‘I’m a friend at the end – why I became a death doula’

Hilary Pepiette is an end-of-life doula

When a loved one dies, it is often medical staff, a hospice and an undertaker who deal with the final moments.

But families can now bring them back into the home, engaging an end-of-life doula to take care of the last wishes and arrangements for their loved ones.

Hilary Pepiette, a solicitor, is one of Scotland’s first end-of-life doulas.

She thinks there is a great need for her role as a “friend at the end”.

Hilary told BBC Radio Scotland’s Kaye Adams programme: “An end of life doula is someone who supports and walks alongside a dying person, the family and people close to that person, through the dying process, through the death and sometimes after that.

“The doula is your consistent flexible presence to fill in the gaps and give support emotionally, spiritually and practically in whatever way it is needed for each individual person and your family.”

Hilary believes we have handed over control to the professionals.

She said: “I have seen family members who have died and I think there is a feeling for me that I would love to do more and make sure that people can have the best possible death they can have, and to celebrate life.

“It is about making sure people live their life to the absolute fullest potential as long as they possibly can, and celebrate that, and then help them have the death that they want to have, give them come control over that.

“My mum died at home and while we did the best we could and it was a good death.”

Death is a taboo

But she added: “I wish I knew then what I do now about what was going on for her at that time.

“It’s only in the past 100 years or so that people have stopped caring for their dying family members at home and it all became about hospitals and the medical profession.

“Death has become a taboo and something that people have stopped talking about. But the more we are open about it the better. Being with someone and having those final conversations is so rewarding.”

Hilary thinks people can talk about their end of life wishes more easily with someone who is not family

As a solicitor in Edinburgh, Hilary processed wills and personal business. She decided to take her end-of-life services one step further.

She said: “It felt natural. I have been a private client solicitor for more than 20 years, and through that I have worked with a lot of people planning wills, powers of attorney and advanced medical directives to help them think about and plan for the end of their life.

“It seemed like a natural progression to me to take that one step further and think about what happens after the legal documents have been put in place.”

Hilary’s firm BTO, is the first to offer an end-of-life doula as part of its services.

What does an end-of-life doula do?

A doula will talk and listen to the patient’s wishes and hopes for the way they will die

According to Hilary: “I do things from washing dishes or making their dinner or cutting someone’s nails or feeding them at the end of their life. Also providing the personal care that might be provided in a hospice.

“Also talking. There is a big role for conversation here where it can be really hard within a family to have the difficult conversations about what you want the very end of your life to be like, where do you want to be when you die, who do you want to be there. Do you want music playing?

“It is establishing what the biggest hopes and fears are. What are you most afraid of? Is it pain or losing control of autonomy, of making decisions. Having those conversations is a big part a doula can play.

“Some people are never comfortable talking about it. But most people who are given that opportunity and a safe place to do that are happy to do that and have those conversations.”

Someone who agrees with Hilary is Prof Dame Sue Black, forensic anthropologist and vice chancellor for engagement at Lancaster University, wants death to be celebrated more.

She told Kaye Adams: “It is an inevitability, it is going to happen. What we can’t control is how it happens.

“In the past that would have often been done by family. I think we have become scared of death, we don’t want to admit it exists.”

Prof Black was awarded a Damehood in 2016

Prof Black thinks people have been conditioned to believe in a certain way of doing things.

She said: “People tend to accept there are rules we have to abide by but generally there aren’t. It’s important those left behind feel they have the autonomy to respect the person they have lost in a way that helps them with their grief.

“We think a funeral has to be very specific in that it has to have hymns and speaking, and it doesn’t. We need to have a confidence that those who are left behind have control over the celebration of the person who has been lost.”

She also thinks people should not be afraid of the last moments and to make the most of them.

She said: “I think we forget sometimes when patients are advancing towards the end of life that we think they are not listening and don’t communicate.

“There is some research that suggests the last sense to go may well be hearing so that’s the time we need to tell them how much we love them, how much we care, what a difference they’ve made.

“One of the last things we can do is communicate.”

Complete Article HERE!

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!

The cost of not talking about death to dying patients

Will you know when it is your time to die? It is a question that has permeated my mind since July 14, 2017. This was the day my mother died. It was a sad day, but it pales in comparison to the months preceding it. A breast cancer that had returned aggressively, a hasty port placement to receive chemotherapy that was too late  and an ICU admission that began many futile interventions that never saved her life, but prolonged my mother’s suffering.

As a registered nurse, I watched a scene unfold that I swore to myself I would never let happen to anyone I loved. Yet, there I was listening to an oncologist discuss a 30 percent chance she would respond to chemo (which did not mean she would be cured) and choosing this inappropriate treatment for my critically-ill mother. I was party to these decisions when my mother couldn’t make them and when she made some recovery in her mental status, she also chose to continue treatments.

Were these decisions well founded? They were missing a key piece of information, that even with my training, I failed to see. My mother was dying. She was dying and none of my mother’s care providers were able to say those words.

Would my family have chosen a different path for my mother, if there had been a more explicit conversation? Resoundingly, yes. If my mother’s health-care providers would have had a deliberate discussion about her impending death my family would never have chosen chemotherapy and instead chose to initiate hospice care.

As a nurse, I have a duty to advocate for patients. Advocating can take many forms, but most often, it is helping patients navigate the complexities of the health-care system as well as explaining the meaning of test results, procedures, and diagnoses. Often, answering the question “What does this mean for me?” In my own practice, I have helped many patients understand the life changes needed to manage, diabetes, heart failure, and coronary artery disease.

But, like the nurses who provided care for my mother, I struggle having explicit conversations about dying with my patients. This does not appear to be an isolated phenomenon. In a 2018 study, researchers in Australia surveyed acute care and critical care nurses to assess their understanding and utilization of end-of-life discussions and care planning. They found that nurses’ own knowledge and rates of participation are low when it comes to end-of-life care.

On the other side of this, is a patient who may not be making a well-informed decision, because they don’t understand their disease is life-limiting or that they are dying. When the focus is shifted from “fighting to live” to “death is imminent,” other care decisions can be made by these patients. They can choose hospice care. Patients who have a prognosis of 6 months or less are eligible.

In hospice, care is shifted from procedures, tests and medications that can cause discomfort or pain for the patient, to comfort measures that improve the quality of one’s last days. Medicare, who pays for this benefit, found that only 12-25 percent of beneficiaries’ days during the last year of life are being spent in hospice. Are we having these conversations with our patients too late? I have coordinated and provided care for patients who only hours before their death have been enrolled in hospice, even though their diagnosis had been terminal and had been known by the patient’s providers for months.

To be sure, there are nurses who are adept at having these difficult discussions about death with patients and their families. But it is not a skill that comes easy to the majority of the profession. Fortunately, there are resources available to help nurses facilitate these conversations in an effective way.

The End-of-Life Nursing Education Consortium (ELNEC) project, for example, is a national education initiative that seeks to educate nurses on better end-of-life care. Their curriculum includes coursework on how to lead effective communication during end-of-life care.  

Perhaps, we need to re-evaluate how we train our nurses to have conversations about death and dying. Have those who are experts at these discussions share their wisdom and teach nurses how to have these conversations in an empathetic and impactful way so that patients can receive the comfort and dignity of hospice care in a timely manner. If we can make these changes in our communication with patients and their families, perhaps, one day we will all know when it is our time to die.

Complete Article HERE!

When Is the Right Time for Hospice Care?

Caregivers should know what hospice involves and how to navigate the decision

By John F. Wasik

When my 91-year-old father returned from the hospital after a bout of pneumonia and was readmitted scarcely a week later, his doctor suggested that hospice care was probably a good idea. He was extremely frail and barely able to walk. His overall health wasn’t improving.

Like most people eyeing hospice care as the end stage of medical intervention, I was reluctant to make that decision. What if he could get better? Wasn’t hospice only for people with a few weeks — or days — to live? Was I being unrealistic about his condition?

Such questions often torment families. It’s one of the most difficult health care decisions you’ll make because of hospice’s astounding recognition of mortality. According to the Centers for Disease Control and Prevention (CDC), hospice care involves more than 1.3 million patients and 4,000 agencies — most of them private — but it’s still not well-understood and often offered much too late.

How Hospice Works

Medicare pays for hospice care for people who are terminally ill, “with a life expectancy of six months or less, if the illness has run its normal course,” according to Medicare.gov. While that definition sounds muddled — many could live for only a few days or several years — it’s a different philosophy of care. It’s rare that hospice patients survive for half a year. The average hospice from 2011 through 2016 was 71 days or about 2 1/2 months, according for the Center for Medicare and Medicare Services.

Medicare defines hospice care as a “specially trained team of professionals and caregivers providing care for the ‘whole person,’ including physical, emotional, social and spiritual needs.”

At the core of hospice is palliative care — making the patient feel as comfortable as possible and not directly treating an illness. Medicare offers hospice through its Part A, but a patient must be certified by both a regular and hospice doctor that he or she has only six or fewer months to live. You still pay your regular Medicare Part A and B premiums, plus $5 co-payments for prescription drugs. (Note: Medicare supplemental policies can cover co-payments, depending upon the plan).

A Misunderstood Option

The major difference between hospice care and conventional treatment is no longer isolating and treating specific causes of health issues. “The biggest myth of hospice care is that you have to relinquish all treatments,” says Ruth Finkelstein, executive director of the Brookdale Center for Healthy Aging at Hunter College and the City University of New York (CUNY). “You’re only relinquishing ‘further extreme measures’ such as another course of chemotherapy.”

While hospice care can be offered in facilities, it’s generally given in the home and includes counseling, drugs and equipment like hospital beds. There’s also support and counseling for the family.

But the biggest barrier with hospice isn’t its end-of-life focus, it’s the fact that most patients and families choose it too late, says Finkelstein. Relieving pain — the centerpiece of palliative care — should be considered earlier rather than later in the process. And you don’t have to be terminally ill to receive it.

“The time for palliative care is anytime,” says Finkelstein. “Look at the situation from the patient’s and family’s point of view. Anytime something serious is happening [with pain management]: How do you want to handle it? You can employ a ‘pain team.’”

Making the Decision

After weighing what hospice care entailed, I enrolled my father with a local hospice care provider. The paperwork was simple: three Medicare authorization forms. While it hardly put my mind at ease over his state, I knew he would receive care that focused on day-to-day comfort instead of endless treatments and tests.

I sat down with the hospice provider and the care manager of his senior living center to discuss what hospice meant in practical terms. When would narcotics be administered? What happened beyond the six-month Medicare limit for coverage? Would I have some control over the kind of care offered?

Since I had health care power of attorney and my dad had dementia, I would be consulted on his care. He could qualify for more benefits if his conditions improved, which happens in a handful of cases. That was somewhat reassuring. Focusing on his comfort, the hospice company ordered a hospital bed to reduce the incidence of bed sores. They also increased his nurse visits and monitored his painkillers.

No heroic medical measures would be offered, though, which is hard for most families to accept. The hospice providers were trying to make my father feel as comfortable as possible and add a measure of peace to his life, which had been marked by a series of diagnostics for maladies that couldn’t be cured under ordinary means. He’d still be given antibiotics for frequent urinary tract infections, which are common in older people, but he wouldn’t be shipped off to the hospital at the first sign of trouble.

It’s Never Easy

The decision to enter into hospice care is painful. How can a family best approach it?

Try to get everyone on the same page. Evaluate the prospects of a loved one getting better with conventional treatments compared to the suffering that extensive medical care will entail. Does the person have multiple chronic conditions? Is the person gravely ill?

Sit down with a hospice provider, who can be recommended by a doctor, hospital or long-term care facility, and ask how the provider would respond to specific situations. If you’re searching for a hospice provider on your own, you can obtain a referral from Medicare (800-633-4227) or at Medicare.gov/hospicecompare. You’ll want to make your selection carefully; a new Government Accounting Office study of the Medicare hospice program found that “hospices do not always provide needed services to beneficiaries and sometimes provide poor quality care. In some cases, hospices were not able to effectively manage symptoms or medications, leaving beneficiaries in unnecessary pain for many days.”

Ask the provider staffers under what conditions they take a person to the hospital. What drugs will they use to relieve pain and how often? How do they handle overall management of care?

Hospice is less about what we think modern medicine should do and more about finding a small sense of serenity in one’s final moments. It may be little consolation to most families, but it’s a more compassionate approach that can strive to ease suffering.

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!

The End-of-Life Care That Veterans Need

How to ensure comfort and dignity come first

By Carole Quackenbush

Every veteran is unique, with a lifetime of memories, stories and achievements. At the same time, veterans share a common experience regardless of when and where they served. The rigors of military training, the bonds developed among service members, long separations from family and loved ones and the severe stress of combat all form a veteran’s character. It’s common for intense emotions and memories to resurface at the end of a veteran’s life, sometimes to the surprise of family members who are hearing these things for the first time.

Physical, Emotional and Psychological Pain

The harsh toll of war includes disease, disability and illness that can complicate end-of-life care. Depending on the war, veterans may have been exposed to ionizing radiation, Agent Orange, open-air burn pits, battlefield transfusions, below-freezing temperatures and infectious diseases. These exposures put them at a higher risk for a variety of cancers, Type 2 diabetes, kidney disease, heart disease, hepatitis C, respiratory illnesses, malaria, tuberculosis and more.

Symptoms of depression and post-traumatic stress disorder (PTSD) can arise at the end of life, even if they weren’t present before. Sometimes clinical symptoms can mimic those of PTSD, including traumatic recollections, flashbacks, hypervigilance, hyperarousal and agitation and nightmares. These symptoms are often prompted by an emotional or traumatic experience such as receiving a terminal diagnosis.

In addition to physical and psychological conditions, veterans might feel like purging themselves of memories by discussing their military experience with others — sometimes for the first time. Veterans can also have concerns about how their families will manage after the veteran dies.

Navigating End-of-Life Needs for Veterans

At VITAS Healthcare, a provider of end-of-life care, we have extensive experience with veterans. We witness every day veterans exhibiting clinical and psychosocial issues more often than other hospice patients. We want to make sure our veteran patients feel safe and secure, and that’s why it’s important to acknowledge veterans’ emotional concerns, not dismiss them. Even if they are only memories, they are very real to the person experiencing them.

When caring for veterans, it’s important to respond appropriately to challenging clinical issues while placing patients’ feelings of comfort and security first. Veteran volunteers, who are veterans themselves, can play a valuable role by listening, understanding and empathizing in ways even family members sometimes cannot.

Honoring Veterans at the End of Life

One method to connect with veterans and ensure their comfort and dignity is to provide them with information on their benefits. Identifying potential entitlements and coordinating with the Department of Veterans Affairs (VA), service members’ agencies and other local and state organizations can be extremely helpful to veterans and their families who may not realize how to acquire the benefits they have earned.

It is also key to remind veterans they have a support system and that they are valued. Some veterans returned from war without even receiving a “thank you for your service.” Giving veterans the recognition they deserve can make a world of difference.

Something small like offering veterans a recognition ceremony honoring their military service can go a long way. It can happen quietly, right at the bedside.

Additionally, the nonprofit Honor Flight Network sends veterans from around the country to the nation’s capital at no cost to visit and reflect at their war memorials, which is typically a very meaningful and special experience for veterans.

When veterans are unable to make the trip due to mobility issues or terminal illness, there are other options.

In some states, Flightless Honor Flights take place in a large room decorated by the community to resemble an airplane. With a video presentation played on a large screen, patients experience an Honor Flight without having to step foot on an actual plane.

In addition, Virtual Honor Flights are ideal for bedridden veterans. We’ve purchased virtual reality headsets with pre-recorded, 360-degree tours recorded by retired military tour guides, of the World War II Memorial, Korean War Memorial, Vietnam War Memorials, Women’s Memorial and Arlington National Cemetery.

Veteran patients and their families should know they are never alone. From challenging clinical symptoms to complicated benefits issues to a simple “thank you,” veterans should feel supported. It is never more important than at the end of life to show veterans unwavering honor and respect.

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