A Dress Rehearsal for Death

We had started down the path of honoring our mother’s wish to have a good death until a hospice nurse figured out that she wasn’t really dying.

Monona Yin, right, with her mother, Fay Hoh Yin, and brother, Duncan Yin.

By Monona A. Yin

Three years ago, my family and I had the experience of going through a full “dress rehearsal” for my mother’s demise. At 83, she had become alarmingly weak from stage IV lymphoma and atrial fibrillation, and asked me and my brother to come home to Delaware for her next oncologist visit.

Mom had already undergone chemotherapy and cardioversion, so we knew there were few treatment options left. Still, we were utterly unprepared when the doctor said, “She probably has less than six months,” and recommended that she begin hospice care.

Widowed at just 37 with two small children, Mom has trained herself to face challenges without flinching. She is that rare Chinese elder who isn’t superstitious about mentioning or planning for her own death.

True to form, when we got home from the oncologist’s office, Mom sat us both down at the kitchen table to discuss her end-of-life wishes. She had witnessed two horrible lingering deaths up close — her mother’s and a longtime friend’s. What she feared most was pointless suffering and the loss of control over her own life. She wanted us to understand that, if she had little hope of recovery, she’d rather go quickly than fall apart slowly and painfully.

My brother, at the other extreme, wanted Mom to pursue every medical option, no matter how long the odds. He believed that doctors were fallible, there was always another treatment out there, and life was worth clinging to. And he couldn’t bear the thought of living without her.

Then there was me, torn between them. I had spent hours listening to Mom’s fears and understood them. A decade earlier, my mother-in-law had died with a feeding tube in her side while her oncologist suggested more surgery — after six months of wasting away from metastatic cancer. It would have been infinitely kinder to allow her to die peacefully in her own bed.

We had given my paternal grandmother just such a “good death.” We sat by her bed and told family stories as she slipped into unconsciousness. We turned away from the outside world and drew close to one another. All was quiet and time seemed to stop. Finally, we held her as she took her last breaths, letting her know how much we loved her but also letting her go. I remember that week as a thing of rare beauty. It taught me that dying well can be a balm and a blessing to all involved.

Recognizing the enormous gulf between those two scenarios, I supported Mom’s right to die on her own terms. Like my brother, I desperately wanted more time with my mother. Despite her failing body, Mom’s mind remained sharp. In recent years, our occasional mother-daughter tensions had subsided, leaving a much warmer and less complicated companionship.

After an emotional week of debate, we all agreed to bring Mom to New York for a second — and final — opinion from the world-class doctors at Memorial Sloan Kettering. If they too determined that nothing more could be done, we would accept the inevitable.

At Sloan Kettering, Mom went through the scans without incident but afterward her blood pressure dropped dangerously low and she was admitted as an inpatient.

By the next night, Mom could hardly breathe at all. It was agonizing to watch her gasping for air. She was terrified of suffocating and on the verge of panic. Finally, she pulled me close to say, “Tell them to stop everything.”

I had promised to honor her wishes, so I found a doctor and activated her D.N.R. In a few minutes, my husband, Steve, and our 14-year-old daughter, Maya, arrived and Mom couldn’t hold back her sobs. “I’m so sorry I won’t see you grow up! I’m sorry I won’t see you graduate or get married!”

We had all been coming to terms with Mom’s mortality for months but the shock and pain were still overwhelming.

Then something that seemed miraculous happened. A hospice nurse, Tracy Kahn, arrived and went in to check on Mom. She came back to tell us that she didn’t think Mom was going to die that night, the next night, or maybe for weeks.

Based on years of observing hospice patients, Tracy did not believe Mom was dying of cancer right then.

Instead, without our realizing it, her heart had been severely weakened by the cardioversion, which required high doses of a toxic drug. Almost two liters of fluid had accumulated in the lining of her right lung.

We immediately reversed the D.N.R. but it would be another 10 days before Mom grew strong enough to have the fluid drained. Over the next month, the hospital’s lymphoma, cardiology and pulmonary teams worked together to bring Mom back from the brink. They administered steroids, gave her blood transfusions, stabilized her immune system, optimized her diuretic and treated her infections.

Mom transferred to a rehabilitation center for another month, then came to live with me in Brooklyn. With our newfound sense of “now or never,” Mom and I fulfilled one of her longtime dreams. We edited and self-published her memoirs, which she’d been writing for years, and she’s enjoyed positive reviews from friends and strangers alike.

Today, Mom still wrestles with neuropathy, shortness of breath, and sometimes crushing fatigue — but she is very much alive. Even more amazing, she has been living on her own for the past two years.

We’ve had time to reflect upon our decisions, how we influenced one another, and what we’d do differently. My central insight is that it took all three of us to steer clear of the twin shoals of dying too soon and dying too late. We made better decisions because we listened to one another and weighed all the conflicting information. In hindsight, my mother acknowledges that she wanted to “pull the plug” too soon because she became overwhelmed by fear.

No one thinks clearly in the grip of panic. That’s why it’s so important to start talking long before the end. Not merely about what constitutes a good death but, more important, what makes even a diminished life worth living. As Atul Gawande writes in “Being Mortal,” “Our ultimate goal, after all, is not a good death but a good life to the very end.”

The end-of-life conversation is equally important to both sides — the dying person and the survivors. One of my mother’s greatest comforts is knowing that her children understand her wishes and will honor them. We proved that during the dress rehearsal.

Only recently have Mom and I realized how much it cost me to be her health care proxy, rather than a grieving daughter who wanted to do anything to save her mother. I’m still going to be torn between those two roles “the next time” but simply being aware of that inner conflict helps mitigate it. And Mom’s future decisions will be informed by all the joy she would have missed had she died that night in late 2015.

Complete Article HERE!

Death doula says opioid epidemic means more end-of-life services needed in the Downtown Eastside

Amanda Page Brown completed her training to become an end-of-life doula last November and now is trying to secure funding to work full time as a death doula in the area of Vancouver hit hardest by Canada’s overdose crisis

The stretch of East Hastings Street that runs through Vancouver’s Downtown Eastside sees emergency authorities respond to thousands of overdose calls every year.

by Travis Lupick

Last fall, Amanda Page Brown visited a friend in the hospital.

“As I was leaving, I saw their roommate laying in bed, skin and bones, and very little life in him,” she told the Straight. In a telephone interview, Brown explained that she recognized the man through her job as a support worker in Vancouver’s Downtown Eastside.

“He was completely alone and no one knew he was there, dying,” she continued. “I asked him if it would be okay if I visited again. He said yes.”

Brown sat with the man once more before he passed away a few days later. “I realized I was the only person who knew,” she said. “I was it.”

The experience affected Brown deeply. “He taught me much over those three final days,” she said. “He taught me the path I’m meant to walk.”

Brown learned that she wanted to help people in the Downtown Eastside make the transition from life to death. Especially those residents who might not have anyone else to be with them during that time. She began researching how she might be able to do that, and found a certificate course at Douglas College.

“End-of-Life Doulas are advocates for their clients and complement the work of the medical community and hospice-palliative care workers and volunteers,” the program’s website reads. “End-of-Life Doulas assist clients in creating and carrying out their health-care treatment decisions, as well as providing support to clients and their family and friends.”

Brown completed her training to become an end-of-life doula (also known as a death doula) last November. Now she’s trying to secure funding to work full time as a death doula in Vancouver’s Downtown Eastside.

Brown said that her plan is to collect support via her Facebook page and an accompanying fundraiser, but hopefully not for more than one year. Then, with a little experience under her belt (plus the previous seven years she’s spent employed in the Downtown Eastside), she’s hoping she can secure a staff position or reliable and sustainable funding from one or several of the many government agencies, private organizations, and nonprofits that operate in the neighbourhood.

“As a doula, you can walk in as a trusted friend. That’s what is needed here,” Brown said. “I want to be able to offer things like bedside vigils. If somebody is going to be taken off of life…and if that person doesn’t want to die alone, then somebody should be sitting with them.”

There are typical scenarios where it’s easy to understand why a death doula might be needed. For example, an elderly Downtown Eastside hotel tenant with an alcohol problem who doesn’t have any family. But Brown described other situations where it might be less obvious how someone could benefit from the presence of a death doula.

“I’ve asked drug users who have had quite a few overdoses, ‘Has anybody ever asked you if you are trying to kill yourself?'” she recounted. Brown said that with folks in that type of situation, she could befriend them and, once a bond is established, offer to help them draft an advance-care plan.

“Hey, I hear that your overdosing a lot,” Brown explained she could say to them. “Does anybody know your wishes in case something does happen to you?…Because we can do this on a legal piece of paper. Why don’t we do this?”

Brown added that these types of conversations can have unintended benefits.

“That might actually open up another conversation about maybe treatment or detox,” she said. “Maybe, maybe not. But it might be another way to open another very important conversation down here.”

There were 367 illicit-drug overdose deaths in Vancouver last year, up from 235 in 2016 and 138 the year before that. For every fatal overdose that occurs in the city, there are many more that are reversed.

Coco Culbertson is a senior programs manager with PHS Community Services Society (PHS), a nonprofit that manages more than a dozen supportive-housing buildings in Vancouver. She also happens to have the same end-of-life doula certificate that Brown has.

Amanda Page Brown is employed as a support worker and wants to become a full-time death doula in Vancouver’s Downtown Eastside.

“There are volunteer networks that provide this service for free, but maybe not necessarily for the population that we support,” Culbertson told the Straight. “There are so many people in the Downtown Eastside who are living with a chronic illness and comorbidity and who become palliative or require some level of hospice. And there are very limited resources for those folks.

“Having someone who has the expertise and the empathy—professionalized empathy—to sit with them as they live out the last few days, weeks, or months of their life, would be an incredibly meaningful thing,” she said.

Culbertson noted that PHS staff often spend time with tenants who have been transferred to a hospital and are nearing the end of their life. But everyone is spread thin, especially since the dangerous synthetic-opioid fentanyl arrived and overdoses skyrocketed, she added.

“Someone who is able to provide more support for people who don’t have a family…that would be an incredibly important thing,” Culbertson said. ” I think it is just as important to offer dignity and humanity in death as it is in life.”

Complete Article HERE!

More to dying than meets the eye

Those who work with dying people are familiar with patients seeing long deceased loved ones, angelic beings, even hearing music and comforting voices as the patient nears death. Deathbed phenomena have been documented in the days, weeks, and months before death since the 1500s. Often confused with hallucinations, deathbed phenomena can bring comfort to patients and caregivers if those involved know what they are experiencing. This talk will explain deathbed phenomena and present on-going research about the topic. Accounts from the dying and bedside witnesses will be shared.

Author’s new book looks at dying at home

‘It’s my passion to demystify hospice’ — Karen J. Clayton

 

by

With more Americans living longer and aging in place, more also want to die at home.

Few, however, actually do.

Karen Clayton of Oak Harbor believes more terminally-ill individuals and their caregivers might choose home end-of-life care if they knew more about the physical and emotional support provided by hospice services.

“It’s my passion to demystify hospice so patients and families will use this truly extraordinary care,” she said. “I believe most people think hospice is a really good thing—for someone else. They do not realize they can have six months of quality end-of-life care wherever they live.”

Clayton’s just-released book, Demystifying Hospice: Inside the Stories of Patients and Caregivers, is based on years of experience working as a social worker in public and private hospitals, a hospice, and with the American Cancer Society. She plans to discuss her book and the topic of hospice care at a series of presentations and workshops around Whidbey Island this fall.

Clayton describes herself as a hospice social worker, sociologist, author and a story catcher.

Studies have shown that approximately 80% of Americans would prefer to die at home, if possible. Despite this, 60% of Americans die in acute care hospitals, 20% in nursing homes and only 20% at home.

According to the National Hospice Foundation, many people at the end-of-life are being referred to hospice care too late or not at all.

Many Americans don’t realize hospice care is a benefit of Medicare, Medicaid, VA benefits, and many other insurance plans, Clayton said. Additionally, hospice organizations can help those with no insurance.

“Hospice offers at least six months of care for terminally ill patients and their caregivers,” she added. “So, it’s stunning that, in 2015, half of the U. S. hospice patients had this truly extraordinary care for 17.4 days or less and one-third for seven days or less.”

Home hospice services consist of a team of professionals who regularly visit patients at home and are available 24 hours a day. Nurses, social workers, chaplains and nurse aides comprise the main team and some services also provide massage therapists, even instrumentalists, such as harpists, to play soothing music.

Hospice services also supplies medication and delivers equipment, such as hospital beds, wheelchairs and personal hygiene items.

Clayton’s book doesn’t focus on medical problems but rather the emotional and practical help given by socials workers to patients, caregivers and families.

“The caregiver receives training and support from the team, and it is difficult,” Clayton said. “It helps to have someone to talk with about the types of feelings involved; fear, grief, anger, curiosity about how to help in the best way.”

She also provides caregiving tips and suggests ways to connect with people in their final days.

“It’s good when families spend time with photo albums, old family films, games, movies, playing checkers or chess, remembering the good times in their lives, the things they have contributed through their job or service,” Clayton said. “Quality of life can be maintained when patients are offered activities, food, family interactions within the limits they have.”

Clayton’s book describes the hope, healing and support that home hospice care offers.

Each story addresses some aspect of helping families through the caregiving and grieving process and it offers comfort and understanding to readers who may be going through similar experiences.

“These stories will lift your spirits and touch your heart,” Clayton said. “It’s a joyful thing to learn how to provide good physical and emotional care for the person you love.”

Karen Clayton will discuss hospice care and her book at the following free events open to the public:

Three Journeys: Writing, Caregiving, Publishing; 3 p.m., Thursday, Oct. 18, Friends of the Library, Oak Harbor Library

“Demystifying Hospice” workshop: 1:30 p.m. Monday, Oct. 22, Coupeville Library

“Demystifying Hospice” workshop: 2 p.m. Wednesday, Dec. 5, , Freeland Library

“Demystifying Hospice” workshop: 10 a.m., Saturday, Dec. 8, Langley Library

• More information  HERE!

Complete Article HERE!

Spotting Elder Abuse: Tips for Long-Distance Caregivers

From a distance, it can be hard to assess the quality of your family member’s caregivers. Ideally, if there is a primary caregiver on the scene, he or she can keep tabs on how things are going.

Perhaps you have already identified friends or neighbors who can stop in unannounced to be your eyes and ears. Sometimes, a geriatric care manager can help.

You can stay in touch with your family member by phone and take note of any comments or mood changes that might indicate neglect or mistreatment. These can happen in any setting, at any socioeconomic level. Abuse can take many forms, including domestic violence, emotional abuse, financial abuse, theft, and neglect.

Sometimes the abuser is a hired caregiver, but he or she can also be someone familiar. Stress can take a toll when adult children are caring for aging parents, or when an older person is caring for an aging spouse or sibling. In some families, abuse continues a long-standing family pattern. In others, the older adult’s need for constant care can cause a caregiver to lash out verbally or physically. In some cases, especially in the middle to late stages of Alzheimer’s disease, the older adult may become difficult to manage and physically aggressive, causing harm to the caregiver. This might cause a caregiver to respond angrily.

But no matter who is the abuser or what is the cause, abuse and neglect are never acceptable responses. If you feel that your family member is in physical danger, contact the authorities right away. If you suspect abuse, but do not feel there is an immediate risk, talk to someone who can act on your behalf: your parent’s doctor, for instance, or your contact at a home health agency. Suspected abuse must be reported to adult protective services.

Learn more about the signs of elder abuse and how to get help.

Read about this topic in Spanish. Lea sobre este tema en español.

For More Information About Elder Abuse

Eldercare Locator
1-800-677-1116 (toll-free)
https://eldercare.acl.gov

National Committee for the Prevention of Elder Abuse
info@preventelderabuse.org
www.preventelderabuse.org

National Center on Elder Abuse
1-855-500-3537 (toll-free)
ncea-info@aoa.hhs.gov
https://ncea.acl.gov

Complete Article HERE!

When your child is 59 ‘going on 70’:

Couple talks joys of raising son with Down syndrome, challenges of early aging

Tom and Rosemary Ryan talk candidly about raising their son, Kevin, who has Down syndrome, Oct. 1, 2018, at Smith Crossing in Orland Park.

By Donna Vickroy

Tom and Rosemary Ryan’s story parallels the story of Down syndrome these past 59 years.

Not only has the Orland Park couple lived the joy, challenge and learning curve that accompanies raising a child with special needs, they’ve dedicated their lives to pioneering change in governmental support, educational opportunities and societal views.

“A lot has changed over the years,” Rosemary said. “We’ve come a long, long way.”

Like many parents of special needs children, love thrust them into the world of advocacy. When there was no preschool for their son, Rosemary started one. When the concept of housing adults with Down syndrome in group homes instead of institutions was proposed, they jumped on board — landing smack in the center of a national debate and garnering the attention of ABC-TV’s “Nightline” with Ted Koppel.

And, now, as their oldest son endures perhaps the cruelest of characteristics often associated with his condition — accelerated aging — the Ryans are again at the forefront of the discussion.

Kevin Ryan is 59 but a checkup last spring revealed “he’s more like going on 70,” Rosemary said. “He’s gonna pass us up.”

Raising a child with Down syndrome is “perpetual parenthood,” Rosemary said, “if you are committed to wanting the best for them.”

Now in their 80s, the Ryans, who live at Smith Crossing retirement community, are simultaneously discussing end-of-life care for themselves and for their son.

Into the light

Tom Ryan holds a photo collage featuring his son Kevin, who has down syndrome, Oct. 1, 2018, at Smith Crossing in Orland Park.

When Kevin Ryan was born Aug. 4, 1959, Tom and Rosemary felt the way many parents of newborns with special needs felt back then — alone. The support and advice that today are showered upon parents of babies born with Down syndrome was nonexistent then, Rosemary said.

Three pediatricians examined Kevin and agreed he had the condition characterized by an extra chromosome.

“They called it ‘Mongolism’ back then,” she said.

In those days, there were no prenatal tests to predict it, nor any way to prepare for it, she said.

“We didn’t expect an anomaly with our first baby, but it was meant to be,” Rosemary said.

The “new” thinking at the time was that the couple should take their newborn home, she said.

And that’s where the advice ended. Rosemary could find only one very dated guidebook at the library that she said was so negative, “I couldn’t get past page three.”

So she relied on her instincts and on training she’d received en route to becoming a pediatric nurse to get through the early years, she said.

“And we just kind of forged ahead,” she said.

The Ryans went on to have three more children, with their second son quickly passing his older brother developmentally. Rosemary gave up her nursing career to stay home and care for the children.

Testing had revealed that Kevin was on the border of EMH (educable mentally handicapped) and TMH (trainable mentally handicapped), she said.

Those terms have fallen from the lexicon, along with “Mongolism,” but what Kevin’s score meant, Rosemary said, was that he’d struggle in an academic program, but likely excel in a training setting. They chose the latter.

“Back in 1962,” she said, “public schools had EMH but no TMH.”

The Ryans were living in Jacksonville, Ill., then and Rosemary and another mom decided to start a school in a nearby church. They set up an advisory board with a host of professionals and townspeople, and hired two teachers.

Kevin attended for a year and a half, until Tom, who had given up teaching high school to work at State Farm Insurance, was transferred to the south suburbs.

Changing laws, changing attitudes

om and Rosemary Ryan look through family photos Oct. 1, 2018, at Smith Crossing in Orland Park.

While Rosemary had been organizing a school in central Illinois, other parents were doing the same in Chicago Heights. In 1965, after the Ryans moved to Park Forest, Kevin began at privately run Happy Day School.

Ten years later, Public Law 94-142 mandated public school be available to all kids ages 3 to 21 (later extended to age 22), and Kevin transferred to SPEED Development Center in Park Forest.

SPEED, Tom said, “was the creme de la creme” and Kevin continued there until he turned 21 and returned to Happy Day for adult workshop.

The end of public school life often is a time of great concern and confusion for parents of children with special needs, Tom said, particularly if they haven’t planned ahead.

“Some people choose to have their adult kids just stay home,” Tom said, but that can lead to problems if the parents’ health begins to fail.

Kevin continued attending workshop at Happy Day and living with his parents until 1995.

NADS

At age 59, Kevin Ryan, who has Down syndrome, is dealing with the health issues of a 70-year-old, his parents say.

Down syndrome is the most commonly occurring genetic condition, said Linda Smarto, director of programs and advocacy at the National Association for Down Syndrome in Chicago.

Approximately 6,000 babies with the condition are born each year in the United States, Smarto said. That translates to 1 of every 730 live births, a number that seems to be on the rise, she said.

“When my daughter was born 24 years ago, the number was 1 in 1,200,” she said.

“Eighty-five percent of (these) children are born to moms 35 years old and younger,” she said. “So it’s a great myth that (Down syndrome) only occurs to parents who are older.”

While individuals with the condition develop more slowly at the beginning of life, the end of life seems to rush at them. Not everyone with Down syndrome is afflicted with premature aging, Smarto said, but there does seem to be a precursor to that and Alzheimer’s disease.

“Down syndrome, (researchers) say, will find the cause for Alzheimer’s because (scientists are) really pushing to find some sort of a cure and learn why this is happening,” Smarto said.

The phenomenon can be heartbreaking for loved ones already wrestling with end-of-life care decisions. What to do with aging children who have Down syndrome is a huge concern, Smarto said, especially if the individual has medical issues.

But, she added, it’s the same concern for anyone with a disability. And it’s the same for elderly adults who don’t have a living child to help care for them, she said.

If a sibling or other family member isn’t available to assist, an individual may be placed in a state-run home. “Our goal is to have our individuals either live independently or with a family member,” she said.

Smarto said most of NADS referrals come from the south suburbs.

“We don’t really know why the occurrence of Down syndrome is a little more prevalent there. (Advocate) Christ delivers about 4,000 babies a year and we get a lot of referrals from there. But it’s also a higher level hospital that sees patients who need special care. And they have a special care nursery,” Smarto said.

“But it is interesting the statistics (when compared) to (Northwestern Medicine’s) Prentice (Women’s Hospital in Chicago), which delivers 10,000 babies a year and the commonality is not as much,” she said.

Smarto said much of the evolution of Down syndrome inclusion is owed to parents like the Ryans, moms and dads who’ve helped usher in change by volunteering, serving on boards and doing the work. Many of the improvements in the special needs community, she said, is credited to parental advocacy.

15 minutes

In the early 1990s, a group out of Galesburg came to Happy Day, now called New Star Services, and told parents they were going to start building group homes in neighborhoods, Tom recalled.

It was a new concept sweeping the country, he said, and they had found a lot on Broadway in Chicago Heights.

The Ryans were among several parents who signed on. At the time, Kevin was 31 and eager to get out on his own, Rosemary said, because his younger siblings had flown the coop.

But the city of Chicago Heights fought the idea and became “the test case for the nation,” she said.

“Chicago Heights took on the federal government,” she said. “Who do you think won?”

The battle introduced many to the acronym NIMBY (Not in My Backyard) and made national headlines. A photographer from U.S. News and World Report visited the Ryan’s home and a picture of Kevin ended up on “Nightline,” Rosemary said.

The city lost and had to pay the agency and the prospective residents, she said.

“Kevin got his check for $1,000 and we took him to Hawaii,” Rosemary said.

Early aging

Rosemary Ryan recommends the book “The Guide to Good Health For Teens and Adults with Down Syndrome” by Dr. Brian Chicoine.

In 1992, the Adult Down Syndrome Clinic opened in Park Ridge. Run by NADS, the facility introduced the Ryans to Dr. Brian Chicoine, and what Rosemary calls “a world of support.”

Rosemary calls Chicoine’s book, “The Guide to Good Health for Teens & Adults With Down Syndrome,” the “Dr. Spock for parents of kids with Downs.”

Kevin continues to see Chicoine — these days for premature aging symptoms. His hearing is declining, he’s having trouble with his teeth, he walks with a cane, Rosemary said.

In 2012, fearing their son might encounter early aging issues down the line, the Ryans moved Kevin out of the group home and into Good Shepherd Manor in Momence.

“We got to thinking, if he was left in a group home environment and his physical or mental health declined, their only option is to put him in a (Medicaid) nursing home,” Rosemary said. “We didn’t want that.”

Good Shepherd Manor, Tom said, is the closest thing to a forever home. It serves 125 adults, many of them aged.

“They’re committed to lifetime care, no matter what happens,” Rosemary said. “If he gets dementia, if hospice is needed, they’ll take care of it.”

Now, Rosemary said, Kevin’s lifestyle mimics that of his parents. “We have every level of care we’re ever gonna need here (at Smith Crossing), and so does he there,” she said.

The Ryans’ other children are scattered from Maine to Hawaii, with Kevin’s closest sibling living 1,000 miles away, so, Rosemary said, “If Kevin outlives us, we’d like him to stay at Good Shepherd because that’s what he’s familiar with.”

Raising Kevin has always been about choosing the best path for him, Rosemary said.

Special needs can mean special, or additional, considerations, she said, but the condition can also bring a special kind of joy.

Their son has had many positive life experiences, including participating in Special Olympics, attending Prairie State College, serving as a church usher and holding several jobs in the community.

“He’s truly been a joy,” Rosemary said. “But it is hard watching him age. You almost forget you’re a senior citizen because you’re taking care of a senior citizen.”

Kevin, she said, “is still funny. He’s still a character. He still steals the limelight at family get-togethers.”

And, Tom said, a quiet day is when Kevin calls only two or three times on his cell phone.

“In a way,” Tom said, “he is sort of the person who ties our family together.”

Although Dr. John Langdon Down first identified the condition marked by an extra chromosome in 1866, it wasn’t until the 1970s that “Mongolism” was renamed Down syndrome.

“Some people,” Rosemary said, “like to call it ‘up syndrome,’ because the people who have it are more up than down.”

Complete Article HERE!

In Life’s Last Moments, Open a Window

My hospice patients were dying, but they still longed for fresh air and birdsong.

By Rachel Clarke

A furrowed brow and flailing arms were all we had to go on. The grimacing, the way the patient flung his head from side to side — all of it signified an unvoiced anguish. We tried talking, listening, morphine. His agitation only grew.

All cancers have the power to ravage a body, but each assails in distinctive ways. One of the particular cruelties of a cancer of the tongue is its capacity to deprive a person of speech.

Some of us thought he must be suffering from terminal agitation, a state of heightened anxiety that sometimes develops as the end of life draws near. But the junior doctor on the team, Nicholas, was convinced that we could unlock the source of our patient’s distress and volunteered to stay behind in the room.

Nicholas reappeared about an hour later. “You can understand his speech,” he announced. “You just have to really listen.”

When I re-entered the room, the reclining chair that the patient — a tall, angular man in his 80s — had been thrashing around in had been turned to face out onto the garden and the double doors were open wide. Now he sat calmly, transfixed by the trees and sky. All he had wanted was that view.

For a decade, I have worked as a doctor in Britain’s National Health Service. We are an overstretched, underfunded health service in which too few doctors and nurses labor with too few resources, struggling to deliver good care. Burnout among staff is endemic, so much so that it threatens to stifle the kindness and compassion that should be the bedrock of medicine.

But then there are the moments when helping someone is easy: Just nature is enough.

Before I specialized in palliative care, I thought the sheer vitality of nature might be an affront to patients so close to the end of life — a kind of impudent abundance. And yet, in the hospice where I work, I am often struck by the intense solace some patients find in the natural world.

I met Diane Finch, a patient, in May, on the day her oncologist broke the devastating news that further palliative chemotherapy was no longer an option. She was 51. From that point on, her terminal breast cancer would run its natural course, medicine powerless to arrest it.

“My first thought, my urge, was to get up and find an open space,” she told me on that first meeting. “I needed to breathe fresh air, to hear natural noises away from the hospital and its treatment rooms.”

At first she fought to preserve herself digitally, documenting every thought and feeling on her computer before they, and she, were lost forever. But one day, as she was typing frantically, she heard a bird singing through her open window.

“When you come to the end of your life, you get the sense that you don’t want to lose yourself, you want to be able to pass something on,” she told me later. “When I had whole brain radiotherapy, I felt as though something had dropped out, as if everything I said needed to be saved. It was all running away from me.

“Somehow, when I listened to the song of a blackbird in the garden, I found it incredibly calming. It seemed to allay that fear that everything was going to disappear, to be lost forever, because I thought, ‘Well, there will be other blackbirds. Their songs will be pretty similar and it will all be fine.’ And in the same way, there were other people before me with my diagnosis. Other people will have died in the same way I will die. And it’s natural. It’s a natural progression. Cancer is part of nature too, and that is something I have to accept, and learn to live and die with.”

Ms. Finch recorded a song based on the peace she felt listening to the bird song, and it was enough to bring her some relief from what — up to that point — had been almost feverish efforts at self-preservation.

Another patient, whom I admitted in July with about a week to live, was mostly concerned that I keep the windows open, so that he could “keep on feeling the breeze on my face and listening to that blackbird outside.” I rushed to make sure of it.

Shortly before his death from pancreatic cancer at 59, in the 1990s, the British playwright Dennis Potter described the exaltation of looking out at a blossom that had become the “whitest, frothiest, blossomest blossom that there ever could be” from his window.

“Things are both more trivial than they ever were, and more important than they ever were, and the difference between the trivial and the important doesn’t seem to matter. But the nowness of everything is absolutely wondrous,” he told an interviewer.

People often imagine hospices to be dark and dismal places where there is nothing left to experience but dying. But what dominates my work is not proximity to death but the best bits of living. Nowness is everywhere. Nature provides it.

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