Tagged Elder Care

Crossing Paths: A Baby and His Grandfather

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Credit Josephine Sittenfeld and Thad Russell

In a photo essay, Thad Russell and Josephine Sittenfeld chronicle the end of life of a beloved father and the beginning of life of their new baby.

Nov. 20 – Thad

I’ve left my very pregnant wife, Jo, and our little daughter, Polly, to drive up to northern Vermont to retrieve my 86-year-old father and bring him back to Providence.

But when I get there, Dad is hunched over in his chair in the living room. He looks thin and tired, unshaven, confused, cold, short of breath.

In a weak voice he says that his lungs aren’t working and he can’t get enough air. With his arm hanging limply over my shoulder I move him toward his bedroom. I take off his shoes and glasses, turn off his light, and kiss him goodnight. I go to bed shaken to the core.

Dad grew up on a farm, played football in high school, went to M.I.T. to study engineering and architecture, and had a long career designing and building houses.

He became an expert skier back in the 1950s when downhill skiing was rebellious and dangerous.

And now, maybe for the first time ever, he doesn’t want to get out of bed.

I call my friend Bill, an emergency room doctor. He tells me quietly and firmly, “Call 911 and get him to a hospital ASAP. Don’t think about it. Just do it.”

This is the last time my father will ever see his land or be in his own house or sleep in his own bed. In fact, it is the last time he will sleep in any bed that isn’t in a hospital or nursing home. It’s the last time he will live without the assistance of a walker or a wheelchair, a professional caregiver or an adult diaper.

At the hospital, Dad’s cardiologist puts it bluntly. “Your father needs a new heart, and he’s not going to get one. I’ve used up my bag of tricks. Have you thought about hospice?”

Photo

Credit Josephine Sittenfeld and Thad Russell

Jo

That tiny, rapidly fluttering shape amid the gray static — even though I’ve been through ultrasounds before with my first child, the evidence of the life inside me is still awe-inspiring. I feel excited and tearful.

Nov. 28 – Thad

Dad’s vital signs are bad. He has trouble breathing and now needs oxygen full-time. It’s Thanksgiving morning, and Dad is taken by ambulance from the nursing home to the Miriam Hospital. I meet him in the emergency room, abandoning Jo to cook her first turkey and prepare for a house full of in-laws. The emergency room staff does a battery of tests and confirms what we already know: Dad is suffering from late-stage heart failure.

But after a few hours, he’s released, and I bring him home for Thanksgiving dinner.

Dec. 25 – Thad

Amazingly, Dad is able to be at our house on Christmas Day. He doesn’t believe in Santa Claus, or even Jesus for that matter. But he does like a good turkey dinner.

Photo

Credit Josephine Sittenfeld and Thad Russell

Jan. 9 – Jo

I wake up at exactly midnight with contractions. Around 6 a.m. the contractions get closer together. Polly wakes up and thinks it’s funny that I’m mooing like a cow. Thad and I take Polly to a neighbor’s house and head to the hospital.

I have another killer contraction in the lobby. I’m on all fours on the floor, moaning. People are staring.

Once we finally get to the room, I get into the tub. It feels good to be in the water, but the contractions are painful and intense — after the tub I’m on a ball, then on the bed, then standing, then on the toilet, then back on the bed.

Thad is on the phone in the next room trying to coordinate a urology appointment for his dad when all of a sudden things intensify. The baby’s head starts crowning, and it burns like hell. The nurse runs out to get Thad. And with a few more pushes our baby is out.

When they hand him to me, he’s big and grayish, but pretty quickly turns pink.

It’s intense and beautiful and crazy and amazing.

Baby Curtis lies on my chest, still connected through the umbilical cord, and Thad and I just take him in.

Photo

Credit Josephine Sittenfeld and Thad Russell

Jan. 13 – Thad

Dad is excited to meet his first grandson  —  and a little confused. He keeps calling him Matt, and asks when we have to give him back.

Photo

Credit Josephine Sittenfeld and Thad Russell

Jan. 24 – Thad

A nurse calls to tell me that Dad has fallen. I meet him in the E.R., again. He looks pretty beat up and has a big gash on the top of his head.

The test results worry the doctors.

And yet he survives  —  for days, then weeks, then months.

I visit Dad as often as I can and for as long as I can. I pick him up and we go on little field trips: to doctors’ appointments, to get new eyeglasses, to get his hearing aids cleaned, or to our house for dinner.

Photo

Credit Josephine Sittenfeld and Thad Russell

Occasionally, I find Dad asleep in his room, his face lit by the light of CNN Headline News. Some nights I stay with him for quite a while, rubbing his feet, watching him breathe and wondering what he is dreaming about.

I feel conflicted  —  it’s not that I want Dad to die, but I sometimes wonder if this is the way he ever wanted to live.

Dad can’t walk, get dressed or complete most basic daily routines without assistance, but his spirits are good.

In July, Dad has a bad fall, spends another week in the hospital. I call my siblings and tell them it’s time. We’re going to start hospice.

Photo

Credit Josephine Sittenfeld and Thad Russell

Aug. 8 – Jo and Thad

Dear Family & Friends –

We are sad to report that Sam died Friday evening. He was 87 years old.

For the past year, Dad continually impressed us with his dignity, toughness and overriding will to live. He  —  and we  —  were rewarded with some distinctly good days that we will never forget.

But last week, he and his heart decided it was time. He retired early one evening, declaring that his bed felt “wonderful,” and started his long sleep.

In the end, he passed quietly and gracefully, surrounded by his family (including his bouncy and bubbly baby grandson Curtis, who played happily at the foot of his bed), and a wonderfully compassionate team of rotating attendants and nurses.

Ever the solar animal, he waited until just after sunset to pass.

With love and thanks,

Thad & Jo

Photo

Credit Josephine Sittenfeld and Thad Russell


Thad Russell and Josephine Sittenfeld are photographers who live in Providence, R.I., and teach at the Rhode Island School of Design. More of their work can be found at thadrussell.com and josittenfeld.com.

Supporting Children Who Serve as Caregivers

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Credit Paul Rogers

In the normal scheme of things, parents and grandparents take care of children when they’re sick or need help or sustenance. But in well over a million American families, this pattern is reversed, with children as young as 8, 9 or 10 partly or fully responsible for the welfare of adults or siblings they live with.

They may have to shop, prepare meals, clean house, do the laundry and tend to the hygienic needs of family members unable to care for themselves.

At the same time, these children must go to school, do their homework and attempt, but usually fail, to participate in nonacademic activities like sports and friendships widely recognized as important to well-rounded development.

Connie Siskowski, a registered nurse in Boca Raton, Fla., knows well the challenges these children face. As an 11-year-old with divorced parents, she began living with her grandparents in New Jersey. Her grandfather was, as she put it, “my hero, the only person I was close to, and it was my honor to help him with personal care issues.

“I slept in the living room so I could be near him in case he needed something during the night. One night I went into the bedroom to give him his medicine, and I found him dead of cardiac disease.”

There was no support system to help Connie, then 13, deal with the emotional fallout from this loss and put the pieces of her life back together. For years thereafter, she said she made poor personal choices, including three bad marriages. Her only good choice during this time: going straight from high school to nursing school, then getting advanced degrees in cardiac nursing and health care administration and a Ph.D. in educational leadership.

After her third marriage failed, she finally found her emotional equilibrium through counseling. She married a fourth time to a man who loves and respects her and, with his encouragement, felt compelled to do something to help caregiving children and “prevent some of the repercussions I experienced.”

In 2006, Dr. Siskowski started the Caregiving Youth Project, dedicated to helping young caregivers of ill, elderly or disabled family members. With support from grants and private donations her organization, now called the American Association of Caregiving Youth, works with school districts to identify children who need help navigating the competing demands of caregiving and school and still find some time to be a child.

Thus far, more than 1,000 children in Palm Beach County, Florida, have benefited from the support the organization offers to children 18 or younger who regularly help relatives with “physical or mental illness, disability, frailty associated with aging, substance misuse or other conditions.”

As many as 1.4 million American children from ages 8 to 18 care for a parent, grandparent or sibling with a disability or illness, the American Psychological Association says, but it remains largely a hidden problem. Parents are often too embarrassed to tell schools how much they depend on their children, and caregiving children fear being taken away from their parents.

Many of these youngsters come from low-income, often single-parent households. They often fall behind in school, suffer from sleep deprivation and struggle with depression, anxiety and stress, said Gail G. Hunt of the National Alliance for Caregiving. She said 58 percent of these children “are too worried to concentrate on their schoolwork,” yet few tell their teachers about their responsibilities at home. A 2006 study by Civic Enterprises conducted for the Bill and Melinda Gates Foundation found that 22 percent of high school dropouts in this country leave school to care for a family member.

Dr. Siskowski’s Caregiving Youth project, now at eight middle schools and nine high schools in Florida, offers classes on topics like coping with stress and anger and managing finances. Along with home-care demonstrations and respite care, the project sponsors field trips, overnight camps and other recreational and social activities. They hope to expand the program to other schools throughout the country.

Schools are made aware that the children’s responsibilities may be reasons for incomplete homework, absenteeism and poor academic performance. The project offers in-home tutoring and study programs and even provides computers and printers for children who can’t get to a library. After four house fires resulted from youthful cooking attempts, the association began distributing slow cookers and fire extinguishers.

Perhaps most important, the children learn that they are not alone and that there is help available. “The kids feel valued; they learn what love is, and it flips the anger and frustration they may otherwise feel,” Dr. Siskowski said. The project stays in their corner until they graduate from high school.

One beneficiary was Nickolaus Dent, featured on CNN in 2012. When Nickolaus was 11, his father died and he became primary caregiver for his mother, sick with H.I.V. The boy was responsible for the grocery shopping and cooking, cleaning and laundry. He made sure his mother took her medication, got her dressed and sometimes even helped her bathe.

He said he considered caring for his mother “a bigger priority than going to school.” But with the organization’s help, he managed to do both, getting A’s and B’s. His mother died in December 2012, and Nickolaus expects to graduate from high school this year.

Others now being helped include Julianna Doran, a 14-year-old ninth grader, and Alecia Locke, a 13-year-old seventh grader, both in Boca Raton. Julianna helps to care for her 10-year-old brother who has cerebral palsy. “He can’t walk; he can’t control his muscles; he’s dead weight,” she said. Julianna’s parents have serious back problems, so it’s largely her job to lift and carry him.

Alecia, whose parents are divorced, spends weekends with her dad, whose mobility is seriously limited by multiple sclerosis. She does his laundry and dishes, cleans floors, assists with his scooter and fills the gas tank.

Dr. Siskowski knows much more help for young caregivers is needed now and in the years ahead. “With the increase in technology, more people are living longer and being cared for at home,” she said. “There are more multigenerational households, more women working and more gaps in the health care system that are being filled by children. We need to get these kids recognized as a vulnerable population at risk of dropping out of school.”

She added, “Society can benefit from investing in them. Children who graduate from high school have the potential of earning $10,000 more a year. And many of these kids want to get into health care, which needs all the help it can get.”

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A Mother’s Lesson: When Memory Fails, Delight in the Moment

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Credit Giselle Potter

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In 1988, the author’s mother wrote in The Times about her own mother’s dementia. <a href="http://timesmachine.nytimes.com/timesmachine/1988/01/31/399888.html?pageNumber=159">Read the full article in TimesMachine. </a>

In 1988, the author’s mother wrote in The Times about her own mother’s dementia. Read the full article in TimesMachine. Credit The New York Times

The first sign that the Alzheimer’s disease that ravaged my grandmother was back for her daughter was when Mom began having trouble saying “CNN.” She’d watched the cable news network for years with ferocious interest ever since returning from a life abroad in the Foreign Service to rural New Hampshire. There she nested in her mother’s house, saying she’d never move.

It was a distinctly peaceful life. I’d listen to her play the grand piano — the passion that had taken her to Juilliard decades earlier — and marvel at the lightness of her hands on the keys. On Sundays, she was the favorite lector at our church, reading the liturgy with an elegance instilled by her mother and grandmother, both trained elocutionists.

She also wrote and recorded essays on country living for NPR on subjects like “Mahler and Macaroni.” Words mattered a great deal to her. She mattered the world to me. I used to say I’d won the lottery when it came to mothers.

After Dad died, my mother continued to live alone in the big white house on the common. It was here in 1988 that she’d written a keenly observed Sunday commentary for this newspaper about her own mother’s battle with aging — and the dementia that “erased her life, line by line.”

She wanted me to promise that if her own light dimmed – or as she put it, “when I lose my mind too” – I wouldn’t upend my own life to care for her. But we never came up with a real plan.

About a year after CNN became “C…D…D…” and the home care team we’d improvised announced my mother’s decline was too much for them, my brothers and I barely convinced her to “visit” sunny California where my middle brother lived.

That visit became a new “post” in a fancy retirement community where, for $7,500 a month, she had her own studio and bathroom. She enjoyed music events and a stately dining room with a menu. There was even a church on the corner.

But like so many living with Alzheimer’s, Mom’s biorhythms were upside down. She’d often sleep during the day and be up all night doing what is known as “exit-seeking.”

Nights are the Achilles heel of most eldercare facilities staffed by the fewest caregivers — and the most inexperienced. Across the country, in many well-meaning Alzheimer’s units, memory care residents are treated with confinement.

So Mom “graduated” to the locked Memory Care unit for her “safety.” It broke my heart to watch her on tiptoes, peering through the locked door’s porthole across to the dining room she once enjoyed.

Alzheimer’s is not a mere matter of Swiss cheese memory and odd behaviors. It is a serious medical condition. It is terminal. It should be known for what it is: Brain Failure.

One morning, Mom emerged from her Memory Care room covered with bruises. The police came. The state came. There was even suggestion of a rape kit because my mother, clearly agitated, could say only, “the man, the man.”

We will never know what happened. But it stands to reason that if you lock up the most advanced Alzheimer’s residents with their attendant behavioral disorders, and apply nominal supervision, well, something is bound to happen. On the night in question, one newly hired caregiver attended 17 residents.

So we moved her again, this time to Seattle, close to my eldest brother and me, thereby violating the cardinal rule of Alzheimer’s care: thou shalt not move the patient. Change registers a full 10 on the Alzheimer’s Richter scale. The more Mom’s brain failed, the more I twirled to try to make things better.

Within a matter of weeks in the new place, she had fallen and broken her hip. Surgery followed, then three months in a rehab facility, and finally a move to a small adult family home with just six residents. She was exhausted and utterly disoriented. I was a wreck.

Still, I knew I was among the lucky ones. Despite the recent scan that showed her brain a mostly blank white slate, my mother somehow always managed to recognize me during our visits (although she’d begun calling me “Mom.”)

Where once I’d thought I’d lose my mind if she asked me the same question one more time, now I prayed to hear any full sentence just one more time. Ever the peripatetic family caregiver, I rarely stopped to inhabit my mother’s world: the one with no past, no future, just the present.

On our last Mother’s Day together, I took her to the big morning Mass at St. James Cathedral. As I attempted a Houdini maneuver getting her out of the car, up the curb and down the sidewalk to the church door, she somehow slithered from my grasp.

My mother sank to the ground in what seemed like slow motion. She never made a sound. She just lay there in the green grass in her rose-colored tweed suit, brilliant white hair glinting in the spring sun, blue eyes open wide, staring straight up into an unusually cloudless Seattle sky.

With church bells pealing through the cool morning air, my beautiful, brilliant mother stretched out her arms and made angels wings in the grass.

And all the doctors and all the medications and all the years of worry that couldn’t bring my mother back together again, also couldn’t defeat the magic of that moment.

I lay down next to her, threaded my fingers through hers, and for a brief wondrous moment, we held the present.

Mary Claude Foster is a journalist living in Seattle.

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Seeing the Cycle of Life in My Baby Daughter’s Eyes

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Credit Giselle Potter

Like many new fathers, I spend as much of my free time as I can get away with gazing into my baby daughter’s eyes as she stutters and scans. I remember a day not long ago when I rocked my daughter, Eva, in my arms, and her eyes stopped and steadied as they looked back into mine. Her arms and legs ceased to rock and her entire body just relaxed. A chill went down my spine.

I felt that for the first time, she had really seen me. She was about 3 months old at the time. Within moments, though, her eyes left mine and started whirring around in their sockets again. While this was the first time I had shared such a moment of joy coupled with disappointment with her, I had experienced this many times with patients at the end of life.

Many have alluded to the symmetry of the beginning and the end of life. Most people, however, become parents long before they become caregivers. For me the order was reversed. For while I only recently became a father, medical training has made me much better acquainted with those at the opposite end of the spectrum.

The agony of death is more than just physical – it is an existential wound that gnaws away until there is slow, and frequently unwilling, acceptance of the inevitability of one’s mortality. I sometimes see a similar pain in my baby girl’s eyes as she makes another arduous journey – learning how to be alive. Frequently, as she cries when she is hungry, or cries when she is overfed, or cries as she tries to have a bowel movement, or just cries, it seems as if she is yearning to go back to the simple comforts of her mother’s womb.

Changes in the medical system have brought the medicalization of the shallow slopes of our bell-curve-shaped lives. At the start of the century, most lives started and ended at home. However, while hospitals started to become the place where we took both our first breaths and our last in the 20th century, in recent years people have become eager to reverse both trends. Nutrition, too, has shifted from being completely natural, to being almost exclusively artificial formula for children and tube feeding and intravenous nutrition for the terminally ill, followed now by a realization that natural routes are best for both groups. What hasn’t changed, and what binds the pediatric and the geriatric, is the obsession with their bowel movements.

As medical science has progressed, while we have extended life, we have transformed death from a singular event, into dying, an entire phase of our lives that can last from days to years. This is mirrored by an extension of childhood as well, with children being more dependent for a longer period of time than ever before in human history. Parenting therefore has become more demanding – and more expensive.

Caregiving for those at the end of life, as those who live it will attest, is equally arduous yet is barely recognized at a similar scale. In some ways, caregiving is similar to parenting – women do most of the heavy lifting. In fact, two-thirds of all caregivers are female. Yet, caregiving for the dying is different from parenting because it does not yet have a formally recognized role within the care of the patient. While there is no chance Eva would ever see her pediatrician without her parents, elderly patients, some with levels of dependency equal to that of a 3-month-old, present to the hospital or clinic all by themselves, all the time. Furthermore, while there is much debate about paying workers through maternity or paternity leave, a similar discussion does not exist around whether leave granted to those caring for parents or loved ones at the end of life, particularly those getting home hospice services, should be paid.

Part of the problem is also how differently we view infancy and old age. A daily struggle my wife and I face is how to hold back from oversharing pictures and videos of Eva on social media. We document her life meticulously, afraid of letting any single gesture slip away. Yet, not only do we siphon off old people to live outside of our immediate circles, but images of what the end looks like are scant, uncelebrated and frequently morbid. There is a significant disparity of empathy toward children versus the elderly. Children’s shortcomings turn into viral YouTube videos, while those of the elderly are often derided and ridiculed by the very people charged with taking care of them.

In a more longitudinal sense, we care for our young the same way people have for thousands of years yet how we die has changed significantly over just the past few years and continues to be in flux. Advanced technology means that many people require much more assistance at home than before. Furthermore, while our lifespan has been extended dramatically, the years we spend with disability have also increased. Therefore, while we have had eons to define our roles as parents, the modern caregiver remains undefined and unrecognized, and thus, unsupported. Investing in children makes intuitive sense, but a similar case has not been built for taking care of the elderly.

As with raising a baby, the answer might come from the heart. What is really needed is for us to love the old as we do the new and celebrate the end as we do the beginning.

Haider Javed Warraich, M.D., a fellow in cardiology at Duke University Medical Center, is the author of the book “Modern Death – How Medicine Changed the End of Life,” coming in February 2017.

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