You feel like you’re in the middle of an old-fashioned taffy pull – being stretched at both ends and there’s no way out.

Welcome to the “sandwich generation,” which finds you caring not only for your own children, but also your parents or in-laws or a complicated combination.

“It’s a lot of juggling at both ends – caring for your own children and/or grandchildren, but also making time for mom or dad and the changing needs they have as they age,” says Jan Amato, business development specialist for Emmanuel Hospice. “One minute, you’re making lunches for your school-age kids, and in the next, you’re arranging all kinds of medical appointments for your parents.

“There could be as many as four generations involved at once, and there you are, trying to keep everyone happy and healthy.”

The accompanying challenge: Dealing with a heavy dose of stress if you’re the designated driver for all those people looking to you for everything from meals to transportation to housing to emotional, physical and spiritual needs. Add in a serious, life-limiting illness, and it can feel entirely overwhelming.

In her capacity at Emmanuel Hospice, Amato has seen first-hand the effects of those stress-inducing conditions, and notes how Emmanuel is equipped to help not only its patients, but their family members cope and develop strategies for challenges posed by being caught up at both ends.

“A cardinal rule,” she emphasizes, “is regularly carving out some time for yourself, even if it’s a half hour to read, take a bath or work on a project, or just sit quietly and take in the present.

“You need to find something that’s enjoyable to you, and then take the time to do it, and without taking that phone call.”

Amato also has personal experience with the juggling act of the sandwich generation. Her father-in-law is located in Ohio, while Amato and her husband still reside in Michigan. To help care for him, her husband and his siblings take turns visiting. But Amato says it’s typical for one sibling to absorb more responsibility for mom or dad, and that can lead to stress and friction.

“We try to walk that journey with the patient and their family, and a lot of times there are multiple family members expressing different opinions on how that journey should look.”

Amato says it’s important for caregivers to develop a self-care strategy that includes:

• Building a strong support system.
• Setting aside time for self-care and staying engaged with your hobbies and interests.
• Not discounting what others can do; lean on your network and be willing to delegate.
• Keeping priorities organized.

National platforms like CaringBridge also offer helpful resources for navigating challenges of being a caregiver with tools to help you share and communicate updates with loved ones, as well as ask for and receive support.

“At Emmanuel Hospice, we’re qualified to connect people with professionals who specialize in counseling that helps those who might feel overwhelmed as a caregiver at both ends,” Amato says. “People need to know it’s OK to have that third party intervene.”

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

OK, you’ve made the mid-April tax deadline. Congrats. Now what?

Here’s a thought: Get something arguably as important – or even more so – in order next.

We’re talking about critical health care decisions in the event you’re not able to communicate decisions yourself – decisions you can define in an “advance directive.”

That’s the aim of National Healthcare Decisions Day on April 16 every year, which is typically the day after taxes are due.

Unlike taxes, advance directives aren’t something you’re obligated to execute, but experts agree you’ll feel immense relief should you take on the task. You’ll then have legal documents in place to safeguard the ways in which you want important decisions made about your health care if you are unable to communicate them yourself due to an accident, illness or other factors.

“Having a conversation is a good place to start, after you’ve gone through the contemplative part of it,” says Sara Lowe, executive director of Emmanuel Hospice in Grand Rapids.

Lowe, and scores of her employees, have witnessed firsthand the friction that can ensue when advance directives aren’t in place, and loved ones start arguing about what dad or mom would want when they can no longer decide on their own.

“What we’ve seen is how there is so much more peace in the family when those documents are in place,” says Lowe, noting that setting up advance directives “can serve as a final gift of clarity for your loved ones.”

Conversations should eventually include the person or persons you’re confident about choosing to serve as your durable power of attorney for health care decisions revolving around the types of medical interventions you do and do not want dependent upon the situation.

“Those conversations help determine who the right person for that is,” says Lowe, emphasizing that you shouldn’t automatically choose your spouse or firstborn, but instead that person you can best trust to carry out your wishes.

Advance directives remain in effect until you change it, so it’s a good idea to review your advance directives on an annual basis, especially if your life has been affected by divorce, separation or other family crises that might affect your initial choice.

“You never know when something unforeseen is going to happen,” she says.

Lowe understands that some people find it a daunting task to discuss death and dying. Her suggestion?

“You don’t have to do it all at once. Take your time,” she says. “Think about it, then have those conversations. Break it up into smaller pieces, but then act.”

And she offers this to consider, “It’s always better to have advance directives in place and not need them, than it is to need them and not have them.”

A lawyer is not needed to fill out an advance directive, but witnesses are required for the document to become legally valid. For more information about advance directives, consider visiting websites like CaringInfo.org, where you can navigate to the state you live in for specific guidelines, and download forms. You can also learn more via the National Hospice and Palliative Care Organization at nhpco.org.

Once your advance directive is complete, be sure your doctors have a copy, as well as everyone who might be involved with your health care decisions. Store the original document in a safe but easy to find place. Avoid locking the document away, so it can still be accessed by loved ones if you’re unexpectedly hospitalized.

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

 

You might say that for hospice music therapists like Roger Scott, they perform their work in the key of C, where the “C” translates to care, compassion and comfort.

Along with colleague Miranda Eden, Scott is one of two board-certified music therapists employed by Emmanuel Hospice. He considers the complementary therapy the twosome provides arguably as vital as traditional physical care administered by medical staff. And it’s a popular choice among patients and their loved ones. In 2023, Scott and Eden made more than 1,770 patient visits.

“It’s a very intense, rewarding experience,” says Scott, who hails from California but settled in Michigan after earning a degree in music therapy at Western Michigan University.

He traces his interest in music therapy back to the year 2000, when he started serving as a member of the U.S. Army Europe Band and Chorus, primarily as a vocalist.

“When we’d perform for soldiers, it really seemed to make a difference to them,” he says, noting that after his discharge, he went to a conference for music therapists and “fell in love with it.”

At Emmanuel Hospice, music therapy is offered as one of many ways to enhance a patient’s life, engage the senses and create joyful memories. During the last two years working with Emmanuel, Scott has discovered that every day – and every patient – is different.

During a session, he’ll often sing and strum the guitar, inviting patients and their caregivers to sing or hum along. He’ll even record a patient’s heartbeat and then marry it to music, so it can be enjoyed time and time again.

Heartbeat recordings are an opportunity for patients to create a legacy gift for their loved ones. The accompanying music often speaks to a review of their life and serves as a keepsake for caregivers to cherish after the patient has passed.

What patients might need in the way of music therapy is largely tied to how they express themselves to any one of their care team members. Communication is key among Emmanuel colleagues in order to provide holistic care that supports the patient’s mind, body and spirit.

The end result often manifests itself in a reduction of the patient’s pain, a chance to work through emotions and as a special way to recount memories as they embark on an otherwise difficult journey. Music therapy can be employed at a hospital, home or other living center – wherever the patient is receiving care.

Scott has played everything from rock to pop to Gregorian chants for his patients, and says it’s surprising how many requests he fields for arias from operas, such as “Nessun Dorma,” which debuts during the final act of the Puccini opera “Turandot.”

Whatever the music, Scott says it’s common for the patient to choose something near and dear – hymns or folk tunes or something from their heyday – that reminds them of significant people and events from throughout their lives.

“Often times, people will light up when they hear something that was popular when they were younger,” he says. “It meets their needs, and can help them work through a tough time.”

Music therapy can bring up a range of emotions while helping manage anticipatory grief, pain and anxiety. It can provide great comfort, as well as sensory stimulation and self-expression.

“It’s always hard not to smile when they’re smiling,” Scott says, “and it’s hard not to cry when they’re crying. You do the best you can for them, and in doing so, seek those moments when you can bring patients and their family members to a place of peace.”

Music therapy is one of several complementary therapies and services Emmanuel Hospice offers. To learn more, visit EmmanuelHospice.org/holistic-care or call 616.719.0919.

Two sobering facts to consider: One, that heart-related disease is the leading cause of death among U.S. adults. And two, that hospice care is vastly underutilized by that very population.

“There’s a big gap,” says Melissa Page, director of clinical services at Emmanuel Hospice. That’s why she and her colleagues have been aggressively advocating for more education and awareness revolving around Emmanuel’s Heart & Soul Advanced Cardiac Program.

It’s a toolkit of sorts, linked in with a program developed by the National Partnership for Healthcare and Hospice Innovation in collaboration with the American Heart Association. The goal is to ensure patients with heart disease and their loved ones are well informed so symptoms can be managed safely at home, reducing trips to the ER or hospital.

A mainstay of the collaboration is a 32-page Advanced Cardiac Care Guide, which includes valuable information on everything from recognizing symptoms to dietary recommendations. Many patients living with end-stage heart disease are burdened by visits to the doctor’s office, emergency room and hospital due to breathing difficulties, edema, fatigue and other worsening symptoms.

Such exacerbations can often be prevented or managed by hospice and palliative care, says Julie Chambers, a nurse case manager for Emmanuel.

“With hospice care, it’s more about providing comfort,” Chambers says. “And that can mean fewer visits to offices and more time with family enjoying a higher quality of life while still collaborating with a cardiac team to treat anything from breathing issues to swollen limbs to fluctuations in weight and appetite.”

“We’re seeking ways to include people already involved with the patient’s care, while also folding in all the services our organization provides,” Page adds.

To that end, Chambers and Page and other team members at Emmanuel Hospice are constantly looking for ways to help make cardiologists and other professionals aware of the benefits hospice can provide.

“When hospice care is part of the formula, we see lower anxiety levels, less fear of the unknown and fewer feelings of helplessness,” Chambers says. “It’s all part of putting the patient at ease, a different culture of care.”

Support might include regular visits from Emmanuel Hospice experts, and can extend beyond traditional care to complementary therapies and services involving everything from massage to music to essential oils.

Chambers and Page emphasize that people affected by cardiac disease either personally or through a loved one can reach out with questions at any time, even if they’re not experiencing end-stage symptoms.

“Death doesn’t need to be imminent,” Page says. “It’s OK to simply call and say, ‘I’d like to know more about this.’”

“It’s also important for people to know that they’re not ‘giving up’ when they reach out to us,” adds Chambers. “We’re fighting against that stigma, that ‘If I’m going on hospice, I’m giving up.’ No. You’re choosing what you want, and we’re here to honor that choice.”

For more information about Heart & Soul, visit EmmanuelHospice.org/cardiac-care.