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203 Days: Sarah’s Long Good-Bye

Notes on documenting the bittersweet story of a daughter and her dying mom.

by Bailey Barash

Saturday, March 31, 2007

The first time I met Sarah Neider, a widow of 89, was in November of 2005. I was a volunteer for Weinstein Hospice in Atlanta, Georgia, and Sarah was my new
patient. We’d made a lunch date and I was picking her up at her daughter Kaye Green’s house, where she lived with Kaye and her family.

Sarah was elegantly dressed, flawlessly made up and coiffed with a flamboyant yet tasteful red wig. The clear plastic oxygen hose draped over her ears spread across her cheeks as she smiled and reached for my hand, flashing her glossy red fingernails.

She was an imposing figure, and would never consider appearing in public unless she was immaculately groomed. When we introduced ourselves on the phone a few days before, Sarah had asked for a meal “out” but had left the choice to me. Eating out was one of her favorite activities. I chose a Chinese buffet located halfway between her house and mine.

It was rare in my four years as a hospice volunteer that I had taken a patient out of his or her home. They were usually too sick or weak to be moved, except to go just outside for some fresh air, and only if I could get help moving them from bed to wheelchair and back again. But on that first visit Sarah was still able to use a walker to get from the house to the car.

Weinstein Hospice: A Good Match
Initially given less than six months to live by her cardiologist and vascular
physician, Sarah and Kaye had consulted with our hospice and found their needs and hospice services were a good match. Sarah said, in a voice scratchy from the drying flow of pure oxygen, “I’m very satisfied with my life. I’ve had a wonderful marriage, a wonderful love, and now I’m just ready to go. I’m hoping I go to bed and God will let me leave, quietly with no pain.”

As Kaye described it, Sarah was far from pain-free before our hospice got involved.

“At that time, Mother was in a lot of pain, extreme pain 24/7. And it was more than she could bear, and to have to watch her was a nightmare. So I said do it, just do it. We’ve got to get somebody to help us.”

The Weinstein Hospice nurse and social worker came over and met with Sarah and Kaye. In addition to relief from pain, Sarah wanted oxygen. She was constantly out of breath because her heart wasn’t pumping efficiently any more. This was easily done.“

Two hours after that we had the morphine in the house, we had the oxygen in the house, everything was moving. I couldn’t even believe it. It was wonderful,” Kaye said.

Whatever Happens, Don’t Call 911
Just before we left for our Chinese lunch, Kaye put a copy of Sarah’s Advance Directive in my hand and reminded me that if anything happened, not to call 911, but to call her and Weinstein Hospice. Both Sarah and Kaye wanted to make sure that under no circumstances were extraordinary measures taken to keep Sarah alive; there would be no resuscitation, no rush to the emergency room if Sarah fainted or stopped breathing.

Talya Bloom, Director of the Vi and Milton Weinstein Hospice, said, “We discourage people who want to still pursue 911 and certainly people who are still pursuing treatment because hospice is really about care and not cure. Once you’ve made the decision to come into hospice there has to be some parallel in the family’s philosophy and the philosophy of hospice.”

I was a little more nervous about meeting with Sarah and Kaye because, as a professional documentary filmmaker and journalist, I was hoping they would consent to let me videotape my subsequent visits and produce a documentary about their experience.

It had been one of my goals since 1995 to produce a documentary about end-of life decision-making and hospice care, and Weinstein Hospice was interested in having such a production to use in their community education programs.
In 1995, my father was under hospice care for metastasized colon cancer, and my mother was chronically ill, as she had been for much of her adult life, with asthma and emphysema.

Like many adult daughters of elderly parents, I was responsible for their care. My two brothers lived in other states; I lived only three miles from my parents’ home.

My High-Pressure Job
At the time I was Executive Producer of Science News at CNN and trying to keep my long hours down so I could spend some time with my husband and son, a high school senior.

I usually thrived on my high-pressure job and the adrenaline rush of producing breaking news, even though my husband and son were relentless in reminding me of how little they saw of me.

Now, in addition, I had to hire caregivers to be with my parents 24 hours a day and oversee their care at home. Because of their frail mental and physical states, I had gone through the painful process of becoming their legal and medical guardian, but I consulted with them as much as possible before making decisions about their care.

A turning point came when my mother broke her hip and both my parents became too sick to be cared for at home. I moved them to a nursing
home and continued hospice care for my father there.

My experience paralleled that of many adult children who vow to keep their parents in their homes and care for them in familiar surroundings, only to have the situation go downhill. A series of what Kathryn Braun, DrPH (Doctor of Public Health), Professor of Public Health and Social Work at the University of Hawai’i calls “critical incidents” can trigger major life-changing decisions about placement and care.

“Usually what happens in all elder care is that it just becomes more and more difficult,” said Braun.

“Some of the critical incidents with aging include the inability to walk or get around and the inability to toilet oneself.”

A fall can signal the beginning of immobility. Even when a person is mobile, dementia can destroy the delicate balance needed for care giving to continue in the home.

“It happens earlier in the case with someone with dementia,” said Braun. “The caregiver may not get any sleep and the patient is ambulatory and continent. If the caregiver is not able to get enough sleep, that’s where the caregiver is going to fall apart.”

My parents died within three months of moving to the nursing home, just two weeks apart in 1995.

Facing Down Aging
I knew there were hundreds of thousands of other middle-aged professionals
like myself who would soon face not only the prospect of their own aging, but the challenges of making medical, financial and lifechanging decisions on behalf of
their disabled, elderly, chronically ill parents. For many of my peers, those decisions would have to be made in the midst of a crisis, because very few people are willing to consider the problems of caring for elderly parents until they are forced to do so.

I wanted to make a documentary that showed my peers, clearly and
honestly, what they could expect. Hopefully, witnessing one family’s end-of-life experiences would reduce the fear so many people have of talking with their siblings and parents about their parents’ wishes for care before they are faced with a medical crisis or a terminal diagnosis.

“People really do not address the fact that there is a lot of preparation that can be made before you die that will make it much easier not only on you but on your loved ones,” said Talya Bloom.

Now Sarah Neider and Kaye Green were giving me the chance to tell their story. They wanted to help others better understand what they might experience at the end of life. They also wanted Sarah’s children, grandchildren and great grandchildren to know what a rich, fruitful life Sarah had led and how she had faced her final days.

Kaye Green, who has two brothers who live in other cities and felt it was impossible to have their mother live with them, fit the caregiver profile: a female adult child of a chronically ill parent, initially in good health, usually sleep-deprived and exhausted, who helped her loved one with every aspect of activities of daily life including shopping, cooking, toileting, mobility, dressing, personal care and dispensing medication.

A recent study at Johns Hopkins University showed the personal caregiver at the end-of-life spends more than 43 hours a week helping their loved one and rarely asks for community-based help.

“Women especially are reluctant to ask for help,” said Kathryn Braun. “It’s critical to have community support, but sometimes women feel this is their duty to do this and sometimes those expectations are enforced by other family members saying, ‘No this is women’s work. You should do it.’”

I brought my Sony digital camera to my second visit with Sarah at Kaye’s home. Already Sarah had given up the walker and was mobile only with the use of a wheelchair. I waited in the living room until Sarah, again with complete makeup and an attractive outfit, was wheeled in.

Over subsequent visits my camera captured Kaye cooking and cleaning, encouraging with compliments the certified nursing assistant (CNA) they had hired to help, and reassuring Sarah with light-hearted conversation.

Sarah had her good days and bad days. Her appearance unraveled as
Kaye and the CNA concentrated on keeping Sarah clean, fed and medicated.

The heavy pain medications made Sarah nod in and out of sleep. She still enjoyed her meals, so Kaye continued to cook her favorite foods, including matzo ball soup.

The months went by, and Sarah became more helpless and less coherent. Kaye injured her back and could no longer care for Sarah at home, so Weinstein Hospice found a bed for Sarah at the William Breman Jewish Home, where pain and symptom management continued under hospice supervision.

Surviving Hospice
Like many hospice patients with non-cancer diagnoses, Sarah lived beyond six months. There is a segment of hospice patients (over 100,000 a year, according to the Centers for Disease Control and Prevention) now called “hospice survivors,” who not only live longer than six months, but improve so much they are no longer eligible for hospice care.

They may still have an incurable condition, but can be treated under palliative care in which their symptoms and pain are managed with medication and they can live somewhat independently. Medicare does not routinely cover these costs.

In cases like Sarah’s, in which the patient continues to decline, Medicare
and most health insurance policies will continue to pay for hospice services that go on longer than six months.

Sarah was dressed and sat in her wheelchair for meals and family visits,
although she said very little. The once glowing matriarch was pale
and losing weight. Sarah eventually became too weak to leave the bed. She cried often but did not seem to be in pain, and ate and drank only very small amounts.

In June 2006, the camera framed a stark, almost unwatchable shot of Sarah, covered in starched white sheets up to her neck, wigless, with very little hair, eyes open, staring at the lens.

It was my decision to use that shot in the finished documentary, even though it was stark. Talya Bloom at Weinstein Hospice supported my approach, to give the viewer a respectful but honest impression of the end-of-life experience. Kathryn Braun agreed that this type of depiction is rare but necessary.

The Reality of Dying
“Why watch a video like that?” she asked. “Because people don’t understand. It’s a messy, icky, angst-producing process to watch, and [it] gets you to know you are not in control of everything. People don’t like it but need to see the reality of it,” she said.

Exactly 203 days after my first taping session with Sarah and Kaye, I recorded their last goodbye as Kaye lifted the cover from Sarah’s body and gave her a final kiss. Sarah had developed a fever and labored breathing before dying on July 3, 2006.

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