Knute Nelson Hospice care focuses on quality of life, support for patient and family

Don Carlson, of Alexandria, learned he had pulmonary fibrosis in 2011. He was in his 70s. The disease scars and damages lung tissue and makes it hard to breath. It is debilitating and eventually fatal.

Marilyn Carlson (front) and her daughter Nancy (right) have high praise for Knute Nelson Hospice, who helped care for Marilyn’s husband, Don, during his final year of life. Working closely with the Carlsons was KaLee Mohrman (Top), RN, Clinical Nurse Manager at Knute Nelson Hospice. Photo by Jim Palmer

Marilyn Carlson (front) and her daughter Nancy (right) have high praise for Knute Nelson Hospice, who helped care for Marilyn’s husband, Don, during his final year of life. Working closely with the Carlsons was KaLee Mohrman (Top), RN, Clinical Nurse Manager at Knute Nelson Hospice. Photo by Jim Palmer

When Don and his wife, Marilyn, first talked about the idea of hospice, he was reluctant.

“Dad wasn’t sure about hospice,” said Don’s daughter, Nancy. “He thought it meant the end. He thought he was giving up. I told him, ‘It is for you and mom. It will give you both better quality of life.’”

Although Don looked healthy on the outside, his body started to fail as his disease progressed. He decided to contact Knute Nelson Hospice. And as soon as the call was made, hospice support was started… the same day.

“We recognize that when people put both feet in, they have put a lot of heart in that decision,” said Brittney Thoreson, vice president of Knute Nelson Hospice. “We want to support them immediately. We will send our hospice staff out at any time, even if it is at night or over the weekend.”

Knute Nelson Hospice has a care team available for the patients. The family first meets with a registered nurse, who assesses the wants and needs of the family, answers their questions and develops a care plan. Care is provided wherever the individual calls home — whether that’s in a private residence, assisted living community, or skilled care center. For Don, his preference was to stay home.

“He wanted to stay in his home for the rest of his life, and we focused on making that dream come true,” said KaLee Mohrman, RN, clinical nurse manager, who worked with the Carlsons. “And with the help of Don’s wife, Marilyn, who was a fantastic caregiver, we were able to accomplish his wish.”

The lake was a special place for Don, and when he learned he could enjoy another summer on the lake, he was overjoyed. “Don fished on Lake Ida with his dad when he was 11. We raised our kids in Minneapolis, but we retired to Alexandria and Lake Ida,” said Marilyn. “This is where he loved to be.”

The Knute Nelson Hospice care team includes registered nurses, home health aides, a chaplain, a massage therapist, physical/occupational/speech therapists, volunteers, and social workers. Options to bring added joy and comfort range from pet therapy, GrandCare technology that connects families who live at a distance providing socialization, pontoon rides through Let’s Go Fishing, as well as the use of oils for relaxation, among other options. Whatever can provide comfort to the patient can be part of the care plan.

“Each person has different needs,” said Mohrman, “And those needs change, so each patient’s care plan is reviewed regularly to ensure everything is being done to make the patient comfortable. Our team has different backgrounds, experiences and expertise and collaborate to guide care plan decision making with the patients’ goals and best interests in mind. We involve our hospice medical director and pharmacist on care decisions and medications during this process.”

Hospice brought the Carlsons many special gifts. The first one was the gift of convenience. Because of his disease, he needed an oxygen tank and nebulizers with him wherever he went. Hospice made sure they had the equipment at both their home and lake place so they didn’t need to transport a thing.

Pain management was also taken care of immediately.

“When pain medication is needed, we can really make it happen quickly because our focus is on controlling pain,” said Thoreson. “We are available 24 hours a day, 365 days a year. We can bring relief right away.”

That relief can come without a trip to the doctor, but that does not mean a patient’s primary care physician is out of the loop.

“A lot of people think they are losing contact with their doctor when they enter hospice,” said Mohrman. “The doctor is always aware of what we are doing, and we don’t make any changes without them knowing. The patient can still see their physician if they want to or if they need to.”

The Carlsons didn’t know how long Don had to live, and there were peaks and valleys. During the valleys, they relied on hospice to help them through.

“His oxygen got too low several times,” said Marilyn. “We called hospice, and they would come right over. They once came at 5:15 a.m. to help get his oxygen levels back up. We were so grateful.”

Don, Nancy and Marilyn Carlson enjoy a boat ride on Lake Ida in 2015. Knute Nelson Hospice helped Don enjoy his lake home during his last summer. Don passed away earlier this year. Contributed photo

Don, Nancy and Marilyn Carlson enjoy a boat ride on Lake Ida in 2015. Knute Nelson Hospice helped Don enjoy his lake home during his last summer. Don passed away earlier this year. Contributed photo

The Carlsons needed medication, equipment, therapy and visits from nurses and home health aides. One of Don’s biggest worries was that hospice care would be expensive, and that it would financially impact Marilyn in her retirement years. His worries were calmed when he learned that Medicare would cover 100 percent of the expenses.

Hospice care is covered by Medicare, Medicaid, and almost all private insurance. And there is also a philanthropic element of hospice that fills in the rest of the cracks, which means no one is ever turned away for care, regardless of cost.

“We haven’t received one bill,” said Marilyn.

Another gift from hospice was simply peace of mind.

“It was such a blessing for us,” said Marilyn. “The hospice workers were like family. Don was at peace with the care he was receiving and that gave me peace of mind. He looked forward to the days when they would come over. It was like there were angels coming into my house. I felt really good about everything.”

“I live in Anoka, and it was such a peace of mind for me to know that I didn’t need to worry about either mom or dad,” said Nancy.

Every day was a blessing to the Carlsons and Knute Nelson Hospice helped make every day matter.

“Don was quite the jokester,” said Mohrman. “We always had a good time.”

“He couldn’t walk, because his oxygen would get too low, so he had a walker. We put a bicycle horn on the walker,” said Nancy. “He would sit and honk that horn. He would honk it and say, ‘just seeing if you were listening.’ Then he would say, ‘As long as you are up. How about ice cream?’ He was always joking around.”

And Mohrman would joke right along with him.

“He considered KaLee like another daughter,” said Marilyn. “And she was someone who I really trusted.”

Another familiar face was the chaplain, Michael Peterson.

“Pastor Peterson would come and play the cello and sing the old hymns we grew up with. He has a real comforting, relaxing voice and a nice sense of humor. He would have communion with Don, and they would sing the Lord’s Prayer,” said Marilyn.

These visits from a chaplain are an important part of hospice for many patients.

“We are very fortunate to have Pastor Michael,” said Thoreson. “He plays several instruments and can sing any song that you want to hear. He brings ‘church’ to them. And it is nondenominational so he can offer whatever the patient wants. That has been really amazing.”

There are also volunteer associate chaplains who meet with patients regularly. One of the Associate hospice chaplains is Wendy Zander, who has been volunteering at Knute Nelson Hospice for about two years.

“I visit with people and share with them the word of God,” said Wendy. “We read psalms, say a personal prayer, the Lord’s Prayer. And I also give hand massages to the women.”

Wendy reflects, “I really enjoy volunteering. I feel like I get more benefit than they do. We can add comfort at a time of crisis,” she said.

The role of the chaplain can be very important to patients, as well as to the family.

And if patient does not have faith, and does not want to have a visit from a chaplain?

“We honor that, too,” said Wendy. “It is their choice.”

Don had a strong connection with Peterson and cherished his visits. “Don really liked it when he sang, and he wanted Pastor Peterson to sing at his funeral,” said Marilyn. “And he did. That was real special.”

Knute Nelson Hospice took care of everything. They managed his pain, kept his spirits up, and were always just a phone call away.

“And they allowed Don to maintain his dignity throughout,” said Nancy.

Don was honored by hospice for his years of service in the U.S. Army through their “We Honor Veterans” program.

“Being a veteran is significant. We recognize their past accomplishments. It is well deserved,” said Thoreson.  “Each team member is trained to properly honor and care for patients who are veterans.”

Knute Nelson Hospice provides care to a 10-county area in central and west central Minnesota.

Knute Nelson Hospice provides care to a 10-county area in central and west central Minnesota.

Volunteers are a big part of Knute Nelson Hospice, helping in a variety of ways. One important way is providing respite to the caregiver.

“The caregiver needs to be able to step away and still feel confident that a person is there with their family member,” said Thoreson. “We have talented volunteers, and each have an interest in different things.”

“One might enjoy helping the family put photo albums together,” said Mohrman, “Another might provide housekeeping or bring their dog over to provide pet therapy.”

Knute Nelson Hospice can also arrange a five-day caregiver respite stay, which is available to all caregivers as part of the hospice program benefit.

“If a caregiver isn’t at their best, they won’t be able to take care of their spouse or friend or family member,” said Thoreson. “The social worker coordinates everything; it is an important time for the caregiver,” said Thoreson.

Volunteers even step in and help during the most difficult times.

“Our ‘11th Hour’ volunteer program provides added comfort to the patient and family during the final hours,” said Thoreson.

“Nobody wants to have anyone who is dying alone and so 11th Hour volunteers can be with the patient from day to night. They can provide relief for families by sitting with the patient, holding their hand or comforting them. Some family members haven’t slept in days so the relief is a big help.”

Don was diagnosed with a terminal illness in 2011. He started in hospice in 2015 and passed away on Feb. 4, 2016, at his home, just as he had dreamed. He was in hospice a little less than a year. Don and Marilyn got a chance to spend a great summer together on Lake Ida and had precious and positive memories right up until the end. And even his passing was a beautiful memory.  

“Don and I would always end the day in prayer. We would be thankful for another day and would pray that I would continue to have the strength to care for Don. We would always say the Lord’s Prayer.”

On Feb. 4, immediately after saying the Lord’s Prayer, Don took his last breath and slipped away.

“His passing was so beautiful,” said Marilyn. “So beautiful.”

Don and Marilyn would have celebrated their 50-year anniversary in July.

Following Don’s death, the hospice team was there to take care of Marliyn and help her through the days leading up to the funeral. And it didn’t stop there. Knute Nelson Hospice continues to serve the family 13 months after the patient passes away helping the families through the grieving process.

“We have a special dove release each year for families,” said Thoreson. “It’s said that if you whisper a prayer in a dove’s ear, the dove will deliver it to heaven. It is really neat.”

There are also Time of Remembrance ceremonies held quarterly to help families cope and remember their loved ones.

“It is wonderful to stay connected with the family, even after a patient has passed away,” said Thoreson.

Overall, the Carlsons couldn’t have been happier for the care they received and continue to receive from Knute Nelson Hospice. It was a hard decision to make, but Nancy and Marilyn both called it the best decision they ever made. They said the alternative would have really been bad for Don and their family.

“I think my mom would have probably hurt herself trying to care for Don, and I would have had to move home to take care of both of them,” said Nancy. “Hospice gave them both quality of life right to the end.”

“If we didn’t have hospice, it would have been a real struggle,” said Marilyn. “And he definitely didn’t want to see me struggle to take care of him. If anyone is in the same situation as we were, don’t hesitate a minute to choose Knute Nelson Hospice.”

Thoreson and Mohrman have seen a lot of success stories, and they credit the support behind them, the resources they have at their fingertips and especially those on the Knute Nelson Hospice team.

“Our team is amazing,” said Mohrman. “It really is.”

“It takes a special person to care for a hospice patient, and they are all in it for the right reason,” said Thoreson. “Our team is so caring and compassionate. They create relationships and really become a part of the family.”

To qualify for hospice, patients must have an order from a physician stating that they have a terminal illness with a prognosis of six months or less to live. Patients sometimes graduate from hospice and can return at any time. Mohrman encourages individuals to get started on a hospice program as soon as possible to receive the maximum support.

“Focus on the quality of life, instead of the length,” she said.  “People often wait too long to get started and wish they started hospice sooner.”

If you or a loved one are struggling with the terminal, life-limiting illness and want to learn more about the benefits of hospice care, call 320-759-1270 or visit www.knutenelson.org. Knute Nelson Hospice team members are available 24 hours a day, seven days a week.