Lasting memories before saying goodbye
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By ERIN ANDERSEN/Lincoln Journal Star
When her grandfather was diagnosed with terminal cancer, 11-year-old Alaina Rohnke gave up her bedroom so he could move back home to Lincoln.
Over the next six months, Alaina and her brothers, Greg, 17, Derek, 15, and Caleb, 8, used the time Ron Matthiessen had remaining to make memories.
Alaina wrote poems for her grandfather. Drew him pictures. Told him stories. Read to him. And when Denice Schroeder, a nurse with Saint Elizabeth Hospice, came in, Alaina helped with her grandfather’s care — listening to his heartbeat, taking his blood pressure and counting respirations.
For her Oct. 17 birthday, Alaina asked for donations to hospice in her grandfather’s honor, recalled her mother, Cindy Rohnke. She collected $100.
Ron Matthiessen died Dec. 4.
As difficult as the loss has been, Cindy Rohnke is glad the family could all be part of Matthiessen’s final months. They have memories they will carry forever — including a tracing they each made of their grandfather’s hand.
Looking back, it wasn’t always easy, Rohnke said.
“We had family meetings — a lot,” she said. “So everybody could talk about what they were feeling with Grandpa and stuff.”
Death and dying are difficult issues for everyone. Often the tendency is to protect or spare children from the pain.
“But children need to be participants,” said Kenneth Doka, senior consultant to the Hospice Foundation of America and professor at the College of New Rochelle in New York. “They need to be supported. They need respite. But they do need to be involved.”
And above all else, they need honesty, Doka said.
When Bev Prucha’s husband was electrocuted on the job in 1983 and left her with two preschool children, people “protected” their children from hearing about it.
“So there wasn’t a lot of discussion,” recalled Prucha, co-founder of Charlie Brown’s Kids, a grief support network for children who have had a parent die. “Talking to kids openly about it was a new concept. It was hard to break through. But we all knew it was a good thing to have them talk about it,” she said.
Twenty-five years later people are still reluctant to include the children — which does a disservice to the dying person, as well as the children they leave behind, said Pam Dinneen, co-founder of Mourning Hope, a grief resource program for families.
“By excluding them they don’t have enough information, and they fill in the blanks themselves,” she said. “Often those things are much scarier than dealing with the reality.”
And using euphemisms like “passed on,” “lost” and “eternal slumber” only add to children’s confusion and fears, Prucha said. Children wonder why no one is looking for the “lost” person or why someone who is “sleeping” never wakes up.
Use real words like death, dying and died, she said.
When Shawn Kelley was diagnosed with cancer in September 2002, he and his wife, Karin, decided to be completely honest with their three sons: Hunter, now 12, Logan, now 9, and Jackson, now 7.
During Shawn’s four-year battle with the disease, the Kelleys always sought to keep a balance with faith, hope and optimism and the ups and downs of countless tests, treatments, gains and setbacks, Karin recalled.
On May 18, 2006, Shawn died at his home. Five days earlier, the family prepared the boys, telling them their father’s body was giving out, and while they still hoped for a miracle, they knew it was likely Shawn Kelley would die.
Two years later, Karin, Hunter, Logan and Jackson take each day as it comes. Some days are harder than others. But looking back, Karin is confident the family handled Shawn’s illness and death in a healthy way.
“We would try and do things as normal as possible,” Karin said recalling Shawn’s last years.
Despite Shawn’s failing health, they were all able to take the family’s annual ski trip to Copper Mountain, Colo. And to date, they have continued that family tradition — knowing it is something Shawn would have wanted, and something the surviving Kelley family members need.
“You have to pick and choose what traditions you are going to continue on with and what ones you will leave where they were,” Karin said.
What to do
There are advantages — as well as disadvantages — to be forewarned about death.
One of the biggest benefits is having time to say what needs to be said, to do things you’ve always wanted to do, and to know enough to appreciate all the special moments.
But as Doka points out, it is also a very difficult time. It’s easy to be unrealistic about what you can accomplish, Doka said in a telephone interview.
“At best this will be a bittersweet time,” he said. “Family members are torn between making the best of these last moments; dealing with a desire that everything go back to the way it was, and maybe another desire that they wish it would all be over.”
Despite desires, no one is going to be their best at this time — especially children who have less patience, understanding and coping ability.
It is important that both the child and the dying person have choices in when and how they want to see each other, Doka said.
Families need to remind themselves that children are just that, he said. Young kids are egocentric, and so they may make selfish-sounding comments like: “I’m mad at Daddy. He doesn’t play ball with me anymore,” or “Grandma is always too sick to play.”
They don’t mean to be hurtful. They just are stating it as they see it, Doka said. Rather than chastise them, empathize with them and find ways for children to do the activities they miss.
However, if children’s behavior is inappropriate, discipline them for that misbehavior, Doka said. Just don’t add the caveat that they should behave better because the person is dying.
Remember that everybody needs a break and children still need attention, he said. Find opportunities for children to get respite “even though the tendency is to want to circle the wagons and keep everybody close around you,” Doka said.
Karin Kelley agrees. She had to force herself to accept help from family and her church. She often reminded herself that the boys needed to do the things they enjoyed, so she encouraged them to go camping, fishing and hiking with their uncles and grandfather — things they used to do with their dad.
At home, she captured life’s special moments. She made a scrapbook for each of the boys.
Whenever possible, they did things as a family.
Mourning Hope’s new program, Hearts of Hope, for children who have a seriously ill family member, helps children discover how they can be helpful hands to the sick person — just as Alaina helped with her grandfather’s physical care.
“Touch is so important and meaningful for both people,” Dinneen said.
Keeping memories alive
You don’t just go back to normal after someone dies, Prucha said.
Children should be encouraged to remember, talk about and honor the deceased.
There will always be that empty spot, Prucha said.
Families and children need to — and should — acknowledge that.
On Shawn Kelley’s birthday, June 23, the entire family gathered to launch balloons with messages to him.
In the fall, Karin Kelley tries to take the boys on a little family getaway.
“Fall is a hard time. Shawn loved the fall,” she said.
Each Christmas they “adopt” a family with a child at the University of Nebraska Medical Center,
“It helps when you reach out to others. That is the healing part,” Karin said.
And on the living room coffee table sits a special journal Karin and the boys picked out after Shawn’s death. Everyone is free to write or draw in it when the mood hits. Sometimes they share a memory. Sometimes they share what happened that day.
“Whatever is on their mind,” Karin said.
“I have written in there things that I want them to know about their dad that they might not know,” she said. On Aug. 20, the date of Shawn and Karin’s anniversary, she wrote about their wedding day and how she met their dad.
The journal is always available to family members.
In many ways, it keeps Shawn right there — in the center of their lives and the heart of their home.
“We talk about Shawn a lot, but not enough,” Karin said. “We all think about him all the time. We think we are sharing that information, but we are not as much as we think we are. It is a good thing to share those memories.”
Reach Erin Andersen at 473-7217 or eandersen@journalstar.com.
Need help
* Charlie Brown’s Kids — A support group for children who have had a parent die. Group meets first and third Thursdays of each month. Call: 483-1845; visit www.charliebrownskids.org
* Mourning Hope, 4919 Baldwin Ave. — A grief network for children, teens and their families. Has books, videos and resources for families. Offers support groups. Also offers Hearts of Hope, a support program for families with a seriously ill person. Call: 489-8989, visit wwwmourninghope.org
Grief Camp
The ninth annual H.U.G.S. Camp is June 14 at the Lincoln Children’s Zoo, 1222 S. 27th St. Open to children ages 5 and 18 and their families who have experienced the death of a family member or friend.
Camp runs 9 a.m. to 3:30 p.m. Cost: $15 per family includes snacks, lunch, materials, a T-shirt for kids and train ride. Advanced registration required by June 1. Call: 441-4900 or visit www.hugscamp.org.
Guidelines for helping children deal with grief
1. Don’t assume that children have no awareness of death.
2. Accept that most children are naturally curious about death.
3. Realize that death and loss are present in children’s fantasy lives.
4. Be aware that healthy, normal children are likely to encounter death-related events in their own lives and through the media and in the world around them.
5. Appreciate that most children have thoughts and feelings about death, and that they make an effort to understand death when it enters their lives.
6. Realize the concept of death is not a simple and uncomplicated notion.
7. Understand that children are not likely to grasp each of the central dimensions of the concept of death or all its implications at once.
8. Realize that one good way — perhaps the only effective way — to gain insight into a child’s understanding of death is to establish a relationship of trust and confidence with the child and to listen carefully to the child’s comments, questions and concerns about death.
9. Make sure to answer children’s questions about death in an honest, accurate and helpful way.
10. Frame your answers and responses in ways that are suitable to the child’s capacities and needs. Don’t be afraid to say, “I don’t know.”
Source: Dr. Kenneth Doka of the Hospice Foundation of America
Making memories
“Make memories while you still have the opportunity,” said Pam Dinneen, co-founder of Mourning Hope. “It is important to keep them in your heart, whether you are with them or not.”
Things you can do while the person is still alive:
* Take photos. Draw pictures.
* Write things down.
* Write a letter and read it to the person.
* Spend time together. Go outside for a walk, or just sit in the sun, or go for a drive to see some favorite places.
* Make videos — of the person leaving a message to a child; of children including the person in their day.
* Make a scrapbook together.
* Share stories of favorite times, childhood, favorite memories and favorite things, from colors to food to movies.
* Read storybooks that will help children understand illness and death.
* Exchange hearts — give the child and the ill person matching jeweled/beaded hearts to carry to symbolize the person is always with them.
Things to do after a person has died:
* Make a memory/comfort pillow out of a piece of the loved one’s clothing. Children can keep this on their beds and cuddle with it.
* Allow children to select some keepsake that remind them of the deceased — regardless of how invaluable it seems.
* Help children make a memory box in which they can hold keepsake and other mementos of the person.
* Take a gravestone rubbing.
* Continue some of your favorite family traditions.
* Make note of the loved one on special occasions and holidays.
* Celebrate their birthday with a balloon launch, a picnic at the cemetery or by eating their favorite food.
* Write a one-word message on a rock and leave it at the grave site. Words like: love, peace, faith, hope.
* Blow bubbles at the cemetery.
* Create a memory garden in your backyard.
* Talk about the person whenever you want.
Sources: Pam Dinneen, Mourning Hope; Bev Prucha, Charlie Brown’s Kids; Hospice Foundation of America
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