“There’s a peace I’ve come to know, though my heart and flesh may fail. That peace comes to all of us in end-of-life experiences because of hospice.”
These were the words Cindy Scrobell used to welcome those who attended “The gift of hospice: A quilt of many colors” event held Thursday, Oct. 4, at Reuland’s Conference Center, and hosted by Ministry Home Care-Dr. Kate Hospice.
Over the course of an hour, guests of the event learned more about hospice, heard from those whose lives were changed by hospice care and listened to Karen Taylor-Good, Grammy nominated songwriter, perform several of her songs that relate to hospice, including “We are one,” “How can I help you say goodbye?” and “If not now, when?”
Throughout the entire program, “quilts” were the central theme, the foundation of the event.
“Tonight we celebrate the many pieces of the quilt that make up our community and the pieces that form the caring service we call hospice,” Scrobell said.
Hospice care – one in a million
One of the analogies of quilts that rang true is the uniqueness each one offers, compared to blankets that can be purchased – that are made in a factory “with a standardized look and feel.”
“[Blankets] are created on a mechanical loom, identical piece after identical piece,” Scrobell said. “Patchwork quilts are made of many different pieces, collected from a variety of sources – often with varying textures, colors, patterns, and shapes; some with much experience in the world – others, fresh off the bolt.”
The exclusivity of a quilt describes how hospice are is individualized for each patient as opposed to mainstream health care – set prescriptions and proven treatment methods for specific illnesses and injuries.
“While still provided by health care professionals, hospice care is uniquely crafted to fit each individual patient’s needs, desires, and end-of-life goals,” Scrobell said.
When a person is told they only have a few months left to live, hospice care and its ability to adapt to a their needs steps in – “a beautifully-crafted quilt, designed specifically for the person who has elected this care,” Scrobell described.
The entire hospice team – medical director, nurses, social workers, chaplains, bereavement coordinators, personal physicians, aides, support people, volunteers – come together as the quilt of hospice care, designed specifically for each patient’s needs, desires and end-of-life wishes.
The impact of hospice
While the patient is coming to terms with passing away, hospice care is there for family members who may also need support for accepting the loss of a loved one.
“We had no idea how very special the hospice caregivers would be and how important they would become to mom and our whole family,” Cindy O’Brien, guest speaker at the event, said. “We still talk about how staff injected daily doses of humor, which eventually helped my mom blossom into someone we hadn’t seen in years.”
Cindy was one of three speakers who painted a picture of how hospice care eased their family and their loved one through the final stages of death, describing how her mother, Alice, was made at home in Seasons of Life Hospice.
“Mom loved being surrounded by all of her favorite things, family photos, her own recliner, and even her silk ficus tree, placed in the corner of her room, adorned with white lights,” Cindy told the audience. “These lights were turned on each morning for mom to enjoy and turned off each night by one of the hospice caregivers. She was at home.”
For every step of Alice and her family’s journey, Seasons of Life hospice care professionals were there.
“They cared for mom, but they cared for us as well,” Cindy said. “They helped us understand the process of dying, telling us about each stage mom was entering, and finally, they helped us to say goodbye.”
Hospice care doesn’t have to be provided in a hospice. This is a service that can be brought to a home, nursing home or assisted living facility – “anywhere the person calls home,” Scrobell added.
And that’s exactly how hospice care served Tom Riemer and his wife, Kathy, who, after being diagnosed with cancer and going through treatment after treatment, called upon hospice for assistance.
“We were advised to enroll in a hospice program,” Tom said. “The likelihood of a cure was gone, and it was time to focus on Kathy’s quality of life.”
Between Tom’s care for his wife, a nurse from Dr. Kate Hospice that came every week and an aide that came twice a week, Kathy had the best care she could receive right in the comfort of her home.
“I was comfortable caring for my wife, and I even showed the nurses some techniques I developed to make her comfortable,” he said. “Every time I did anything for Kathy, she thanked me and I could see the gratefulness in her eyes.”
And when there was an emergency, hospice care was only a phone call away.
“Kathy became frail and one day as I was transferring her, she slipped right through my arms to the floor,” Tom said to the audience.
A short time after he called the hospice, a nurse arrived to help Tom and Kathy.
“Even though I preferred to do as much of Kathy’s care as I possibly could, it was a comfort to know that I had such great help when I needed it.”
Through the stages of grief
Hospice care does not stop after supporting a patient through the stages of death.
The loss of a husband, wife, mother, father, son or daughter is far from easy to accept. Hospice care providers are well aware of this and do everything they can to support family members through the stages of grief.
Sue Claflin is tragically all too familiar with the stages of grief having lost too many family members in too short of a time, including her husband, Dave.
“My life has been filled with loss. How have I coped? I’ve been living one day at a time and doing what needs to be done,” Sue said. “That may sound simple, but my journey has been strengthened by the support of the people around me and a willingness and ability to allow that support to surround me.”
Hospice soon became part of her support system, too.
“Following Dave’s death, Sandy, the hospice chaplain called to offer her support. I received a sympathy card and several phone calls from Connie DeBels, the bereavement coordinator, and started receiving supportive mailings from hospice.”
And she also decided to attend the grief groups hosted by Dr. Kate Hospice, which became an important outlet for her.
“The grief group is a place I can share my thoughts and feelings without concern of worrying my family and friends,” Sue said.
Continuing on through the stages of grief – numbness and shock, searching and yearning, disorganization and despair and reorganization and recovery – hospice care supports those who are suffering a loss every step of the way.
“When someone we love dies, they do not leave our hearts,” Scrobell said. “Their presence is still very, very strong, and it rips us apart knowing we will never hear their laugh, or touch their soft face, or feel their embrace around our shoulders again. A piece of the quilt is missing, and its absence can be overwhelming.”
The quilt that is hospice
In this past year alone, the Ministry Health Care-Dr. Kate Hospice and Seasons of Life Hospice impacted 386 people and their families in this area by providing end-of-life care.
“Thinking about hospice services as a quilt really helps to make more sense of it – and provides a great visual image,” Randy Augustinak, hospice volunteer, said. “I can picture a lovely patchwork quilt wrapping lovingly around a family, helping them to feel cared for and secure, holding them all together during a most difficult time in their life. What a gift.”
And as more people understand the pricelessness of individualized care, more turn to hospice in the final stages of life, Augustinak added.
“Did you know Ministry provides this comprehensive care – the whole quilt – to everyone, regardless of their ability to pay? So if they don’t have insurance, or if the insurance doesn’t cover everything, they still provide the same care. That is huge,” Augustinak said.
To learn more about hospice care, volunteer opportunities or to make a donation, call Randi Danner, volunteer/community outreach coordinator, Dr. Kate Hospice, at 715-356-8805.
“Together, we make up a quilt of humanity – a quilt enriched by all the different qualities we bring to it,” Scrobell said.
Sarah Hirsch may be reached at firstname.lastname@example.org