Even those never at a loss for words can find themselves tongue-tied when trying to find the right thing to say when someone is dying.

It’s common to feel uncomfortable or helpless, but Emmanuel Hospice Bereavement Coordinator Ashley Huisman assures us there are meaningful ways to be there for hospice patients and their families.

In what can be a very difficult and emotional time, she recommends starting off by considering what those closest to the patient may be going through and giving them some time and space.

“Recognize the loved ones of the patient may not be able to respond to phone calls or texts as readily as normal, but that doesn’t mean things have gone terribly wrong or you should try to rush to be with them in person,” Huisman explains. “It just might mean they’re focused on something else at the moment, and they will get back to you when they can.”

The next step is to listen – really listen – to what they say they need in that moment.

“While all you may want to do is help, if they want privacy, respect their wishes,” she says. “Don’t override their decision with what you think is best for them. It’s OK to be a person of support from the outside for now, and see them more later after their loved one passes.”

If they are open to visitors, Huisman says focusing on being a calm and peaceful presence is best.

“They might be worn out from being at the bedside for so long,” she explains. “There’s a lot of sitting there and anticipating something coming, but not knowing exactly when and how someone will pass. It can be exhausting.

“Avoid bringing in high energy or being loud. Generally, you want to think about coming in as the quiet in the storm, a person they can lean on for stability when they feel like so much is out of their control.”

Huisman says there are no perfect words for one’s final moments, but you can bring up good memories or stories of what makes the patient special to you. You can also encourage their loved ones by reminding them how important it is they are present – how glad you are that the patient has them by their side.

“And not saying much is just fine,” she says. “Don’t feel the need to always fill the silence. Simply being present, holding their hand or giving a hug can be a great comfort.”

As for what to say to the hospice patient in their last days, consider words of reassurance.

“They can still hear, so let them know you are there and you love them,” she says. “You can also play quiet music they enjoy, talk kindly to them about positive, comforting things or offer a prayer.”

If you can’t make it in person or if the caregiver does not have capacity for visitors, Huisman recommends sending a card.

“Include a photo of their loved one or a heartfelt story or a memory – maybe even a gift card for food for the caregivers,” she says. “It can be more of a ‘thinking of you’ card for that person at the bedside to look at on their own time when they’re ready and have the freedom to focus fully on their loved one.”

For more information and free resources about everything from caregiving to grief support, call 616.719.0919 or visit EmmanuelHospice.org.

For retired nurse Amy Lyons, being a volunteer for Emmanuel Hospice continues her lifelong pursuit of caring for others.

As a patient/family support volunteer, she’s at the bedside of a hospice patient providing comfort and peaceful companionship through the end of their life. Sometimes she talks with patients or reads to them, other times she’s more of a calming presence while she holds their hand or crochets a lap blanket.

“I was always taught the Holy Spirit will tell you what you need to do,” she says. “I can’t necessarily provide physical care as a volunteer, and as a former nurse, it’s hard not to help, but you find other ways to support. I’ll play music, hold their hand – whatever makes them comfortable.”

As she leaves a session with a patient, which normally lasts an hour to 90 minutes, she likes to ask if there’s anything she can bring them next time – something that brings them joy.

“One lady said sunflowers,” Lyons recalls. “Well, it was too early for real sunflowers, so I brought artificial ones. I explained this to her, and she said, ‘why yes, it is too early’ and then proceeded to tell me all about growth of sunflowers.

“I believe every patient always has something to teach you. If nothing else, it’s how to die with grace – all of them have been at peace in the end and that makes me happy.”

Lyons has been with several patients in their final moments in what’s known as “sitting vigil” – being at the bedside during someone’s last days or hours as they’re actively dying.

“I find it so rewarding,” she says. “People often ask how can you do that? And I can’t tell them enough what an honor it is to go and be selected to be with a person until their final breath.”

While most vigils last a few hours, the first patient she sat vigil with lasted nine days. She chose to be there with him for three to four hours a night, and when he passed, “It was a relief for both of us.”

“I thought, ‘he’s comfortable now,’ ” she remembers. “That is all I ever want to see, that you’re comfortable with where you’re heading. I tell patients, ‘no matter what you think or what you’ve done or haven’t done, it’s OK. You don’t have to be afraid.’ And for some, it seems that’s all they needed to hear – that it’s all going to be OK.”

Lyons is also a spiritual director trained by the Dominican Center in Grand Rapids, so she brings a spiritual side to her hospice volunteer work.

Lyons and her husband, who is also a spiritual director, have curated a library full of spiritual texts to better understand other belief systems and to offer readings that will resonate best with each individual patient.

“Figuring out what faith care they would like, and how to honor that is important to me,” she says.

One of her favorite tools for helping patients feel more comfortable and to open up about their life story is a book that contains a series of questions a father would typically answer for his own kids.

“I’ll look in the book and ask something like, ‘what’s your fondest memory of your grandkids?’ or ‘what do you remember about your grandma?’ and that usually gets people talking,” she says. “I’ll share about my life, too. I explain that being a nurse is very physical work, but I can sit and I can talk to them and hold their hand. I can’t care for them the way I used to, but now I can care for their spirits.

“I would never hesitate to volunteer again. If I knew how rewarding it would be, I would have become a hospice volunteer sooner in my life.”

Emmanuel Hospice is always looking for volunteers in the greater Grand Rapids area to provide companionship and support to patients. The nonprofit matches the unique skills and interests of prospective volunteers with the right opportunity, ensuring each volunteer receives a tailored area of assignment. More information can be found at EmmanuelHospice.org/volunteer.

Each time Kaitlyn Dawson has lost a patient, she takes the time to draw a flower commemorating the time and space the two enjoyed together and to honor a life well-lived. Her bittersweet bouquet includes some 200 flowers to date.

In her role as education manager for Emmanuel Hospice, Dawson believes that taking the time to memorialize and remember someone who dies is a productive way to deal with grief. She shares her sentiments with others who work on behalf of Emmanuel to help patients through their respective transitions.

“It’s adopting a rhythm and a practice that engages the grief and embraces the life someone led,” says Dawson, who worked many years as a social worker. “It doesn’t have to be drawing a flower, though. It can be virtually anything – lighting a candle, saying a prayer, writing in a journal.”

The key, she notes, is to “establish a practice of tangibly acknowledging their place and our own place in this world, and commemorating something – someone – we’ve lost.”

Dawson moves through her drawings and comes upon one of a hydrangea: “Every time I look at this, it makes me think of Carol,” she says. “I remember my time with her. I remember her smile and how loving she was. I remember how she always greeted me with a hug, no matter what the day was like or what was going on.”

Dawson doesn’t spend time ascribing a certain flower to each person. She picks the flowers at random. “It’s more about the practice of doing it. I use pen and pencil and pastels and crayons. I use simple notebook paper. It’s easy and affordable and yet, it matters.”

Dawson majored in art while in college, and initially had planned to specialize in ceramics before pivoting into social work. But she emphasizes that you don’t have to have a special talent to memorialize someone.

“Start with something that is most meaningful to you – music, words, a place. Think about how to share that in a special time and space. How can I create a rhythm or practice that honors that person? Simply putting thoughts down on paper – perhaps by writing a letter they’ll obviously never see – has power.”

Dawson references the picture boards we assemble for the funeral home and laments how after the service “suddenly, they’re gone.”  But a lasting memorial or practice is a way to honor that person as often as every day and offers ways to create something that grows and lasts.

Even taking a 10-minute walk while remembering someone is a way to make a difference in a purposeful manner: “The practice of connecting the emotion and feeling to a physical act is what’s important – and in that respect, the sky’s the limit.”

“Grief,” says Dawson, “is an important emotion we need to protect, because it never leaves us and is always evolving. Our lives transform around it. When we honor our grief by paying attention to and holding space for it, we have the opportunity to find new ways to love the ones we’ve lost.”

For more information about Emmanuel Hospice, call 616.719.0919 or visit emmanuelhospice.org

 

For the better part of 30 years, Don Walsh worked as a friendly sleuth.

That’s what good librarians do, after all. They discover things on behalf of others.

Now, at the age of 84, the tables have turned and it’s Emmanuel Hospice serving him.

And for that, Don is especially grateful and embraces any opportunity to share details about his relationship with the Grand Rapids-based health care provider.

“This particular hospice and its people go out of their way to make it special,” he says. “They believe in what they’re doing, and it’s a privilege for me to tell their story through me.”

Don was born and raised until the age of 14 in Traverse City, and in moving to Grand Rapids, grew to love what he now considers “a great place to be.”

As a youngster, he pedaled newspapers for the Grand Rapids Herald and Press – and before that, the Record-Eagle in TC – and later worked for his father, who owned a dime store in Wyoming called Wyoming Variety.

As a teen, he became interested in collecting things – baseball cards, stamps, coins – and at age 19 actually tried his hand at owning a hobby store, a venture that lasted but four months.

Eventually, he graduated from Aquinas College, and it’s there he met the love of his life, wife Kathie, with whom he raised five children. Don and Kathie live together with a 30-year-old grandson.

Don’s first jobs after college included teaching school in the Detroit area, but he remembers thinking “It was silly to stay there because we both loved Grand Rapids so much,” and they returned to settle in Eastown. He became involved in neighborhood issues to such a degree that he became the first chairperson of the Eastown Community Association. He and Kathie are long-time parishioners at St. Andrew’s Cathedral.

Professionally, he made his biggest mark with the Grand Rapids Public Library, splitting a 30-year career between the main site downtown and the Ottawa Hills branch.

In 2010, Don had heart bypass surgery, and four years later endured a stomach tumor and then prostate cancer. Around 2018, he began experiencing shortness of breath. Nearly two years ago, he was admitted to Emmanuel Hospice after being informed that he likely had less than a year to live.

Don says his time with the Emmanuel team has been “a remarkable season of working together, and there has never been a question of how much they care.”

He’s grateful for the ways in which Emmanuel lifts up Kathie as well as their children and grandchildren, “reassuring them all and helping them through the hard parts.” He particularly appreciated the support that allowed him to attend ArtPrize and see his daughter, Sara’s exhibit, with both comfort and peace of mind.

Emmanuel Hospice relies on an interdisciplinary team, with patients like Don and his family at its center, as it works to enhance the lives of those facing serious, life-limiting illnesses.

The interdisciplinary team brings together the appropriate medical providers, along with a social worker, home health aides, spiritual care counselors, complementary therapy specialists, volunteers, bereavement counselors and others to ensure all needs are met.

Don enjoys regular visits from his Emmanuel care team. His first encounter was with an intake specialist, who helped him understand his options going forward. Then he saw a social worker, who helped him sort through some red tape involving a hospital bill.

He occasionally requests time with a spiritual adviser, who helps him “talk things through about my life, my life after, and anything I want to have a dialogue about.”

Twice a week, an aide visits and, depending on the need, will bathe him, shave him and tend to other affairs of daily living. Once every two weeks, he receives massage therapy, which helps comfort the after-effects of a recent fall he incurred. Weekly, a nurse visits and helps him manage his medications and troubleshoots any new developments.

Receiving care in his home “is so much more than simply receiving services,” he says. “They’re there not only sharing their lives with you, but helping you along a tough journey. I know it’s a business, but that’s not what they ever project. It’s more of a mission.

“People,” says Don, “get the crazy idea that hospice is about dying. But it’s about living. And it’s about taking the time to relax and have someone care for you in such generous ways. This particular hospice goes out of its way to make that special.”

For more about Emmanuel Hospice, call (616) 719-0919 or visit emmanuelhospice.org

 

Alzheimer’s disease. It takes lives and devastates loved ones. There is no cure.

And predictions for the future aren’t promising, as the number of Americans expected to suffer from Alzheimer’s is expected to soar from nearly 7 million today to nearly double that number by the year 2050.

All of which means it’s more important than ever to seek experts in providing care and support to those affected by this debilitating disease who are well-versed in its symptoms and comfort regimens – like those employed by Emmanuel Hospice for one.

“We are serving more patients with dementia than any other nonprofit community-based hospice in West Michigan,” says Melissa Wedberg, director of business development at Emmanuel. “Thirty-four percent of our patients’ primary diagnosis is dementia, and the most common form of dementia is Alzheimer’s, so we feel we are the experts in providing end-of-life care for this population.”

Emmanuel is uniquely qualified in part because since its inception, it has served a significant number of patients with Alzheimer’s in various settings, including from its founding partners – St. Ann’s Home, Sunset Senior Communities, Brio Living Services and Clark Retirement.

Because Alzheimer’s is a terminal diagnosis, individuals with this disease are often eligible for hospice services, which focus on providing comfort and dignity at the end of life.

“A lot of people think hospice is only for people who are actively dying, but the reality is that if we can get into the home sooner to establish support for patients with Alzheimer’s and their families, we can have a greater impact on their end-of-life experiences,” Wedberg says. “So we encourage families to explore hospice earlier because there is so much we can do for them as experienced caregivers.”

That includes a holistic approach including traditional medical care offerings as well as a wide array of complementary therapies and services – everything from music therapy to massage therapy to a specialized Art Legacy program that combines self-expression with symptom management.

Emmanuel also is practiced at addressing issues tied to agitation that Alzheimer’s patients often experience – episodes that can be extremely difficult for the caregivers of these patients.

“By intervening with our therapies, we can often limit the need for psychotropic medication,” Wedberg says.

More than 80% of the help provided to older adults in the United States comes from family, friends or other unpaid caregivers. This underscores the necessity of caregiver education, specifically how to respond to a patient who asks the same questions over and over again.

Wedberg also emphasizes that there is a need to increase awareness of – and funding for – dementia-related illnesses, since dementia annually kills more people than breast cancer and prostate cancer combined.

That sobering statistic also reinforces Emmanuel’s recommendation that patients and their families act early on “to establish that support and customization of their care that can be so comforting during these journeys of change.”

When people with dementia start hospice at the 11th hour, “it can feel like a panic and a rush and can be traumatic,” Wedberg says. “But if we can get in earlier and establish relationships and trust, especially with someone who is confused, it can be a much more meaningful and impactful experience.”

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