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

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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

Song Bath with the Threshold Choir

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This program was offered by the Hospicare Threshold Choir of Ithaca on February 21, 2021.

The choir members are volunteers at Hospicare. Our volunteers provide assistance to patients and their families in a variety of ways, and for Threshold Choir members that way is through music. Other Hospicare volunteers offer companionship, respite for caregivers, light housekeeping, and assistance with shopping. This is done in the patient’s home setting or our 6-bed residence on East King Road in Ithaca.

The Hospicare chapter of the Threshold Choir was started in 2017 by Jayne Demakos, then director of Hospicare’s Music Program. Threshold Choir as an organization was founded by singer/songwriter Kate Munger in 2000, and now has over 150 chapters worldwide.

Threshold Choirs sing for people at the threshold of life as well as for their families and friends, in private homes, nursing homes, assisted living facilities, hospitals and hospices. The choir sings in groups of 2 to 4 singers using the instrument that we all have, the human voice, to share songs of comfort and caring. 

Members of the choir are not performers. The choir sings to people who may have different levels of attention and different needs. They may sing softly and gently to someone who has fallen asleep or someone might sing along with us, requesting songs that have special meaning for them. The Threshold Choir does their best to honor wherever they are on their journey.

Since bedside singing is not currently possible, Hospicare’s Threshold Choir is exploring creative ways to share their voices and presence. The Song Bath focuses on sharing the joy of singing and promoting a feeling of well-being and ease.

We invite you to sit back or lie down, close your eyes, if you would like, and be bathed in songs that soothe the soul.

We hope that you enjoyed listening to our talented choir and that it brought you peace and a sense of calm during this crazy time in the world. Thank you to all the singers for letting us into their homes and for showing us what magic they can bring to someone in need.   

If you are interested in the Threshold Choir please contact Wendy Yettru at 607-272-0212 or WYettru@hospicare.org.

Faces of Cortland

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By Barry Miller

Team Member Profile: John Hughes, RN

Job Title: Primary RN/Case Manager

Residence: Cortland

Family: Wife Liz, two children (a son who lives locally and a daughter in Norway) and three grandchildren, with one on the way.

New Beginnings on the Horizon: “A current goal is to find a place with more land and barns and get back to having horses again.”

John Hughes knows a thing or two about new beginnings. “I’m kind of all about that,” says John. “I have always thought of life as an adventure and that the only limit is our own courage and imagination.”

Take, for instance, John’s 40-plus years of professional work, in which he has been a commercial truck driver, a blacksmith, an opera singer (“Please don’t ever ask me to sing—it’s long gone!” says John), a marketing/development manager for large hospital systems, a nursing home administrator, a manager for 55 skilled-nursing and assisted-living facilities, an owner/operator of a national firm providing clinical and operational consulting services to over 300 health care organizations in 30 states, and an owner/operator of a senior services campus—among other pursuits. “It sounds like I had a lot of trouble keeping a job, doesn’t it?” he jokes.

Speaking of new beginnings, what advice might John give a prospective Hospicare healthcare worker?

“It depends on what kind of work environment they may be looking for,” John says. “For someone who values autonomy and who is fulfilled by building a true relationship with patients and families over a long term, hospice is great. The reward is helping patients and their families through the final journey. Of course, we have accountability, but each day we are pretty much able to design our day, meaning where we go, who we see, and so forth.”

Regarding the unique aspects of hospice patient care, John reflects, “Our patients are as ‘real’ as they come. I have had more real heart-to-heart conversations with patients in the hospice setting than anywhere else. So, if a nurse is looking for this type of setting, Hospicare is a great opportunity.”

Outside of work, John is a board member of Cortland’s Family Health Network, a group of five federally qualified health centers in Cortland and Cayuga counties. John also enjoys gardening and farming their half-acre plot with his wife, Liz, a Cortland native. But perhaps his biggest passion is raising and farming with Belgian draft horses, which he did while living in Ohio. “Let’s call that a retirement goal,” says John.

Cortland Hospice Foundation Welcomes New Board Members

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The Hospice Foundation of Cortland County (HFCC), a nonprofit foundation that supports Hospicare, welcomed two new board members in 2020: Nancy Wainwright and Evelyn Sammons.

A resident of the Cortland area for more than five decades, Evelyn Sammons is a past board member for HFCC and for Hospicare. Now retired after a 30-year career with the Homer School District, Evelyn enjoys reading, hiking and biking. She is a strong advocate for hospice, believing that all patients and families in the Cortland area can benefit from the full range of services available to them, including grief counseling.

Nancy Wainwright, a resident of Cortland County for 70 years, served as secretary for the Marathon Elementary School for over two decades. Nancy enjoys traveling, reading and spending time with family. She views her volunteering as a way to “pay forward” her gratitude for the hospice services her family members have received in the past.  Nancy is also a strong advocate for fundraising, understanding that philanthropy helps patients receive exceptional care.

Hospicare thanks the entire HFCC board for the ways in which they support Hospicare’s mission!

Gearing Up for Women Swimmin’ 2018

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On the morning of Saturday, August 11, 2018 Cayuga Lake will be bustling with activity for the 15th Annual Women Swimmin’ for Hospicare.  Women Swimmin’ is a community swim—not a race—that raises money to support of the work Hospicare & Palliative Care Services. More than 300 women will swim 1.2 miles across Cayuga Lake that day escorted by nearly 200 boaters and supported onshore by 100 volunteers. Dozens of other women will be swimmin’ laps in pools in Tompkins and Cortland counties, across the country and even around the world in the months leading up to August 11.

Photo by Frank Leahy

Women Swimmin’ is Hospicare’s largest fundraising and community outreach event of the year.  Many of the services we provide to our community are possible because of the generous support we receive though Women Swimmin’. Obviously, all of us at Hospicare think it’s a wonderful event, but you don’t need to take our word for it!  The following is what some past participants have said about Women Swimmin’.

From women who swam across Cayuga Lake:

  • “My favorite part of Women Swimmin’ is the sense of community, joy and love on the day of the event, meeting new people, and knowing that I’m helping a family receive the end of life support the need.”
  • “It was one of the most beautiful and powerful days of my life and I can’t wait to do it again and again. The greeting I received coming out of the water from one of the volunteers moved me to tears.”
  • “I believe in the purpose, in Hospicare. The swim is a wonderful way to raise money and give back. Swimming across the lake I swim with all I have lost. Shadow swimmers beside me crossing the lake on a beautiful morning.”

From women who swam Laps:

  • “It just feels good to do something that is good for the community as well as for your own health.”
  • “I loved being able to swim Laps because I couldn’t make it back home to Ithaca for the swim! It was fun to stay involved despite being farther away.”

From some of our boaters:

  • “Rain or shine, wind or calm, it’s a great day. A chance to be on the water, do good, honor those that are gone, celebrate with those that are here, and help promote an extremely important and worthy cause.”
  • “It is a fantastic way to support friends, families and Hospicare. In a world that is full of negatives, this is a celebration of Life.”
  • “Hospicare was my family’s blessing a few years ago. I was glad to give back to them!”

If you’d like to join us for Women Swimmin’, as a swimmer, boater or volunteer, here’s what you need to know to participate in this year’s event:

  • Lake Swimmer registration will open May 7 at 6:00 AM. In past years swimmer registration filled in 2 to 3 hours, so if you’d like to swim the lake this year, we suggest you plan on setting your alarm for 6:00 AM on registration day. This year’s event is eagerly anticipated by women in our community–and beyond. Some will even come from other states and other countries to participate!
  • Boater registration opens April 15 and will be ongoing until August 5.
  • Women Swimmin’ Laps–where swimmers swim at their own pace in a swimming pool of their choice– opened for registration March 15 and will be ongoing until August 10.
  • Volunteer –registration opens May 15. We rely on the help of over 100 volunteers to make Women Swimmin’ possible!

For regular updates on the 2018 event, “like” Women Swimmin’ on Facebook.

For more information, visit www.womenswimmin.org

Women Swimmin’ 2017 a Success!

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On Saturday, August 12, 2017, 284 women gathered to swim across Cayuga Lake (a distance of 1.2 miles). They were escorted by 150 boaters in kayaks, canoes, stand-up paddleboards and powerboats. And they were supported on shore by 130 volunteers who helped out at Cass Park, the Ithaca Yacht Club, the swim entry on the east shore, and in the days and weeks before the swim. Joining these swimmin’ women in spirit, if not in person, were 38 women who swam laps in pools throughout our community and around the world!

The women who decide to participate in Women Swimmin’ for Hospicare do so for many reasons. Some are swimming in memory or honor of a loved one who received hospice services. Some are swimming because they understand the importance of hospice services and want to make sure Hospicare will be here to support their family someday. Others swim for the physical challenge or the camaraderie of this community swim. One reason they all swim was proudly declared on our t-shirts, buttons and posters: “I swim to celebrate life.”

Some of the Hospicare Angelfish – our staff who swam for Women Swimmin’ 2017

At its very essence, hospice is a philosophy of care that celebrates life. Hospicare’s mission is to support our patients so they can live their lives as fully as possible, for however much time is left. Our team of skilled professionals and trained volunteers work together to provide physical, emotional and spiritual comfort to our friends and neighbors who are dealing with terminal illness. All of us here today, plus thousands of donors around the world, have come together to make sure that care continues.  To make sure everyone in our community can receive the hospice and palliative care they need to live their lives fully, regardless of whether they have insurance or means to pay.

Celebrating life and living life fully means different things to each of us. Obviously, it can mean swimmin’ or boatin’ across Cayuga Lake, or back and forth in a pool!

For some of the people we support, living life fully might mean:

  • a portable oxygen tank so he can go out to dinner with friends or watch a grandchild’s ball game.
  • a wheelchair and a raised garden bed so she can get outside and plant flowers
  • a volunteer to help her sort through and organize family photos
  • a social worker–and others–trying to make sure a beloved pet finds the right next home
  • a grief support group with others who are also grieving the death of someone they love

Most of all, it means there is an entire Hospicare team to make the burden of caregiving and dying just a bit easier.

All of us at Hospicare are immensely grateful for these swimmers and boaters who have given of their time and put forth great energy to fundraise for Hospicare. We also appreciate the volunteers and boaters, the friends and families who have supported our swimmers, and also to the corporate sponsors and underwriters who covered the expenses associated with the event. We truly could not support our community in all the ways we do without your amazing support.

Thank you!

No One Swims Alone

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No one swims alone. I can’t even begin to count how many times I’ve said or typed that phrase in the seven years I’ve worked at Hospicare and been involved with Women Swimmin’ for Hospicare. It’s an important part of our Women Swimmin’ event—that no swimmer should be alone as she crosses Cayuga Lake. She should always be with an escort boat and ideally with other swimmers. Many swimmers and boaters say their favorite part of Women Swimmin’ is the community of the event and seeing so many other swimmers and boaters around them in the lake. It can be intimidating to be in the middle of a big, deep lake, but our swimmers are not alone out there.

The women who are swimming laps as part of Women Swimmin’ Laps for Hospicare are also not swimmin’ alone. They’re in pools with a certified lifeguard watching to make sure they’re safe. Some laps swimmers are part of a Women Swimmin’ team, who are fundraising together. Even if each swimmer is swimming her laps solo, she joins in the sisterhood of Women Swimmin’ for Hospicare. She is swimmin’–just as 1400 other women have swum over the years—to raise funds that support quality, end-of-life care for our community. While she swims her laps, she carries with her the memory of friends and family who have been served by Hospicare.

I’ve come to learn, and our Women Swimmin’ participants know or have learned, that “no one swims alone” is not just a Women Swimmin’ protocol but also a mantra for hospice care. Our staff and volunteers work together, as a team, to care for and support our patients and their families. Hospice is unique in that the focus of care is not only the patient’s physical needs, but also their spiritual and emotional needs, and those of their loved ones.

Our interdisciplinary team of staff and volunteers work together to anticipate and meet the various needs of our patients and their families. Some of those needs are medical (medications, medical equipment, personal care); other needs are logistical, emotional or spiritual. Whatever the need, there is someone on the Hospicare team who will make sure that need is met.

The journey of illness, death and grief is a difficult one. Your support of Women Swimmin’ for Hospicare means that our patients and their loved ones won’t have to make the journey alone. Hospicare will be there, with skilled staff and trained volunteers to provide the support, guidance and care that’s needed.

Because no one swims alone.

Melissa Travis Dunham was previously our manager of community relations at Hospicare. She was the event coordinator and helped organize Women Swimmin’ for four years.

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Illuminations: a Time of Remembrance and Community

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Each year, on an evening in early June, the gardens of the Nina K. Miller Hospicare Center on Ithaca’s South Hill glow with light. Visitors stroll our garden paths, which are lined with 300 luminarias, many dedicated to someone who has died. At the end of the evening a lighted canoe glides across our pond while trumpeters play “Taps,” and all who are in attendance pause to remember someone they love. This is Hospicare’s spring community memorial event: Illuminations.

This year’s Illuminations event will be held on Thursday, June 8. A reception and luminaria lighting begin at 7:30 p.m. A special program of remembrance starts at 8:00 p.m. Illuminations is held rain or shine. In case of inclement weather, the program moves indoors to the Hospicare Great Room. The event is open to the public. There is no cost to attend, although luminarias can be personalized for a suggested donation of $25. (Donations are greatly appreciated, but not required.)

If you are grieving the loss of someone you love, whether the death was recent or many years ago, and regardless of whether your loved one died on hospice services, we invite you to join us. Come experience the peace and beauty of the Hospicare gardens. Light a luminaria in memory or in honor of a loved one. Most importantly, share in the sense of community with others who are also grieving a loss.

If you would like to join us or make a contribution to have a luminaria lit in memory of someone you love, please RSVP online.

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Families More Satisfied when Hospice is Involved

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Founder of the modern hospice movement, Dame Cicely Saunders once said “How people die remains in the memory of those who live on.” At Hospicare, we recognize the great importance behind Dr. Saunders’ words. Our goal in caring for our patients and supporting their families is for death to be a peaceful, natural experience and not something to be feared.

Reuters reports that a recent study by the Journal of Clinical Oncology (online on December 19, 2016) found that families of cancer patients were more satisfied with the treatment and care their loved ones received if hospice was involved. The families surveyed for the study were more likely to indicate that their loved ones had the right amount of pain medicine and help with breathing difficulties when they had care and support from hospice.

Hospice is generally defined as being appropriate for people whose physician indicates they have less than six months to live. Unfortunately, many patients and families wait until much closer to the end to ask for our help.  “Our findings suggest that earlier hospice enrollment is associated with better symptom management, less pain, better quality of care, and a higher likelihood that patients will receive the care that they want in their own environment,” said study co-author Dr. Alexi Wright of Harvard Medical School and Dana-Farber Cancer Institute in Boston.

If you want to learn more about the benefits of receiving hospice care, or palliative care, please visit the Get Support section of our website. Or call us at 607-272-0212.