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Hospice Buffalo Patient Stories 

Forgiveness and Acceptance Nurtures Gratitude 

“If you forgive and learn to accept the things that happen in your life, you can move forward with gratitude,” explains Irene as she shares her story.

For the past 7 years, Irene has been caring for her mother, Mary, a 93-year old Hospice Buffalo patient. Irene is tired, but unstoppable. She is simply grateful, “After everything my parents have gone through and did for me, it’s the least I can do for my mom. My parents sacrificed everything for their family.”

Mary was born in the Ukraine. When she was 13, German soldiers invaded her home in the middle of the night and captured Mary, along with her cousin Anna. When the soldiers realized Anna was blind, she was removed from the train.

In early 1945, Mary met the love of her life at the camp. They remained as prisoners until May 8, 1945, the end of WWII. After they were married Mary and her husband settled in Poland until the threat of Communist rule became likely. In 1949 with the help of another cousin, they made the long voyage to New York along with their first daughter. The young family arrived in Buffalo in 1951, finally reaching a safe haven.
Years later, Irene’s dad built a home in Lancaster for the family, but sadly, he died when she was 13. Irene remembers her mom, who was in her early 40s at the time, having to learn to drive a car for the first time.

Irene explains, “I can’t imagine my mother’s life – taken away from her family, living in a war camp, moving to a new country, having to learn a new language, losing a husband, and then losing a daughter. My mom grew so weak. Eventually she had to sell the house her husband built. It was my turn to give back, so she came to live with me.”

Irene wanted to learn how to properly take care of her mom and find a job that was fulfilling, so she became a hospice aide. “Being a Hospice Aide has opened my eyes to realize what’s important in life and to let the little things go…even life-changing events that we think are big things at the time. I’ve learned a lot from my hospice patients, and I love that I do what I do. I am able to have conversations and hear their stories,” said Irene. “When I started working at Hospice, I learned from my patients that if you accept things that happen in your life, you can move forward. If you find forgiveness and acceptance and make amends, you will have a lot of gratitude in life.”

“But my mom worried, always wondering if Anna survived after the train incident. So in 2002, we travelled to the Ukraine, hoping for closure. What we found was much greater!”

The Ukrainians in Mary’s old neighborhood didn’t have phones and the houses didn’t have addresses, so they described Anna to everyone they met. “Miraculously, we found Anna alive and well; and at that moment, life was complete,” Irene revealed. Everyone welled up with tears-of-joy at this wondrous reunion of two cousins after 65 years!

Mary died peacefully in her daughter’s home on October 1st.


As Good as It Can Be 

Eileen_and_Family.jpgBrian, Lyle, Eileen and Phil Toohey at Eileen's college graduation 

Eileen was your typical teenager – free-spirited and full of energy – the life of the party! She was smart and a good student, but she began exhibiting poor judgment in social situations and school work started to challenge her. Eileen went on to earn her bachelors’ degree, but had some difficulty during her college years. She struggled academically and became socially isolated. After college, Eileen was unable to hold a steady job because she had trouble following instructions and performing sequential tasks. She worked at a number of jobs, none of which enabled her to utilize her degree. Just as most 28-year-olds’ careers would be getting into full swing, Eileen started displaying unusual body movements and wild mood swings.

In 2006, Eileen was diagnosed with a rare neurological disorder, Huntington’s Disease (HD), which affects only 30,000 Americans. HD is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. Symptoms include uncontrolled movements, cognitive difficulties, and emotional disturbances. Many describe HD as having ALS, Parkinson’s and Alzheimer’s – simultaneously.
“Five years ago we had to take her car and license away. Four years ago, we hired a home health aide to assist Eileen with daily tasks, keep her company, and give us some relief. Soon it became evident that Eileen could no longer live independently, so we built a home that could accommodate her special needs,” said Lyle, Eileen’s mom.

Eileen was being treated by her local primary care doctor, as well as a neurologist at the University of Rochester Medical Center (URMC). “As Eileen’s health continued to decline, her social worker from URMC suggested we call hospice, a word no one ever wants to hear. We were devastated and didn’t act upon the social worker’s suggestion. After struggling to manage Eileen’s symptoms, a good friend who is on the board for Hospice Buffalo suggested we call for a consult,” Lyle said. “It took me months to make that first call, but I’m so glad I did. Dr. Kerr is one of the most wonderful, unassuming doctors I’ve ever met! Since Eileen didn’t have a 6-month prognosis, Dr. Kerr suggested we enroll Eileen in Palliative Care Buffalo’s Home Connections program. Within days, he pulled together his team of experts to explain palliative care to us and discuss Eileen’s care plan.”

“Eileen was with Home Connections from September 2015 through June 2016. We were much more relaxed. It was absolutely wonderful to have Becky, an RN with incredible expertise, knowledge and compassion, come to our home once a month to assess Eileen and talk...and listen – she was terrific!” exclaims Lyle. “As Eileen’s health began to deteriorate more rapidly, Becky mentioned, ‘Hospice can provide so much more – she’ll have weekly nurse visits with one dedicated doctor who can treat all of her symptoms.’ It didn’t take us long at all to enroll Eileen in Hospice Buffalo homecare.”

Lyle explains, “I call them ‘Team Eileen’ because it takes a team of ‘angels’ to care for someone like this...they need to be competent and kind, have patience, compassion, and love. Dr. Romanowski is terrific. Nurse Donna either calls or stops by frequently – probably more often than she’s supposed to, bless her heart. Dawn, the gal who takes my calls, is so pleasant and soothing – always there to answer my questions and basically hold my hand over the phone – such a sweetheart. I haven’t met anyone at Hospice who isn’t great!”

Eileen is in the final stages of HD: she cannot walk or talk and her lungs are filling up with fluid – she will probably develop pneumonia, which is usually fatal. “If it wasn’t for the special care that Eileen is receiving, I don’t think she would be alive today – and with no extraordinary interventions. That’s something we feel strongly about…if there’s ‘no getting better,’ then why put someone through that aggressive treatment?!” proclaimed Lyle. “If it wasn’t for Hospice, she would be in and out of the ER. Eileen is getting such good care…sure she isn’t in good health, but she isn’t in any pain or anxiety and all her medications are under control. Her quality of life is as good as it can be. I wish everyone had this type of care.”

To learn more about Huntington’s Disease, please visit the Huntington’s Disease Society of America (HDSA) website, www.hdsa.org


Helping Make Memories One Family at a Time 

bridal_-8.jpg

 Katie and her grandmother sharing a special moment 

The Hospice Angels Fund, once again, provided relief for our patients and their families over the holiday season. From Thanksgiving through New Year’s Day, we see a dramatic increase in the needs, emergency calls and additional requests from our patients and their families. We are very thankful for those who make donations to the Hospice Angels Fund so that we can help fulfill these requests. Our volunteer and dietary departments begin planning in early September each year to ensure that most of these seasonal needs and requests are met. We remind our families that they are not alone during what is typically a very special time. This past year our Hospice team was able to purchase and deliver gifts to 103 families (251 individuals). Holiday meals (Christmas and Thanksgiving) were prepared and distributed to 75 families (202 individuals). In addition, approximately 100 holiday meals were prepared and served to our patients and their families in the Mary and Ralph C. Wilson, Jr. Inpatient Unit.

The Angels Fund does more than assist with emergency and practical needs. This fund enables us to make unique dreams come true for our patients and their families. For example, this year the Angels Fund helped Katie and her grandmother, Pauline, fulfill a special dream they shared. Katie and Pauline had a very special connection. Pauline’s strength, grace, attitude, laugh and of course her cooking had always been a great inspiration to Katie. The two women had long talks about Katie’s wedding day, family traditions and what Katie’s future would hold. They never thought that Pauline would not be around for Katie’s eventual wedding day. As time would have it, Pauline became increasingly burdened with Alzheimer’s dementia. Katie helplessly watched as it increasingly robbed her grandmother of her daily joy.

Pauline entered Hospice after the disease progressed to the point where her moments of daily consciousness were limited. Katie approached the team at Hospice to see if they could assist in making a dream come true. Although Pauline would not be around for Katie’s wedding, she wanted to share her “wedding dress shopping day” with her beloved grandmother. The Hospice team transported Pauline to a bridal shop to meet Katie and her mom. Katie tried on the wedding gown from the 40’s that her grandmother was married in. Seeing Katie in the dress triggered memories for Pauline. She opened her eyes, processed what was happening and smiled. With these moments so far and few between with Pauline, Katie could not have asked for a more beautiful memory for her family, one that they will cherish forever. They were beyond grateful. With support from Angels Fund donors like you, we were able to assist in making this special memory. Thank you to all those who donate to the Hospice Angels fund and make memories like this possible each year.


Jeanne's Bucket List  

Jeanne-Nurse-for-Web800.pngJeanne coloring with her aide, Leigh, in her Hospice Inpatient Unit room 

Sunlight shines over Jeanne’s shoulder, beaming across an array of colored pencils while she determines which color will best enhance her artwork. Jeanne is a feisty 84-year-old hospice patient, who was orphaned at a young age. She is thankful for being alive and savors every waking moment by doing things she loves. Diligently, she continues to color – bringing her flowers to life and finding fulfillment in being creative. 

Coloring is only one of Jeanne’s many hobbies; she also enjoys sewing and keeping a journal. Just before entering Hospice, Jeanne decided to create a bucket list of things she wanted to accomplish before she passed. In her journal she had written, “Jeanne’s bucket list – I would like to walk in a pair of 6” high heels the girls wear now…they are cool!!” She had never owned high heels and admired her customers who wore them when they shopped at Walmart’s fabric counter, where she worked for over 14 years. She gushed, “I always wanted a pair of stilettos when I was younger!”

Jeanne’s love of sewing and people kept her working at the fabric counter right up until this past March when she suddenly started having difficulty breathing. After a number of hospital and emergency room visits, her family realized she needed constant care. Her physician recommended that they call Hospice. It was suggested that Jeanne be admitted to Hospice Buffalo’s Mary and Ralph C. Wilson, Jr. Inpatient Unit to get her symptoms under control and give her the care and attention she needed. Jeanne was hesitant about “going into hospice,” but agreed. She acknowledged, “I know my family can’t take care of me. It will be a big change, but I want what’s best for everyone.”

Aware of Jeanne’s condition and bucket list, her good friend and neighbor, Roxanne, wanted to help make one of her wishes come true. On August 1st, while the paramedics were on their way, Roxanne ran to Bon-Ton and bought Jeanne silver stilettos. Jeanne’s sons, Brian and Mark, helped her, as she was determined to stand up in the “cool” high heels she always wanted. Jeanne even wore them as she rode in the ambulance to Hospice Buffalo’s Inpatient Unit. Within minutes, the Hospice staff came to see the sparkly, silver shoes. Jeanne’s daughter, Sue, expressed her appreciation, “We will always cherish that moment.”

Jeanne enjoys spending her time in our inpatient unit, creatively coloring in her room and sitting in the outdoor gardens, as she looks forward
 to the arrival of her sewing machine. Jeanne explained, “Hospice is different than I originally thought...wonderful people here – I can’t say enough.” Jeanne had become very popular among the Hospice Buffalo staff and formed a special bond with her aide, Leigh. “She helps me a lot – we’re two peas in a pod.”

With Hospice’s help, Jeanne made a commitment to herself to enjoy life and make the most of every day. Her candor, drive and gratitude left a lasting impression on everyone she met.

 *Jeanne Hecei passed away peacefully, surrounded by her family on October 7th.


Hospice Homecare

“If I live another week, I know it will be a good week. Right now I’m doing everything I did before [I got cancer]. We’re hoping to go to the Grand Canyon in May” exclaims Bill Steiner, 57-year old Hospice Buffalo patient.
Bill has been battling cancer for 14 years. Lisa, Bill’s caregiver, explains, “It’s in his kidneys, liver, colon, lymph nodes, lungs, and now his bones. He was first diagnosed in 2002 – no warning signs.” Bill comments, “It was a blessing my chiropractor requested a CT scan. I had no indication – no symptoms.”
“Over the last 9 years, I was either in chemo or having surgery,” Bill recalls. I’ve had a ton of chemo – I had to have different types for each kind of cancer. And I’ve had 9 or 10 surgeries…after a while, you give up keeping track. I was either having surgery or weaning off medicine so I could have surgery.” Bill’s quality of life was a rollercoaster: “Sometimes I’d get better, but then I’d
get worse.” Read more

-Bill Steiner

“My Mom, Stephania, passed away on June 4th 2016 under the exceptional care of Team 5. All were wonderful, however, I would like to take this opportunity to advise you and thank (nurse) Hilda for the wonderful, thoughtful and sincere care she showed in taking care of my Mom. I have a beautiful memory of my Mom’s face just lighting up and smiling when we would tell her that Hilda was coming to see her. There are just not enough adjectives to let you know how fortunate Hospice is for having such an outstanding, hardworking, beautiful, dedicated person as Hilda, who just went above and beyond what you could expect. Hilda even came to Mom’s wake and I’m sure my Mom knew and was smiling.

Enclosed is a check to Hospice in my Mom’s memory and I hope to do the same at Christmas and thereafter.”
-Patricia from Buffalo

 


Hospice in Nursing Homes 

Wells Hospice House
Beechwood Continuing Care
2235 Millersport Highway
Getzville, NY 14968-1219

Dear Mary and Staff,

I just wanted to take the time during the upcoming week of reflection to give thanks for our blessings and extend a genuine word of appreciation to everyone at Wells House for the kindness shown to me after the Memorial service on November 18th. The lovely service provided needed closure for me; however, the real highlight of the afternoon for me was being able to revisit Wells House to reunite with my mom’s caregivers! You have no idea how much the gesture meant to me and I will be forever grateful to Suzanne for suggesting that I visit. Just seeing Mary, Debbie, Maria, Shelly, Theresa and Toni made me feel at “home” again, surrounded by all the wonderful staff that provided stellar end-of-life care to my mom. Having taken care of mama all my life, admitting her to a facility was one of the worst days of my life that turned around to be a blessing in disguise. I learned another valuable lesson in life... good things can flow from heartache and sadness. As you all can attest, I enjoyed visiting mom at Wells during lunch and evenings. You provided an anchor for me while my world caved in and actually became a surrogate family since I had little support in that regard. I miss those visits!

In closing, I cannot admit the road I am walking has been easy since mom’s death. I endured life-altering challenges with no reprieve month-after-month. What little family I had, left my side; however, friends stepped into my life unexpectedly, providing a core group of support. They were casual friends, another lesson that God places the right people in all our lives at the right time knowing exactly what we need at a given moment! Through all the hardship, I interviewed twice and transferred within my company to a new position in Sales! Without a doubt I could not have endured everything without stepping into my mom’s shoes (literally, I do that from time to time) to acquire the strength and endurance she lived, right to her last breath. Thank you again for providing the peace in the midst of my storm knowing my mom was taken care of with dignity and compassion. Please feel free to share my Thanksgiving note of appreciation to anyone that touched my mom’s life (Renata, Camille, Suzanne...the list flows onward along with my heartfelt prayers that your lives are touched with continued blessings from Above. Muriel is in heaven now enjoying her pumpkin pie!

-Charmaine S., Cheektowaga


Hospice Inpatient Unit 

Pat & Patrick:
I hope that you both had a wonderful holiday! As I had mentioned to Patrick, my Mom was a patient at the facility five years ago and she died on Christmas Eve. This year, my brother, my nieces, and I wanted to visit the campus to walk around and reminisce. When we walked by my Mom’s room, it was empty (obviously recently, because two people were cleaning the room). My brother popped his head in and mentioned to the people that it had been my Mom’s room. Their response was amazing. They could NOT have been any kinder. They turned off the television and immediately vacated the room so that we could sit and talk about my Mom. They insisted that we take all the time we wanted, never returning until we had left the room. I might add, this was all done by them without me EVER identifying myself as being a Board member. (I did AFTERWARDS when I asked their names so that I could send this note). They could have easily, and understandably, told us that they had to get the room ready, etc. Instead, they identified the moment, and were wonderful Ambassadors for Hospice! Their names are: Joe Mitchell and Diane Grimm. We’re lucky to have them and the hundreds of other dedicated employees that embrace the mission! I trust that you will pass along our appreciation!

Happy New Year!

-Robert S.

 


As Good as It Can Be 

Eileen_and_Family.jpg

Eileen was your typical teenager – free-spirited and full of energy – the life of the party! She was smart and a good student, but she began exhibiting poor judgment in social situations and school work started to challenge her. Eileen went on to earn her bachelors’ degree, but had some difficulty during her college years. She struggled academically and became socially isolated. After college, Eileen was unable to hold a steady job because she had trouble following instructions and performing sequential tasks. She worked at a number of jobs, none of which enabled her to utilize her degree. Just as most 28-year-olds’ careers would be getting into full swing, Eileen started displaying unusual body movements and wild mood swings.

In 2006, Eileen was diagnosed with a rare neurological disorder, Huntington’s Disease (HD), which affects only 30,000 Americans. HD is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. Symptoms include uncontrolled movements, cognitive difficulties, and emotional disturbances. Many describe HD as having ALS, Parkinson’s and Alzheimer’s – simultaneously.
“Five years ago we had to take her car and license away. Four years ago, we hired a home health aide to assist Eileen with daily tasks, keep her company, and give us some relief. Soon it became evident that Eileen could no longer live independently, so we built a home that could accommodate her special needs,” said Lyle, Eileen’s mom.
Eileen was being treated by her local primary care doctor, as well as a neurologist at the University of Rochester Medical Center (URMC). “As Eileen’s health continued to decline, her social worker from URMC suggested we call hospice, a word no one ever wants to hear. We were devastated and didn’t act upon the social worker’s suggestion. After struggling to manage Eileen’s symptoms, a good friend who is on the board for Hospice Buffalo suggested we call for a consult,” Lyle said. “It took me months to make that first call, but I’m so glad I did. Dr. Kerr is one of the most wonderful, unassuming doctors I’ve ever met! Since Eileen didn’t have a 6-month prognosis, Dr. Kerr suggested we enroll Eileen in Palliative Care Buffalo’s Home Connections program. Within days, he pulled together his team of experts to explain palliative care to us and discuss Eileen’s care plan.”

“Eileen was with Home Connections from September 2015 through June 2016. We were much more relaxed. It was absolutely wonderful to have Becky, an RN with incredible expertise, knowledge and compassion, come to our home once a month to assess Eileen and talk...and listen – she was terrific!” exclaims Lyle. “As Eileen’s health began to deteriorate more rapidly, Becky mentioned, ‘Hospice can provide so much more – she’ll have weekly nurse visits with one dedicated doctor who can treat all of her symptoms.’ It didn’t take us long at all to enroll Eileen in Hospice Buffalo homecare.”

Lyle explains, “I call them ‘Team Eileen’ because it takes a team of ‘angels’ to care for someone like this...they need to be competent and kind, have patience, compassion, and love. Dr. Romanowski is terrific. Nurse Donna either calls or stops by frequently – probably more often than she’s supposed to, bless her heart. Dawn, the gal who takes my calls, is so pleasant and soothing – always there to answer my questions and basically hold my hand over the phone – such a sweetheart. I haven’t met anyone at Hospice who isn’t great!”

Eileen is in the final stages of HD: she cannot walk or talk and her lungs are filling up with fluid – she will probably develop pneumonia, which is usually fatal. “If it wasn’t for the special care that Eileen is receiving, I don’t think she would be alive today – and with no extraordinary interventions. That’s something we feel strongly about…if there’s ‘no getting better,’ then why put someone through that aggressive treatment?!” proclaimed Lyle. “If it wasn’t for Hospice, she would be in and out of the ER. Eileen is getting such good care…sure she isn’t in good health, but she isn’t in any pain or anxiety and all her medications are under control. Her quality of life is as good as it can be. I wish everyone had this type of care.” To learn more about Huntington’s Disease, please visit the Huntington’s Disease Society of America (HDSA) website, www.hdsa.org

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Pg3_Image2.jpgIrene’s parents wed at the war camp.