Why I Work in Hospice (Part 5) – Sarah Nickerson, Communications Coordinator

A Special Blog Series Written by Hospicare & Palliative Care Services Staff

This November, we started a special blog series written by Hospicare staff in honor of National Hospice and Palliative Care Month. Because we had such a positive response to the series, we are continuing it past November and into 2022. Each post features a different member of our staff as they share why they love the work they do. In part five of this series, we feature Sarah Nickerson, Hospicare Communications Coordinator.

Sarah Nickerson, Hospicare Communications Coordinator

“Hi, my name is Sarah Nickerson, and I am Hospicare’s new communications coordinator. I spent the summer helping Hospicare’s development team with Women Swimmin’ as the seasonal events assistant, and was hired into my current role by Sara Worden, director of development and community relations, in November. I am so excited to take on this role and help share the amazing work our team does and stories of the people we serve!

My relationship with Hospicare began many years ago. In my early twenties, I accompanied my mother, who was a Hospicare volunteer, to a bereavement group for children held at the residence on Kind Road. A few years later, I proudly waited on shore while she swam across Cayuga Lake as a participant in Women Swimmin’ for Hospicare. In the summer of 2018, my mother was diagnosed with a terminal brain tumor and given less than a year to live. We were fortunate enough to be able to move her into Hospicare’s residence for the final months of her life. Having my mother in care at the residence allowed us to be with her as loved ones and not caretakers, which we were ill equipped to be. Hospicare became a home away from home in those last two months before my mother’s death: a safe space filled with love, where I could be nurtured by community.

The amazing care that was given to my mother and to our entire family by Hospicare’s staff stays with me and is why I am so honored to be part of this team today. I look forward to continuing to help Hospicare provide our community with compassionate end-of-life care and grief support.”

I took this photo of my father holding my mother’s hand while she was in care in the residence at King Road just a few weeks before her death on Valentine’s Day of 2019.

***If you have a hospice or Hospicare story you want to share, please email Sarah Nickerson at snickerson@hospicare.org for more information or send a letter to:

Hospicare & Palliative Care Services

Attn: Sarah Nickerson

172 East King Rd

Ithaca, NY 14850

Why I Work in Hospice (Part 4) – Anna Osterhoudt, Social Worker

A Special Blog Series in Honor of National Hospice and Palliative Care Month

This November, we are sharing a special blog series written by Hospicare staff in honor of National Hospice and Palliative Care Month. Each post will feature a different member of our staff as they share why they love the work they do. In part four of this series, we feature Anna Osterhoudt, Hospicare Social Worker.

Anna Osterhoudt, Hospicare Social Worker

“My name is Anna, and I am one of three social workers that are a part of the Hospicare team. My role as a hospice social worker is to assess the needs of our patients, their families, and support systems and provide any assistance I can. A few examples of things that I may assist with are providing emotional support to patients/caregivers, connecting them with community resources, assisting with end-of-life planning, or just being a friendly face during what can be a very difficult time.

I have been working professionally as a social worker in the medical field for the last eight years. However, I only recently joined Hospicare & Palliative Care Services three months ago. Making the decision to join Hospicare was not a difficult one as I have grown to be very passionate about hospice work, both professionally and personally. It is truly an honor and a blessing to be on this journey and to be a part of someone’s final chapters on this earth. 

With the right support, death and dying can be a spiritual, dignified, and peaceful experience. To be able to be a part of that experience and offer support and solace to patients, caregivers, and families during that time is a privilege that I cherish. It can also be scary, emotional, and trying but what is so special about Hospicare is that no matter what the experience is, which is very different for everyone, we are never alone. As a team we support each other, the patients, their families and caregivers, other agency staff, you name it, we are never left to handle it alone.  So why did I choose to work in hospice? There is a saying ‘Find a job you love, and you’ll never work a day in your life.’ I was lucky enough to find that job with Hospicare.”

The Night You Died – a love story, a poet, and her legacy

By Jen Gabriel

It was a sunny spring afternoon and an unassuming envelope arrived in Hospicare’s mailbox. Inside, a generous check and a single piece of paper. 

“To whom it may concern,” the letter began. “Enclosed please find my final donation. I have a terminal illness and will not be further donating to any organizations. Sincerely, Joyce McAlllister.” 

Joyce’s friend and caregiver, Erin Quinn, said that this effort was Joyce’s way of saying goodbye to the dozens of nonprofit organizations she had supported. 

“Joyce had a soft spot in her heart for nonprofits of all kinds,” Erin explained. “She made small gifts to them her whole life, and when it came time to prepare for her death, she wanted to be sure that her favorite charities knew why her giving would soon stop.” 

In addition to supporting Hospicare and a handful of other local organizations, Joyce made gifts to many animal rescue organizations. 

“Joyce always said, ‘everyone always cares about the elephants and the big cats, but no one ever thinks about the donkeys’,” Erin said, with a chuckle. “She loved her donkeys.” 

Born in Ithaca in 1931, Joyce and her family lived on dairy farms in Groton, and later in Dryden. She graduated with an Ithaca College degree in drama, left the area to live in New York City for a few years, and returned to the Ithaca-area in 1960. It was then that Joyce began a 30-year career at Cornell University.   

Joyce’s strong connection and affinity for Hospicare began in 2004, when the agency cared for her husband John, first at home, and then at the residence.  

“Hospicare did everything right by Joyce,” Erin said. “She felt so supported and cared for, and that meant everything to her.” 

After she retired, Joyce turned to poetry writing. She published her first book of poems at the age of 85.  In fact, it was her 2004 experience with Hospicare that inspired her poem, “The Night You Died.” The poem expresses Joyce’s gratitude for the Hospicare nurse who had sung her husband’s favorite Irish tune with him in the moments before he died. 

A copy of that special poem is below. Joyce’s third book of poetry, published posthumously, will be available for purchase later this year.  

The Night You Died 

Afterwards, they told me  
how you sang your way 
to death, head raised high  
to catch your ever-thinning  
breath, singing melodies you  
learned in youth, forming  
words you watched parade  
across closed lids. 

The Night Pat Murphy Died  
sounded from your bed,  
moved out the door, down  
the hall; your soul followed  
with a will, anxious now to  
find that spot of green you  
knew from birth was yours  
to claim. 

They said your voice was  
resolute and unafraid,  
an Irish tenor making  
song to spend the leap  
from finished life to  
timeless death. Beside a  
stone in County Cork,  
ancestors perched  
and waited.  

Alzheimer’s Doesn’t Mean that a Good Life is Over…a Letter from a Son to his Mother

Sometimes, we might not have the words right in the moment, but through contemplation and the creative practice of writing, the depth of understanding comes. Here a son reflects on the gifts his mother gave him in a letter he wrote to her after her death. Writing a letter to a loved one (even if you never send it) can be a healing act.

Thank you Steve Demakos for sharing your reflections on being a caregiver for your mother. It is an inspiration to us all to cherish the times we have with loved ones.

Dear Mom,

Thank you from the bottom of my heart for the gift you have given to me for the last five years- making my home your home with warmth, laughter, smiles, and lots of hugs.  You may not know this, but in this time you taught me the truest meaning of love.  It’s as if you have given me two lives.  The first, of course, many years ago in a New York City hospital.  The second life beginning the day I started helping you with your Alzheimer’s and continuing for the five years you lived with me at Valley View Road here in Ithaca. This is where you showed me that giving is more powerful than taking and can actually heal a fractured relationship. You and I became best friends and in our five years together you offered to me the fierce love of a mother and the genuine loyalty of a best friend. You and I together- remember I would always tell you we were a team- showed the world that having Alzheimer’s doesn’t mean that a good life is over. Together you and I started new family traditions. Your favorite: every Sunday morning a homemade cinnamon bun with your coffee. My favorite: the deal that we made that whenever you would give me a smile, I would give you a hug, which turned into countless hugs.  

On Thanksgiving morning, when you decided it was time for you to move on, I was overcome with a sense of loss that no words could ever describe. I have come to realize that that may have been your greatest gift to me.  As time goes on, I realize that you and your love haven’t gone anywhere.  You and your love reside deep inside me, exactly where they were that day in the New York City hospital when you helped me come into the world.    

Mom, I will close for now with one more of our traditions:  as I would say to you every night before you would fall asleep, “thank you for being my mom”.  And you would say to me, “it’s my pleasure”.  

Love,

Your son

In Gratitude…

This time of year we traditionally gather with friends and family. That may look a little different this year, but we can still cultivate gratitude in our hearts. 

November is also National Hospice and Palliative Care Month, a time to pay special recognition to the work done every day by these skilled individuals, whose dedication to Hospicare’s mission has withstood even a global pandemic.

The story of Norma Helsper (as told in the video below) highlights the continuous service our interdisciplinary team has provided to all those that need our care in our community. 

We also wish to honor those advocates, volunteers, referral partners, and donors whose support sustains the good work of Hospicare. We thank YOU for all the many ways you support Hospicare!

End-of-Life During a Pandemic; Norma Helsper Made the Best of it.

By Jennifer Gabriel

From the moment Norma Helsper moved into the Hospicare residence, staff knew they were greeting someone special. Phones rang off the hook with dozens of friends asking about visitor restrictions, and whether it would be okay to drop off flowers or her favorite custard. “Norma’s got spunk and you’re going to love having her there,” one caller told me. 

So maybe I shouldn’t have been surprised when I walked into her room for the first time.

Norma is perched in her recliner, carefully studying her absentee ballot for the New York primary election.  

“You’re voting!” I say. 

“Of course I’m voting!” she exclaims. “Of COURSE! This is an important year. Too important to miss.” 

Norma folds her ballot and places it on her table, as I settle onto the edge of her bed. Norma’s mom is sitting across from us, answering a cell phone that never stops ringing.  Because of Hospicare’s COVID-19 restrictions allowing only one visitor in the room at a time, Norma’s sister sits outside, waiting for her turn. 

“It’s awful,” Norma says when I asked about her experience in facing end-of-life in a pandemic. “This makes it so hard for me to see my friends, though I’m grateful that one can be here at a time. I know that’s not true in so many other places.” 

Thirty-three years ago, Norma moved from her childhood hometown outside Chicago to the Finger Lakes. She had accepted her dream job in the Spanish department at SUNY-Cortland, where she quickly became close with her colleagues. The tight-knit group of friends are many of Norma’s callers and visitors these days, and they show up in ways both big and small.  Luscious bouquets of flowers fill every surface in Norma’s room, and greeting cards cover her bulletin board. 

As we chat, Norma points to a wilted flower arrangement on a table behind me, and kindly asks if I can remove it.  No sooner is it gone and she is back on the phone. “Good news!” she tells a friend. “There’s room for more flowers! Bring some anytime!” 

Norma and her husband first settled in Cortland, and eventually moved to Ithaca, where they bought a home in Fall Creek. “Oh wow — the Halloweens in Fall Creek!” she chuckles, referring to the hundreds and hundreds of families that flock to the neighborhood every year for candy and community. “That night is something, isn’t it?” 

Norma is easy to talk to and quick to crack a smile, so I understand why people gravitate towards her.  One of those people – a friend named Mary — is the reason Norma came to know about Hospicare. 

“Mary was a wonderful, wonderful friend,” Norma explains. “One day, she called me up and said, ‘Norma, there’s no easy way to say this: I have lung cancer’.” 

Eventually, Mary moved into the Hospicare residence. 

“I remember it was room 3 because that one has the larger deck,” Norma recalls. “And one day we had a little soiree there with a whole bunch of friends. We really had the nicest afternoon. It was such a nice moment, and a truly great memory of Hospicare.” 

In the years that followed, Norma continued to support Hospicare, raising money for the agency as a swimmer for Women Swimmin’ for Hospicare.  

Surgery and treatments kept Norma’s ovarian cancer at bay for several years, but this spring, it became obvious that Hospicare is where she needs to be.  “The people that take care of us are amazing,” she says. “The rooms are comfy. The birds are beautiful. The grounds are beautiful.” 

Norma’s days are filled with friends calling her phone, trips through the Hospicare’s gardens, and visits with her good friends from SUNY-Cortland and her church, the First Unitarian Society of Ithaca.

Twice now, three of her talented friends have come by to play music for Norma to enjoy – since they aren’t able to be in the residence together, they pull up a picnic table and sing to her from below her porch window. 

That’s also where the minister from the Unitarian Church planted 16 colorful flamingos in the grass, to give Norma a laugh. 

Norma remains upbeat, but this hasn’t been an easy road.  Norma’s husband needs round-the-clock care and lives in a nursing home. The couple has not been able to get together, not even virtually, since he doesn’t know how to work the technology. “It’s very hard,” Norma tells me. “It’s what we both had to do and it was the right decision. I know that. But it’s still hard.” 

Norma’s only daughter lives in a group home some 45 miles away. Restrictions there mean no residents are allowed to leave – the staff made a special exception for Norma, so she was able to see her once so far. But of course, that’s not enough. 

And then there’s her 92-year old mother, Betty, who traveled from the Chicago area to be with her daughter for a week. She hopes to return soon, but traveling is difficult at her age, and she isn’t sure when she’ll be able to make the trip. 

I ask if I can take a photo of them together. “Of course,” Norma says with a smile. Betty is a little more reluctant, quietly admitting that she hadn’t taken a single photo of Norma since she moved to Hospicare.  

Betty pulls out her phone and swipes to find a picture from last fall, when Norma’s cheeks were full and her body stronger.  “Isn’t she beautiful?  Just so beautiful.” 

Norma encourages her mom to take the photo with her, and Betty moves carefully to Norma’s side.   

“This isn’t what is supposed to happen,” Betty says to Norma, once the photo has been taken and she’s settling back into her chair. “I’m supposed to go before you.”  

Her voice quivers. “This really isn’t what is supposed to happen. It’s just not.”  

“I know, sweetheart,” Norma replies softly.  

They lock eyes. 

 “I know.” 

VIDEO: Illuminations 2020

Enjoy the recording of our Virtual Community Memorial. As we navigate these uncertain times, how we define and feel grief is changing. We mourn the significant loss of loved ones in our lives, as well as the 114,000+ Americans who died as a result of the pandemic. We grieve for the turmoil in our country, the loss of “normal,” and the ways in which we have had to modify our ways of life and our interactions with one another.

(Fast forward through first 5 minutes)

Grieving From Afar

By Laura Ward

The COVID-19 pandemic has changed our lives in so many ways including the devastating impact on how we are able to mourn the death of our loved ones. When a death occurs, we have patterned ways of responding based on tradition, culture and religious beliefs. 

These responses are comforting for both the bereaved and for those providing support.  Soon after receiving word of a death, our support system mobilizes. People often begin showing up with food or flowers, jumping in to care for the children of the bereaved offering to run errands or help arrange a memorial event.   Cultural or religious beliefs provide ritualized ways to mourn which offer comfort in their significance and predictability.  These rituals mobilize community support for the mourners.   Muslim communities wash the body, wrap it in a piece of cloth and bury their dead quickly and in the presence of loved ones. This allows the soul to rest peacefully.  Christian and Jewish traditions call for close proximity with the dead in order for those left behind to confront their loss.  Events such as Repass, and Shiva allow survivors to find refuge in their communities.  In some cultures, those close to the bereaved will take turns sitting vigil with the family for days or even weeks after a death. 

During this health crisis, social distancing has made it so that people are unable to grieve their loved ones in traditional ways.  Without these rituals and the opportunity to be in the presence of the person who has died, see the casket and be around other people grieving the deceased, it can be harder for those grieving to make sense of the loss and eventually accept that their loved one has died.  Having traditions to follow and a set of rituals enables people to integrate the loss into their life.  Without this element of face-to-face support and left alone in quarantine, people experiencing losses may suffer more due to the isolation necessary for social distancing.  Social isolation has also been shown to prolong grief. 

In addition, we are in a stressful time, people are experiencing many losses beyond the death of a loved one ― including the loss of a job, savings, sense of identity and more. These additional stressors can get in the way of grieving normally, additionally those who would normally support the bereaved might be distracted by these stressors in their own lives and may be less emotionally available to provide support.  Also, people are overwhelmed with fears about contracting the virus or losing more loved ones to COVID-19. These all-consuming feelings may prevent people from acknowledging their grief, but it’s important to create space for it. Delaying grief is not healthy and can lead to long-term physical and psychological challenges. Instead of holding grief in, find new ways to go through the grieving process and say goodbye to your loved one within the limits of social distancing.

You don’t have to be alone.  It’s important to avoid withdrawing from friends in your grief even though we can’t support each other in person at this time.  The best thing we can do when we are grieving it to reach out as much as you can to family members through phone calls and video platforms.  Friends and family members can gather via chat conference to talk about their lost loved one, share memories or simply cry together and know they aren’t alone in their grief. Sending emails and letters to people in your network is another way to take part in a collective grieving process. I have often had clients speak about how meaningful it is to receive letters which include personal stories or experiences of their loved one that has died.  Some families or group of friends start group text chains to check-in or share memories or thoughts of the deceased.  The key is to talk to someone else about your feelings, rather than keep them bottled up. It’s important to find connection in whatever ways you can. Being intentional about the emotional bonds that are still present can provide some comfort, this is not the same as being able to have a hug or to sit together in close proximity but the virtual connections can be a way in which the emotional connections can be expressed where we are at now.  If you lack the motivation to follow through on connecting, try to book times for phone calls and video chats. Arrange these conversations as appointments you must keep. Agree on times with people in advance so you are more likely to follow through. Of course, choose to connect with people who provide healthy support, are responsive and flexible about your needs.  The amount of contact we need and want can vary on a daily basis and it’s helpful to connect with those who are understanding of this. 

Funerals and memorial services are valuable both on a practical to provide structure in that they give people tasks and a way of coming together to grieve.  They provide confirmation of the death though being able to view the body and grieve in community.  Physical touch through hugging our love ones is incredibly healing.  This coming together also empowers social support and connection, reassuring us that we are not alone in our loss.  Celebrating a loved one’s life in a public group setting with others is a very healing part of the grieving process, but social distancing and stay-at-home orders mean many families must delay memorial services for an unknown amount of time. The uncertainty of when they might be able to honor their loved one in this way is difficult and anxiety-provoking. Recognize that this is temporary and although there is a delay, these services can still take place and it is important that they do in order.  It can be helpful to think of these services as being delayed rather than cancelled. 

Depending on where you live and how you’ve been social distancing, you may be able to have a small service with immediate family, and there are ways to include others in the experience.  Many funeral homes are offering livestreaming of graveside services or larger, interactive virtual funerals.  Some allow immediate family the right to attend the burial process, while still following the CDC recommendation of no more than 10 people gathering in the same space. Mourners can still drive by in their vehicles in a parade, staying in their car while offering their respects.  Others have offered drive-thru windows with a video of the person on a monitor or in-person visitations with two people allowed in at a time and disinfecting between visitors.  One benefit of virtual funerals is that people who ordinarily might not be able to attend services, due to living far away, finances or even a discomfort with grieving in public, are now able to participate.  However, this process will not work for those who do not have or are uncomfortable with technology. It’s unclear when traditional funerals and grieving rituals will be an option in the future, but that doesn’t mean it’s impossible to process your grief and move forward in this uncertain time. Recognize your feelings of grief, loss and sadness as normal during this time. 

Identify and acknowledge any thoughts feelings that arise and let yourself move through them.  A wide range of feelings are normal during grief and it is often described as a roller coaster of emotions. Expressing whatever comes up can be helpful and writing out your feelings can be a therapeutic experience in times of grief. You can keep a private journal for your eyes only or even write a tribute to share with loved ones.  Some people find healing through writing a letter to the deceased.  Remember the times you spent together and share these memories with loved ones. Looking through photos can bring comfort, creating a photo slide show or music playlist can be another way of honoring and celebrating the relationship with your loved one.  Just like a written tribute, it can be shared now online or at a future memorial service.  Make a memory box, draw or scrapbook.  Engaging children and adolescents in these activities can also give them an avenue to process their grief. Consider other rituals that will allow you to express your grief now…light a candle, create some art in their memory, plant a tree or cook your loves one’s favorite meal. 

Generate a plan for coping.  Ask yourself how you usually take care of yourself during a difficult time and modify these to work in the current situation.  You can still do things like read, take a bath, go outside, eat healthy meals and nap.  You might find it useful to think about how your lost loved one would like you to respond in these circumstances. You can use this exercise to help generate coping strategies. Recognize that less activities in our lives make more time for thinking and feeling, this can be good and also overwhelming.  Distract yourself on occasion with activities you enjoy or try something new.  Moderate your news intake and be gentle with yourself around fear related to the pandemic. 

If more support is needed, reach out to the professionals.  Grief support is being offered online by many hospices and mental health professionals including Hospicare.  At Hospicare, we offer both individual and grief support in an online format.  There are social media groups for grief support as well as many online resources.  At hospicare.org/blog you can watch videos made by our interdisciplinary team with tips, resources and activities to cope with grief.  Connecting with online communities of grieving people help grievers feel less alone.  Talk to your doctor if you are experiencing physical symptoms of grief.  Grief is hard, it’s a different experience for everyone and there is no right way to grieve.  Practice self-compassion, allow yourself to have a good cry and take good care of your mind and body during this challenging time.