Although I didn’t know it at the time, a week after my father received a terminal cancer diagnosis, he asked my cousin to take him to a local mortuary where he made decisions about his burial and paid for his funeral. Following his death five months later, as a grieving only child, I was thankful my father had the foresight to plan ahead, as he had always done for other life events. His choice to preplan was a gift that prevented me from making emotional and costly decisions based in grief.
Death is a subject none of us want to confront. Talking about death causes us to face mortality and run head-on into the fact that we will not always be here. Yet death is inevitable and planning your funeral is a lot like planning for retirement. It requires honest evaluation and sometimes hard decisions, but it’s something that needs to be done.
Here are five reasons to overcome hesitancy and consider planning your funeral now:
1. Rising Costs
Each year, funeral costs continue to rise. Planning and paying for your funeral now is a way to avoid those increasing costs. According to the National Funeral Directors Association (NFDA), the median cost for an adult funeral with viewing and burial, including vault, was $8,755 in 2017. For a funeral with viewing and cremation, the median cost was $6,260. These amounts do not include cemetery costs, monument or marker, pall flowers, obituary or other related expenses, which could raise the cost to between $10,000 and $12,000. However, consumers have options.
“Charges at all mortuaries are based on operating costs and overhead and are higher in larger metropolitan areas,” said Glenn Miller, manager at J.F. Floyd Mortuary in Spartanburg, S.C. “With a full-service mortuary, there are many options. All of our services are itemized, and families can choose what to include. Our fees are the same for a funeral at a church or at our chapel as long as it involves our standard five staff members.”
2. The Ability to Make Your Own Decisions
Most people like to feel in control over decisions that affect their lives, and often that extends to end-of-life decisions. While no one can predict the time and circumstances of death, many take comfort in knowing they’ve selected the type of burial, location and funeral they want. While many plan to make these decisions eventually, most never actually follow through.
“Emotions are the greatest deterrent to preplanning,” said Miller. “People often have the attitude that if they don’t talk about death, it won’t happen.”
If you approach funeral planning as you would a financial or business decision, you may be able to get beyond those difficult emotions. Many mortuary websites provide preplanning information. Other websites, such as Funeralwise, help calculate costs. Move beyond any superstitious notions that funeral planning hastens death, and take time to investigate.
Be aware that preplanning does not require prepayment. The NFDA provides a Bill of Rights for Funeral Preplanning. Knowing your rights helps you plan wisely and avoid being overcharged.
3. To Lessen Future Family Conflict
If you’ve ever tried to plan a family reunion or holiday get-together, you know suggestions and opinions abound and conflict. When planning a funeral — factoring in intense emotions, personality conflicts and multiplying by the number of siblings — you potentially have a recipe for a family squabble.
“Many people are still traditional in their faith and type of funeral they want, while their children may not be,” said Miller. “Children think differently than their parents and often have a more contemporary approach to burial, funeral location, music and minister. Planning ahead documents your wishes.”
While you can’t guarantee family members will abide by your choices, preplanning documents your wishes and provides a benchmark.
4. To Reduce the Financial Burden
We all hope to leave assets for our children, yet a prolonged stay in a care facility can deplete savings. Remaining assets are often non-liquid, which doesn’t help with the immediate need to pay mortuary or crematorium costs. Prepaying for your funeral and associated costs eliminates or reduces the financial burden on those left behind. Most mortuaries provide incremental prepayment options over months or years.
5. Preplanning is a Gift to Loved Ones
Planning a funeral is a huge hurdle for grieving family members who may be physically and emotionally exhausted. If even some planning has been done ahead, the burden of making rapid, costly decisions is eased.
Sometimes planning occurs near the end of life, but any information given or selections made are gifts to those who will execute the funeral.
Sherry Cochran’s father made decisions about his funeral while in hospice care, with his wife and six children present.
“My father was a minister, and he openly discussed his funeral,” said Cochran, a retired attorney in Raleigh, N.C. “He chose the hymns, minister, mortuary, cemetery and told us any casket we chose was fine as long as it was plain and didn’t cost much. When your parent is willing to talk about end-of-life issues and make decisions, it teaches you how to approach death and provides closure.”
My husband’s friend died last week. He was 57. That’s how old my husband is.
His friend was a great guy, married, a father of three, always kind and generous, thoughtful and considerate. We both liked him a lot. He developed a chronic form of cancer about 10 years ago, and for a long time he just lived with it. Every so often, he’d have to go off for chemo or tests or surgery, and then he would come back like before, still the great guy he had always been.
Until a few weeks ago, when suddenly the cancer was everywhere and no one could do anything except watch him die.
So it wasn’t like we were surprised.
It was more like shock. How could a 57-year-old man with children barely into their 20s die, even if he’d had cancer for 10 years? Even if that was what the doctors had told him would happen? Even if he had grown weaker over the last few years, and no treatment seemed to be working after a while?
It’s hard for us to wrap our brains around it.
Considering Our End-of-Life Wishes
My husband and I have talked about death a lot. I don’t consider us weirdly obsessed with the subject, but we have definitely talked about it. We talk about what we will want when we are dying — not to be kept alive by artificial means or if in pain that will result in death anyway. My husband has a living will (an advance directive laying out wishes regarding medical treatment when you’re not able to convey them); I do not, but I will get on that soon.
We’ve discussed, at length, what I will do if my husband dies — he is especially prepared for that one. “Go right to the special green folder,” he’s told me more than once. The green folder is filled with codes for me to get to our money and his life insurance.
We talk about what we might do if the other dies. How long is it okay to wait to look for a future spouse? My husband says, “At the funeral,” but I’m pretty sure he’s joking. I say: Not for at least a year. In fact, I’ve told my husband, friends and family, I can never imagine being married to anyone else. Which is why when someone my husband’s age dies, I think: Would I be happy being single the rest of my life? I am 50. Would I really want to start all over, to date?
What I Imagine Would Happen
I know some things I would do. I would sell the house. It’s too big and unwieldy for me to manage myself, and it will be too expensive — mortgage, maintenance — to deal with. But then where would I go? I don’t know. All my friends would still be married. I would be alone.
Of course people wouldn’t tell me I was alone. They’d tell me they were right there with me. But they would still be couples, doing couple things together. They would invite me for dinner now and then but not when they were having date nights, or on vacations because who wants your single friend to come on vacation with you and your spouse?
Fifty-seven is too young to die. You miss out on all of the good stuff. Retirement. Vacations. You don’t get to go to the movies during the day just because you feel like it. You don’t get to have lunch at the diner with all your friends because no one is working anymore and there’s nothing else to do.
You don’t get to ever hug your spouse or kids again. You don’t get to watch your grandchildren grow into awkward teenagers who you think are the cat’s pajamas, even though you know they are actually royal pains in the neck to their parents and you sort of enjoy it after what you went through with your own kids. At 57, you feel like you still have another whole life to live.
But then it’s all gone. All of it. And you made the most of it while you were living it, but you are still missing so much. While you might not know anymore, your family will know. They’ll name kids after you and talk about you at all the family functions. Your kids will desperately try to keep you alive, even though you will never be old enough to need to be kept alive.
Fifty-seven is too young to die. My husband is 57. But our friend was 57. So it happens, and more than we would like to think. When it happens like this, you can’t help but wonder, will it happen to you, too?
Roland Carter, 78, of Stafford, Va., has advanced chronic obstructive pulmonary disease, suffers from dementia and spends most of his time in bed. Missy, one of his four dogs, usually is there with him.
“Missy stays on his bed all the time — she protects him,” says Carter’s wife, Barbara, 72. So when she recently told Roland that she was not sure she could keep caring for the dogs, along with him, he was distraught.
“He said, ‘Please don’t get rid of my dogs,’“ Barbara Carter recalls.
Thanks to a program called Pet Peace of Mind, the Carters still have their dogs. The growing program, now offered through 120 hospice and palliative care organizations in 40 states, helps about 3,000 sick pet owners and their animals each year, says founder and president Dianne McGill. Other groups offer similar services, though they may be more limited.
Helping Care for Pets Who Are Family Members
In some cases, volunteers feed and walk the pets or take them to veterinarian and grooming visits. Sometimes the program pays for pet food and other essentials for dogs, cats, horses and even snakes. Many participating organizations will, when needed, place pets with new families, often after owners die.
A serious illness can make pet care difficult. Owners may no longer be able to walk dogs or clean litter boxes.
McGill, of Salem, Ore., says she realized the need for such services nearly a decade ago. She was working for another animal welfare group and heard from a woman who wanted to help a dying friend. The friend was desperate to keep her beloved cats and ensure their care after her death.
“Her son was going to put the cats down because he didn’t want to take care of them,” McGill recalls. “The woman I spoke with couldn’t take them because she had terrible allergies.”
McGill started calling hospices and learned that they often saw similar situations and typically had no way to help.
Pet Peace of Mind started soon afterwards, as a pilot program in Oklahoma. In 2015, McGill launched it as a freestanding charity, offering assistance to palliative care and hospice organizations nationwide.
Hospice and palliative care workers see the power of pets all the time.
“We have patients where all they have is their dog or their cat,” says Terri Roberts, director of volunteer services at Columbus Hospice of Georgia & Alabama, based in Columbus, Ga. “That’s their family. That’s the reason they get up every morning.”
But a serious illness can make pet care difficult. Owners may no longer be able to walk dogs or clean litter boxes; exhausted caregivers may not have the energy for such tasks. Money can be a problem, too. Some people are so determined to take good care of their pets that they may skimp on their own needs, Roberts says.
“We have patients getting Meals on Wheels who are giving most of their food to their animals,” she says.
Variety of Services
Roberts’ organization offers Pet Peace of Mind services to clients cared for in their homes and in a 25-bed in-patient facility. Solutions vary, person to person and pet to pet, she says. In one recent case, a woman had to go to a nursing home that would not allow pets. A volunteer adopted her dog and took her to see the woman every week until she passed away.
For the Carters, the most urgent need was veterinary care for their three boxers, Missy, Max and Buck, and their Pomeranian, Molly. Because Roland needs almost constant care, Barbara had been unable to get out of the house long enough to take the dogs for rabies shots and other care.
Capital Caring, a hospice participating in Pet Peace of Mind, sent veterinarian Stacy Horner-Dunn to the Carter home to get the job done. Horner-Dunn also took Molly to her office for a much-needed nail-trimming. In addition, the program has provided dog food.
“It really has given me peace of mind,” Barbara Carter says. “I know they are well-fed, they’ve had their shots and they are healthy.”
And they are still there for Roland, she says: “Sometimes when he gets confused about where he is and he sees the dogs coming to him, he’ll say, ‘We’re home,’ and I’ll say, ‘Yes, we’re home.’‘’
Keeping Animals Healthy
It is fitting that pet care has become part of the mission of so many hospice and palliative care organizations, Horner-Dunn says.
But animals need to be kept healthy for their owners’ sake. “When pets are sick, it’s not a good idea to have them around people who are sick, too,” she says. Pets who are up to date on their vaccines and dental care and free of parasites as well as other ills are safer, happier companions, she says.
Pet Peace of Mind lists all participating care organizations on its website. It also provides a state-by-state list of animal rescue groups, veterinary colleges and other organizations that might be able to help people who do not have access to the program.
Flowers weren’t just for decoration at Victorian-era wakes.
“They were having people over to view the body so they had to try to keep the odors to a minimum,” said Edna Dieterle, with the historical re-enactment group, the Mourning Society of St. Louis.
Dieterle, 61, spent Saturday at historic Bellefontaine Cemetery in black dress and veil, as one of several people re-enacting a vigil at the gravesite of the Lindells, a family of five wiped out in a single week by a cholera epidemic that struck the city nearly exactly 152 years ago.
Although other historical enthusiasts hold cemetery tours or storytelling events, the Mourning Society has spent the last five years teaching people about Victorian funeral customs by bringing those customs back to life.
Re-creating mid-19th-century funerals is a hobby for Dieterle and her fellow mourners, but it’s also a way to connect people with the past through a shared experience, death, which was a pervasive part of daily life back then due, in part, to epidemics and unsanitary living conditions.
“People think Victorians were so focused on death, but they had so much of it to deal with,” said Dieterle, a nurse whose interest in historical medicine led her to learn more about diseases, death and funeral etiquette. “It was such a common visitor to homes in the 1860s. They weren’t morbid people, it was just reality.”
The Mourning Society also re-creates Victorian-style wakes at 19th-century homes, showcasing Dieterle’s creepy collection of mementos: jewelry made with the hair or teeth of a lost loved one, photos of dead children dressed in their Sunday best, black-and-white china painted with graveyard scenes that say “The Orphans” or “Mother’s Grave.”
Some of that collection — including instruments once used to “bleed” sick patients and recipes for funeral biscuits — will be on display at the Mourning Society’s event Oct. 26 at the Campbell House Museum in downtown St. Louis. Visitors will take part in a re-creation of the wake for Robert Campbell, a prominent businessman who died Oct. 16, 1879, in the family home. The house, which has its original furnishings, will be dimly lit by candlelight to set the mood as attendees learn about another killer that haunted the Victorians: diphtheria.
The widow, played by Edna Dieterle, poses for a photo in the cemetery during the Victorian-era funeral reenactment by the Mourning Society
While October is prime time for the Mourning Society events, thanks to Halloween, members say their goal isn’t to spook spectators but to teach them.
“It has a somber atmosphere, but no one is jumping out of the coffin with a chainsaw,” said Katherine Kozemczak, another organizer with the Mourning Society.
“But if you think about it, dying of cholera is a pretty scary thing.”
Time to grieve
As opposed to current day, Victorian customs encouraged people to mourn their loved ones openly, intensely, and for elderly widows, permanently, Dieterle said.
They mimicked the United Kingdom’s Queen Victoria — the namesake of the era — who upon the death of her husband, Prince Albert, in 1861 from suspected typhoid fever, plunged into deep mourning and wore black the remaining four decades of her life. The long-lived monarch ruled from 1837-1901.
“They focused on the grief, whereas nowadays we sometimes give advice to just move on,” Dieterle said. “The Victorians gave them time to mourn, time to grieve and time to heal.”
Women in mourning would wear special clothing — black dresses, veils, gloves and shawls, in addition to carrying parasols to block out the sun — for several months, if not a year or more. Women who couldn’t afford to buy funeral wear would dye an old dress with tea to stain it brown or gray. Men would wear armbands or brooches they could affix to regular clothing.
The homes of those in mourning would have their doors covered with black fabric, which, like the clothing, signaled to passers-by not to disturb them and muffled the sharpness of a knock on the door if they did.
Pallbearers carry one of two caskets to the grave site from the chapel during the Victorian-era funeral reenactment by the Mourning Society
“Whereas now, if you lose a loved one, people don’t know,” Dieterle said. “We’ve all had it happen where someone you haven’t seen in a while comes up and asks you how you’ve been, and you don’t want to talk about it. They could avoid those awkward situations.”
They may give people goosebumps these days, but Dieterle says there is logic behind every Victorian funeral custom.
“To us, now, they’re very sad, but for them it helped them focus on their grief, and they felt it was an appropriate thing to do,” Dieterle said.
For example, photo shoots of dead loved ones?
“They might have been waiting for a special occasion to spend the money, and that might have been the special occasion, unfortunately,” she said.
Jewelry with something from a dead relative?
“I say all you moms in the group probably have a snippet of your baby’s first hair cut taped in a baby book,” Dieterle said. “They just took it one step further.”
Just as they are now, mourning customs were a stable hand guiding people through difficult times, especially during the cholera outbreaks, Dieterle said.
“There were so many people dying during this and people didn’t know what to do, but they had to get through it somehow,” she said.
The wake
For the first 24 hours after an apparent death in the Victorian Age, relatives would sit with the body day and night just to make sure the person was actually dead. Cholera, for example, would often make people so dehydrated that they wouldn’t have enough fluid in their veins to detect a pulse.
“The term ‘wake’ came from the experience of watching the body to make sure they didn’t wake up,” said John Avery, a retired funeral director who plays undertaker for the group. “Before there was embalming — which began during the Civil War — on occasion, someone would fall asleep and be thought to have died when in fact they may have gone into a coma.
“And people were very afraid of being buried alive, so they would have someone sit and watch.”
If the dead person didn’t come back to life, the family would then wash the body, using a special solution of vinegar and alum to keep the person’s skin taut and prevent it from discoloring. The hands-on involvement was part of the family’s grieving process, Avery said.
During the wake, the dead person was the life of the party. The body would be laid out on ice and adorned with flowers as the centerpiece of a candlelit room in which family and friends would gather.
A second funeral
At the Lindells’ second funeral, mourners and people interested in learning about the rituals gathered at Hotchkiss Chapel at the cemetery. Bob Ruby played hymns on the organ — “Abide with Me” for the procession, “Jesus Loves Me” during the service and “Nearer My God to Thee” for the recessional — while Tom Allen played the part of a minister.
The funeral re-creation began with the 23rd Psalm and included comforting words about everlasting life at a time of widespread sorrow. The sermon was written by Avery, a retired diaconal minister in the United Methodist Church, who led a procession to the family plot.
Pallbearers carried two antique coffins to the burial site. A white child’s coffin represented the one that held Peter Lindell, who died in infancy; a larger coffin was for his mother, Nancy. The service ended with more words of faith and comfort.
Funeral attendees and viewers arrive at the gravesite during the Victorian-era funeral reenactment by the Mourning Society
All five of the Lindells died of cholera within a week of each other and were buried Aug. 30, 1866, at Bellefontaine Cemetery. They were part of the family that owned property along the boulevard that now bears their name.
The cemetery was established after a severe cholera outbreak in 1849. During the 1866 epidemic, which killed more than 3,200 people, the cemetery buried 200 victims in August alone, said Daniel Fuller, cemetery event and volunteer coordinator.
Nearly half of the 87,000 people buried at Bellefontaine were interred from the Victorian Era to just before World War I, and much of the cemetery, dotted by towering, centuries-old trees, has remained virtually unchanged, Fuller said.
“That’s what makes the setting out here so good for this,” he said.
The Lindell family plot looks virtually the same as it did in 1866, though cemetery caretakers added plants on nearby graves to reflect Victorian tradition. Family plots back then would be outlined with plantings done by relatives, often ivy, which symbolized permanence; fragrant herbs such as sage and rosemary that invoked particular memories; and flowers, white for children’s graves to represent innocence, and red roses for love.
For people who missed the Mourning Society’s funeral re-creation Saturday, fear not. It will return the first Saturday of October next year, with a different theme.
While Mourning Society events may not be for everyone, there are those who return every year, Dieterle said.
“When you put it to life, you see schoolkids’ eyes light up, and they start asking all these questions about what they’re seeing in front of them,” she said. “They’re not going to get that out of a book.”
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.”
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.
Dealing with a death as a teenager can be extremely hard. Many teens have lost loved ones, so you aren’t alone!
1 Never be afraid to cry. Crying is good for you. It helps you let go of some of the hurt or anger you may have. You shouldn’t feel weak or silly while crying. After all this shows that you loved the person and that they were important to you.
2 Talk to someone you trust. This could be a parent or guardian, your best friend or if you are religious, a pastor or priest. Talking about the one you loved can help you remember all the good memories you have had with them.
3
Help yourself to remember them. Listen to their favorite songs, look at pictures, read their favorite poem, plant their favorite flower in your garden. This is a good thing as it means you still have a small part of them with you.
4 Don’t blame yourself. This is a common reaction to the death of a loved one, but remember they wouldn’t want you to blame yourself.
5 If you are religious, find comfort in the fact they have gone to a better place. Remember that they are more peaceful, and there is no more hurt or pain were they are now.
6
Visit their grave site. This can bring some comfort as you can take care of their grave site. If you do not like visiting a resting place it does not mean you are a bad person, they would understand that maybe you don’t want to remember them that way.
7
Pray. Sometimes it can sound silly but if you are religious or even if you aren’t this can bring a lot of comfort as you feel closer to the person, you can talk to them and ask them to watch over you and keep you safe.
8
Have some alone time. Time on your own can help you get your thoughts together. Sitting in silence for a while can be quite comforting and can help you feel better.
9
Remember the person how you want to. Do not let other people tell you how to remember the one you loved. Remember them however you want. Your love for them could have been different than others.
10
Remember that they loved you. They always will and by feeling pain this shows you also loved the person.
11
Say goodbye. Say it however you want. Scattering the remains in a place they loved can bring some closure, also having a service can help you say goodbye.
