whether or not you believe in karma, the spiritual bank account fills up and runneth over.

About the author:

Freelance writer Barbara Quick is a frequent media guest and the author of three books. She has been a regular contributor to The New York Times Book Review since 1984.


Soup to Nuts: From the feedback button
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Millie found the article Keep Asking from July 2002 through searching the internet. She wrote, "I love your articles. I was in need of reading something as powerful as your article!" There's certainly more where that came from! Check the FI Site Search page to find just exactly what you are looking for.

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