Editor's note: This is a two-part series on hospice care in northwest Kansas. The first part ran on Saturday, June 1, on the Hays Post. See a link to that story below.
By CRISTINA JANNEY
Hays Post
Dalene Juenemann and her father, Dean, had to make the difficult decision to enter hospice care after he was diagnosed with bladder cancer.
“He was just such a social guy and someone was in a couple times a week,” she said. “They were checking in on him and it was that security blanket he had.”
“He didn’t want to be in and out of hospital care and not doing his activities, especially because of his age,” she said.
He didn’t want to go through aggressive chemo and he didn’t qualify for a bladder removal because of his age.
“He chose quality of life,” she said.
"It was that final decision that we are done with everyone wanting a piece of me. I'm just going to enjoy life," she said.
Dalene's father, Dean Shearer, was a patient of NWKareS, Hospice of Northwest Kansas, which serves 16 counties from Interstate 70 to the Nebraska border and Trego County to the Colorado border.
Dalene and other family members who have been helped by hospice, as well as hospice volunteers, agreed to tell their stories in hopes of easing fears and urging other families to choose the service.
Dalene is a former resident of Hays. She now lives in Olathe, but her father was living in Norton.
Dalene visited her father every two weeks, but hospice helped fill the gap. Hospice staff contacted her and gave her regular updates on her dad’s condition. He was a hospice patient for about six months before he died.
Dalene said that finding medical supplies could be challenging because her father lived in a rural area. The hospice staff ensured he had all the medical supplies he needed.
“I find when I’m trying to encourage people that I get in contact with, it’s hard to stop putting their loved ones through all that because they’re just not ready to let their loved ones go,” Dalene said.
“I’ve also talked to someone that went ahead and did it all and said I wish we had never put him through it,” she said. “He would have had much more quality of life.”
Dalene said the social worker talked to her about her feelings and helped her prepare for her dad's death. She and her dad were very close.
"It’s a process. It’s more of an acceptance then," she said. "You’re never ready to say goodbye, but there’s very much an acceptance of what you’ve got going on in your life.
"You don't feel like you are going it alone," she said. "Because there are so many people there who you can lean on, and they are so knowledgeable of everything."
She said the extra care hospice offered allowed her to just be a daughter to her father as he was dying.
"My dad was so active. To be able to die like this with so much dignity and at home the way he wanted to, it was beautiful," she said. "I think as much as being with someone when a new life comes into the world, what an honor and blessing my brother and I felt it was to be there with our mom and our dad."
"I felt all of [the hospice workers] have supported and helped us immensely," she said. "Don’t cheat yourself of having such a great experience."
On the day her father died, the hospice nurse, Norma, who had been working with Dean, volunteered to come to his bedside on her day off.
"Once she got there, he just let go and let everything take its course," Dalene said.
"I was telling Dad to let go and goodbye and I said, 'Just go toward the light, Dad.' Norma was standing at the door, and she said she just saw this tear come down the side of my dad's face, and that was it.
“That is the kind of peace you want for your family members who pass,” Dalene said.
Cathy Harrison's husband, Don, was a hospice patient. Her family had a unique perspective. She and Don had been funeral directors in Colby for more than 40 years, and Don had been a long-time hospice board member.
“In the families who we served, we could see how hospice services coming in during those last months and during those last weeks and even last hours helped the family be healthy in their grief," Cathy said.
She said hospice helps guide people through what to expect in the dying process.
“If you have decided to make that decision to take care of a loved one at home, there is always that question of ‘What’s going to happen?’ How am I going to know?” she said.
"They really come alongside you in that journey," she said, "and help you begin that grieving process. When you know that person is terminal, you begin that grieving process before they are even gone."
“If that starts out in a healthy way,” she said. “Then it helps with healthy grieving after they’re gone.”
Cathy said it was important for her family to have her husband at home during the last seven months of his life.
Hospice staff members made regular visits to help assess Don's health.
"It was an easy decision to know it was time to have some help with being here at home," she said, "and our familiarity made it an easier decision."
Cathy said the hospice staff was with them through their journey with Don, even after his death.
"We were walking the journey and we were doing it with a lot of faith. I had a real determination that our home would be filled with peace and joy as Don made his final journey home," she said.
"I would tell them it is one of the final gifts that they can give to their family," Harrison said of other families considering hospice care, "not only to their loved one … but it's a gift that you give to your family that brings you together that allows you to open up conversations."
“It’s nice to have someone in a very loving and comfortable way guide you in some of those difficult conversations,” she said.
In other people she has dealt with as a funeral director, she has encountered families who don’t want to talk about the fact that someone is dying or the person who is dying doesn’t want to talk about it.
“It’s such a healthy process when you can open up about it and talk about it, and you give that loved one permission to visit with you about any concerns they may have and fears they may have, and the opportunity to say goodbye,” Cathy said.
“I think hospice gives you that opportunity to say goodbye to your loved one in such a warm and compassionate environment,” she said.
Volunteers
Volunteers can be an integral part of hospice services. Medical training is not required.
Volunteers serve as companions to patients and provide respite care and support for families.
Sherry Woodside has been a hospice volunteer for nine years. She encountered many hospice staff working in a pharmacy in Phillipsburg and admired their work.
When time became available, she decided to become a volunteer.
Sherry primarily visits patients in nursing homes. She talks with the patients, although some have memory issues and might not remember her name.
“I had one lady who liked to color in adult coloring books, and we colored,” she said. “Everyone is a little different in what they are able to do.”
She watches TV with some patients.
“I had one lady who really liked to go to the church service they had Sundays at the nursing home in Philipsburg, so I tried to make it a point to try to always be there that week to go with her,” she said.
One patient with ALS couldn’t speak anymore, but she loved looking through cookbooks and pointing to her favorite recipes.
“It’s just having someone else to talk to, to have an outside voice that’s not a family member,” she said.
Sherry said she has found her time as a volunteer rewarding. Families are very appreciative.
“The family sends thank you notes, or they say, ‘My mom talked about you a lot,’” she said, her voice beginning to crack. “I counted up the other day, and I think I have had 30 already.”
Phyllis Tucker, who is from rural Smith County, said she became a volunteer to pay it forward. Her dad died suddenly, and she wasn't able to be with him. She had seen the positives of hospice when her aunt used the services.
She was her aunt's caregiver, but she Phyllis lived three hours away.
Hospice staff and volunteers kept Phyllis updated on her aunt's condition when she couldn't be with her.
As a volunteer, Phyllis does the same thing for the families she serves.
Most of the patients with whom Phyllis works are in nursing homes.
“So many folks don’t have local family,” she said.
“I go in and visit the patients, and then I text their daughter who lives in Wichita,” she said. “I can be that eyes on.”
Often, Phyllis just chats with her patients during visits. She said the patients appreciate seeing someone who chooses to come for visits.
“It’s an honor to be with people in those last days of their lives,” she said, “to hear their stories and to get to know them in a different way.”
“One patient said, ‘You’re not here because it’s your job. The volunteers come because they want to,'” she said.
She said hospice volunteers and staff gave her peace of mind in the last few days of her aunt's life.
“Most of us don’t have any experience or training and all of the sudden we are taking care of a person in this stage of life that we’re not familiar with,” Phyllis said.
“I was there for her last few days and to have some there who told me I was doing a good job,” she said. “That we were doing it right, the pain medication right, if she didn’t want to eat, we weren’t feeding her, and that was OK,” she said. “The thing that you don’t necessarily have the good instincts for.”
She said being a hospice volunteer has been very rewarding, especially in a patient's final moments of life.
She called being with someone when they die a mystical moment.
“That holiness,” she said.
Phyllis urged others to volunteer with hospice. The number of volunteers with NWKareS has dwindled since the pandemic.
There are many ways to volunteer. Some volunteers help with paperwork. Some volunteers at HaysMed Hospice Care don't see patients. They bake cookies and help with memorial or bereavement services.
The HaysMed Hospice Memorial Service is offered twice yearly, with the upcoming fall memorial service on Oct. 20. This service is specific to hospice patients who have been cared for and is not open to the community or public.
For more information on volunteering for HaysMed Hospice Care, call 785-623-6200.
You can also assist hospice by donating monetarily.
To donate to or volunteer with NWKareS call 800-315-5122 or go to www.hospicenwks.net/donate.
You can donate to HaysMed Hospice through the HaysMed Foundation, either online or by mail. The foundation accepts credit cards, Venmo, or PayPal. The website is https://haysmedfoundation.org/.
You may designate your donation to HaysMed Hospice or direct it to the individual’s memorial, and the HaysMed Foundation will transfer the funds to the memorial.