Supporting Children When Someone They Love Has a Serious Illness Part 6 - Explaining the Final Stages of Life

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

Explaining the Final Stages of Life

The final stages of life can be confusing and scary for children if they do not understand the changes they see happening.  Not all terminally ill people will go through these changes, but talking about them ahead of time can help children be prepared.

Loss of Strength
The disease may weaken the body so much that the person will need lots of rest.  At some point, the person may not have the strength to talk.  Explain that he or she is still able to hear their voice and feel their touch.

Loss of Appetite
The person will slowly lose their appetite until they may not eat anything at all.  It is important to tell children that because of the disease, the person does not feel hungry or need food like they did before.

Pain or discomfort
The person may sometimes have pain or other discomforts from their illness.   Let children know that the care team is doing all they can to keep the person comfortable.

Personality changes
Some people may act differently as the disease weakens their body.  They may be more irritable, sad, or quiet.  Let children know that these changes are caused by the disease and not by anything anyone in the family has said or done.

Confusion
Some diseases cause the ill person to be confused as they get closer to the end of life. They may start saying or doing things that don’t make sense.   This can be very frightening for children.  Explain that the disease is causing the confusion and reassure children that nothing they did or said caused it.

Breathing Changes
It is common during the last few days of life for breathing to change.  There may be pauses between breaths or breathing might sound loud and heavy. There may also be a sound like the person needs to clear his or her throat.  Explain that these breathing patterns are like snoring – uncomfortable to listen to, but the person is not feeling any discomfort from them.

Explain to children that the family will not be calling 911 to prevent the death but will be doing everything to help the person stay comfortable.

When Death is Close at Hand

The transition from life to death is often peaceful. Witnessing this can give children a sense of reality and comfort.  If you feel comfortable being with the person as they are getting closer to dying, ask your children if they would like to join you.  The child should decide; never force them to be there against their will.  Assure children that they do not need to feel guilty if they aren’t there at the moment of death.  If you feel uncomfortable having your children present, you may want to tell them about it later instead.

Don’t promise children they can be present at the time of death. Since many people die when everyone is out of the room, being with them is not always an option.  Gifts of words and art are other ways children can say goodbye.

Age-related Responses to Children at the Time of Death

Warm, loving concern should be shown to children of any age when they learn that the person has died.  Let children know they can say goodbye even if they are not in the same room or house with the person who has died.  

3-5 Preschool children will watch the reactions of the people around them. Their own reactions happen later, when they begin to understand that the person is gone from their life.  Once this happens, they may feel sadness and disappointment or have trouble believing that the person is gone.

6-8 There are many different ways children of this age may respond to the death. They might have no response at first, or cry quietly. They may sob or scream, even if they knew that the death was coming. These responses may last a few minutes to about an hour.  After this, most children usually return to what they were doing before the news.

9-11 Children this age often put on a brave face to help them deal with their strong feelings.  They may look like they are not feeling grief, but this is not the case. They sometimes show anger as a way to cover up their fear, anxiety and sadness.

12-18 Adolescents are able to talk about the fact that their loved one has died and show sadness and cry.  They also become anxious as they face the loss and how it will impact their life.

Remember that being patient with your child is the most helpful way you can support them at this difficult time for everyone.

Supporting Children When Someone They Love Has a Serious Illness Part 5 - Guidelines for Teenagers

Part 5 of our 6 part blog series sharing coping tips to help support children when someone they love has a serious illness. 

The Teen Years 

During the teen years, children are finding their own identity and becoming more independent. They need more privacy and often withdraw from family members.  This process of growing up is harder for them when someone in the family is ill.  They try to balance the family’s needs with their own very different needs. 

Teens may show anger as they become more anxious and fearful about the illness. When much of a parent’s time and attention is focused on the sick person, the teen may feel that they are being abandoned and become resentful. 

As the ill person gets closer to dying, teens often are able to talk about it and cry as they express their sadness.  They may also become very anxious and worry about how the death will affect their lives.  Around this time, they may try harder to behave well and do what is asked of them. 

Teens need as much time as possible to prepare for the death. Let them know when death is near so that there is time for them to have a final conversation and say goodbye, if possible.  If they have been angry and resistant, they may become more cooperative when the death is near, but not always. Sometimes they may become even more angry as a way to protect themselves from their sadness. Teens’ hostility and anger before a death may lead to feelings of guilt after the death.

Guidelines for Children 12 – 14 Years Old 

Teens between the ages of 12-14 can understand the illness and how it will effect their lives, yet it may be hard for them to cope with the feelings that come with it. They may not want to talk about it out of fear that they’ll lose control and cry.  They may act “grown up” as a way to ignore their strong feelings. This can make it seem like they don’t care, which can be upsetting to parents, but this is not the case.   

Teens this age can also be very optimistic that the sick person will get well and they may not want to hear otherwise.  They hold on to their positive outlook by avoiding facts and feelings. This is normal for a young teen and should not be discouraged.

Reactions to expect:

• Not wanting to talk about the illness

• Feeling strong emotions but acting or saying that they are “fine” 

• Holding on to the belief that the patient will get better 

• Tending to argue and be more “difficult” or demanding

• Resenting chores and other demands that take them away from school and friends

• Having trouble with school work, or, sometimes, trying very hard to please adults by being extremely good

• Trouble sleeping 

• Anger

• Sadness

How to help:

Talk with them about the disease

Keep them up-to-date with what is really happening, even if they don’t want to hear it.  Don’t assume that they understand as much about what’s going on as they seem to. Let them know when death is near so that there is time for them to have a final conversation and say goodbye, if possible.  

Give them a chance to talk about their feelings and concerns

It is important to talk with your teen about how they are feeling, even if only briefly and even if they don’t really want to talk. Try to be as open and nonjudgmental as possible when they share their feelings. Sharing your feelings and concerns can help them feel more comfortable sharing their own.  This helps them see that the feelings they have are normal and expected. 

You may say, for example:

“You look kinda sad today.  I’m feeling sad about this too.  How are you doing with all of this?”

“Sometimes talking about what’s going on helps.  I’m here to listen any time that you want to talk about any of this.”

It is also normal for grieving teens to have strong and often negative feelings about the person who is sick.  They can feel frustrated and angry about the illness and may direct their anger towards the person.  Often after having or expressing these emotions, teens can feel guilty.  Help them understand that having a wide range of feelings is normal, and help them figure out ways to cope with their strong feelings.

Be understanding of the teen’s reactions

Remember that if your teen pulls away from you, has lots of ups and downs, or is defensive or self-centered, this is all normal given their age. Teens often find writing, quiet time alone, and time with friends helpful as they deal with a difficult situation. 

Be an advocate for your child

If possible, try to limit the teen’s duties and chores at home, since pulling them away from school and friends can cause them to become angry or difficult.  Understand that they may not do as well in classes at this time. Let their teachers know about the illness. Help them connect with any counseling or support groups offered by the school or local hospice.  Often teens don’t want their classmates to know that they are receiving counseling.  Listen to your teen’s concerns, offer options, and help find creative solutions to this issue.

Guidelines for Children Ages 15 – 18

Teens between the ages of 15-18 can usually understand the realities of the illness and deal with their emotions. Yet at times they still may feel overwhelmed.  Though they can generally talk about what they think and feel, their feelings about the illness may not be clear. 

Teens this age tend to be more practical in their thinking than younger teens. They may also be more considerate.  Because they’re more aware of the possibility of death, they may feel more grief during the illness than a younger child might. 

At this age, teens want to be treated like adults and are trying to rely more on their friends than their family for support.  They’re able to be more concerned about the needs of their family members, though they may resent having to do more. 

Expected Reactions:

• Fears about the future

• Irritability

• Having strong feelings like anger and guilt toward the person who is ill

• Trouble concentrating 

• Being torn or frustrated when having to focus on the needs of the family rather than attend activities or socialize with friends

• Feelings of resentment, anger, and defiance.

How to help:

Talk with the teen about the illness and how it will progress 

Include older teens in family discussions about the illness. It’s helpful if the sick person can talk directly to the teen about the illness as soon as possible. Teens this age can understand personal or spiritual thoughts and feelings, including uncertainties and unknowns, so these can be shared with them as well.  Let them know when death is near so that there is time for them to have a final conversation and say goodbye, if possible.   

Expect that the teen will not perform as well during this time 

Keeping up grades, activities and friendships is very important to most teens. However, during a serious illness, it’s normal for them not to do as well in school, sports, etc. This can be hard for teens and parents who believe that grades will affect future opportunities.  However, some teens actually do better at this time as a gift to their ill parent.  Either way, be understanding of what the teen is going through. 

Recognize how the stress caused by the illness can affect them

Teens this age may feel overwhelmed by the stress from the illness on top of the other pressures they feel in life. Talk with them about ways they might reduce the stress in their lives, dealing with the things that are causing them stress one at a time.

Know that they may be worrying about the future 

Talk with older teens about how future plans will be affected by what is happening. Reassure them in a way that is realistic. Provide a listening ear as they share any fears they may have about their future.

Know that teens may be afraid that they too could become ill 

Let older teens talk to medical professionals if possible to allow them to ask questions about the illness-how it is caused and what to expect. Talking with your teen about the actual chances of them getting sick can help them feel less fearful.

Talk with the teen about ways they can be helpful to the family

Giving the teen helpful tasks can sometimes help them feel less anxious.  Look for opportunities for them to help in ways that they enjoy, such as cooking, shopping, or errands. They may also want to spend time with the patient reading, listening to music together, watching a movie, sharing food, or writing a card or letter.

Understand that the challenges of growing up are even more stressful when a parent is seriously ill

The normal process teens go through to become their own person is harder when a parent is seriously ill.  It can be challenging for them to see a parent be needy. It can also be hard for them to deal with a parent wanting to control their activities and comings and goings more at this time. They might react to this with resentment or anger and then later feel guilty about it. 

Be an advocate for your teen

Consider helping your teen join counseling or support groups that may be offered by the school or local hospice.  They benefit from talking with understanding people who are not directly involved.  They may find that friends who are usually supportive “just don’t get it”.  Speak with teachers and coaches about the illness and about ways they might help support the teen. 

Supporting Children When Someone They Love Has a Serious Illness Part 4 - Guidelines for Children 9-11 Years Old

Part 4 of our 6 part blog series sharing coping tips to help support children when someone they love has a serious illness.

Guidelines for Children from 9 – 11 years old

Children ages 9-11 are able to understand more about the illness than younger children and may ask about the details.  Their desire to know these details may make it seem like they don’t have a lot of feelings about what is happening.  Yet getting facts to help them understand what’s going on is one of the ways that they cope with scary and strong feelings.

Children this age understand that death is final and can feel sad about a future loss.  They wonder how they will be impacted by illness and death and who will do the “daddy” or “grandma” things.  When one parent is terminally ill, the child often fears the death of the other parent and worries about what will happen to them if both parents died.  They tend to hide emotions and it’s easy to think the situation is affecting them less than it is.  They may silently wonder, “Can I catch this?” “Did I do or say something to cause this?” Or they may create their own explanations when they are not given facts about what is happening on a regular basis.  Children this age welcome distractions of school, activities and friends.

Behaviors to expect:

• A lot of interest in understanding the disease, treatment and progress
• Wanting to avoid strong or scary emotions
• Not wanting to talk about or show feelings
• Anger (used to cover fear, anxiety and grief)
• Angry and mistrustful reactions when not given the facts about what is happening
• Strong reactions to stress and normal frustrations in every day life 
• Wanting to stay active with schoolwork, sports and outside activities
• Wanting to help care for the ill loved one

How to help:

Talk openly with the child about the disease
Watch for opportunities to talk about the illness and explain what children are seeing and hearing. Include them in discussions and updates. If children are not given enough information they will listen in doorways or strain to hear whispered phone conversations and may jump to false conclusions.

Talk about the name of the disease, how it affects the sick person, causes, and side effects of treatments.  Children also like learning things from doctors and nurses when possible.  You can try to be optimistic about what to expect but not give false hope that the person will heal from the illness.  So, instead of saying, “Grandma is a fighter, and she will be cured,” it would be better to say, “The doctors and nurses are working hard to help Grandma feel as comfortable as possible.  She may be well enough to come to your birthday party this weekend.”

Encourage children’s natural interest in the illness by reading together and providing time to write or draw.

These are some common questions:
How did she get it?
Can I get it?
How do you know I won’t get it?
What if the medicine doesn’t work?
What will happen to me when she dies?

Reassure children the illness is not their fault. Gently let them know when the person may be close to death.  This will help them to make final visits and say goodbye.

Let children know that what they are feeling is normal
Let them know that the situation is hard for everyone and that the family will deal with it together. Remind them often that your moods are not their fault.  Encourage them to express their thoughts and feelings about all the changes that they are seeing in themselves, in you and in the patient.  When it is time, acknowledge sadness about the possibility of death.

Prepare ahead of time for changes in routine 
Children need time to prepare for changes.  Talk with them ahead of time about upcoming changes in their routine as much as is possible.

Offer children ways to be helpful
Some children this age want to help take care of the sick person as a way to show their love and caring.  Let them help by doing simple things but limit their responsibilities so they don’t feel burdened.  Children can help the patient feel loved by drawing pictures, telling the patient they love him or her, talking quietly, sharing favorite memories, etc.

Be an advocate for children
Help the child stay active with after-school activities and by spending time with their friends.  Let teachers and other supportive school staff know about the illness so they can provide support as needed.  It is not uncommon to see a temporary drop in grades due to changes and stress at home. You may want to ask teachers for homework packets if you know children will be absent from school.

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.

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!

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.

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.

Examples: 

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.

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.”

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!

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.

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 13^th 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.

A Glimpse into the Work of a Hospice Volunteer

Peg Gallagher, Volunteer Visitor and Radha Mallery, Director of Volunteer Services at Hospice of Santa Cruz County share their experiences of comforting those facing the end of life.

Each fall and spring, Hospice of Santa Cruz County invites our community members to become Volunteer Visitors.  These special volunteers participate in a training program that prepares them to take care of practical tasks or simply extend a hand to hold to hospice patients and their families.  Volunteers may run errands, help prepare a meal, read to a patient, or just share some quiet time. Their presence can make it possible for a caregiver to take a needed break for a few hours. Recently, director of volunteer services, Radha Mallery, sat down with volunteer visitor, Peg Gallagher to talk about volunteering for Hospice of Santa Cruz County.

Peg Gallagher became a volunteer visitor in 2011 and has supported patients in their homes and in residential care facilities.

Radha:  Why do you do Volunteer Visitor work?:

Peg:  I like helping others at a time in their life that's important and significant to them, and being fully present with somebody. I don't have any history with them and to be fully present to whatever their needs, wants or concerns are is a wonderful experience.  I really enjoy those moments of connection.  There's a purity to it that you don't get with most people because usually you are coming in with a lot of baggage.  With hospice patients there is no baggage just the purity of the one-on-one connection.  I didn't expect this, I was just looking for an opportunity to give back in our community.

Radha:  Do you think it is because they are at the end of life and it makes it more authentic for them?  Or is it more real because they are really down?

Peg:  What you see right away is all the losses they have suffered, yet they're still alive.  That's the real beauty.  As a person dies they suffer all of these losses; they figure out what is really important, what they want to be about and as they do that, I get to be a part of it and a witness to their experience.  It's very incredible.  In our culture, we talk about heroes as sports players or business people, while they do great and significant things - different from the ordinary person, the people who are dying are the absolute heroes to me.  They have a hospital bed and that's their existence and they will greet me and be happy to see me and be alive in that moment and after all the suffering they go through, that's pretty incredible.

Radha:  What is it that moves you the most about the work?  You said all of your experiences are great, knowing you as I do, some of the experiences you've had haven't been easy.  There's been some that were difficult.

Peg:  I thought what volunteering would be is that I would come in, sit down in a chair by a bed and the person would be there and I would read to them or write letters for them or watch television with them and that would be that.  While those activities all occur, every visit and every person is different and unique in its own way.  I can visit with somebody and they can be in a wheelchair and we go for a walk outside and I've been with people who are in a great deal of pain and suffering and I've helped communicate with the nurse to come relieve the pain.  I've been with someone who actually died and that was an amazing experience, I felt very honored to be included with the family to be present with them at that particular sacred time.

I've run errands, picked up the house, the full gamut.  What I always try to do is no matter what's going on, where the person is, or what's happening - I try to connect with them to figure out what has meaning and purpose for this person and how can I reflect that or bring that to the foreground for them.  To facilitate it or step back because they are already doing it.  I think that the connection the Volunteer Visitor makes with the person and their family is really critical, it opens up all the possibilities that occur for the volunteer and the patient.

Radha:  How do you answer the question, “Doesn't this make you sad?” Or respond when people say, “I could never do that”.

Peg:  At times it is sad.  People’s life circumstances can be sad and certainly as a young mother with teenage children is dying, that is a heartbreaking circumstance.  To me, to be present with that person and talk in depth about what is important to them, what is significant to them, takes it to another level.  It transforms the sadness into the give and pull of life.  We don't get to pick when we are going to die, but we can choose how we will and what we want to be remembered for and what our legacy is. I remember one woman in particular, she worked with children, she talked of how her own children were her legacy and how each child she worked with was her legacy.  That mix of sad and joyful, it’s a hard but authentic experience.

Peg:  How do you see volunteers grow/change from the training and from this work?

Radha:  I see them change in a way that when we come together in support group or when we are talking on the phone, I talk with them in such a way that I understand that their experience is opening their lives and allowing them to be more fearless about facing their own mortality.  It gives them the opportunity to actually be in that authentic place that you talked about.  To actually experience that firsthand with somebody so that hopefully when they reach that point in their own life, (the dying process), they can remember and draw on that when they are facing death themselves.

I also see that our volunteers want to work as a team, they're almost like a tribe.  Again when they come together they feed off of each other's experiences and they learn and hospice is the conduit.  They are able to really learn from each other’s experiences and that is the greatest teacher of all.

I see how they have hesitation about going into certain settings, like a reluctance to go into a facility, they can have that hesitancy, and we ask them to go because we don't have anybody else and they of course say yes and they realize that "I can do this" or "I can be in this setting".  It can also be the opposite, they only want to go into facilities, no individual homes and then they go and it empowers them.

I see that they become really wonderful advocates for the people that they visit, that again is empowering.

Peg:  What kind of ongoing support do you provide volunteers?

Radha:  My team and I get calls every day asking for support around different situations.  We give them one-on-one support talking to them.  The volunteers also have access to other team members.  We have twice a month support groups.  One in Scotts Valley and one in Watsonville in the evenings.  Volunteers are able to come to that and receive support that way.

Peg:  What's most inspiring to you in working with volunteers?

Radha:  I almost started to cry when you asked me this question because I am so moved by the level at which people show up and to the extent that they show up when asked.  Whether it's simply running an errand or sitting at the bedside when someone is actively dying and everything in between.  I am so moved by the level of their commitment and their engagement for what we ask them to do and their love of the work.  It's truly inspiring.  Every time we have a support group or training I'm re-inspired, the enthusiasm and dedication is infectious.  In the midst of it, they keep a light heart - there is levity in the gravity.  There is always a fun side of this work, there is no exception to that.  People find the lightness in it and it’s quite magnificent.  They bring joy and jokes and in a time when our culture perceives as the most difficult thing we can all experience; death.  Which it is difficult, but our volunteers find the joy and the light in that, it's like magnet.

Peg:  As a volunteer, the support that I have received from you and your team is outstanding.  Any time I'm unsure or worried about something; when one of my patients dies they are always accessible.  It's uncanny, they always know what to say, not trying to fix me, but just to be with me and help me go through whatever issue is occurring.   It's been wonderful, I feel so supported and so helped and I don't have any kind of fear that there will be trouble.  I can talk to you Radha and I’ll get the help that I need to be able to handle any situation.

I remember when I signed up being concerned about it.  Will I be able to do it for a whole year?  The work was so inspiring and such a gift, I've gone beyond a year!  I’m still going strong and liking it so much.  What people are generally asked to give is 4 hours a week.  The time goes so fast.  It's kind of interesting, every person I have visited - the four hours have been distributed differently.  Sometimes it’s a block of time, other times I will go to facilities, I’ll go 2 or 3 times a week and break it up across the week so the patient can have more visits during the week have something to look forward to, that somebody is going to come and visit them.  You can vary how you spend your time. It’s funny because I had those concerns in the beginning and they were not relative to the relationship and the dynamic of the relationship.

Peg:  If somebody is not sure about whether or not they could be a volunteer how do you help them through that?

Radha:  We have a conversation about it.  Right from the get go I tell people it’s a different kind of volunteering.  You may not know if you have the mindset to be able to do it, but the interview itself will reveal a lot.  I'll ask the questions that I think will draw out whether or not I think that you're ready.  It's ok if you're not and I really respect that it's not the right thing for everybody and if you can't do it there are other ways you can get involved with the agency.  That way you get to take a little step at a time. Maybe you'll be a Volunteer Visitor or maybe you won't.  Maybe you help with staff support or administrative offices or events.  We appreciate the courage you have here to come and talk about. We know it's a big commitment and we have the skills to determine if it’s right for you.

Hospice of Santa Cruz County volunteers are a remarkable and dedicated group of individuals and an important part of the patient care team. They are drawn to hospice for different reasons, yet they share a common desire – to be of service and help others at this precious time of life. Volunteer Visitors are understanding listeners, the ones who extend a hand to hold, providing companionship and emotional support. Like a friendly neighbor they also take care of practical tasks: provide transportation, run errands or prepare a meal. Sometimes their presence makes it possible for a caregiver to get away for a few needed hours of respite.

Hospice of Santa Cruz County is seeking friendly, compassionate men and women to join their Volunteer Visitor program. Training begins September 23, 2014 and applications are due by September 15th.
This 8-session training prepares volunteers to support patients and their families both practically and emotionally. Bilingual volunteers and military veteran volunteers are especially needed. Interested potential volunteers can contact Volunteer Services Manager Radha Mallery at 430-3006 or email her at rmallery@hospicesantacruz.org.  The volunteer application can be downloaded from the Hospice website, www.hospicesantacruz.org/make-a-difference/volunteer-opportunities.

Hike-Bike for Hospice Participants Honor Loved Ones

The 2014 Hike-Bike for Hospice participants walked in honor and to remember the following loved ones-

I am Walking in Compassion for:
Joe
Catarino Ambrosio
Anita, Irene and Charles Keller
CAT
Annie and Harold
Peter Baker
Kelly
Chris
Annie Gordon
Everybody (1
Nestor Guzman
Nai-Nai
Uncle Carl Mancini
Clare Shultz
My Mom Clare
Great Grandpa
Ervin Hediger
Greatpa Catrino
Carmen Saldivar (mom)
Herman Mathis
Wilsa Schroers
Grandma Goldie
John Sylvia
Aurora
Ashley
Steve Daroza
Barbara
Judy Valentine
Bob Herron
Angel
Nancy Tice (Mom)
Addy
My Mom
Frank & Lucy Muzzin
Dad (Catrino)
Mom
Gigi
Judy
Grandpa Bill and Grandma Rose
Grandpa Hagen
Jose Nunez Sr.
William Moore
Pamela Diaz
Thelma Mathis
Judy and Thomas
Carl Mancini
Doris Schwitzer
Viola
Don Anderson
Yuri
Russell Valentine
Rose
Filiberto Paez
Dennis & Joan Dilley
Thomas Devlin
Elise Christine Anderson
Eileen (Auntie J)
Carol Jean Miller
Pam Schlaepfer
Joaquin Hughes, Wm. J Hughes
Alene Hoga
Jim McGirr
Filberto Paez
Maestra Judi Stobbe
Polly Montrouil
“Big Jim”
Mira Kardon

Women's 18 Holers Tee Up a Win for Hospice!

July 15th, 2014 - Seascape Golf Club in Aptos was the site for the annual Seascape Women’s Golf Club Tournament which benefits Hospice of Santa Cruz County.

The Seascape Women’s Golf Club's Hospice tournament committee did an outstanding job of bringing in the golfers and raffle prizes which translated into a new donation record-high to Hospice of Santa Cruz County –  $7,000 was raised for Hospice’s many community programs by this powerhouse committee of women.

From left to right: Cindy Baker, Carolyn Post, Wendy LaRocca, Brenda Holquin and Ginger Ramsey

Over 75 golfers enjoyed the annual festivities which included a healthy dose of competitive golf, prizes for the closest to the hole and of course dozens of wonderful raffle gift baskets, wines and gift certificates that were donated by generous local businesses. 

This tournament brings in local golfers as well as folks from out-of-state including residents from New York and Wendy LaRocca’s family from Arizona. Wendy’s grandchildren always look forward to visiting grandma to help with the preparations for the tournament, as well as distributing raffle prizes to the winners on the day of the event!

Thank you Seascape Women’s Golf Club and the awesome golf tournament committee.  Your dedication and commitment year after year supports the many essential community programs that Hospice of Santa Cruz County provides to patients and families.  Your exceptional team work and heartfelt generosity is much appreciated by us all at Hospice of Santa Cruz County.

For more information about Seascape Golf Club membership, contact General Manager, Gary Nelson at (831) 688-3213 or visit www.seascapegc.com or their Facebook Page.

Étoiles de Confort (Stars of Comfort) Quilt

“Étoiles de Confort”

“Stars of Comfort” Quilt

A fundraising raffle to help support Hospice of Santa Cruz County’s

We Honor Veterans Program

The Pajaro Valley Quilt Association (PVQA) has generously donated to Hospice of Santa Cruz County an exquisite quilt entitled Etoiles de Confort (Stars of Comfort). This priceless quilt will be raffled to help raise needed funds to support our Hospice of Santa Cruz County’s We Honor Veterans program.

This custom queen sized quilt, designed by Betty Whitman, features a stunning collection of cotton, French provincial fabrics which profile 38 machined-pieced stars (each made by a member of PVQA).  The quilted stars, featuring popular French-country colors of blue, red and yellow, are set on a delicate off-white print which serves as the backdrop for the dramatic star medallion created by Kristie Shulman.

The name of the quilt Etoiles de Confort (Stars of Comfort) has three meanings:

Stars of Comfort honors our Veterans.  Men and women of the armed forces are true shining stars. Without their service we would not have the comfort of home and country that we love and enjoy!

Stars of Comfort honors those who comfort the dying.  All family members, caregivers truly are the Stars of Comfort represented in the quilt.  Also, hospice care team of nurses, physicians, hospice aids, chaplains, social workers and volunteers are Stars of Comfort to those living and dying in our community every day.

Stars of Comfort honors the dedicated quilters from the Pajaro Valley Quilt Association. Their passion and love for our community is represented by every piece of fabric carefully stitched into this mosaic of beauty! This breathtaking quilt is a priceless treasure that will be displayed at multiple Hospice of Santa Cruz County events from June 1^st through December 7^th.  The winning ticket for the quilt will be drawn at Hospice of Santa Cruz County’s annual Tree of Lights event on December 7, 2014.

A limit of 250 tickets will be raffled for this quilt.  Tickets are $20 each.

To purchase tickets contact:

Adrienne Meier

Associate Development Director

Hospice of Santa Cruz County

831 430-3086

ameier@hospicesantacruz.org