To Find a Home for A Navy Veteran

One afternoon, our hospice, Hospice Care Plus, was called to see if we could help a young Navy veteran, Mr. Jones (name changed), who was essentially homeless.

He had been living in a home with some family members, but difficult family dynamics led to it being a very unsafe environment for him, especially since he was coping with an end-stage disease.

One of our nurses was sent to evaluate Mr. Jones, and found that he was appropriate for hospice care. The challenge, though, was where we would care for him. He had no home.

After making several calls, it was clear there was no way to find an immediate home situation for the veteran patient. The Hospice Care Plus team met and made a suggestion: what if we housed him at our Compassionate Care Center in Richmond, so at least he could live in peace and comfort while we continued trying to find a safe and welcome living situation for him.

It was a big decision. We are reimbursed about $600 per day for patients who need inpatient care at our Center, as determined by Medicare guidelines. Unfortunately, though, it looked as if Mr. Jones might not meet those Medicare guidelines for inpatient care—just for hospice home care. In order to let him stay at the Center, then, we’d have to be prepared to accept the home care reimbursement rate of $130 per day instead of the inpatient reimbursement of $600 per day. If he stayed two weeks, and if he never met those inpatient Medicare guidelines, we stood to lose about $6,580. If he stayed more than two weeks, it could add up to an enormous amount of lost funds.

But, we all felt there wasn’t a choice, really. We had a bed, and a dying veteran needed a home. How could we not invite him to stay? If anyone deserves compassion and dignity at the end of life, it’s our veterans.

He came to the Center and was given a room of his own. When he was well enough to eat, our dietary staff loved to cook for him and bring him meals. Our We Honor Veterans program presented him with a framed certificate, thanking him for his service.

He also got to enjoy some of the things that meant a lot to him throughout his life. An avid guitarist, Mr. Jones loved rock music. His favorite times in life were spent going to various music venues, watching bands he loved, and joining them on stage to jam along with them.

Since he couldn’t do that anymore, he did the next best thing—he brought his guitar with him to our Center.

“I think it helped him remember really happy times of playing with his favorite bands,” says Diana Bond, the social worker at the Compassionate Care Center. “You could always tell when he was feeling well, because that’s when he’d pick up the guitar and strum for a while.”

Diana worked to find Mr. Jones permanent placement at a VA facility in Kentucky, but he deteriorated so quickly that it wasn’t possible to transfer him anywhere else. So, the Center was his home until the end. He died peacefully a few weeks after coming to us for a safe, caring home.

Mr. Jones never said to us, “My bucket-list wish is to live out my last days in a safe place, under a roof, in a warm bed, with homemade food and loving people around me—not on the streets.” He didn’t have to. It was unexpressed but clear as a bell. Who doesn’t want that? It’s incredibly tragic that such a basic human need became a bucket-list wish for him. But, it did.

We’re not sure how we’ll recover the losses from that stay, but we still feel we did what we had to do. Twenty-five percent of dying Americans are veterans. They gave us their all. They deserve no less from us.

To Visit My Favorite Fishing Hole

Mr. Smith (name changed) loved to fish. Every weekend for most of his life, he managed to fit in a time to fish for a while at his favorite fishing hole. His wife, Mary, often told us that his fishing spot was like his second home.

When we admitted Mr. Smith to our hospice home program, he had recently been hospitalized for several weeks. His energy was low and he was weak. He still loved to talk, though. Every time his Hospice Care Plus team visited, he regaled them with fishing stories.

One afternoon, when the nurse aid was visiting, he told her a story that struck a nerve with her.

“One Saturday a long time ago,” he told her, “I got up early and went to the fishing hole. It was the first real Spring day, and that fishing hole was calling to me. Mary usually made me breakfast biscuits on Friday nights, so I could take them with me if I went fishing the next morning. I grabbed those biscuits and my fishing pole, and off I went.”

He paused at this point, remembering that warm, sunny morning. The nurse aid saw that his eyes were a little misty.

“That morning was the last time I got to go there, and I was just thinking that I wish I’d known it. I wish I’d known it was the last time.”

The nurse aid asked what he’d have done differently if he’d known it was the last time.

“Honestly, I think I just would’ve sat there and soaked it up. I’d have thanked God for the time I was able to spend there over the years. It was my quiet spot, you know—a place where I could get away from everything.”

“Mr. Smith,” the nurse aid said, “If it’s okay with you, I’m going to take this back to the whole hospice team. I bet they’ll want to find a way to help with that.”

For the next two weeks, the team worked hard to help Mr. Smith strengthen his legs a bit. They walked arm-in-arm with him around the house, reviewed his medications, and came up with a plan. By the end of those two weeks, one sunny summer morning, three team members showed up to go fishing.

It wasn’t easy—Mr. Smith’s mobility was still pretty limited—but those three team members were able to get him to the car with his fishing gear. They drove to his favorite fishing hole, helped him out of the car and into a special chair, put a pole in his hand, and left him alone for several minutes.

The team eventually returned and sat next to him in silence, taking in the beautiful view. After about 10 minutes with him, Mr. Smith said, “It’s time to go, ladies.”

They helped him back into the car and took him home. After they settled him into his favorite chair at home, he looked up at them and smiled.

“What you just did…that meant the world to me,” he told them. “I needed to say good-bye to that place. I have a peace about everything now that I didn’t have before. Thank you for that.”

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 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.