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.

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.











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.



Thursday, September 4, 2014

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.





Friday, August 29, 2014

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