A Blog Dedicated to Volunteering at Niagara Hospice
by Heidi Truschel, Volunteer Services Specialist, Niagara Hospice
Nurses, aides, doctors, social workers, and counselors are all an important part of caring for patients at Niagara Hospice. There are other important, sometimes unexpected, roles that are performed by volunteers. Often, volunteers fill in all the remaining spaces with the most tender of touches. In doing so, these individuals often develop meaningful relationships with Niagara Hospice that last for years. Each month, we would like to shine a spotlight on our volunteers, their contributions, and what motivates them.
Time may be our most precious resource. So what makes volunteers want to contribute their time and effort to Niagara Hospice? How do they relate to our mission of providing comfort and care during difficult times? As you will see, for them, it’s important what happens on the inside. This emotional connection, and their experiences within Niagara Hospice, are why we’re calling this blog “On the Inside.” Here are some of the reasons why volunteers give:
Many volunteers feel a personal tie to Niagara Hospice. This may occur because a loved- one was served by our organization or a hospice elsewhere. Some volunteers participate because a death in their family left lasting beliefs and feelings that they have in common with Niagara Hospice. Our mission touches their heart and spirit, making them want to “pay it forward” for others. Their volunteering is a deeply felt expression of gratitude.
People may feel volunteering is a way to help move the community in the right direction. They may wish to lead in some way, or to role model something positive. Other volunteers may want to assure that a cause is going strong. For them, volunteering is a way to maintain a value itself – to assure that caring, hospitality, dignity, and other principles have a place in the world. Dame Cicely Saunders wanted to create a place where the terminally ill could receive relief from pain in order to live fully to their last day. She founded the first hospice in London, England to make that a reality. We carry on her legacy at Niagara Hospice.
Volunteering can be a way to use your skills and experience. Many of us have acquired special knowledge along the way that could benefit others. Whether you have pursued a hobby or performed tasks professionally, volunteering can be a way to share your passion and talents. Being productive can feel very satisfying.
Volunteering can help you meet new people and offer a sense of belonging. A decision to volunteer may be based on the same values and priorities as other volunteers. It’s an opportunity to meet like-minded, motivated people who add to the experience. Some volunteer assignments, such as fundraising events, can bring volunteers together to work on common goals.
Volunteering can provide opportunities to try new things and explore your community. Is there a skill you haven’t had the opportunity to put to use? Would you like to embark on a new career, but need to see how it works on the inside? Volunteering can introduce you to new roles or new approaches to helping people. At Niagara Hospice, volunteers choose what to get involved in, and how often. There are opportunities to shadow other volunteers performing tasks, learning from others until you are comfortable.
Niagara Hospice makes it our priority to assure that volunteers find a role that is a comfortable fit. Volunteers can choose whether to interact with patients, or to work behind the scenes. As you will see in future articles, there are many ways to help.
written by Valerie Occhipinti Gurnett, RN, MSN-Ed CCM
Valerie & Mike
I am still here, and this is my story…..Mike was my cheerful, fun, and creative husband and bestie who kept me grounded. He was the guy who was a friend to everyone he knew; it didn’t matter to him what your background was or where you grew up, skin color, or rich versus poor. Once a person became his friend, he always kept track and put forth the effort to call and “shoot the bologna.” Mike believed in this and taught me that open communication is the life-giving oxygen that fuels relationships. You see, he came from a large, loving family and made me promise before marrying him that I would never sweep anything under the carpet. You might surmise that we had a beautiful relationship and were there for each other through thick and thin. Mike was diagnosed with an aggressive, hard-hitting form of cancer during the pandemic and had several complications following multiple surgeries. As a nurse, I am well aware there are times when, despite best efforts, medical can not repair every illness. Mike’s health declined, and death was upon us in March 2022. The following month, I healed from COVID-19 symptoms, and then the next storm front moved in as my healthy father sustained a life-threatening thalamic stroke. Meanwhile, my sweet mother’s health began to worsen, and she passed away at Christmas; I was unable to come up for air as they were all under my care. I lost my three favorite people, all within nine months of each other, in 2022. Time stopped, nothing made sense, peoples comments and platitudes started rolling in only to make me feel more alone and abandoned; it was as if no one understood.
Valerie’s parents
My healing journey and acceptance of multiple loss and agonizing grief began with the New Year 2023. According to Harris (2017), surviving tragedy presents us with a choice of whether to endure or become stuck, and I liken this to being suppressed under the carpet; Mike wouldn’t want me to do this. I made the choice to figure out how to carry this unrelenting grief, this gut-wrenching ache for reality to be different, and the awareness that “my three” will never come home or back. My journey comprised a million small steps to make life worth living. It took courage and a great deal of introspection to comprehend that it’s not one way or another way. Grief is not right or wrong; it is not black or white and is not about justice or injustice. I had to come to grips with the fact that grief’s cousins, anguish and sorrow, are a part of love; they are not separate countries; it is not one or the other. Grief is a love for self, for others, and for life. We can’t hold onto anything in this world, but we can hold onto love by carrying it through to live the life that has been asked of us. I learned that love has this way of linking us to what is now, what was once, and what is to come. It’s the same way that slow-paced songs are associated with sadness, and fast-paced songs are recognized with happiness. Musicians must learn to play both the sorrow and the joy in life.
I recall the morning of my hooding event as I finished graduate school; I was pacing back and forth in the cemetery, walking between my parent’s gravesite and my husband’s site. I couldn’t grasp how going to a happy occasion would be acceptable, “I lost my three favorite people, and they’re not here to see me graduate.” At that moment, pacing back and forth, I realized that my heart was big enough to hold space for sadness and happiness together. I realized that this is not a problem to solve; it’s more of a mystery to learn to carry with me. So, I went to the ceremony, holding a photo of each of my three people. Do you hear what I am saying? I was an emotional wreck, but steady, I established equanimity. As I stood on that platform I was filled with hope, you see our perseverance produces hope. Hope is an optimal state of mind; it’s where we start to expect good that positive things will come. You might not feel any hope or balance right now; I didn’t either, but it came, and someday, it will wash over you, too.
It takes much stamina to deal with every emotion that comes out of nowhere, as grief does not disappear, and to grasp the underlying feelings of each emotion. I wrestled with keeping space between myself and the various emotions. Realizing I would never be the person I was before meant that I needed to align my new self with my core values and beliefs. I had to discover what was important to me and what was important for me; there is a difference.
Don’t be afraid to ask yourself during the grief season to look at what makes things worse right now; what makes things a bit brighter for me? What brings me closer to myself? What small thing can I do that will soften this morning or get through this evening?
I found that daily affirmations were a powerful tool that allowed me to show myself compassion and love in a way that I never knew before. I would write simple phrases down on index cards and then say them out loud; hearing these positive statements created lasting changes in my mindset. Research has shown that affirmations create new neural pathways; it is similar to re-programming our brain in a good way. Piece by piece, I began to accept my new reality, and softness set in as I believed these phrases. For a time, my affirmations looked like this:
I say no to depression
I say no to discouragement
say no to despair
I say yes to love
I say yes to joy
I say yes to hope
I accept healing from the loss of my husband
I accept healing from the loss of my father and mother.
I will heal
I love myself no matter what has happened
I am open to receiving healing
A gracious elderly friend taught me to place my hand on my heart to feel each beat. Doing so lets us know we are alive and we have purpose; it also signifies respect, honesty, and trustworthiness. Try placing your hand over your heart; can you feel each beat? Now, say a few affirmations aloud and notice the tranquility that will set in. Dr. Holly Oxhandler is a well-known social worker whose research centers around spirituality and mental health. Oxhandler 2022 discusses the importance of leaning in, processing, and becoming centered in prayer during the grief season. Centering on prayer allowed me to slow down and connect with my inner self and higher power; it helped me to loosen the grip on all that I could not control.
Like me, you will never be the same person ever again following the magnitude of grief and loss. I recognized the reason for “Why can’t I stay the same person”? This is because not only of a multitude of losses but, more significantly, all that was gained during the journey. I now know that if we give our suffering purpose, it will metamorphose into an unspeakable, powerful force for good in this world. Please know that you are so worth caring for and tending to the gift of your life while learning to carry grief and loss. Hospice bereavement counselors were there for me and they can help you too; they provided written materials and used active listening skills to support me. May peace be with you.
Harris, S. (2017). Death expands us: An honest account of grief and how to rise above it. Lioncrest Publishing.
Oxhandler, H.K. (2022). Soul of the helper: Seven ways to see the sacred in yourself so you can see it in others. Templeton Press.
Closing thoughts from Kimberly Grande, Bereavement Counselor, Niagara Hospice
Valerie’s story is one of resilience and hope. Your story is one of courage and trust. Until a person is in the midst of deep grief one does not quite understand the bravery it requires to continue on. “I am still here,” is Val’s opening statement. An affirmation in itself. Affirmations are honest statements that can help one focus and gain inner strength in moving through life. When used consistently, affirmations can create lasting changes in your mindset, helping you to develop a greater sense of self-compassion and a more hope-filled perspective. As Val’s story illustrates, in the context of grief, affirmations can be a powerful tool for fostering healing, acceptance, and growth, providing comfort and support as you navigate the challenges of loss. There are a wealth of affirmation sources you can find in the book store or online, and these are solid resources. However, if you are able to create your own affirmations, based on your immediate emotions, struggles and hopes, these statements will have a greater impact as you repeat them to yourself. Val created affirmations as she journeyed through her grief, and at times would return to previous affirmations as they became relevant to her experience in the moment. Whether you create your own or borrow affirmations from another source, it is most beneficial to choose statements that speak to you personally, ones that resonate with your soul and are true to your immediate experience.
More examples of affirmations pertinent to grief include:
I permit myself to grieve and to feel my emotions fully.
I am patient with myself as I navigate the grieving process.
I am surrounded by love and support, even during my darkest moments.
My loved one’s memory lives on in my heart as our shared memories.
I am strong and resilient, even when faced with loss.
It is okay for me to feel both sadness and moments of joy.
I am capable of healing and finding peace after loss.
I honor the connection I shared with my loved one and cherish our time together.
Each day, I take small steps toward healing and growth.
I am worthy of love, compassion, and support as I grieve.
Just as each mourning person’s grief is unique to themselves, so too is the type of support that meets one’s needs personal and individualized. As we continue to bring you this blog, we will provide testimonies, ideas and resources to offer you options as you grieve. Some will speak to you, and others will not rest well with you. Accept the pieces that fit you, and let go the ones that do not fit. The most important take away this date is to permit yourself to grieve the way that best fits you and your loss. We honor your grief, and we wish you peace as you journey in courage and sorrow.
Niagara Hospice Grief Support Specialists will be here to help guide and support you, validate your feelings, facilitate your healing, and listen without judgment as you process the vast emotions of grief and adjust to the world without your loved one. Call (716) 280-0777 or email Bereavement@NiagaraHospice.org to learn more about our services.
The Hospice and Palliative Care Group Board (HPCG) of Directors announced that John Lomeo, President & CEO will be stepping down effective July 31, 2024.
The Hospice and Palliative Care Group Board (HPCG) of Directors announced that John Lomeo, President & CEO will be stepping down effective July 31, 2024.
Lomeo joined the organization in 2000 and over the course of 24 years, established Niagara Hospice as a national leader in end of life care. He built Niagara Hospice House that became a model for other Hospices nationwide. He established complimentary businesses to support the mission of caring, such as Kalos Health and Liberty Home Care. In 2000, the organization was caring for 40 patients per day. In 2024, the organization is caring for over 1,200 patients throughout all the counties of WNY.
The HPCG provides administrative services to Niagara Hospice, Kalos Health, Liberty Home Care, Hospice of Orleans and The Niagara Hospice Alliance.
“It has been my honor and privilege to serve this organization and the community. Throughout my career, I have tried to make a difference in people’s lives, I hope that will be my legacy. I would like to personally thank every employee, past and present for taking this journey with me. To my Board Members, thank you for supporting me and our vision to improve healthcare throughout WNY. Together we answered the call of duty.”
“When John Lomeo retires in July of 2024 he will be leaving behind a secure organization that has expanded, shown exponential growth and demonstrated exceptional quality of care. The community and the thousands of people served have been the beneficiaries of John’s leadership, foresight, vision, brilliant business acumen and deep compassion. As a primary founder of Niagara Hospice, I would add that John Lomeo not only fulfilled the hopes and dreams we had for hospice care, he exceeded them. On behalf of the Niagara Hospice Board of Directors, I thank John for his incredible journey with us over the past 24 years.”- Patricia L. Evans
The Board of Directors has also announced that Carlo Figliomeni, Chief Financial Officer & Chief Operating Officer, who has been with the organization for 18 years, will be promoted to the President & CEO position on August 1, 2024.
We thank our community for supporting Niagara Hospice for the last 35 years. For this year’s Winter Appeal, we have a goal to enhance and enrich quality of life for patients by creating The Memory Care Courtyard Garden at Niagara Hospice House. This courtyard would be a safe, secure and stimulating outdoor space tailored to this population, but also beneficial to all patients and families receiving care at Niagara Hospice House. Startup funds for this project have been secured through the fundraising efforts of the Jack Beatty Memorial Hospice Cruise and Clambake, and we are asking for your help to make the comprehensive project a reality.
“Patients with Alzheimer’s and related dementias can thrive in environments that decrease isolation, increase opportunities for independence and promote sensoryengagement. The Memory Care Courtyard Garden would be comprised of various sensory features which are stress-relieving and promote physical and mentalwell-being for patients, while also providing a unique gathering and activity space for patients and their families.” -Dr. Richard Castaldo, Niagara Hospice Medical Director
Our goal is $75,000. This special garden will add significant value to our patients’ lives, and be a welcome complement to the specialized 24/7 expert care provided at Niagara Hospice House. Please consider giving to this important initiative which directly moves forward our mission of providing the right care, in the right place, at the right time.
When patients with dementia and their caregivers struggle with trying to address constant agitation and stress, daily living activities can become very challenging. There are a variety of practical activities and habits that can supplement treatments and medications. By engaging loved ones in these routines, families can seek to attain optimal comfort in the face of unpleasant symptoms, difficult situations and feelings of isolation while also alleviating their stress.
Another major issue affecting dementia patients during the progression of the disease is sundowning syndrome; a state of confusion occurring in the late afternoon and lasting into the night. It can be caused by an urge to go the bathroom, thirst, hunger or pain. Boredom can also be a trigger for this behavior. Sundowning can result in a variety of different behaviors, such as anxiety, aggression, depression, ignoring directions, pacing or wandering.
For people living with dementia, one of the biggest factors in combating these adverse circumstances is providing sensory engagement. These measures can be instrumental for patients, families, caregivers and health care providers. They work together to develop the best care plan and tailored solutions for each situation toward countering the physical and emotional impacts that correspond with each type of illness.
Dementia-oriented sensory engagement (D.O.S.E.) is a non-pharmacological approach that can alleviate the above conditions and contribute to creating more positive outcomes in patient comfort and quality of life. In addition, these measures can serve as much-needed support tactics to caregivers under duress. Sensory stimulations like pet or music therapy and physical therapy can ease the unpredictable, demanding effects of dementia illnesses. Accommodating patient preferences, strengths and abilities can also result in reframing Alzheimer’s and dementia outcomes to reward and encourage patients rather than restrain them through trying circumstances.
Therefore, activating any type of sensory interventions may remedy certain unmet needs, desires or interests related to daily activities. Creative memory-driven activities are meaningful in engaging patients’ body, mind and social instincts and represent important non-pharmacological approaches to each respective disease state. While a good diet, adequate sleep and regular companionship are essential to managing a patient’s condition throughout the disease progression, there are other ancillary routines to consider in the care plan and creation of new habits.
The variety of cognitive-stimulating activities, including reading, playing games, walking and participating in social gatherings play a vital role in re-shaping how individuals feel. Regular involvement in these pursuits help avoid a descent into a sense of helplessness and despair. Even playing a patient’s favorite music from the past or watching old movies can enhance their psychological health, mood or overall demeanor towards others.
Sensory Activity Assessments & Recommendations
To measure how sensory activities can impact patients and caregivers dealing with dementia, the clinical staff at Pathways Palliative Care looked at baseline behaviors and symptoms and then monitored outcomes from routine changes and the introduction of new activities.
We developed a questionnaire to assess 10 patients in Niagara County with a dementia-related diagnosis who are enrolled in a home-based palliative care program. The patients’ ages ranged from 69 to 93 years old and they all have a form of dementia, Alzheimer’s or Parkinson’s diagnosis.
This survey aimed to discover non-pharmacological approaches to assessing the disease state and the frequency of use of interventions related to cognitive stimulation activities, physical exercise, Mediterranean diet, social interaction and use of reminiscent therapy. The survey also included scales to measure daily routines, sleep interruptions, mood issues and average daily pain levels. The goal was to determine whether these interventions improved outcomes and lowered caregiver stress levels.
A social worker completed the survey in the patient’s home with the patient and primary caregiver present. In all cases, the primary caregiver provided answers to each question. Two questionnaires were completed at different intervals, two months apart, to determine whether interventions and suggestions were implemented and if the recommendations decreased the patient’s behavioral issues and lightened the burdens of the caregivers.
Positive Patient Behavioral Outcomes
The results of this non-pharmacological D.O.S.E. approach to changing some lifestyle habits and socialization activities demonstrated a difference in better stabilizing the patient’s condition and erratic personality tendencies.
Physical activity such as walking, getting quality sleep and maintaining a better diet proved to be significant in producing positive outcomes for emotions and symptom management. Socialization, being productive and learning through playing games and listening to music as well as staying connected with family members and friends all yielded dramatic improvements in patient comfort and attention to their surroundings. The assortment of sensory activities also addressed other areas of the dementia disease state. Increasing positive emotional experiences and decreasing negative ones overall will reduce depression and aggressive outbursts.
The overall aim for any program serving people with dementia-related illnesses is to produce more positive interactions for patients and caregivers while documenting the overall health outcomes and behavioral changes that any non-pharmacological approaches provide.
During hospice care, the clinical staff works collaboratively to create the most comfortable environment possible for Niagara County residents and their families and caregivers. In addition to the physical, emotional and spiritual care, a supplemental therapy that is available to patients is weekly pet visits. Throughout the 15-year history of Hospice House, volunteers have brought pets into the facility to increase the joy, happiness and comfort of our patients and families. Recently, volunteers were able to resume pet visits once a week, and four dogs returned to service, including Boo pictured above.
These pet visits have proven to benefit patients, families and even staff. Dogs offer a comfort and companionship unlike any other. It has been proven that they reduce blood pressure, anxiety and depression, as well as increase mental alertness and attention skills of patients. Non-verbal patients have even opened their eyes, laughed or made noises, and they have pet the dogs during visits. Some patients always had animals in their home, and now when they are without them, it can cause some depression. Pet visits help decrease depression levels and bring the patients back a piece of the loving companionship they had before. Patient families also experience a sense of joy during these visits, knowing their loved one is happy. Not only do the dogs offer them comfort, but they see how the patients react to them. Patients often exude great joy from the visits, improving their mood and reducing stress. Even our staff feels the benefits from pet visits. When nurses, aides and counselors work closely with patients, creating a memorable bond between them. Seeing patients decline during their care is very difficult, and the pet visits are able to lift their spirits and provide comfort during challenging days.
I have been a volunteer with Niagara Hospice for about six years. I am a Vietnam-era Army Veteran who has chosen to visit with other Niagara County Veterans who are under the care of Niagara Hospice. I have had some wonderful and personal experiences that have been very emotional and heart-warming. One time I visited a Veteran patient who was George Patton’s painter. He said General Patton had to have everything painted white, and that a white picket fence had to be around everywhere he stayed for the night during battle.
When I first meet a Veteran patient, I salute and give them my military serial number, and in return, they salute and give me their military serial number. This is a number you never forget, and it is our bond. One day, I met a Veteran, saluted him and gave him my serial number. In return, he saluted me the best he could and gave me his serial number. His daughter was in the room and she left crying.
The Veteran and I talked for about an hour. When I was ready to leave, I walked into the kitchen of the house and his daughter was there, still crying. I asked if I did anything wrong, and she said, “No, but what was that number you said to him?” I explained to her that it was my serial number, and he in return gave me his number. She said, “He hasn’t talked to anyone for two months and you come in the house and he gives you some number and you talk like long-lost friends.”
I happened to be with him and his family just before he died. I was talking to him and he said, “Paul, I wish I would have met you 40 years ago,” then he passed. It is experiences like this one that keep me coming back to Niagara Hospice to visit Veterans who have made this country what it is today. God Bless America and all of its Veterans.
Veterans in Niagara County hold a special place in our community and in the hearts of Niagara Hospice staff. Niagara Hospice is a partner in the We Honor Veterans program that was created by the National Hospice and Palliative Care Organization (NHPCO) in collaboration with the Department of Veteran Affairs (VA). Many hospices across the United States are partners in this important initiative that recognizes Veteran patients and provides them with the specialized care and support they need. By recognizing the unique needs of our Veterans and their families, health care providers like Niagara Hospice, in partnership with the Buffalo VA staff, help guide Niagara County veterans and their families through their life stories toward a more peaceful ending. Over the last two-and-a-half years, we have cared for nearly 900 Veteran patients, which represents about 30 percent of all patients under Niagara Hospice care.
Our staff is dedicated to ensuring every Veteran patient receives access to high-quality hospice care when they have a prognosis of six months or less, and up to 12 months for Medicaid-only residents. The goal of the care teams is to enhance quality of life for each Veteran and his or her family by learning about their special needs, and their military history. We also offer trained Veteran volunteers who make one-on-one visits with Veteran patients to share the common bond of service and present them with a recognition plaque for each patient that is customized to their service branch. We are always looking for more Veteran volunteers to work with our staff to engage Veteran patients in the program’s activities. Interested Veterans can call 716-439-4417 or apply here.
Service Persons Memorial Wall In addition to the We Honor Veterans program, Niagara Hospice also honors Veterans with the Service Persons Memorial Wall at the entrance to the campus at 4675 Sunset Drive in Lockport. The memorial was established in June 2009 to give a unique opportunity for people to honor and remember those who have served in the army as well as fire and police professionals. The wall now has more than 115 Veteran names on it and stands as a lasting tribute to the legacies of loved ones. Anyone can make a contribution that places a permanent tribute to a loved one who served our country, worked in law enforcement or was a first responder in any of our communities.
Memorial Gardens The Service Persons Memorial Wall also serves as an entrance to the Memorial Gardens that features a brick walkway, gazebos, granite benches, a bridge, pond, pavilion and pergola. Many family members take advantage of the variety of memorial and naming opportunities available on the wall and throughout the gardens. These are wonderful ways for people to remember their loved ones while supporting the Niagara Hospice mission of providing expert care for every family.
Niagara Hospice provides Niagara County patients, families and caregivers with free telehealth and videoconferencing services that enable faster consultations and admissions. These rapid response measures also enhance care management and medical monitoring while patients are in our program in homes and at facilities.
This fast, convenient videoconferencing technology enables admission nurses and intake staff to respond faster any time that a family requests a consultation about hospice eligibility for a loved one. Our intake nurses are always available to answer questions about services for any new patients entering the program. Once patients and families are under our care, nurse care managers also use telehealth to regularly monitor vital signs, symptoms and conditions to expedite any clinical care needs for patients and families.
Our Bereavement Department also offers free, convenient virtual counseling for families and caregivers in the comfort of their home for up to 13 months after the death of a loved one who was in hospice care. With telehealth technology, Niagara Hospice clinical staff is able to provide all of the following services for Niagara County patients, families and caregivers to help improve quality of life and maximize precious time together for everyone involved:
Provide overview of Niagara Hospice eligibility and all of the services available to Niagara County families
Offer free consultations to prospective patients and caregivers
Answer questions about insurance coverage and locations where care is provided
Monitor vital signs and symptoms with patients under our daily care
Respond immediately to patient any time of day or night when family care needs, issues or questions arise
Being a caregiver can be quite a full-time job to undertake. There is a lot to keep track of and manage on a daily basis with a loved one can that make your life very difficult, with emotions and stress making the important role even more challenging.
Fortunately, there are many more useful tools, websites, and applications that exist now that were not available years ago that help people ease the stress of caregiving. These resources below can help make caregiving a bit easier and guide you toward being an efficient and balanced caregiver while taking care of yourself as well.
Staying Organized Becoming a caregiver is a big role to take on, and keeping yourself organized is not always easy. A good app to help with this is Caring Village.
Caring Village is built for caregivers because it helps with so many areas of concern. It allows you to create a care team with family members and coordinate help with errands, transportation and food. The app also has preparedness checklists, secure in-app messaging and a wellness journal. Additionally, it stores health documents and tracks medications as well.
Medical Assistance Being a caregiver, it is important that you are able to help when your loved one is in pain, facing an injury or in an emergency. An excellent app that can help with this is First Aid: American Red Cross.
First Aid is just like it sounds. The app gives expert advice for all types emergencies or injuries with step-by-step instructions and helpful videos. It also has a locator to help determine the nearest hospital in case of emergency. Plus, you can easily call 911 at any time within the app if necessary.
Medications When taking care of a loved one that is ill, it is obviously important to stay on top of medications and make sure your loved one isn’t misusing them. Two good apps to help with this are Illuminate Health: Med Guide and Medisafe.
Med Guidehelps to simplify medication management and has several safety features that help prevent accidental misuse or interactions. The app has clinical support that checks for drug interactions, prescription duplication and accuracy. The app also has a side effect tracker, wellness routines and even connects with a care network.
Medisafe is a straightforward medication management app with an organizer that gives refill reminders and tracks medication expiration dates. The app also generates progress reports, gives medication tips and finds discounted prescription offers (via GoodRx). Medisafe allows you to add family members to check in and send reminders as well.
Resourceful Websites In addition to these helpful apps, there are a variety of supportive websites that outline extensive insights on caregiving. Below are three picks worth checking out to help ease the fluctuating challenges of being a caregiver:
1. Leeza’s Care Connection– This website has a full section designated to just caregiving tips. It gives great advice under Your Caregiver Toolbox, along with good information under Health & Medical Tips and Safety Tips. It also goes into depth about Medicare and Medicaid, caring for a veteran and building a family care network. Additionally, they have a comprehensive caregiver FAQ section.
2. Family Caregiver Alliance– The Family Caregiver Alliance (FCA) was actually the first organization in the United States to advocate for and support family and friend caregivers. This website has a wide selection of resources on medical topics, along with basic caregiving guides for beginners. The FCA also offers support groups, events, classes and even a personalized tool called CareNav,™ a free dashboard loaded with personalized information that matches your unique caregiving needs.
3. Caring.com – This website is like an encyclopedia for caregivers that covers many caregiver topics. It also talks the best medical alert systems of 2022, has a full guide to Medicare benefits and highlights the very important issue of caregiver burnout. It’s a serious concern for many family members and caregivers, and the site offers great advice about how to handle the stress and burnout that comes with the job.
There are plenty of other apps, tools and websites available to help with making caregiving easier to manage, but these are just a few examples of how technology and the internet can contribute to making caregiving a more pleasant, prepared experience.
If the resources above don’t work well for you and your needs, check out some of these lists below to review other options and find the best online tools and apps for you and your family:
These websites, apps, tools and resources were designed to alleviate the difficulties of everyone’s caregiving journey. Consider these apps and websites as additional helpful resources to support you as you become the best caregiver you can be. (All apps mentioned are available on the Apple App Store and Google Play Store)
The Niagara Hospice Memorial Gardens are a special way to honor and celebrate the lives of loved ones. The gardens consist of brick and stone pathways engraved as memorials with the names of the loved ones from hospice families. There is also the Service Persons Memorial Wall that serves as a tribute to veterans of military service and first responders. The granite benches offer a place to sit and take in the beautiful flowers that surround the courtyard. Niagara Hospice patients and their families have access to this tranquil place to spend quality time together and feel at home here.
During periodic celebrations of life in the fall and spring, we honor the new dedications in the garden with families, friends and donors. The scenery created by the gardens, pond, benches, bridge, pavilion and pathways throughout the campus creates a peaceful oasis to visit and enjoy the outdoors as families honor their loved ones.
There are also opportunities for groups and individuals to volunteer in maintaining our gardens. Recently a group of volunteers helped with our spring landscaping by weeding and tidying up the garden so it is now looking pristine. Volunteering in groups can be such a great bonding experience and reason to spend time outside during the summer. We are always looking for new volunteers to contribute to preserving this important place for families and friends to honor loved ones and spend quality time together.
When families receive hospice services for a loved one with a terminal illness, the main objectives for hospice staff are to provide care and support for everyone involved with the patient through challenging times. The top priority for doctors, nurses, counselors and aides is to improve the quality of life for patients and their caregivers and reduce the burden of end-of-life circumstances by educating them so they can have more precious time together.
Hospice services can vary, but some of the most impactful and helpful services are the unique supplemental therapy options available to patients, including massage, music and pet therapy.
Massage Therapy:
Massage therapy is the practice of kneading or “massaging” a person’s muscles to improve one’s well-being or health. Massage therapy is a form of manual therapy, as it “includes holding, moving, and applying pressure to the muscles, tendons, ligaments and fascia.” (Better Health – Massage Therapy)
This type of therapy can be good for anyone, but it provides some great benefits for those who are in hospice care. It has been found that massage therapy can help improve circulation, as loosening muscles and tendons allow for increased circulation.
Improved circulation can be very valuable as it has a direct impact on pain management and can help alleviate fatigue. This therapy has also been found to decrease pain and joint stiffness, which can help some people improve mobility. (Keystone Hospice – Massage Therapy)
Research shows this form of therapy can reduce anxiety, depression, mood disorders, stress, nausea, fatigue, and sleep difficulties as well as provide relaxation and comfort. (Pathways Health – Massage Therapy)
Music Therapy:
Music therapy is “the clinical & evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional.” (musictherapy.org/about)
Music therapists develop a particular and unique plan to help their patients find relaxation and comfort. When music therapists work with hospice and palliative care patients, they utilize many techniques for treatment, such as singing, songwriting, guided imagery and music, lyric analysis, legacy and life review projects, and musical instruments. (EverHeart Hospice – Music Therapy)
Just like massage therapy, music therapy provides physical benefits. For hospice patients dealing with physical pain, music therapy provides improved relaxation, enhanced communication and speech abilities, and improved motor coordination. It also helps patients by bringing about heightened self-confidence, increased social interaction, along with introspection and life review. (Crossroads Hospice – Music Therapy)
Pet Therapy:
Pet therapy is a guided interaction between a person and a trained animal. Patients can interact with a pet therapy animal as they would with almost any pet. This may include tossing a toy for the animal to fetch or talking to, petting, hugging or cuddling, or just silently enjoying the animal’s presence.
Whether a therapy animal visit aids in reminiscing, easing loneliness or calming anxiety, the benefits of visits with hospice patients and their families are numerous. Pet visits can not only influence health, but visits also can contribute to happiness.
It has been found that meeting with a hospice pet therapy dog can provide mental health benefits. The pet therapy sessions can help to bring joy and even reduce feelings of anxiety and depression, along with isolation and alienation. Pet therapy can help hospice patients take their minds off their aches and pains as well as encourage communication. (Benefit of Hospice Therapy Dogs)
There are also some physical benefits to pet therapy that could be very valuable to hospice patients. It’s been found that “interaction with a gentle, friendly pet” can release endorphins (oxytocin), improve cardiovascular health, lower blood pressure, and even produce an automatic relaxation response during the act of petting. This automatic relaxation response can help to reduce the amount of medication some patients need.
Dogs are the most common animal used in pet therapy programs, but due to allergies and other restrictions that people may have, a variety of other animals can be used, such as pigs, rabbits, cats, horses and birds. (The Unique Connection of Pet Therapy with Hospice Patients)
Since the primary focus of end-of-life care is to help ensure that an individual’s remaining time is spent as peaceful as possible, these different types of complementary therapies help instill a sense of comfort and relaxation, which are very important in easing the difficulties of the last stage of life. When patients seek relief from specialized therapy options, they find renewed focus on living in the present with their loved ones while experiencing lower levels of anxiety, depression, isolation and other issues related to their condition.
For more information about the supplemental therapies that Niagara Hospice provides, please click here.
Wordle, one of the newest activities to come out of life during the pandemic, has become increasingly popular with all generations. The basic premise is a game in which the user has six chances to guess a five-letter word. This once-a-day game is typically used as a brain teaser exercise by its users. While it doesn’t directly make your brain smarter, the effects of playing it do prove positive.
First, it provides you with a challenge to overcome. Every user does this differently by using their own strategizing methods. This simple presentation of a challenge already increases blood flow, and in turn, can have positive outcomes on one’s mental abilities. It is important not to go into it with the hope of “stopping your brain from aging” or “becoming smarter,” but research proves that participating in games like Wordle can improve cognitive function.
According to a May 2019 article about a study by Dr. Anne Corbett of the University of Exeter Medical School in England, the more often people engage with puzzles, the sharper their performance is across a range of tasks assessing memory, attention and reasoning. The improvements are particularly clear in the speed and accuracy of their performance. Research can’t definitively say that playing these puzzles necessarily reduces the risk of dementia in later life, but data supports previous findings that indicate regular use of word and number puzzles helps keep brains working better for longer.
It is important to continue to exercise your brain, just like any other muscle. An article published by Harvard Medical School in May 2020 stated that “challenging your brain with mental exercise is believed to activate processes that help maintain individual brain cells and stimulate communication among them.”
Participating in games like Wordle and Scrabble, while not only being enjoyable pastimes, will benefit your mind’s overall health in ways you may not even realize. If you haven’t checked out Wordle, just search for it online for the daily puzzle, and there is always the daily newspaper for the traditional puzzles to give your brain some regular exercise.
Desi Toczek isn’t your typical fifth grader. While he has a wide array of interests like most boys his age, including baseball, history, violin, cub scouts and traveling, he most enjoyed spending time with his grandfather, Richard Winney. Fishing, camping at “the little house” and listening to stories of his time served in the military are some of Desi’s favorite memories; they were best friends. In April 2021, Richard passed away from cancer while receiving care from Niagara Hospice.
This wasn’t Desi’s family’s first experience with hospice. As I spoke with his mom, Kristen, she shared her past experience with Niagara Hospice when her grandfather passed away in 2014. Prior to that, she had heard of hospice but had no idea what to expect.
“Everyone was amazing, they are angels,” she recalled. “I want to be friends with them!” Thus, when her father made the decision of not continuing cancer treatment to receive hospice services, she was heartbroken, but knew he would receive the best possible care.
One memory that stood out to her in particular was when a housekeeper at Hospice House came into her father’s room to empty the garbage. He stopped her as he noticed a tattoo she had and they ended up talking for a half an hour, saying it was the highlight of his day! The level of care and compassion her family received from every person they came into contact with forever changed her view of hospice.
When Desi learned his school, Lewiston Porter Intermediate, was doing a Jingle Bell Fun Run to benefit Niagara Hospice, he knew he wanted to get involved. With the help of his mom, Desi made a video and posted it to her Facebook page. The video garnered the attention of family and friends who also wanted to show their support for his family. Out of the $2,000 raised by the school, Desi raised $1,200!
As a 10-year-old, Desi’s actions are not only admirable, but inspiring. He’s shown us that no matter how old you are or at what stage of life you are in, the loss of a loved one affects us all. Whether we raise money via a fundraiser, plant a tree or simply visit their favorite place, we can always honor our loved ones by keeping their memories alive in our hearts.
