If you are in the position of caregiver, it is essential to always be aware of the importance of taking care of YOURSELF! While this may mean different things to different people, here are some suggestions you may find helpful:

• Always accept offers of help. Have a list of things people can do to assist you, so when callers ask, “Can I do anything to help?” you have a ready answer. Walking the dog, making food, mowing the lawn, or picking up some grocery items are all good chores to delegate. Remember, people like to feel helpful, and if the situation were reversed, these are the same people you would be offering to help.
• Treating yourself to a massage, facial treatment or a manicure/pedicure could help offset the stress of being in the caregiver position. Yoga classes, meditation, and regular exercise are all good ways to recharge your battery, too.
• If you are comfortable talking about your caregiving situation with others, finding a trusted friend or co-worker to confide in may be a source of comfort and relief. It is especially helpful if that person has been through a similar experience and has some unique insights to share.

At Regional Hospice and Home Care of Western CT, caring for the caregiver is as important to us as attending to the patient. Our team includes a physician, nurse, hospice and home health aide, social worker and trained volunteers whose goal is to work to support the caregiver while caring for the patient. We want you to stay healthy so you can be the best caregiver that you can be!

Hospice care is more than pain management and symptom management. Regional Hospice and Home Care supports caregivers in many ways:
• We offer education on how to care for the patient physically. For many people, this is their first experience at caregiving.
• We provide all the durable medical equipment needed.
• Our staff supports you emotionally and spiritually as you travel this challenging journey.
• Short-term respite care is often an important part of how we take care of the caregiver.
• Trained Family Support Volunteers are available to help out with a variety of tasks, including staying with your loved one so you can go out for a while and do some “normal” activities.
• Support from Regional Hospice and Home Care of Western CT continues after your loved one dies. Our support team of social workers and chaplains are available to our families for 14 months after the death. They can guide you to resources in the community including many support groups that meet throughout the surrounding areas.

Our message is heartfelt and clear—self-care for the caregiver is as critical as hands-on care of the patient.

–by Cheryl Koeber LCSW, OSW-C, Director of Counseling Services at Regional Hospice and Home Care of Western CT

“Hospice nurses often feel that,” says Robin Viklund, RN, BSN, CHPN, director of nursing and home health aides at Regional Hospice and Home Care of Western CT.  “When treatment or cure is no longer an option, we provide comfort care to patients and their loved ones.”

Robin Viklund, RN, CHPN, director of nursing & home health aides

Hospice care enhances comfort and improves the quality of an individual’s life during the last phase of life.  There is a misperception that hospice is deathbed care, or even hastens death, but nothing is further from the truth, according to Viklund.  “As hospice nurses, our goal is to help patients live every day to its fullest, as defined by the patient,” she says.  “It’s more about living than dying.”

Viklund began her nursing career as a maternal-child nurse, and says this is not unusual among hospice nurses.  “Other case managers at Regional Hospice and Home Care were previously labor and delivery nurses as well,” she says. “Being a hospice nurse can be stressful and sad sometimes. But it is an honor to be there for the patient and the family, and to provide care at the end of life without invasive or uncomfortable procedures.”

Regional Hospice and Home Care of Western CT is honored to have an extraordinary team of professionals, including the nurses who are case managers, intake coordinators, liaisons and educators.  We’re proud of the quality of care we provide and appreciate the nurses who help make it possible.

 And so it began. There is no way, no words to explain how difficult it is to care for and watch a spouse, a father and grandfather grow weaker and more ill with each passing day. The fear that you must face when everyone has gone home and you are alone and terrified that you won’t be able to face the night and you pray for courage to get you both through to morning.

 He lived one full year. When there were no more options, Regional Hospice and Home Care of Western Connecticut walked into our lives, bringing comfort and care to all of us as a family unit. Angels had arrived.

 If there had been an in-patient hospice facility near by, perhaps in those final agonizing weeks I might have been able to continue working and still be able to be with him through the night.  Would Branford have been an option?  It would not have been realistic—I would not have been able to work and visit simply because of the distance.

 Having him in a safe home-like environment where loving, caring skilled nurses, social workers, hospice aides and spiritual support along with the family coming together as a team to ensure that he was getting the best possible care and comfort—what a gift that would have been. 

 My hope would be that other families in similar situations would have in the near future the option of an inpatient hospice facility nearby in Western Connecticut. An option we did not have.

Here is a video of Rep. Scribner’s remarks in the House:

Rep. David Scribner\’s Remarks on Hospice Facility Bill 

The number of Medicare hospice patients nationally has increased 9% each year for the last few years.  Yet, at 26%, Connecticut’s utilization of hospice during the last six months of life is significantly below the national average of 41.9%. People in our community want and need a hospice facility close to where they live, with a comfortable, home-like environment, for the times when in-home care is not possible or appropriate. 

All the staff and volunteers of Regional Hospice and Home Care of Western CT are so grateful to all of you who are advocates for our care.  We couldn’t take care of people at the end of life without your support and guidance.   We especially want to thank David, who is a long-time advocate and board member for Regional Hospice and Home Care, and the entire legislative delegation who shepherded this legislation through.

The bill will move to the Connecticut Senate, where the advocacy work will continue.     I urge our State Senators to pass this bill so that the people of Western Connecticut can have increased access to quality end-of-life care.    Please write or call your State Senators and let them know you support this bill. Their contact information is online at http://www.cga.ct.gov/asp/menu/CGAFindLeg.asp .

Meanwhile we are hoping that the parallel hospice facility regulations will move to the Regulations Committee by their June meeting.  Both these and the hospice facility bill are necessary to make our dream of building a hospice residence become real, to provide the wide range of end-of-life care which the people of our community want and need.

Cynthia Roy-Squitieri, MS, LCSW, CHCM, CHA

President and CEO

Regional Hospice and Home Care of Western CT

Elaine and Charles NeJame

Regional Hospice first came to our home to care for our dad, who died eight years ago.  A few years later, our mom was diagnosed with cancer just four months before she died.  Our mom was this incredible woman who cherished everything about life and living in the moment.

We were all taken aback when the very first thing that she did when she got diagnosed was to call Regional Hospice.  I mean that very day!  If that action sounds contrary to loving life then I would like to let my mom tell you all about the Hospice she loved.  She loved having Regional Hospice with us so much that she used to tease that she would come speak at the (Danbury) breakfast.

If you will indulge me, I would like to give her the opportunity to speak here today. 

“Dollies, I’m Elaine.  Let me start by thanking you, Regional Hospice, for the care you gave my husband.  Not just the wonderful nursing care, but the friendship you gave to me.  It remains intact.  You bathed my husband when I no longer could.  Your volunteers took him for rides during the times when he craved motion.  Spirituality was not his strong suit, but you found the way into his heart through music.  Hours of karaoke in our kitchen!

“I thank you all for helping my family to make his last year not only bearable, but one of the best we ever had as a family.  And then, thank you again, Regional Hospice, for taking me in after Charlie was gone.  For finding chores for me to do as a volunteer, for giving me your friendship and a place to belong.  You gave me the magnificent Healing Hearts Center.  It helped me start my new life, one where being a widow was not as frightening as I had been fearing.  You helped me to heal and become strong again.  This was most fortunate because then I, too, got diagnosed with cancer.

“Thankfully, I knew that you cared for homebound people even if they were not close to death, and there was simply no way I was close to death—I had so much living I still wanted to do, but clearly I needed help.  And so I started that awful chemo and you were right there, telling me what to expect and how best to deal with it.  You always deferred to my doctor and never caused a conflict. 

“You who deal with death each day know better than anyone that I have the right to choose life and to have my life be happy and full and even comical.  Although I wanted to know certain details of my illness, I chose to have it sugar-coated.  And you let me.  Thank you so much for that.  I really would have been so horrified if I had to focus on the end rather than being able to enjoy each moment.  Please, Hospice, tell more people out there that you give services for any person virtually homebound who is suffering from any potentially terminal illness.  If I hadn’t known, I would have missed so much care and caring.  My family would have struggled so much more. 

“Thank you for taking care of my children, easing their minds and helping them with the sadness in their hearts.  And in those last days when I was finally ready to say goodbye, you helped me with the words to speak to my own children.  You shared your strength and peace with all of us and in turn we shared with each other.   And even though I am gone, I know that you are still reaching out to my children to offer them whatever they need.”

It is hard to explain to those of you who have not needed to connect with Regional Hospice what it is like to have it there when your turn comes.  And that is why I am asking you to help keep Regional Hospice and Home Care of Western CT strong and viable.

National Healthcare Decisions Day is designed to raise public awareness of the need to plan ahead for healthcare decisions related to end-of-life care and medical decision-making whenever patients are unable to speak for themselves, and to encourage the use of advance directives to communicate these important healthcare decisions. 

“If there ever comes a time when you are unable to communicate your wishes regarding your medical care, an advance directive is a legal document that communicates your preferences to physicians and others who may be entrusted with your care,” explained Deborah Ryan, vice president of clinical operations at Regional Hospice and Home Care of Western CT.  “An advance directive is a gift that you give to your family so that they don’t need to make decisions for you.”

 “Everyone should take a few minutes to fill out a simple form to make sure that their wishes are met,” said Linda Pinckney, nurse liaison at Regional Hospice and Home Care.  Pinckney often leads workshops on why we all need an advance directive and how to complete the forms.  The next one will be held Friday, April 20, 2012 at 1 p.m. at the Newtown Senior Center.  For more information about National Healthcare Decision Day, please visit www.nationalhealthcaredecisionsday.org.

One young mother in hospice bought her daughter’s Sweet 16 jewelry.  She knew that she would not be there to celebrate with her daughter in two years’ time, but wanted her daughter to know her mother loved her and remembered that significant event. 

Other patients have left presents for holidays or special messages for their loved ones.  Writing letters to those they hold dear, to express affection, offer advice, or just share thoughts about their time together, is another way to be present with their loved ones at important times after patients have passed on.  Creating a video or audio recording to be shared in the future may answer this need as well.

The interdisciplinary team at Regional Hospice and Home Care of Western CT has members experienced in listening to patients and helping them carry out their final wishes.  Team members such as a chaplain, social worker or a trained volunteer are available to patients and are willing to help.

As Jean Anouilh wrote, “Love is, above all, the gift of oneself.”  Regional Hospice and Home Care helps hospice patients make this final gift possible.

Regional Hospice and Home Care of Western CT provides bereavement services to the loved ones of patients, and also to the Western Connecticut community at large through its award-winning Healing Hearts Center for Grieving Children & Families.  Caregivers of patients in our hospice care receive bereavement services for at least 12 months.  After 12 months they receive a Family Evaluation of Bereavement Services survey.  Responses to the survey are tabulated and reported by the National Hospice and Palliative Care Organization.

Based on surveys returned in July through December 2011, the most recent results for Regional Hospice and Home Care of Western CT were outstanding.  Key findings included:

• 100% received information about grief and loss, that what you are going through is ‘normal,’ an understanding of the personal grieving process and availability of support groups sponsored by Regional Hospice and Home Care.
• Nearly 76% found the information on availability of in-person counseling and how to cope with grief and loss very helpful, which surpassed the national averages.
• 70.6% rated Regional Hospice’s performance in “getting someone to talk to” as excellent, again exceeding the national average.
• Significantly, 40% of those responding to the survey made calls to Regional Hospice during their bereavement period, versus less than 18% nationally.

There is real hope for support and understanding through our professional staff and trained bereavement facilitators, who are there to listen and offer comfort during this time of sorrow.

“Often, the family is focused on making sure the patient is comfortable or trying to juggle caring for the patient with work, family and other obligations,” says Carolyn Wolfe, LMSW, volunteer director at Regional Hospice and Home Care of Western CT.  “They may have already heard Uncle Harry’s stories so many times and in that moment may not have the time to sit and listen to them once again.  One of the many ways our team can help is through listening to Uncle Harry during this stressful and busy time.”

The Regional Hospice and Home Care interdisciplinary team has members experienced in listening to patients and helping them tell their stories.  Team members such as a chaplain, a social worker or a trained volunteer are available to patients and are willing, empathetic listeners. 

Their training includes journaling, assisting patients in writing their stories.  Sometimes this can be a comfort by enabling patients to tell how they want to be remembered or to share family history they are afraid will be forgotten.  Other patients write letters or other messages for their loved ones.   Often they feel a real need to communicate and hope to be heard and understood.

As John Barth wrote, “Everyone is necessarily the hero of his own life story.”  We help our patients tell the stories they want to tell as they complete their journey.

Modern hospice care began in England during the 1960’s under the leadership of Dame Cicely Saunders.  From its beginning the focus was not only palliative care, which includes pain management, but also holistic care to meet the physical, social, psychological and spiritual needs of patients and their loved ones. 

Since the 1970′s when Regional Hospice and Home Care of Western CT was founded, we have been dedicated to providing care, comfort and compassion for those touched by advanced illness and loss.  An interdisciplinary team that includes a nurse, social worker, spiritual/bereavement professional, home health aide, and trained volunteers is responsible for supporting each patient and their loved ones with the services the patient chooses to accept.  Our agency helps patients and families find hope for physical, emotional and spiritual comfort in the midst of illness and turmoil.

Physical comfort, including pain management, is an important part of the care patients receive.  Alleviating pain improves quality of life for the patient and loved ones.  Hospice does not hasten death.  It strives to help the patient live in greater comfort .

Pain at end of life, as throughout life, is not only physical.  Often, emotional pain and spiritual pain also need to be eased.  Hospice care offers help for the whole person, so patients and their loved ones can have solace throughout this time of illness and loss.

Hospice is the “something more” that can be done for both the patient and the family when the illness cannot be cured.  Regional Hospice and Home Care is about living with hope—hope for comfort and peace of mind, hope that this journey will be lived on one’s own terms.  Our hope is you will let us walk the journey with you and your loved ones.