Tenacious. That’s how Kristin Leese Linkfield describes her father, John Leese, who passed away at 92 years old from complications of Parkinson’s disease in April 2024. Diagnosed at age 74, his courageous fight lasted 18 years.

“When he was diagnosed, that tenacity that was engrained in him came out immediately,” Linkfield remembers. “He wanted to do everything he could to fight it, keep on top of it, even though he knew it was likely a losing battle unless a cure was found in his lifetime.”

Linkfield remembers her father as “a wonderful man who did a lot of wonderful things for people, never looking for praise, but because it was the right thing to do.”

She says he was always seeking perfection and excellence in everything he did. He was adamant he didn’t want to burden his loved ones in any way and, as an accomplished engineer, there was nothing he couldn’t fabricate, build, create or design to solve a problem.

“He was trying to organize and work things out for my mom even in his last days,” Linkfield remembers. “In his eyes, everything had to be perfect so when he left, he wasn’t leaving her with any problems to handle. During his last week alive, we assured him he’d done all he could. We told him, ‘We’ll take care of mom. You taught us well. You can go.’”

As Father’s Day nears, the second without her dad, Linkfield feels at peace knowing he passed into the presence of his Lord and Savior. She also has a sense of relief that his struggle with Parkinson’s is over.

For 10 months, he was under the care of Emmanuel Hospice, a service Linkfield describes as having brought a lot of joy and comfort. At the time, Linkfield felt entirely overwhelmed by her father’s medical needs, but said the Emmanuel care team “swept in like angels,” knowing just what to do. In reflecting on her father’s end-of-life experience, there’s nothing she would change.

“There is grief and mourning, but I also know it was time to leave his earthly body,” Linkfield says. “He lived a good long life and went out on his own terms. But I don’t know how we would have gotten through those 10 months without Emmanuel Hospice. I want people to know that hospice is there to help you make things as good they can be in the circumstances you’re in.”

An especially bright spot in the journey was Emmanuel Hospice aide, Taylor Fowkes, who Linkfield describes as a spitfire. Leese and Fowkes quickly developed a special bond.

“Some would describe my dad as having a prickly exterior with a soft soul on the inside,” Linkfield says. “Not everyone got to see his soft side unless they knew how to dig for it. He often acted tough, but when Taylor walked in, she had him evenly matched. It was like she was handpicked for my dad. God had a plan in that.”

In addition to his connection with Fowkes, Leese especially benefited from massage therapy and spiritual caregivers, as well as specialized nursing care, medication management and equipment for his changing symptoms. From Linkfield’s perspective, there was nothing Emmanuel Hospice couldn’t solve.

On her father’s last day, his apartment was full. Linkfield was touched that the whole Emmanuel care team and several family members were there.

Particularly meaningful was the blessing of thanks, a ceremony that blessed his journey home and expressed gratitude for each part of his physical being – “eyes that have looked on us with love,” “ears that have been attuned to our needs,” “hands that have been a source of welcome and help,” “a heart that has given and received love” and so on – with an anointment of lavender oil.

“The blessing of the body ceremony is sacred to me,” Linkfield says. “I still hold close to my heart how beautiful that was. I will never forget it.”

If you or someone you love is on grief journey and would like support, please contact our Grief Support Team at EHbereavement@EmmanuelHospice.org or call 616.719.0919. Our services are open to anyone in the community. We offer individual counseling as well as support groups, classes and workshops. More information is available at EmmanuelHospice.org/grief-support.

How do you want to live?

It may be surprising to learn that’s the first question Emmanuel Hospice asks every new patient. Isn’t hospice about dying?

While hospice is often associated with death, Melissa Wedberg will tell you it’s more about living, especially at Emmanuel Hospice, where she serves as vice president of community relations. With more than a decade in the hospice industry, Wedberg has spent years dispelling this and many other myths.

Despite having roots in the U.S. dating back to the 70s, there remains a lot of mystery about hospice. Common questions Wedberg hears include: What is hospice and who’s eligible? How does hospice work? How is hospice paid for?

The medical definition of hospice is holistic care and support for people who have been given a physician prognosis of six months or less to live, but Wedberg encourages anyone with a serious illness to learn about hospice services sooner than later. The six-month prognosis is a guideline, not a guarantee or definitive timeline.

“Individuals can be on hospice for months or even years,” Wedberg says. “Studies show hospice care can actually increase life expectancy.”

Hospice focuses on enhancing quality of life through comfort care, symptom management and emotional and spiritual support. Some providers provide those basics and so much more, as Emmanuel does with its patient wish program and complementary services such as music and massage therapy.

Wedberg stresses that anyone can inquire about hospice and be evaluated for eligibility. You don’t need a physician referral to begin the process.

“If anyone is interested in hospice care, we can do an evaluation,” she says. “A hospice physician gives the first certification, then the primary care provider can either agree or disagree that, based on our assessment, this person has a life-limiting illness that qualifies them.”

Patients must also elect to forgo curative treatments. To be clear, this decision does not involve hastening the end of life, but rather focusing on living more comfortably.

“It is important you have goals of care that align with the goals of hospice,” Wedberg clarifies. “That is to say, you no longer want to take great measures to prolong your life, that you accept your disease process for what it is and just want to be comfortable and happy in the time you have left.”

But what does that look like? Wedberg says when Emmanuel Hospice asks, “how do you want to live,” people often talk about the little things in life that matter most.

“We hear a lot about what is important to people, such as making family memories, remaining connected to their faith community, eating their favorite meals and doing activities that bring them joy,” Wedberg says. “Our team will design a care plan around the things patients want most.

“Many people also tell us they don’t want to have the trauma and the drama of medical care anymore. They don’t want to go back and forth to emergency rooms or doctor offices getting poked and prodded rather than doing what they enjoy in the safety and comfort of their home and with their loved ones.”

Another important detail most people don’t know: You have choices.

“We are really fortunate in West Michigan to have a lot of options when it comes to end-of-life care, but not every provider offers the same services or operates in the same way,” Wedberg says, encouraging people to visit Medicare.gov to compare ratings. “You can call and interview multiple providers before you make a decision. It’s important to find one that’s a good fit for your needs.”

What about the cost? The good news is hospice care is often completely paid for Medicare, Medicaid and most private insurance carriers. Most commercial plans also have some form of coverage. For individuals who are uninsured, pro bono care may be an option.

“Pro bono is not the standard in our industry,” Wedberg adds. “But as a faith-based nonprofit provider, it is Emmanuel Hospice’s position that if someone needs and wants end-of-life care, the cost should not be prohibitive. Everyone deserves a good end of life.”

For more information, call 616.719.0919 or visit EmmanuelHospice.org.

After losing her father to ALS, Julie Snelling knows it’s one of the last diagnoses a doctor wants to give – or a family wants to hear.

Also known as Lou Gehrig’s disease, Amyotrophic Lateral Sclerosis is a devastating progressive neurodegenerative disease that robs control over your muscles. Once diagnosed, individuals with ALS have an average of 2-5 years to live.

“Usually, the brain stays intact while the disease slowly paralyzes you,” explained Snelling, executive director of the Susan Mast ALS Foundation, a nonprofit that provides support to ALS patients, families and caregivers in West Michigan. “It often hits the lungs, making you no longer able to breathe.”

According to Snelling, the disease is difficult to diagnose as there is no single test to confirm it. Initial symptoms, which can range from muscle weakness and clumsiness to slurred speech and difficulty swallowing, can be subtle and mimic other diseases. While more common in older adults, the disease can strike at any age.

“Ninety percent of ALS cases are sporadic, meaning anyone can develop it at any time,” Snelling said. “Right now, we’re supporting about 140 ALS families across West Michigan, with individuals ranging in age from 20 to 80 — and we expect that number to grow.

“Our state has one of the highest rates of ALS in the country. The number of people diagnosed in the state have doubled in the past 10 years alone.”

While hoping for a cure, Snelling says the foundation’s focus is on quality of life and helping individuals with ALS live each day to the fullest – a mission that resonates with the team at Emmanuel Hospice, which makes hospice care more about living.

Because ALS is a terminal illness, individuals with this disease are often eligible for hospice services. Emmanuel Hospice nurse Sarah Cybulski has supported more than a dozen families affected by ALS in the past five years. Knowing the trajectory of ALS in our state, she wishes more people were given information about hospice upon diagnosis to be able to utilize services earlier on.

“ALS, Lou Gehrig’s and hospice can all be intimidating terms to hear,” Cybulski said. “But one of the scariest things is just not knowing what to except. We provide education and resources to help families navigate ALS as symptoms progress. When families learn about the individualized support hospice can provide, I’ve seen that sense of being overwhelmed melt away.”

Cybulski says with its focus on compassionate, person-centered care, Emmanuel Hospice is uniquely qualified to help patients and their loved ones navigate the emotions of a terminal diagnosis, manage symptoms and enhance quality of life.

“Anticipatory grief support is especially important as someone watches their loved one with ALS lose their previous independence and they become more of a caregiver,” Cybulski said. “We have dedicated team members trained to provide support emotionally and spiritually.”

Hospice can also reduce the burden of care coordination from families so they can be more present with their loved one in the time they have left together. Helping patients and their loved ones make the most of every moment at the end of life is central to Emmanuel Hospice’s philosophy of care.

“Our first question is always, ‘how do you want to live?’” Cybulski said. “Hospice is often seen as something for one’s final days or hours, but we have had the privilege of serving patients with ALS for months. It’s never too soon to learn about how hospice can help.”

For more information about hospice care, visit EmmanuelHospice.org. Details about the Susan Mast ALS Foundation can be found at SusanMastALS.org.

Who will make decisions about your health in the event you aren’t able to make them yourself?

That’s the question at the heart of National Healthcare Decisions Day. Every April, this annual initiative emphasizes the importance of talking with your loved ones about your health care wishes, formally documenting those wishes and designating someone to make decisions on your behalf when you are no longer able to do so.

This process, known as advance care planning, is something Britt Fischer regularly discusses with patients and families in her role as a social worker with Emmanuel Hospice. In Fischer’s experience, many people wait until retirement or until they have a serious incident or diagnosis, but the conversation should happen sooner.

“Working for a hospice provider really opened my eyes,” Fischer says. “Every day is not guaranteed, so it is never too soon to get these plans in place.”

Advance care planning can be intimidating to talk about because of the stigma around end-of-life discussions in our society, but Fischer likes to say, “it is less about death and dying, and more about your health, your decisions and your rights.”

“Everyone has the right to know who is going to be making decisions for them,” she says. “Everyone should be able to feel confident that person is going to make decisions that are in line with their wishes – not anyone else’s.”

To help broach the topic with loved ones, Fischer recommends four conversations starters:

• I recently learned about advance care planning. Have you discussed your wishes for future medical decisions with any loved ones?
• Do you know who would be your health care proxy or durable power of attorney for health care if you couldn’t make decisions for yourself?
• Do you know if you have an advance directive in place? If not, can I help you with one?
• What do you think are the most important decisions to make ahead of time regarding your health?

Fischer recognizes advance care planning can also be confusing because there are a lot of different terms that are used – many of which mean the same thing.

“We want to see a durable power of attorney designated specifically for health care,” Fischer clarifies. “This is sometimes referred to as a health care proxy or patient advocate, but what it comes down to is whether you have in writing who will be responsible for making decisions for different medical events. We recommend listing additional people as backups in case the first-named person is unable to serve when the time comes.”

Filling out a form that’s known as an advance directive will serve as a legal guide for designating that decision maker and documenting what you want. It is recommended to review and update your advance directive anytime one of the “3 Ds” happen – death, divorce or diagnosis.

“There are many advance directive forms available online,” Fischer says. “CaringInfo.org is a great resource to find an appropriate one for your state. You’ll also need two people who are not related to you to witness. Often neighbors or friends can help with that part. Notarization is not necessary.”

In the state of Michigan, living wills are not legally binding. Only a durable power of attorney for health care can ensure your wishes are honored.

Fischer also recommends filling out a Michigan funeral representative form, which designates someone to make decisions about your funeral arrangements and cremation.

“I’ve found it’s best to be clear and concise about what you want to happen at the end of life,” Fischer says. “This ensures your wishes are honored, rather than leaving your loved ones to guess or debate during an already difficult time.”

Sentimental objects have a special way of keeping the memory of a loved one alive.

In hospice, creating keepsakes or legacy items has become increasingly common as a meaningful way to help cope with grief by physically preserving the memory of a loved one through tangible items.

At Emmanuel Hospice, legacy projects typically involve hand molds, fingerprints and heartbeat recordings, often paired with a quote, poem or song. As a bereavement coordinator, Katie Mayberry has facilitated numerous legacy activities, alongside volunteers and other care team members. She’s found them to be rewarding for everyone involved.

“Legacy projects are very patient-centered experiences that have a profound impact,” Mayberry said. “The activities themselves create a memory in the moment, often elicit stories and lead to more in-depth conversation afterwards. Loved ones then have a keepsake to reflect on later and use to process their grief.”

The projects, offered through the nonprofit’s art legacy and music therapy programs, are unique to each individual patient and can incorporate personal elements. The ultimate purpose, Mayberry says, is to foster connection. The activities can also be adapted for a patient’s energy level and comfort, including those transitioning to the active dying stage.

“We make sure every legacy-type experience is met with lots of grace,” Mayberry explained. “That’s especially important during times when patients aren’t able to participate in the same way as someone earlier in their end-of-life journey.”

That was the case for Misty Galant’s husband, Jon, who received care from Emmanuel in 2023 when his health began rapidly declining in the end stage of Early-Onset Alzheimer’s Disease.

“Katie was supporting our family, and when it became clear Jon was beginning to transition, she asked if we would be interested in a hand mold,” Galant said. “I said absolutely, and she showed up the next morning. It was a nice distraction from the condition my husband was in, and to have a conversation with Katie the whole time we were waiting for the mold to harden.”

With Misty and Jon, Mayberry remembers the experience was very intimate. The women knelt together on the ground next to Jon’s bed to ensure he stayed comfortable throughout the process.

“It is an imperfect process to create the hand molds, in the loveliest way,” Mayberry explained. “You must be in close proximity to one another, relatively still and physically present for 10 minutes.

“It often brings a lot of laughter, actually, and in a sense, joy. Stories come up that we don’t anticipate. It can also be a really emotional experience between patient and their spouse, or whoever they’re holding hands with.”

While Misty and Jon’s hand mold was a little more challenging to set up, Mayberry says theirs was one of the most detailed she has ever obtained.

“You could see all 10 fingers and their wedding rings, and that was really important,” Mayberry said. “I just remember it being a really wonderful experience with both laughter and tears.

“Misty has the hand mold on a shelf with a picture of them. It is just so rewarding to see something like that and know it’s so important for her to be able to have it. It was such a meaningful experience. That’s what we’re aiming for.”

Misty added: “I’m not sure what it is about the hand sculpture, but it just such a visual reminder I think because it’s actually our hands. Anytime I look at it, it’s a visual reminder of Jon and the bond we had. It’s the most personal gift I received during that time. I love it.”

Misty now volunteers with the nonprofit. As interest in legacy projects continues to grow, Emmanuel Hospice is seeking the support of additional volunteers, as well as donations, to help serve patients and families. Those interested may call 616.719.0919, email info@EmmanuelHospice.org or visit EmmanuelHospice.org for more information.