“There is a lot of information explained during a visit,” says Carolyn Pendegrass, “It’s a lot for anyone to digest and remember. Taking care of a loved one who is dying is a tremendous responsibility and can be very stressful and frightening.” A caregiver’s biggest fear is almost always about managing their loved one’s medication, according to Carolyn. “The patient’s comfort is our major concern, and if the caregiver is afraid of over-medicating, they might be reluctant to give the doses needed to control discomfort.”

A tuck in call is about comfort for the patient and the family members or caregivers managing the care. The on-call nurse asks specific questions about symptoms and may recommend adjustments if the patient shows signs of distress.  During a call, Carolyn will reassure caregivers that they are managing well and she often offers to speak to siblings or other relatives who are unable to visit the patient but are expressing  concerns to family member who is there, at the bedside.  “Many times if a son or daughter can’t be there, they may second-guess the sibling acting as caregiver, causing a lot of stress for the whole family,” she added. The on-call nurse brings the focus back to the patient, helping the entire family feel confident with the level of care and comfort being provided.

The on-call nurse answers as well as makes calls, and sometimes her voice is not enough. When a caregiver isn’t able to relieve symptoms and pain, the nurse may go to the patient. “I consider it a privilege to go into someone’s home in the middle of the night,” Carolyn says. “Most people don’t call unless they feel really desperate, and I am honored that they have such trust in me.”

Ryan and his mom decided to sell wrist bands to raise money to help the families who lost children. Within the first 24 hours after the bracelets arrived, they sold nearly 5,000.  The original order was paid for by a local business owner who chooses to remain anonymous. Selling for $3, the wristbands were promoted through word of mouth and Facebook.  As of Tuesday, February 12^th, Ryan had raised more than $20,000 and decided to donate the money to Healing Hearts Center for Grieving Children and Families.

“I wanted to give something that would provide support,” said Ryan.  “The money going to Healing Hearts will help them now and in the future.”

Healing Hearts Center for Grieving Children and Families, a program of Regional Hospice and Home Care of Western Connecticut, has been providing free bereavement programs in Western Connecticut since 1995. It is funded solely through contributions and grants. Ryan’s contribution will be used specifically to help fund programs for Newtown families.

“Healing Hearts is a great service,” said Mrs. Patrick. “I lost my dad when I was four, and there was nothing like Healing Hearts at that time.”

“About 1,000 people of all ages attend Healing Hearts groups and programs each year,” said Joanna DeNicola, a licensed clinical social worker and director of the center. “When a child dies, parents and surviving siblings often feel a sense of isolation that may accompany the grief.  At Healing Hearts, our support groups connect bereaved parents and children with others dealing with a similar loss.”  The supportive and healing community that Healing Hearts provides can be helpful to those trying to cope with such a painful loss. “When Ryan decided to support Healing Hearts with this incredibly generous donation, he really made the decision to offer hope and healing to all those impacted by the death of a loved one in Newtown and beyond,” said Mrs. DeNicola.  “His donation will impact the lives of many grieving families, and he also sends the message that the community is here to support you as you travel this difficult path.”

Caption: Ryan Patrick (right) presents $24,000 he raised for Healing Hearts Center for Grieving Children and Families to Joanna DeNicoloa, LCSW, the director of the center. The funds will support programs for families and loved ones of the Sandy Hook shooting victims.

Third-grade students at Gibbs Magnet School of International Studies and Foreign Languages in Little Rock Arkansas have been working hard to raise money for the Healing Hearts Center for Grieving Children and Families to help support the grieve and bereavement programs for families in the area who suffered tragic losses during the Sandy Hook Elementary School Shooting. Their story aired on THV in Arkansas, a CBS and Gannett affiliate.

Third Graders in Little Rock Arkansas “Stick Together” to Raise Money for Sandy Hook Students.

Danbury: People of all ages in all parts of the world have been touched by the wave of sadness emanating from Newtown. Letters, mementos and remembrances have arrived here from across the globe by the thousands, none more touching than those from children. The Third-grade students at Gibbs Magnet School of International Studies and Foreign Languages in Little Rock, Arkansas decided to send a gift that would help provide long-term help for families who lost loved ones in the Sandy Hook shooting. They started a fundraising project to support the Healing Hearts Bereavement Center for Grieving Children and Families, the agency providing programs for Sandy Hook Elementary School Families. Their project is called “Kids Stick Together,” and its money-making products are decorative and useful items that they have made from duct tape.

Why would 8-year-olds more than 1,000 miles away think about providing money to help pay for counseling? As one boy in the class said, “If something like that happened here, we would need somebody to talk to.”  Jennifer White, the teacher of the class that developed the project, read her students the Healing Hearts program description, including what some of the children will be doing in the groups. The class was particularly attentive when they heard that children participating in a grief support program sometimes do a craft project that involved breaking a terra cotta pot, gluing it back together and decorating it with words or artistic expressions of their feelings. One member of her class jumped up and said “Oh, I get it. His heart was broken and when he puts it back together he knows he can be healed.”

As of Tuesday, January 29, the students had raised $450. Since their story appeared on local television news channels late last week, other schools in Little Rock have offered to help sell the products. Healing Hearts Center for Grieving Children and Families has been providing free grief and bereavement support for families in the area who suffered tragic losses during the Sandy Hook Elementary School Shooting since Dec. 14^th and has developed a number of programs intended to continue through the next three to five years.

“We understand emotion ‘spilling out our eyes’ around here, from the first graders finding pennies on the ground to help, to the 5th graders donating the rest of their change even after purchasing things” said Ms. White.  “It has been a very heart touching experience for us, and we are so happy to be able to help.”

Healing Hearts Center for Grieving Children and Families, a program of Regional Hospice and Home Care of Western Connecticut, has been providing free bereavement programs in Western Connecticut since 1995. It is funded solely through contributions and grants.

Ms. White’s third grade class at Gibbs Magnet School of International Studies and Foreign Languages in Little Rock, Arkansas.

http://www.fox16.com/mediacenter/local.aspx?videoId=3920194.

http://www.todaysthv.com/news/story.aspx?storyid=245001

Dear Friends,

You don’t know me personally, but I wanted to share my experience with you.  I do this with the wish that my story may offer a small ray of hope as you go on your grief journey in this New Year. While the pain of your events are fresh, please trust me when I say that the passage of time, an open heart, hard work, and a choice to embrace hope will allow you to survive the tragic events of the last few months.  If your family is like mine, joy will eventually come back, and you will find that while much has been lost, grace will return to you.  You will never be able to replace your loved ones, but blessings will come to help you continue living with knowledge that the love you hold and the love your departed had for you will never disappear.

It is just after Christmas as I write this. As I look back at the holiday, I am thankful that my family was able to have fun.  We visited with relatives and friends, worshipped, ate well (maybe a bit too well), laughed (we experienced many real belly laughs) and generally rejoiced in this 2012 Christmas season.  My kids (ages 16, 11, and 8) took events  in with a wonder that fit for their respective ages.  They saw cousins, played with toys and electronics, texted friends, and as is usually the case, teased each other (in good natured fashion, or so we tell ourselves  :)  ).   My wife enjoyed seeing her family, had a few glasses of wine, joked around, and although she’s always doing something, she sat down long enough to play a board game or two.  As always, I read, made jokes, imbibed, helped where I was needed and played with my Facebook account while watching any soccer game that could be found on TV (I am an admitted soccer addict). In a slight twist from recent years, the new fallen snow was a pleasant surprise up here north of Albany – we haven’t had a real good snow in the last few years, and this one added new life to the season… Recently, I read somewhere that it was a gift from our recently departed loved ones – a thought that I wholeheartedly believe.  All in all, it was a blessed holiday, and one in which each moment was felt in an honest and open way.

We weren’t always able to feel the joy we felt this year – While Christmas is a time where hearts become a bit softer, eyes a bit wider, and smiles a bit bigger, that joy was interrupted for us 12 years ago when my  15 month old daughter Sarah died in a tragic accidental window fall.  She would be turning 14 this May, which is a fact that never really drifts too far from our thoughts.  Sarah died when we were residents of Danbury, CT. during a vacation while we were away on the Jersey Shore. If you are anything like we were during that first season after Sarah’s death, the downtime that occurred in the lull period after the holiday was the one where we were hit square in the face with the grief of our loss.   Things were at their worst when the funerals concluded, attention lessened, and the many others who were so wonderful during the immediate window after the tragedy began to move on…while we were firmly cemented to the tragedy.  We were in shock at first and doing our best to put on a brave face, but the hardest time came when things slowed down and we were left alone to answer the existential question of “now what?”  At that moment, the true work of our grief began.

So, this question is what brings me to this letter.  Events in the last few months have seen children taken from us in violent acts like the Sandy Hook shooting and the car accident that occurred on the Northway in upstate New York in the last month.  My heart aches with the families that have lost.  Personally, these events feel particularly close to me, as one occurred in the place I chose to settle to further my own journey of healing through education and a new career plan (NY Capital District/Clifton Park), while the other occurred in the area I lived, loved, started my family, and where my own grief journey began (Western Connecticut/Danbury).

So with all of this, I want to pass on the message that hope exists despite the pain and confusion you may be experiencing now – While I can’t understand exactly what you are experiencing, I strongly empathize with you as you start this journey.  Through our shared proximity in CT and New York, and our similar experiences of loss, you all feel like my family.  And as family, I feel a need to pass on the following thoughts.  I pass these in a pay it forward fashion as they were offered to me by special angels from both of these communities…Know that I love you all…and cant thank you enough for what you gave to me and my family.

• Try to focus on individual moments.   I understand that you feel wounded right now.  Survival of the bad moments comes through the understanding that everything changes.  While you may hurt now, try to hang on with the understanding that something will come along to buoy you up in the next moment.  You may be familiar with the term “one day at a time…”  For the grieving, I would shorten that to an hour, a minute, and if need be, seconds.  Sometimes we need to know that pain will not last beyond the next nanosecond.  In my experience, that thought offers powerful healing potential.

• Do your best to Stay Open:   When wounded, it is a natural reaction to close down and hide.  Hiding helps us to ignore the pain.  At the same time, it’s also natural to judge others that interact with us for not grieving the way we think they should, or when someone that says something to us that appears insensitive.  That judgment however, is a temporary way to deflect our own feelings on others.  Our hearts close so we do not feel the full range of our emotion.  Unfortunately, burial/deflection/denial of feelings creates toxic outcomes.    Conversely, openness allows us to accept things as they are, to see with new eyes and allows us to heal.  So while you are inside your moments of pain and longing, cry.  Let go.  Just keep breathing.  The moments of quiet will open doors to help you heal.   Hug the others that feel awkward.  Find support in friends.  If needed, enlist a professional.  Walk in nature.  Write in a journal.  Paint something.  Draw.  Find a way to give to others.  Breathe the air.  Listen to the wind.  Feel the light on your skin.  Amazing things happen on the wind and the light – trust me…my hope(my deceased child) lives on in wind and light.

In closing and in answer to the question “what now?”  I don’t have an answer to give you right now.  That being said, I believe that answer lies within each of your hearts, and within your spirit.  I believe that you have the power to choose what happens next.  While at times things may feel as if they are out of control, you have the power to choose how you view the events that have taken place and how you will decide to move forward.  While the past will not change, every moment offers a new opportunity.  The possibilities of that choice are endless and offer an amazing way for you to celebrate the lives of your lost child.  For my family and I, that choice is all summed up in two words…“embrace life.” That mantra allows us to live differently than before, but with a wisdom and clarity that allow us to experience the full range of that joy.    We’ve embraced life by having more children, moving to undertake new careers, dedicating ourselves to the causes of organ donation and grief support, and living in ways that embrace the full realm of human experience, namely living with both love and compassion.  Today, we also see life from a two sided lens. While there is joy, there is also suffering.  Taken together, they encompass an authentic life which allows for real love and compassion to flourish.

May peace, blessings, and hope find you all during this New Year,

I may have said this, but I need to reiterate that your program was invaluable in our healing process – my wife and I took part in your parent groups and we’ve been able to forge into a world where we feel blessed to have healed to that point of different normal. While we miss our Sarah, we understand that joy is still possible, and our life is very joyful in a deeper way than we ever knew… At the same time, my daughter Meghan (who started with Healing Hearst at 5 years old) is a vibrant and well adjusted 16 year old who is planning to pursue a career in pediatric psychiatry. She is a top tier soccer player, carries grades in the mid 90′s on an AP level program of study, has just started to drive, and has overcome many of the potential developmental pitfalls that so many kids have. I was talking to her the other night and she mentioned that she feels as if she is very well defined for life in comparison to her peers, a lot of which was driven by her grief experiences which started in your program. So anyway – just a big thank you from us.

Wesley W. Merritt

Thanks to digital technology, families can select photographs, slides, and action shots of their loved one and put them to favorite music on a DVD that they can enjoy now and forever. Creating a powerful sentimental video will help get past the sadness and bring back the smiles. This video should be a celebration of a life.  Show your loved one in the happiest light.

Having the ill person help gives them a sense of control at a difficult time when they are losing control over many things. Leaving a living legacy for their loved ones is comforting knowing they helped plan the video. The video is something family members can keep and cherish and can be shared with anyone.

Here are some helpful tips on how to create a memorial video

1. Gather photos and images of the person you are making the memorial tribute for. Contacting friends, family, and club members will generate a lot of material to work with, giving you the best options to choose from.
2. Scan old photos and export them into your DVD creator or video editing software. Take digital photos of older prints. If you don’t have those tools at hand, a scanning service or website such as Smilebox or ScanCafe will provide the service for you. Use a high-resolution digital camera when photographing old photos. Lay photos flat and ensure that no glare appears on the surface. Arrange the view finder above the photo and position it to best effect for your snapshot.
3. Captivate the watchers by organizing the collection of photos. Group them by chronological order, by family and friends, or by personal accomplishments. Keep the photographs in an easy-to-follow, smoothly flowing presentation. Each photo should have several seconds on screen to give everyone time to reflect on the image.
4. Select one to two songs to accompany the images. Import the music directly into your DVD software, as you did the photos. Choose songs known to be favorites of the person or family members you are making the tribute for. The music and images together should make a video 4-7 minutes long.
5. Proof and then save your finished DVD product.
6. Make copies for family and friends.

DANBURY — Healing Hearts Center for Grieving Children and Families at 73 Stadley Rough Road in Danbury, a program of Regional Hospice and Home Care of Western CT, is offering drop-in hours to help those impacted by the Newtown tragedy. Our mission has always been to support families through the difficult journey of grief. Licensed social workers and specially trained volunteers create a safe place for healing to begin.  “Healing Hearts staff has been assisting with the crisis intervention efforts in Newtown and our hope is to continue to work closely with other community agencies to ensure comprehensive bereavement services remain available.  Coping with the death of a child or loved one is always difficult but the circumstances of this horrific tragedy undermine our ability to feel safe and secure and further challenges us as we try to move forward in a world that will forever remain changed” said Deborah  Ryan, LCSW, ACHP-SW, Vice President of Clinical Services at Regional Hospice and Home Care.

Healing Hearts staff will be collaborating with other agencies and school officials in planning long-term support  for the families and community at large.  Group/ program locations and times will be scheduled to best serve the needs of the families.

Drop-in hours are at Healing Hearts, 73 Stadley Rough Road in Danbury  from 11 a.m. to 4 p.m. Monday through Friday, 12/17 through 12/21. Support and educational material will be available for adults and children.

For more information please call Joanna DeNicola, LCSW MPA Program Manager 203-792-4422.

 Then there is the irony. Some patients flourish while on hospice and end up being discharged because they are doing so well.

 “The biggest misconception about hospice care”, says Robin Vicklund, Regional Hospice and Home Care Director of Nursing, “is that it’s about death. It’s not. It’s about living. It’s about staying connected to your loved ones and the world around you, and getting the most out of every single second you have.”

 Many people who come into hospice losing basic functions, losing weight or suffering from bedsores thrive from the expertise and attention they receive from hospice nurses, aides and other members of the team.

 The decision to go on hospice care has proven through numerous studies to help patients live longer and more comfortably.

 According to Dr. James S. Boal, the majority of hospice patients benefit from a slightly longer life. In a 2007 study in the Journal of Pain and Symptom Management, Medicare patients  with congestive heart failure, and those who had cancers of the lung, colon, breast, pancreas and prostate lived an average of 29 days longer that those continuing active treatment. A more recent study in the August 2010 New England Journal of Medicine found that patients with non-small cell lung cancer who were receiving palliative care lived an average of two months longer than patients seeking standard treatment.

 In addition to living longer, those on hospice have a higher quality of life in the time they have left. The ravages of curative therapy stop, they are free from the stress of frequent hospital admissions, free from the side effects of medication, they are no longer exposed to the germs in the hospital, and their pain and symptoms are micromanaged to prevent invasive hospital therapies the would increase stress on bodily organs.

 That leap of faith – as both Dr. Boal and Nurse Care Practitioner Marianne Potter discussed recently in a December 2, 2012 Livonia Observer article, “Choosing Hospice Improves Final Days”, is that it can be hard to know when to stop seeking a cure. However, if little is gained with more treatment and therapy causes a great deal of stress, hospice might be the better choice for living longer with more meaning and support.

“Thank you, I love you, I’m sorry, please forgive me, and goodbye.”  Read her full story here.

“Hospice care is really Velveteen Rabbit real.  There’s not all the ‘better thans’ and the ‘thing things’ and all the busy stuff that clutters our lives. You don’t worry about all the places to go and the things to get,” she says.

Over the years, she’s learned that who you are in life is who you are in death. She says people often realize that when they’re at death’s door and doing a “life review.”

Hospice nurses and social workers at Regional Hospice and Home Care of Western Connecticut agree that life review is an important part of end of life.  And those same five things are also critical for loved ones to say to the patient as well.

“Never assume that the person cannot hear if they don’t respond—hearing is said to be the last of the senses to be lost,” said Cheryl Koeber, director of counseling services at Regional Hospice and Home Care. 

 Saying those five things could contribute to living without serious regrets as well as dying in peace.

The holidays are a time when family and friends get together.  Planning a family meeting when the other family members are in town may be more convenient for all, and makes sure the loved ones’ wishes are heard in person.  How to start the conversation about scheduling a family meeting?  Jeanne Dennis suggests in her Huffington Post blog post: 

“Mom, we’ll all be together for the holidays, thinking about how much family means to us. How about we talk about some important family issues, including what you and Dad want should your health decline.”

Ms. Dennis says that, according to a recent study by the California Health Care Foundation, 60 percent of Californians say that making sure their family is not burdened by tough decisions about their care is “extremely important” to them. Fifty-seven percent say the same about making sure their wishes for medical care are followed. Yet 56 percent said they have not discussed their end of life wishes with family (the percentage of those over 65 was significantly higher: 71 percent.)

What are the barriers to discussing those wishes? Forty-one percent said “too many other things to think about right now,” 26 percent “don’t want to think about death or dying,” and 13 percent say their “loved one doesn’t want to talk about death or dying.”

Everyone acknowledges this is not an easy conversation to have.  But the consequences of not knowing your loved ones’ wishes may result in misunderstandings, conflict and unhappiness.  Regional Hospice and Home Care of Western CT urges you, whether you are an aging parent or a concerned child, to have this conversation.  However hard it may seem, it is an act of caring and love.

Sometimes people think that ignoring their sadness is the best way to cope.  But in most cases, remembering your loved one and connecting with what you’ve lost is healthier. 

“It’s important to accept all of our feelings,” said Jenny Casey, MSW, a social worker with years of experience working in grief and bereavement and a facilitator at the Healing Hearts Center for Grieving Children & Families.  “We need to keep our hearts open, to feel what we are feeling—that’s how we move on.”

Casey recommended thinking about what would really benefit you.  “Your life has changed, and sometimes traditions have to change,” she said.  “Check in with yourself.  Do you want a quieter holiday?  Or do you have the energy to carry on your old traditions?”

Finding a way to commemorate the loved one who died often is helpful.  “Maybe you can create a new ritual as simple as lighting a candle, or writing a letter,” Casey said.  Taking care of yourself during this time of stress and overindulgence is important.  “Be mindful of what you’re eating and drinking,” she said.

 A workshop on Grief During the Holidays will be held on two different dates, one in Southbury and one in Danbury, by the Healing Hearts Center, a program of Regional Hospice and Home Care of Western CT.  The workshop will be held in Southbury on Tuesday, December 4, 2012 at 3:30 to 5:00 p.m., at the Federation of Jewish Communities of Western CT.  In Danbury the workshop will be held on Wednesday, December 5 from 6:00 p.m. to 7:30 p.m. at the Healing Hearts Center.   Registration is required in advance.

To register for the workshop in Southbury, please call Debbie Horowitz at the Federation of Jewish Communities of Western CT at (203) 267-3177.  For more information or to register for the upcoming workshop in Danbury, please call Healing Hearts at (203) 792-4422.