Saturday, November 22, 2014

Supporting Children When Someone They Love Has a Serious Illness Part 3 - Guidelines for Children 6-8 Years Old

Part 3 of our 6 part blog series sharing coping tips to help support children when someone they love has a serious illness. 

Guidelines for children 6 – 8 years old

Children between the ages of 6-8 will often feel anxious during a serious illness.  They fear being left and can feel they are the cause of family distress. They often blame themselves for bad things happening. Their actions are often tied to what is happening around them.  They may feel rejected when the person who is ill is less able to be part of usual family activities.

Behaviors to expect:
  • Showing many different feelings such as anger, anxiety, sadness, fear, and feeling left out or forgotten
  • More conflict between siblings
  • More acting out or sulking when separated from parents
  • Strong requests that their personal activities not be changed and loud protests when activities are changed
  • Concern about how the sick person looks and feels. Concern about changes in the person’s ability to talk or do things with them.
  • Becoming more clingy, stubborn or demanding

How to help:

Give the child information about the disease
Name the disease and write it down. Talk about how it changes and how the sick person may look or feel over time. Talk about treatments and causes.  Reassure children that nothing they did caused the disease. Let them know that it cannot be caught from the ill person.  Prepare explanations ahead of time, since children this age tend to ask questions that are very exact and they often include a lot of "why" questions.

“The doctors have told me that your grandpa has Parkinson’s disease and is going to die.”

“Parkinson’s changes the way grandpa’s brain works and it makes him shaky and maybe more tired than before.  It’s not like a cold because grandpa can’t give it to you or anyone through his germs.  This disease isn’t because of anything that you did or said. 

“The doctors will work very hard to make sure your grandpa isn’t in pain.  You will probably have questions about this.  Remember I am here to answer any questions that you have and that I love you very much.”

Talk with them about changes in the person’s illness and treatment
Update the child often.  This helps them feel valued and included.  When they feel close to their family members, they are better able to deal with the stress. When possible, let children talk with the doctors, nurses, and social workers caring for the ill person.

Children this age tend not to ask questions. This can be because they fear upsetting their parent or fear that the answers to their questions will be too scary. They may also worry that they will make the illness get worse by talking about it. Try not to let their lack of questions keep you from talking about it.

“The doctor has told me that the medicine hasn’t worked.  This means that the cancer is growing.”

“I’m hoping that something will happen and the cancer will stop growing on its own, but I’ve heard that this probably won’t happen.”

“Remember that this cancer has nothing to do with anything that you did or said.  I don’t know why I got this and I am really mad and sad about it.” 

“Most of all I want you to know that I love you and I want so much to be alive and see you grow.”

Help children understand that what they are feeling is normal
Talk openly about how the situation is hard for everyone.  If the person who is ill acts differently, explain that this is caused by the illness and not by a lack of love or caring.  Understand that children may still be angry about the changes within the family. Even if they’re not told that the person is dying, they will often fear this and may keep that fear inside.  Let them know that it’s okay to show their feelings. Allow them to see your own feelings and tell them that you will still take good care of them even though you are sad or mad or scared.  If children are struggling in school, let them know that this is normal given what they are going through and that it is temporary.

Prepare ahead of time for changes in routine
Prepare children for any situations where both parents may have to leave the house unexpectedly.  Talk ahead of time about the plan so they know what to expect.

“Your dad and I are going to be spending a lot of time at Grandma and Grandpa’s helping with Grandpa.  We have a plan for when we aren’t able to pick you up from school.  Your Aunt Sue is going to give you rides home from school and to soccer practice.  She loves you very much.  We’ve talked to her and she’s promised to take good care of you, just like she does with her own kids.  We don’t know if this will happen, but we wanted you to know these plans just in case.”

Allow time for play or art
Play is the natural language of children and a healthy way for them to deal with stress.  It allows them to feel a sense of power and control. 

Be an advocate for your child
Talk with teachers and other adults in the child’s life about the illness. Try to be consistent with who cares for the child when you cannot. Try to chose people who relate well with the child. Extra praise can help children’s self-esteem during this stressful time.

Friday, November 21, 2014

Supporting Children When Someone They Love Has a Serious Illness Part 2 - Guidelines for Children 5 and Under

Part 2 of our 6 part blog series sharing coping tips to help support children when someone they love has a serious illness. 

A child’s age and maturity will affect how he or she reacts to the news that someone they love has a serious illness.  The guidelines below are broken down by age and offer ideas on how to support children at different levels.

Before age 3
Babies and toddlers live in the moment.  They feel the emotion of what is happening around them even though they don’t understand illness.

Behaviors you may see:

  • May be more fussy
  • May be harder to soothe
  • May “regress” or begin to act like a younger baby. This can include their sleeping, eating and toilet habits. For example, a toilet-trained child may return to needing a diaper again.

How to help:
Provide security and as much routine as possible
A caring presence and a regular routine help babies feel safe and secure. Try to keep a regular schedule for meals, naps, story time and bedtime as much as possible. You may want to use simple words, like “grandma is sick” to explain changes they are seeing in the family.  Lots of physical contact at this time is helpful and comforting to young ones.

Guidelines for children 3 – 5 years old

Children ages 3 to 5 are sensitive to major changes, strong emotions and other behaviors in their parent or caregiver.   We should expect them to react to changes in their normal routines and to frequent, unplanned separations from their mother or main caregiver.
Expected behaviors:

  • Brief outbursts of emotion followed by play
  • Waking up very scared (“night terrors”), nightmares, and trouble sleeping
  • Not wanting to be separated from parents or caregivers
  • More temper tantrums and stubbornness
  • May “regress,” or begin to act like a younger child. This can include sleeping, eating and toilet habits.

How to help:

Talk to the child about the illness
Use words your child understands.  Children at this age take things very literally.    Pick words that talk about the real illness instead of using words that avoid what is happening.  Brief, concrete explanations are best.  This may be something like:

“You know that Grandma is very very sick.  That is because she has a sickness called heart disease. “

“Heart disease is not like a regular sickness because you can’t get it from germs, and no one can catch it from anyone else.  Grandma did not get sick because of anything you did.”

“I am really mad and sad about Grandma’s illness.  How do you feel about it?”

Inviting children to draw a picture or make a card for the person can be a good way to end the conversation.

Explain what they are seeing and hearing
As the ill person becomes more sick, use very simple terms to explain the changes the child may see. Explain things gradually as changes happen. For example:

“Daddy is very, very sick.  That is why he’s so tired and sleepy lately.  The doctors are trying to help him with his sickness, but he won’t be strong enough to play ball with you for now.”

It is important to not give the child false hope. This can cause them to lose trust and be confused.  If asked, “Is Daddy going to die?” you might say something like:

“People have died from the disease that Daddy has, but the doctors are doing everything they can to keep him comfortable.”

Even as the possibility of death comes closer, it’s important to talk to the child about what is happening.  Reassure them that they will be cared for and talk with them about how family life will continue.

Help children understand that what they are feeling is normal
It is helpful to set aside a regular time each day when children can ask questions and share their feelings. Evening can be a good time to do this. If other demands make it hard for you to find this time, you may want to ask a trusted family member or friend if they can be with the children at a regular time each day.

Children this age usually don’t ask many questions about the illness because they don’t know what to ask.  Parents may think that the child isn’t affected by what is happening when the child doesn’t ask questions. The child may also use play as a way to express feelings.  Realize that these are both normal ways of coping at this age and don’t mean the child is not upset.  

Let children know that they are loved and will be cared for 
Keeping regular routines and schedules helps reassure children. Let them know ahead of time when there will be changes to their routine. They may find it harder to separate from you during this time. Try to limit the number of different people who care for them. If possible, have the same relative or babysitter care for them when you are away.   Express your love and affection often.

Allow time for play
Children work through stress and emotions by playing.  Play allows them to take a break in the midst of everything that is going on around them.  Play also helps children make sense of all that is happening in the family.  Giving children a play doctor kit, colors, markers or paint and paper gives them way to work through their feelings. Encourage kids to be kids and play!

Thursday, November 20, 2014

Supporting Children When Someone They Love Has a Serious Illness Part 1 - What All Children Need

In honor of National Children's Grief Awareness Day, we'll be posting a 6 part blog series from our anticipatory grief booklet to help support children by sharing coping tips.

Everyone in a family is affected when one family member has a serious illness.   All are dealing with the unknown and must use strengths they didn’t even know they had. Most of us haven’t been taught how to manage when someone we love is very ill, let alone how to support children and teens during this time.  Yet time and again, parents and caregivers find the strength within themselves and learn new coping and parenting skills along the way.

Our blog series describes how a child’s age affects the way they understand and react to changes in the sick person, in you, and in themselves.  In addition, it offers suggestions about how to talk with your children and ways to help your children prepare for the death of a loved one. 

As you read these posts, keep in mind that you are the expert on your child. What works for one child doesn’t necessarily work for another.  Learn from the experts, but also trust yourself, your child, and your instincts.  We hope you come back to these posts again over time as you travel this journey. And remember that the Grief Support Program at Hospice of Santa Cruz County are here to answer your questions and support you along the way.

Hospice of Santa Cruz What Children Need When Loved One is Seriously Ill

What All Children Need

Gentle honesty
Telling children the truth as soon as possible helps them to trust and feel a sense of safety.  Start by explaining what is happening in simple terms. For example, “Grandma has a sickness that makes her body tired and weak.  Usually when people are sick, doctors and nurses can help them get better.  Her sickness is different because the doctors don’t think that she will get better.  She may die because of this sickness.”

Give children time to absorb what you have told them. Encourage them to ask questions if they are unsure or upset about anything. The words that you use don’t have to be perfect.  You will find your own caring words.  Try to talk with your children in a comfortable, familiar place where you can be together for a while. It’s best not to talk before bedtime, as they may need some play time after this conversation. 

Don’t shy away from using the words “dying” and “death”. Children can be confused by terms like “going away” or “gone to sleep.” Those words may create fear that loved ones won’t come back when they go away on a trip or won’t wake up when they go to sleep.  When you talk about the illness, also remind your children how much you love them. Let them know that there are people who can help your family if needed. This helps children feel safe and cared for during a tough time.

It is okay to cry when you talk with them.  They might cry too. It might be good to have another adult with you to support you when you talk to your children.  Remind your children it is not their job to make you feel better and that you will be okay. 

Being honest doesn’t always mean telling everything you know. Younger children need less information with fewer details. Older children may want more facts. The kind of information children need varies with their age and personality.  Ask “What do you think?” as you talk with children. This will let you know when they need more help understanding what you have told them.

Information at the child’s level  
Tell your children the name of the illness and, to the best of your understanding, what may happen as the illness continues. Use honest words like heart disease, cancer and Alzheimer’s disease.  When not given truthful information, children can feel like they’ve been forgotten or lied to. They may also make up their own stories about what is happening. Honesty from you will help them cope with what is happening. 

Encouragement to ask lots of questions
Children of all ages have many questions. Encourage them to ask questions about anything they are unsure about or feel troubled by.  Answer questions honestly, keeping the child’s level of understanding in mind. Keep your responses short and to the point.  Children understand illness and the dying process little by little. They may ask the same questions over again and it will reassure them when they hear the same information again and again.  It’s also okay to say “I don’t know”, if it is true.  

Children may only be able to take in a little bit at a time – and you may only be able to talk about it in brief spurts.  That’s okay.  Coming back to the topic later actually helps children digest it in their own way.  Leave the door open for ongoing conversation.  Regular updates that fit the child’s age and level of understanding can help them trust.

After providing an update:  “I just gave you a lot of information and used some words you’ve probably never heard before. I’m thinking you might have some questions.  What are you wondering about right now?”  

“We’ve decided that we’re going to have family meetings every Thursday night so you can ask for the latest information about this illness.  Of course, you can ask any question that you have at any time, but we wanted to make sure to save special time to talk as a family so we don’t get so busy taking care of things that we forget to talk with one another.”

“Anything you want to ask about Grandpa?  Whenever you are ready, we’ll talk.”

A chance to share feelings
It’s normal for children to feel all sorts of feelings, including sadness, anger, guilt, confusion, frustration and fear.  Children often feel anger followed by guilt.  They can be helped to express their anger safely with activities such as pounding on pillows or throwing a ball at a target.  Sometimes children don’t yet have words for their feelings.  Sharing your own emotions can be a model for them and reassure them that others also have these feelings. It’s good to remember that many times children express and show their feelings through art and play rather than just talking about how they feel.

Reassurance that nothing they did caused the illness
Children make sense of the world from their own point of view, based on their age and ability to understand.  They may think that something they did or said caused the illness.  They may see the person’s illness and death as a punishment for something bad they did.  They also may believe that they can keep the person from dying by promising to be good.  Children, especially young children, need to be reassured that nothing they did or said and nothing they will do or say is connected to the illness.

Time to play
Playing hard, laughing, and being with their friends can give children a needed break as well as reassure them that their life will continue.  Give them opportunities for play and art. This helps them express themselves at their own pace in the way most familiar to them.  Because children learn through play, they may act out medical scenes or want to have a funeral.  A medical play kit allows a child to act out medical scenes.  During pretend play, going along with the child’s pretend scenes can help you get an idea of anything they may be missing or not understanding about the illness. 

Keeping routines as much as possible 
Children find comfort in their normal activities and schedules.  They feel safe when their world is predictable and they are surrounded by caring family and friends.  Try to keep routines as normal as possible.  Let them continue with their out-of-school activities if possible.  Have a trusted family member or a friend that your children are comfortable with help out with driving if needed.  Try to have regular meals and a consistent bedtime.

Take care of yourself
If you are also a caregiver, take care of yourself as you balance the needs of the ill person with those of children.  It is okay and normal if sometimes the children’s needs take a backseat to the needs of the parents.  Find time to take care of yourself in the ways that help you rest or recharge. This may be through exercise, talking honestly to friends or family members, creating art, meditating, going to church, etc.  Many adults, as well as children, are helped by counseling during this time.

Friday, November 7, 2014

Betty Leonard Reflects on Friends of Hospice Oktoberfest

As Friends of Hospice Celebrate their 31st annual Oktoberfest
Betty Leonard Reflects on the First Event

The weather was especially hot for the Friends of Hospice’s 31st annual Oktoberfest event.  The signature fundraising event has something for everyone: food, music, and silent and live auctions that include vacations and weekend get-aways; fine wines from local wineries; original artwork by local artisans; tickets to sports events and shows; and gift certificates to the area’s best restaurants, stores and beauty salons. Each year, hundreds of supporters attend what has become a community treasure and a way to support our county’s only non-profit hospice organization.

Recently Betty Leonard, one of the founding members of the Friends of Hospice, sat down with us to reflect upon the first Oktoberfest event in 1983.  “It all started with Julie King,” explained Betty.  “She was the one who had the idea for a fundraiser – a big party for Hospice,” she added.  A longtime resident of La Selva Beach who died in 2012, Julie is remembered by friends for her continuous and gracious hospitality and her knack for throwing excellent parties.  “There were five of us and we just went around asking all our friends to give what they could to make the event a success,” she added.  And the event was a success, raising almost $5,000.  They knew with that kind of success that they would do it again….and again.

Fast forward to 2014 and the Friends of Hospice are now 100+ members strong as they present two major fundraising events each year – Oktoberfest in the fall and Fairways for Kids Golf Classic in spring.  Last year, the all-volunteer group raised $123,000 to support Hospice of Santa Cruz County’s programs including transitional care services for seriously ill community members and grief support for adults, children and teens.

Even back in 1983, when the concept of hospice care was still very new, Betty understood the impact that Hospice of Santa Cruz County would make.   “When my husband died of cancer, there was no hospice care,” Betty explains.  Over the years, she has seen how hospice care supports both the patient and their family members.  “It takes a special kind of person to work for hospice,” she adds.  “I’m just so glad that we have such a strong organization to support our community, and it’s so wonderful to remember how it all started.”

As Betty reminisces about the early years of Oktoberfest events, she is reminded of an old Mickey Rooney joke:  “I found a barn, now let’s put on a show”.  Her story brings to mind the timeless words of Margaret Mead:  “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”

Thursday, October 16, 2014

An Interview with Charlea Massion, M.D.

By Joanne Guzman, Marketing Manager
Hospice of Santa Cruz County

Hospice of Santa Cruz County is pleased to welcome our new Chief Medical Director, Dr. Charlea Massion.  As a board certified hospice and palliative care physician and a member of the palliative care team at Dominican Hospital, Dr. Massion brings expertise and a deep caring to her role of leading HSCC’s medical team.

I recently sat down with Doctor Massion to talk about her hospice work and how she arrived here at HSCC.

1. What brought you to end of life care work?

“It was the natural evolution in my career as a family physician.  I trained in family medicine and held a primary care position in an office based practice for over 25 years.  During that time, the role of the family physician it became more and more circumscribed.  The scope of the work shrunk.  I decided to become a hospitalist.  I was a full time hospitalist for 6 years. While working as a hospitalist, I saw many, many patients at the end of their lives.  I often saw the suffering that they and their families had and became interested at that time.  As a hospitalist, I was able to consult the inpatient palliative care team and see how they were able to help patients and their families.  I decided what I wanted to do and trained in palliative care.  I passed the Board certification for hospice and palliative medicine in 2012.  That’s the work I really wanted to do, I didn't know whether I could stay in Santa Cruz and I was very happy about staying in my home community.”

2.  Why is this work meaningful to you?

“As a family practitioner, I was always interested in family dynamics and communications.  At the end of life family communication is amplified; sometimes to the difficult and sometimes to the loving and peaceful side.  It’s a time where it’s possible for families to come together and find new strength. By families, I mean anyone who loves that person - extended family.  Sometimes there are unexpected opportunities to resolve difficulties and they can come to a new understanding of what’s important.  Having an opportunity to support that process is very meaningful to me.”

3.  Is there something you would you ask patients to better understand them?

“What is most important to you at this time in your life?”

4. And if someone were to ask you what brings you joy, how would you answer?

“I’m not sure I could say one thing.  Work is very central to me, I feel very happy and honored to do this work.  Feeling the lifecycle in my own life as a physician, I started out taking care of babies and children and their mothers, the whole family.  Now working with patients at the end of their life, I’m bringing the skills of over 30 years working in medicine to my work every day.

In addition to my work here the things most important to me are my friends and my family.  I’m also very passionate about women's health.  I’m on the Board of National Women’s Health based in Washington, D.C., it's another opportunity for me to support the growth of healthcare.

I feel that hospice and palliative medicine is coming into its own.  It’s been in healthcare system for many years and I feel it’s becoming more and more appreciated and mainstream medicine.  I’m glad to see it and to be a part of bringing it to families and physicians and our community."

Welcome Doctor Massion!

Monday, October 6, 2014

Expressing Grief through Art

HSCC now offers an Expressive Arts Grief Support Group for adults that uses creative activities to tenderly encourage expression, insight and growth in a supportive environment.  Members are offered new ways to tell their story, express emotions without words and feel connected and supported as they creatively honor their grief and loved ones.

This special group runs for 8 weeks and typically includes 6-8 participants along with 2 facilitators who have an art and grief support background.  The group is different than other bereavement counseling in that while there is some time each week to share with each other, much of the time participants are working individually while writing, painting, drawing, sculpting and through movement.  There is no previous art experience necessary to join the group and participants take their creations home with them.

In a recent group participants made hand molds to remember and acknowledge all they gave to their loved ones and to others, and what they wanted to receive for themselves and then they painted over both sides.

The new group session will begin in Scotts Valley on October 22, 2014.  If you’re interested in hearing more about the Expressive Arts Grief Support Group or to register, please call Shirley Sapena, Group Program Coordinator at (831) 430-3058.  For more information on grief support services available, visit our website at Hospice of Santa Cruz County Grief Support Services.

Friday, September 19, 2014

Memorial Wall Open House

An enchanted backdrop of towering redwoods and autumn foliage provided a welcoming invitation for all that attended the annual Hospice of Santa Cruz County Memorial Wall Open House.

The gathering took place on Saturday, September 13th at the Hospice of Santa Cruz County’s Redwood Memorial Garden in Scotts Valley. Multiple generations of families and friends came together creating a place of peace and tranquility to remember loved ones.  A pristine fall afternoon enhanced the atmosphere of honor and remembrance.

Hospice of Santa Cruz County’s CEO, Mike Milward and VP of Communications and Philanthropy, Cathy Conway addressed the outdoor crowd with comforting and inspirational words of love, hope and remembrance.

The traditional laying of the flowers around the memorial tiles, trees and garden stones concluded the afternoon of remembrance, offering  families and friends, still another precious memory of their loved- ones to safely hold dear to their hearts.