We brought my 95-year-old mother home to live with us at the start of the COVID-19 pandemic so we could safely give her the loving care that she deserved. Although the first nine months were filled with lovely meals together, fun family card games, holiday celebrations and bonding time with my two sons; my mother’s health began to rapidly decline after she suffered a fall. This decline necessitated a hospital bed, Hoyer lift, and an enormous amount of emotional, medical, and physical caregiving. Due to COVID-19, placing my mother in a nursing home was out of the question.
Hospicare to the rescue! I cannot begin to tell you how Hospicare made it possible for me to care for my mom at home and stay in balance at the same time. The emotional and informational support from the Hospicare social worker was phenomenal. She really cared about me, my mom and my family and made this difficult transition do-able. She helped me find and use every resource Tompkins County has to offer.
Weekly visits from Hospicare’s nursing staff taught us how to care for and love someone while they are leaving us. They helped with everything from stress management techniques and medical intervention to changes in nourishment, toileting and mobility. They answered every concern and question no matter how odd or uncomfortable. Most of all, the nurse who visited weekly and more during the last few weeks of my mother’s life helped us understand what we could expect and how to respond in a medically knowledgeable and loving way. Please support Hospicare so they can provide this immeasurable resource to others.
The home health aide that Hospicare provided gave me much needed respite to take care of other things in my own life that kept calling to me. The spiritual advisor checked in every week to ensure my mom and I had someone to process the changes happening during this challenging time.
And they did all of this for no charge to us at all! And so, I swim for Hospicare to give back so Hospicare might be able to help others enjoy and care for their loved ones at home during the last weeks or months they are with us. Please help me by donating what you can to Hospicare and Palliative Care Services.
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.
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”.
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.
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!
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.”
There are many stereotypes about Hospice that we see dispelled every day by patients in our service. Sometimes the sound of laughter and song float through our residence as patients connect with family, staff, and volunteers. And there are often signs of creativity, such as the handmade paper flowers Martha decorated the hallway of the residence with. Russell Bourne, or Rusty as he is known, is one of those patients on our services who seems to defy our expectations of what final stage of life looks like. While on Hospice, Rusty published a book of his poems.
Earlier this Spring, Rusty shared poems at Lifelong from his recently published book Between Sky and Water; Poems of Maine, the Finger Lakes, and Changing Weather. His poems elicit a rich felt experience of our relationships with the ever-changing landscape and how it can touch our hearts.
The event beautifully illustrated the community collaboration between Kendal, Lifelong, and Hospicare, and drew a lively audience as Rusty said “cried when they were supposed to cry and laughed when they were supposed to laugh”. Rusty’s poems were well received and he elicited many chuckles from the audience when he opened his Q&A by asking “Are there any other questions? Like where is Maine?”.
Russell Bourne began his career as a writer on LIFE Magazine
in 1950. Career interrupted by the Korean War, he operated as a Special Agent
in the US Army’s Counter Intelligence Corps in Berlin until 1953. He then
returned to Time, Inc, and served as Henry Luce’s assistant. Thereafter, he ran
several book publishing departments, from Time-Life Books and American Heritage
to the National Geographic and the Smithsonian. In the 1980s, he began creating
books on his own and published about a dozen works, mostly on American History
and Transportation, while also writing poetry. His poems have been published in
reviews and journals across the country. He is a Fellow of the Massachusetts
Historical Society. For many years his habit has been to spend summers in Maine
and winters in the Finger Lakes.
Many of Rusty’s poems document “the excitement that I find in nature”. This connection to changing weather and the patterns of life and death in nature, prepare the reader for taking on more challenging topics of the heart like love and loss. In addition to facing his own mortality, he has also had two wives that received hospice. These many touches with death, and navigating his own grief are themes throughout the book.
From his poem, At Finger Tips…
Stretch out to seek her soft hand across midnight bed’s
(though she is no longer there) and find answering fingers
cool and squeezing back on yours and know
love may come at black
At the end of the discussion Rusty advocates for everyone writing their personal memory “For our lived experiences are what make us, and no one will write them down if you don’t”. Russell’s book was published by Cayuga Lake Books and is available locally at Buffalo Street books or online.
Thank you to Rusty and his family for their support in writing this article.
When we heard the news of Bill’s condition it felt like my world was coming to a complete end…Life had no meaning…I kept asking, “Why?” We had so many plans for the future and now to be told this.
Hospice was brought up and explained to me how Bill could be at home with his family and not be in a hospital. We were also told that there would be someone to help us, just a phone call away whenever we needed it, even if our family needed it. Our Hospice nurse came often to check on Bill’s condition and would show us what had to be done and how to make him comfortable. She explained how to handle certain situations that might arise as it became closer to the end.
Hospice encouraged me to talk to him about what he wanted me to do with our farm and the people I should contact. This was something I needed to know.
Our nurse came at a moments notice if I needed her. She would arrive when tears were streaming down our faces and would have us smiling and talking about the good times all of us shared and memories we would never forget. She was our “Special Angel” and someone I trusted and who would listen when we really needed to talk.
Even when Bill was in a coma she told us to talk to him and tell stories that were important to us. Our nurse said he could hear us and I truly believe he did.
I never thought twice about calling in the middle of the night if there was a turn for the worse and if I was scared that I might do something wrong.
One of the hardest things I ever did in my life, that our Hospice nurse was very emphatic about telling me, was to let him know that I was going to be okay. Only hours after I did that, Bill died that night.
At that point I called Hospice and they came and took care of everything.
I wish everyone in our community would think about having Hospice if they have a love one in the final stages of life. The nurses and volunteers are there for you. To be at home with your family and things around you that you love is so important.
Shortly after the funeral Hospice contacted me to see how I was doing and suggested a volunteer would be in touch me that I could talk to. I did go out to dinner with her and after that she kept in touch with me.
I am so thankful for the doctor that put me in touch with Hospice at the time when our family needed it the most. As a board member of the Hospice Foundation of Cortland County, and as a family member of someone on service, I realize how important Hospice is and what wonderful things are being done.
Gail VanPatten served on the Board of the Hopsice Foundation of Cortland County. She wants everyone to know about the help and comfort that is available to them through Hospicare. She is pictured here, on the far right, with current members of the Hospice Foundation of Cortland County.
The Dryden Barber Shop has been in business 30 years, and Sylvia Short, the shop’s owner, wanted to throw an anniversary party. In keeping with the shop’s tenth, twentieth and twenty-fifth anniversaries, this party would be a fundraiser for a charity, but which one? “I thought, everyone loves Hospicare,” she says. “There’s not one person who says anything negative about hospice. Wow, how could anyone say no? It’s a win-win!”
Since making that decision, Sylvia has been planning the party with all benefits to go to Hospicare. She’s happy to do it, she says, because she is grateful for the care Hospicare gave her 85-year-old mother at the end of her life. Her mother was suffering from interstitial lung disease and reached a point where she decided to call Hospicare. “Mom called Hospicare herself and said, ‘What are my choices? I don’t know what to do,’” Sylvia remembers. “She told us she’d called hospice to find out the next step.”
Hospicare nurse Amanda McLaughlin, RN, immediately visited Sylvia’s parents in their home to explain hospice and to assess Sylvia’s mother for hospice service. Then Amanda became her nurse, visiting once a week to check on her and to keep her comfortable. Amanda and the rest of the Hospicare team made a real difference in the lives of all family members, Sylvia says. “That’s what Hospicare is known for. They help you. Hospicare made a huge impact because they were so good with my father. They were so good with all of us. It’s the way they present themselves. They’re not just there for the patient, they’re there for the whole enchilada. We certainly appreciated it.”
The Dryden Barber Shop event will be held at the Dryden Hotel and include a live auction starting around 3:30, face painting from 3:00 to 4:00, cake and a hot dog sale. There is a possibility of a raffle or silent auction, as well.
To see the items that will be auctioned, visit the Dryden Barber Shop’s Facebook page.
What: Dryden Barber Shop’s 30th Anniversary Celebration and Fundraiser