"What Happens When...?"

Life can change for the better or worse at a moment’s notice. While we cannot prepare for many situations we will encounter along the way, having some basic knowledge ahead of time can make dealing with them easier. Because many middle-aged people in our community have the privilege of having their aging parents living longer than ever, we thought it would be helpful to answer some questions that may come up as your loved ones age and prepare for end-of-life.

Q- My mom lives in Addison County and I live out-of-state. She has recently been diagnosed with a terminal disease and I cannot be with her all the time. What should I do first?

A: Patient referrals to hospice come from their physicians. If your mom has a serious diagnosis and has not already been referred to hospice care, we recommend that you call your mom’s physician and discuss whether a referral to hospice care is appropriate. If the answer is “yes”, and the physician has had a discussion with your mom about her prognosis, the physician will send a referral to ACHHH. This agency will contact your mom promptly and arrange for an intake visit. A member of the hospice team will meet with your mom and work to develop a plan of care to best meet her needs. She will receive kind, skilled, compassionate care in her own home for as long as possible.

Q: Who will provide care for my loved one while she is a hospice patient?

A: Hospice provides an interdisciplinary team which may include registered nurses, a palliative care physician, social workers, home health aides, trained volunteers and hospice chaplains. Hospice nurses provide medical care including pain and symptom management. Social workers assist patients and families prior to death and follow up at scheduled intervals with family members for the first year following death. End of Life Services provides companionship, respite for family members and help with practical matters like shopping and transportation. The Wellspring hospice singers or other musicians from End of Life Services visit patients at any stage and provide bedside music. Hospice chaplains assist patients and families with spiritual needs at the end-of-life. The inter-disciplinary hospice team meets on a weekly basis and reviews the care plan for each and every hospice patient, because every patient is unique. As situations change the care plan is re-assessed and updated with input from the patient, family members and the care team. It should be noted that the hospice team does not provide 24 hour direct care, and in order to stay in the home, a patient needs to have a family member or paid caregiver living with her.

Q: My loved one lives alone but staying in the home is not practical or even possible. She requires hospice care. Are there any other community resources that can help?

A: In Addison County we are fortunate to have Addison Respite Care Home (ARCH) rooms located at both The University of Vermont Network Porter Medical Center (The Estuary) and Helen Porter Rehabilitation and Nursing facilities. These are rooms designed to accommodate people who need end-of-life care but cannot remain in their homes. Each room offers a home-like environment, hand-made furniture and quilts, pull-out sleep chairs for family members and a music system. Patients who are admitted to ARCH and the Estuary rooms are cared for by employees of the hospital and nursing home as well as ACHHH nurses and hospice volunteers.

Q: What should I do if my loved one passes away at home?

A: Do not panic! If your loved one is not under hospice care, you should call 911 and await further instructions from emergency medical and law enforcement personnel. They will assist you in having your loved one transported to the hospital emergency room where a doctor will make a pronouncement of death.

Q: Is the process different if my loved one was being cared for by the hospice team?

A: Yes! One of the main benefits of hospice care for families is that at the time of death you only need to call Addison County Home Health and Hospice. ACHHH has an answering service which operates after normal business hours. The on-call nurse can go out at any hour to attend to your loved one at the time of death and make the necessary pronouncement. She will assist with preparing the family for next steps. If a person is being cared for by hospice and dies at home, there is no need to call 911.

Q: Once my loved one passes away, is my relationship with the hospice team over?

A: No. Bereavement support is available from ACHHH and End of Life Services. ACHHH provides individual bereavement counseling for family members of our hospice patients and EOLS offers both individual and group bereavement support services and volunteers to companion during this time.

Celebrating Hospice Volunteers

What if . . . ~Priscilla Baker, Program Director

In honor of hospice Volunteers, Garden Party 5/24/18

What if there were no hospice volunteers?

What if there was no one to sit at your bedside,

Or bring in your lunch tray,

Or drive you out to the lake on a sunny day,

Or read poems, tell you the local news,

Or sing those songs, you listened to in high school?

What if you had to go it alone?

Watching your daughter, day by day,

Grow more exhausted,

Watch the same TV shows, over and over,

Game shows and Gunsmoke,

Watch the same of crack in the ceiling

Wondering and worrying, that it's growing longer.

What if you woke up from your nap

And felt the presence of someone by your recliner,

With nothing else to do but sit with you?

What if new ears listened to the same old stories

And then asked for another one?

What if you dared to talk about how it feels

To have your lifetime coming to an end

Without someone saying, "Don't talk like that,"

Or "Don't worry, nothing's going to happen."

What if you reach out and someone takes your hand?

That's all.

Just takes your hand while together

You breathe in the silence between you

As you drift off to sleep.

A Hospice Heart

~Laurie Borden, EOLS Program Director

We are devoted to our volunteers. You bravely walk into the unknown,

into the depths of the dying process, with your souls open to possibility.

We offer our gratitude for you each and every day, when we understand

how you transform the world of the patients and families you visit.

Love is a sacred action, which comes so naturally as yu walk the path of

a hospice volunteer. There is no greater art, avocation or aspiration

than to touch others with your care, your credibility and your

compassion as we travel on this journey.

Deep within us

beats a home

for our most authentic selves.

Here lives our need

to hold our most vulnerable others.

We meet on the thresold

together

our simple beings, pausing

whispering

listening

awakening

witnessing

until all melts into one

a single hospice heart.

We hope your screens let you seen half a heart or an angel wing.

HVS Celebrates Milestone 35 Years

Originally posted May 18, 2019

35 years ago, a group of community members had a vision for providing better care to families, neighbors and friends who were facing death, but, at that time, with little support. They met, consulted with others, made a plan, incorporated, established ongoing guidance with a volunteer Board, and put out the call for community member who felt inspired to become trained hospice volunteers. The first class of volunteers met for 10 weeks in the summer of 1983.

In 2004, a new kind of volunteer program took root: singers who would rehearse regularly and sing for those who are dying, wherever they live. Wellspring has been singing at bedsides, community care homes, memorial services and hospice events ever since.

Because volunteers (patient care providers, Board members, Wellspring singers and office helpers) are the heart and soul of who we are, we want to begin our celebration of the first 35 years with YOU, our faithful and compassionate volunteers.

The Heart of Grief - "Reflections on a Final Journey"

~ Andy Davis

THIS IS A STORY OF THE TRANSFORMATIVE POWER OF GRIEF AND LOSS. It is a moving account of how one man, in honoring his wife’s legacy, discovered that care-giving or giving care to memories can nourish a sense of deep connection. Through a personal ritual or ceremony we can create a tangible love to carry us forward in our lives.

For many summers my wife, Pam Carter, had worked out west as a white water river guide. She loved being on the water and before she passed away she asked me to take her ashes to a river that had been significant in her life. In reflecting on her request, I thought of the Hudson because Pam had been born in NYC and also for the connection it has to Lake Champlain where we had spent many happy times.

The plan became for me to paddle Pam’s kayak with her ashes from Kingsland Bay in Ferrisburgh to Fort Edward, NY, where the Champlain Canal meets the Hudson River. There I would fulfill her final wishes.

As I departed last September my biggest fear was that I would sustain a paddling injury, but after five days with no aches and pains I reached Fort Edward. Feeling well, I decided to continue beyond this original destination. Over the next eight days I became captivated by the solitude and beauty of the river.

To my surprise I eventually reached Manhattan, where I recalled that Pam had once pointed out the hospital where she was born. I could see it from the river and it was here that the circle of Pam’s life was connected.

I had decided to take the train home, but what to do with the kayak? Paddling on I discovered a kayak center at Pier 84. I was happy to learn that the organization is committed to introducing young people to kayaking. My dilemma was solved. I donated the kayak, paddle and life jacket to the center. It seemed fitting as Pam had taken many kids out on rivers in her guiding days and continued to help young people in her later work as a psychotherapist in Middlebury. When I told the manager the reason for the trip he replied, “from now on the kayak will be known as the Pam.”

During the train trip home I caught many glimpses of the river Pam and I had just traveled together. It was a surreal trip back, emotions as turbulent as the waters of NY harbor. Yet it was heartwarming to know that Pam’s kayak had a new purpose – that of teaching and helping young people - a mission to which she devoted her life’s work. I knew then that her legacy of that work would continue… there on the river.

Andy Davis lives in Middlebury and continues to enjoy kayaking, often in some of the favorite spots where he and Pam had paddled together.