A Last Christmas with Sara

This bucket-list story is about sweet young Sara (name changed). We had the honor of caring for Sara, and of working with her family to help prepare them for life without her.

One of their bucket-list wishes was to make sure they had one more Christmas together before losing Sara. Unfortunately, it wasn’t going to be easy. Her medical care up to that point had been intense, and it wiped out nearly all they had. They weren’t sure how they would truly make it Christmas, since gifts for Sara and her siblings seemed out of the question. Plus, her Hospice Care Plus team was fairly sure Sara wouldn’t be with them by Christmas.

But, as always, the hospice team met to come up with a plan. They worked closely with Sara’s family to see if they were open to having Christmas a little early. Not only were they willing to do it, they embraced the idea. Together, Sara’s parents, siblings, and the hospice team planned a family Christmas celebration to remember.

Everyone at Hospice Care Plus pitched in to find a Santa Claus, a very kind gentleman from Mt. Vernon, Ky., who agreed to volunteer his services, including traveling to Sara’s home in Jackson County, Ky. There were no extra funds at our hospice to purchase gifts for all the children, so the hospice team and other staff used their own money to make sure every child had a few gifts. The family and the team also worked together to decorate the house.

When the day finally arrived, it was as authentic as any Christmas we’ve seen. There were gifts, trees, decorations, and an entire family gathered together to celebrate.

The highlight of the day was seeing sweet Sara rest so peacefully on Santa’s lap and in his arms. She was so content and comfortable, she fell asleep in his lap as Christmas went on around her.

Bucket-list wishes like these aren’t just for patients, although it was definitely a memorable day for Sara. They are for the families, too. It is a gift to Sara’s parents that, even in the midst of the unfathomable pain of losing a child, they have this special day to remember—a magical Christmas together, complete with their own Santa Claus and gifts for everyone.

To Make Thanksgiving Dressing One More Time

LeAndra Sullivan, 57, a bubbly, irrepressible optimist with a heart of gold, refused to let cancer keep her from living. In fact, that’s why she chose hospice care—she had too much left to do, and she needed help making sure she could do it.

Junie Barclay, her primary hospice nurse, also full of spirit, was the perfect partner in crime for LeAndra.

“The first few times Junie was here, we cried together,” LeAndra told us. “But on that third visit, we both said, ‘That’s enough. Now we’re going to laugh.’ And we did! We’ve laughed and laughed together.”

They also planned. LeAndra came home from the hospital with hospice on October 28, 2014. On her first visit with LeAndra, Junie asked what was most important to her.
“I want to be here, at home, enjoying the little things,” LeAndra told her. “I want to spend time with my grandbaby, Blane, because he is my light.”

Then she added a milestone she wanted to meet–her bucket-list wish: be alive and at home at Thanksgiving, and be well enough to make her beloved dressing one more time, so Karen, her daughter, could learn to make it herself.

“Hers is better than anyone’s,” says Karen. “I wanted her to make it and I wanted to watch, write down the ingredients, and learn.”

Junie immediately worked with LeAndra and Karen to develop a plan of care centered on helping her meet her goals. They plotted out what had to happen in order for LeAndra, who was mostly bedbound, to be able to sit or stand at a kitchen counter long enough to make the dressing.

It would be a challenge. LeAndra’s cancer had metastasized to several parts of her body. Massive pain crippled her, and she had been in a coma for months after having a bad response to chemotherapy treatments.
“We had to get her pain under control, re-educate LeAndra and Karen on how to take the medications, and develop enough strength and good body mechanics for her to be able to leave the bed,” says Junie.

The Hospice Care Plus team scheduled extra visits to give their plan the best chance of working in time for Thanksgiving. Within a few weeks, they had success. On Thanksgiving Day, using a special chair that helped lift LeAndra to the counter, she made the dressing one last time, with Karen at her side.

Passing on the traditional dressing recipe to her daughter meant the world to LeAndra.

“We had the most beautiful day I’ve ever had in my life that Thanksgiving,” LeAndra said.

LeAndra died on March 15, 2015, after a five-year battle with cancer and five wonderful months at home with hospice care. Her daughter, Karen, has so many memories from her mom’s time at home—memories that will be especially poignant each Thanksgiving, when she makes her mother’s dressing.

“Leandra had the best outlook on life,” says Junie. “She was full of life and determined to live it—truly live it—until her last breath. I’m very proud to have been a part of that.”

To Continue Her Pedicures with Sam

You may have noticed that our bucket-list stories are often, at their heart, about relationships. Even those that seem to be about something else really have relationships at their root.

This bucket-list story will seem to be about something superficial: pedicures. But keep reading, because this one is also about a relationship and how important it became to Mrs. Williams.

Mrs. Williams loves pedicures. Every couple of weeks, she goes to her favorite salon for a visit with her favorite nail technician. Over time, she and this nail-tech, Sam (name changed), developed a friendship that both of them enjoyed. Mrs. Williams found him easy to chat with, and Sam liked making her laugh.

Even after she was admitted to our hospice home program, she continued her regular appointments with Sam.

Until she couldn’t.

She missed Sam and her pedicure. If this seems superficial to you, just think for a moment: when everything else is changing around you and you know time is limited, it’s tempting to hold on the hardest to those things that make us feel most normal. Like pedicures.

Plus, she liked Sam a lot, and she missed him.

As it turned out, Sam missed her, too. He had noticed how hard it was becoming for her to get to the salon. Without mentioning it to her, he was planning for the day that she couldn’t come in. Using his own money, he bought the supplies and equipment he’d need in order to do pedicures in her home.

He gave her a call, and they set an appointment. That was weeks ago. He continues to come each week. Our care team simply plans its visits around Sam’s pedicures. We know how important they—and Sam—are to Mrs.
Williams. We wouldn’t dream of interfering with that.

We love Mrs. Williams’s bucket-list wish, because it’s about so much more than beautiful toes. It’s about continuing to live and to have hope—that we can enjoy the bonds we have with the people around us, and that we can live and laugh and love, until we take our last breath.

To Get Back Home

Nancy Isaacs, a Hospice Care Plus nurse, now retired but with 20-plus years under her belt, will never forget one patient’s bucket-list story.

“He hadn’t lived in our county very long,” remembers Nancy. “He was from a small town in eastern Kentucky, and his greatest wish was to have his body taken back there to be buried in the family cemetery.”

The patient explained to Nancy and his hospice social worker, Jennifer, that the family cemetery was the only place where he felt he’d truly be at home.

“He said all his people were buried there,” says Nancy, “and that he wanted to be there with them.”

It was also important because he and his wife had almost no money, no life insurance, and no way to pay for burial anywhere else.

They also had no money for a casket.

His preoccupation with this challenge kept him from finding peace with what was to come.  So Nancy, Jennifer, and the rest of his hospice care team came up with a plan.

Jennifer enlisted her boyfriend’s help, talking him into finding wood and building a casket. Nancy and Jennifer agreed to purchase the materials to make the pillow and padding for the casket, and also to do the sewing. Family and church volunteers agreed to transport his coffin to the family cemetery.

“We told him what we were doing,” Nancy says. “He just couldn’t believe somebody would do that for him.”

For nearly four weeks, Jennifer and Nancy took their sewing machines to work with them. They left them in their cars during working hours, but brought them into their office as soon as their shift was over.

“We didn’t have any patterns or anything, just the casket measurements,” says Nancy. “We felt we needed to hurry so he could see that it was taken care of, so we sewed together most evenings after work, right there in the office.”

When the casket was complete and fitted with the padding and pillow, Nancy, Jennifer, and the rest of his team presented it to him and to his wife.

“He really loved the casket,” says Nancy. “He still couldn’t quite believe it, but he was thrilled.”

Although he died soon after, Nancy and the team noticed that a burden had been lifted and he was able to find peace.

“He was worried that he’d be a burden to his wife, because she’d have to find the money to buy a casket or pay for funeral home transportation to his family cemetery. He was finally at peace, and he needed that. He needed peace.”

To Learn to Drive

In this reflection from a current staff member and former volunteer at Hospice Care Plus,  we learn that sometimes, even family members of hospice patients have important bucket-list items.

Faced with life without her longtime husband, a grieving widow learns to drive, with the help of a special hospice friend.

Faced with life without her longtime husband, a grieving widow wants to learn to take the wheel, literally.

I became acquainted with hospice as a volunteer while in college. My first assignment was with an older couple I’ll call Mr. and Mrs. C. I was asked to visit them weekly to give Mr. C some company and Mrs. C a brief break.

On my first visit, Mrs. C asked me to sit with her husband while she went to do laundry. I sat there, full of the sense of immortality young people have, and realized how quickly it can all be taken away. Yet, there was something very hopeful in what I saw. I saw a man in his own living room, being cared for by his wife of 52 years. The wall next to his bed was filled with photographs from Mr. and Mrs. C’s life together. I saw him as a young man with his parents, as a brand new husband and then brand new father, as a smitten grandpa, and then as a comfortably older gentleman with his arms around his wife.

I saw a life and a person—not a patient.

When Mrs. C came back, she leaned over him, kissed him on the forehead, and said, “I’m back, Daddy.” He broke into a huge smile and held her to him for a bit. I sat a little uncomfortably, trying to pretend I wasn’t misty-eyed.

This, I thought—this is what it should be like in the last months of life.

Mr. C died peacefully, at home, about two months after that visit. I continued to see Mrs. C as part of hospice’s bereavement program, which offers grief support after a loss. We became fast friends, and I quickly learned that she was anxious about life now that she was alone.

Mr. C always paid the bills and balanced the checkbook. He was also their driver. So, with Mr. C gone and their children far away, Mrs. C felt lost and helpless. She couldn’t get a handle on the whole checkbook business, and she felt very limited by not being able to drive. We talked about these issues each visit, when I’d come to take her to the grocery store.

One week, after we shopped and returned to the car, I asked Mrs. C if she’d like to learn to drive. She was frightened by the prospect and insisted she didn’t want to risk harming my car. I assured her that I had faith it would be okay. She got behind the wheel of that car in the grocery store parking lot, and spent 10 minutes learning about the pedals and the next 10 minutes weaving in and out of parking lot lanes.

We continued this for weeks, until, one fall day, she went for her road test and passed. We celebrated by letting her drive me to the grocery store, where she insisted on buying me a box of cookies. We ate the whole thing on the way back to her house.

Over time, we also worked together to master the art of the checkbook. I stayed in touch with Mrs. C for more than 10 years. I called to tell her all about the boyfriend I was sure would become my husband (he did). When we had our first child, I paid her a visit. When I moved out of state, we wrote letters. When I learned she passed away peacefully at home one morning, I cried, got in my car, drove to Kroger’s for a box of cookies, and ate the whole box in her memory.

Mr. and Mrs. C’s experience convinced me that hospice care is essential to the best quality of life in the last months—so respectful of dignity, of relationships, of hopes and dreams. They also taught me that our dreams change when life hangs in the balance. For them and for her, the dream was to share a life together, at home, until the last moment, and then to learn how to go on—independently, behind your own wheel—when you suddenly find yourself all alone in the driver’s seat.

To be Self-Reliant

Our hospice works with many senior patients, a population that is very interested in self-reliance. Our hospice also serves Appalachian counties in Kentucky, where self-reliance is prized and closely guarded.

And our hospice–Hospice Care Plus–is also very committed to honoring the values, wishes and needs of our patients & families. Yet, what are we to do when honoring a patient’s bucket-list wish for independence causes some safety concerns?

 

For women like Mrs. Brown, self-reliance is everything.

For women like Mrs. Brown, self-reliance is such a matter of pride that it qualifies as a bucket-list wish.

What if you were an 89 year-old woman who had lived on her family farm her entire life? You have no running water, so you haul it every day from the creek. You also lug coal in a bucket from the storage room to the stove, because a coal stove is your only heat source. You’ve raised a large family, who are all far away. Your husband has been gone for many years. You’ve grown and canned your own food all your life. You’re proud of being a strong, self-reliant, independent woman who has kept the family home and farm, even if it’s lacking in modern amenities and comforts.

This 89-year-old woman, Mrs. Brown (name changed), was a patient of ours, and our responsibility is to make quality of life as good as it can be—as defined by the patient and family. In this case, the patient defined quality as being self-reliant, independent, and never taking handouts from anyone. Her bucket-list wish, simply put, was to stay right where she was until her last breath.

We were challenged by her case. She was so admirable, yet the hospice team had concerns about her safety. The combination of her illness, age, and poor eyesight made it very hard to manage the coal stove. After the first couple of visits, the staff began to notice burns on her dressing gown. We were concerned that she would be seriously burned, or worse. The lack of running water also raised questions about how we could provide care in the home without risking infection.

Mrs. Brown was known and loved in her town, so there was no shortage of offers to have her move in with others. But it was out of the question. She insisted on paying her own way and living completely independently. Anything else was impossible in her mind. Anytime we broached the subject, she made it clear we weren’t to do so again.

Our care team had to be creative. We reached out, had conversations, made suggestions. After a few days, we had a deal we could offer Mrs. Brown—one that would allow her to remain independent, but give her the safe environment she needed in her last months. It would still be up to her, of course, and we were more than a little nervous about introducing the idea.

We told her about a local gentleman who had a property that he only occasionally used. It was fully furnished, but sitting empty. He worked with the team to offer Mrs. Brown a job: if she would temporarily move to his house and work as the caretaker of the home, he would pay her in room and board. She would not have to give up her farm and home—just leave it for a while to do a job that a friend needed.

To our great relief, Mrs. Brown agreed. In fact, she was thrilled. She was actually honored to be offered a job (“at my age!,” she said to us). She felt she was still paying her own way in life, which was so essential to her. She also confessed that it was “heaven” to have gas heat and running water.

Now, we have to be honest. The local gentleman—our partner in this deal—did not need a caretaker. He was just another community member who was worried about Mrs. Brown, but who knew what her independence meant to her. He fabricated the need for a caretaker so she could live out her days according to her one bucket-list wish: to live completely independently until her last moment.

Thanks to a creative staff and the wonderful communities in which we live and work, we were able to honor a patient’s bucket-list wish for self-reliance without compromising safety or the quality of care. Mrs. Brown wouldn’t have it any other way. And neither would we.

To See My Granddaughter Again

a patient with his granddaughter

Mr. Beagle with his beautiful granddaughter. He reunited with her after telling his hospice chaplain that seeing her again was the most important thing to him.

 

We see it again and again, without fail. Often, bucket-list wishes are about people and relationships. We saw it again recently when a grandfather in our care expressed his deepest desire.

Sally, Mr. Beagle’s Hospice Care Plus chaplain, asked him what was most important to him during one of her visits. (We ask this of all our patients, regularly).  He said breathing was most important, because difficulty breathing is his biggest challenge. But his wife urged him to think more carefully about his answer.

“Now, now,” she said. “There’s something much more important to you than that.”

granddaughter and pt 3

She clearly thinks the world of him, too.

He paused for a few seconds, until tears filled his eyes. Then, he told our chaplain that there is someone special he really needs to see.

His three-year-old granddaughter lives 4 hours away. He and his wife raised her until she was 14 months old. He hadn’t seen her since. He adores her and, in that moment that he told Sally about her, it was clear that being with her is definitely what’s most important to him right now.

Thankfully, his team–Sally, his nurse Paige, and his social worker, Jackie–are committed to honoring these bucket-list wishes for patients and families. They went to work–contacting family members, asking questions–and discovered that the granddaughter and her parents very much wanted to visit, but money was tight and they weren’t sure how to pay for the fuel to get there and back.

So, we dug into our special fund for bucket-list wishes and found enough to provide a $50 gift card to fund the trip.

It was worth every penny, and then some. Just look at these pictures. Not only is it clear that he is at peace now that he’s with her again, but also that this child adores her grandfather. What an incredible moment to have captured, so that, in the years to come, she will have something to remember the special trip she took to see the grandfather who couldnt’ rest until he saw her again.

To Continue a 37-Year Tradition

Seventy-three-year-old Stanley (Tracy) Jenkins enjoys many things, but a few top the list.

David and his wife Paula with the hand-painted festival sign next to Red Lick Road.

David and his wife Paula with the hand-painted festival sign next to Red Lick Road.

Bluegrass music is one. He has spent most of his life traveling on weekends from one bluegrass festival to the next. Ask him how many he’s been to, and he’ll guess 100 but tell you it’s probably more.

Another one is the beautiful Red Lick Valley, which he calls home. He has lived his entire life on farmland once owned by his father in the Estill County, Kentucky, portion of the valley.

And one is definitely his family and its tradition of farming the land in the valley.

The stage is nestled between the Jenkins’s home, the surrounding knobs, and the Red Lick Creek.

The stage is nestled between the Jenkins’s home, the surrounding knobs, and the Red Lick Creek.

It’s no surprise, then, that he has combined these three joys into a special tradition: The Red Lick Valley Bluegrass Festival, which takes place each year right on the family farm.

The 37th festival is this July 23-25, 2015. Mr. Jenkins has been its leader and champion from the beginning. And now, even though he is in the care of Hospice Care Plus, he wants nothing more than for it to go on as planned this summer, and to continue beyond him every year for many summers to come.

He hasn’t let much of anything keep him from putting it on each year: not rain, not the bad economy, not the gas prices that made it harder for campers to come from out-of-state, and not even the loss of his beloved wife, Colie. She died one month before the 2014 festival, and still the family managed to keep it going.

This year, Mr. Jenkins has a new challenge. He recently chose hospice care after a DSC_0065lengthy hospital stay and a diagnosis of acute respiratory failure. Hospice Care Plus now cares for him in his home, just as they cared for Colie.

But he’s still making sure everything is in shape for the July festival. He’s already booked all the talent, and he has every intention of being there himself.

“It’s very important to him,” says his son, David.

His list of helpers is long, thankfully. Several friends and family pitch in. Paula, David’s

Colie and Tracy Jenkins at a bluegrass festival. Bluegrass music was a big part of their lives together.

Colie and Tracy Jenkins at a bluegrass festival. Bluegrass music was a big part of their lives together.

wife, is the full-time caregiver for Mr. Jenkins and the cook for this year’s free soup-bean dinner on the first night of the festival. David manages the family’s 400 acres of fields—mostly soybeans—and is, as he puts it, “the head festival grass-cutter, which I inherited from Colie, and parker of campers.” And the hospice team visits throughout the week, checking that Mr. Jenkins’s symptoms are under control and the family has the support it needs.

It’s a very busy time, but this family thrives on it.

“First thing in the morning every day, he tells me what needs to be done,” says David. “From farm to festival, he knows what needs to happen day-by-day. I’m learning the ropes, especially when it comes to knowing the bands well.”

Mr. Jenkins’s passion for the music, and his family’s support, has made The Red Lick

The Tracy Jenkins farm fans out over 400 acres, many of which are used to farm soybeans.

The Tracy Jenkins farm fans out over 400 acres, many of which are used to farm soybeans.

Valley Bluegrass Festival one of the most successful in the region. It draws anywhere from 500 to 700 from all across the country. All 85 of their camper spots are typically filled. The festival’s popularity has led to a waiting list for bands that are ready to perform if someone cancels.

The family charges a modest fee for the three-day festival, but they invest profits back into it. That’s how, over the years, they’ve added more electric plug-ins for campers, lights, a stage, concession booth, and more.

It all started when Mr. Jenkins’s brother, Raymond, started playing with a bluegrass band when they were young. Mr. Jenkins would drive him to Renfro Valley every Saturday to play.

“We had to tie the bass fiddle on top of the car,” he remembers, laughing. “Then we got a station wagon, and felt like high society. Later, we put everything in an old bread truck.”

Although Tracy Jenkins is under the care of Hospice Care Plus, he works closely with David and Paula every day to make sure the farm work and festival planning are on schedule.

Although Tracy Jenkins is under the care of Hospice Care Plus, he works closely with David and Paula every day to make sure the farm work and festival planning are on schedule.

Ever since, says Paula, “Bluegrass has been his life.”

Last year was the first year Mr. Jenkins felt so ill he had to go back to the house during the festival. It was a noticeable absence, says David.

“If you want to talk to Dad during the festival weekend, you have to get in line,” he says. “He’s very well-known and well-respected in the bluegrass music family.”

This year, Paula and David are putting plans in place to help keep Mr. Jenkins in the thick of things and comfortable.

“We’re going to park a camper with air conditioning right next to the action, so he has a cool place to go where he can rest if he needs to and breathe easier,” says David.

As for what will happen to the festival when Mr. Jenkins is no longer here to lead it, David has a quick and easy answer.

“It’s pretty important to him to know that I’ll make sure it goes on,” he says. “I made him a promise, and I intend to keep it.”

Over the years, the Jenkins family has added a covered picnic area, concession stand, covered stage, and electric plug-ins for campers.

Over the years, the Jenkins family has added a covered picnic area, concession stand, covered stage, and electric plug-ins for campers.

 

To be There for His 1st Day of School

One of our favorite bucket-list stories–or any kind of story!–is about a loving grandmother named Nancy. Nancy and her husband Skip had nearly 40 years of history together when she learned she had lung cancer in June 2009. By Christmas, she knew curative treatments were no longer helping. Her focus became quality of life, and we were honored to be asked to care for her at home.

Nancy and Skip were proud parents and grandparents. They loved living in Berea, Ky., and being close to their family, making memories and sharing milestones. And one of Nancy’s very favorite milestones came each fall; she loved watching her grandchildren get on the bus for the first day of school each year.

“She always enjoyed that,” says Skip. “Everyone has these memorable moments in their lives. It’s different for everybody. Seeing her grandchildren get on that bus was big for Nancy.”

In fact, it was big for her when her own children were young, too.

In that winter of 2009 as Nancy, a former nurse, coped with the knowledge that treatments weren’t helping, her thoughts turned to her youngest grandson, Deacon. She told a close friend, Carol, that her one big hope was to hang on long enough to see Deacon step on that school bus for the first day of school.

“I can’t begin to describe how important this was to her,” says Carol.

Nancy and her family made it through that winter, the spring, and into the next summer. But, around July, her condition deteriorated quickly. On July 29, 2010, she was admitted to the Hospice Care Plus Compassionate Care Center for end-of-life pain and symptom management. The nurses and the rest of the hospice team went to work to get her pain and symptoms under control so that Nancy would be comfortable. Then, the team talked with the family about Nancy’s prognosis, explaining that she was close to the end of life.

Hospice staff are very aware that comfort and peace are about more than just physical pain and symptoms. The entire team—nurses, aids, chaplains, social workers, and more—work together to get to know the patient and the family, to better understand what’s needed to bring the most peace to everyone.

This was certainly the case for Nancy. Nancy’s physical symptoms, including her pain, were under control. Still, she was agitated. She didn’t seem at peace.

Her beautiful family and her close friend Carol thought they knew why.

Carol, Skip, and Nancy’s Hospice Care Plus team took action. They contacted Skip Benton, director of transportation at the Madison County Board of Education. Explanations were given. Plans were made.

The next evening, July 30, just before 8 p.m., Nancy’s nurse wheeled her outside to the front of the Compassionate Care Center. Deacon was standing there, all dressed up for the first day of school. Seconds later, a big yellow school bus rounded the bend toward the Center.

Nancy couldn’t believe it.

The driver flashed the lights and extended the safety bar as the bus approached the Center, just as she would at any other bus stop. She pulled up to where Deacon waited, right next to his Nana’s wheelchair. When the driver opened the doors, Deacon hugged his Nana, told her goodbye, boarded the bus, and waved to her from the front seat as the Madison County school bus eased away from the curb.schoolbus

When the nursing staff got her back into bed, Nancy told Skip, “I am so happy I got to see that.” She drifted into a state of semi-consciousness immediately afterwards. Those were her last words.

Just after dawn the next morning, Skip knew Nancy was almost gone. “I went over, took her hand, and told her, ‘Nancy, it’s time for you to go home. You need to be with your mother, your dad, and aunts and uncles. I want to thank you for being my wife. We had a wonderful 40 years, beautiful children and grandchildren, but it’s time for you to go home.”

She passed peacefully moments later, less than 12 hours after watching her youngest grandson board the school bus for the first time.

All of us at Hospice Care Plus would like to thank Skip, Carol, Deacon, and Nancy’s entire family for allowing us to share their beautiful story. Special thanks also to the compassionate, wonderful people with Madison County Schools and its Board of Transportation for their willingness to partner with us in doing whatever it took to help one special Nana die in peace.