Author: David Lee

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:

1. Provide overview of Niagara Hospice eligibility and all of the services available to Niagara County families
2. Offer free consultations to prospective patients and caregivers
3. Answer questions about insurance coverage and locations where care is provided
4. Monitor vital signs and symptoms with patients under our daily care
5. 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 Guide helps 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:

WhereYouLiveMatters 
AARP 
Caring.com
Seniorly.com

   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.

Sources:

https://www.health.harvard.edu/mind-and-mood/6-simple-steps-to-keep-your-mind-sharp-at-any-age

http://www.exeter.ac.uk/news/featurednews/title_716265_en.html

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.

Don’t “Should” on yourself

By Kimberly Grande, Niagara Hospice Bereavement Counselor 

   How often have we, who are parents, stated, “This child didn’t come with a training manual?” At times, grief can feel like that, too  – “I wasn’t given a training manual for handling this.” And yet, society seeks to impose on us a training manual, of sorts, with comments such as: “You should do this,” “Have you thought about this?” “You should never do that,” and “You really should try this.”  

   “Should” – now there is a word that the grieving person would do well to avoid. No one knows or understands your grief experience. Just like raising each child is a wholly different encounter from another, so too is the grief experience a very individualized one. It is indeed very individualized, such that the grief you experience for one loss may be completely unique to the grief you experience for another loss. 

   If you are experiencing the loss of a loved one, please know that there are no “shoulds” in your life. There is only “am.” I am tired, for now. I am having a good day, for now. I am remembering her and I am crying tears of sadness. I am thinking about him, and I am weeping tears of gratitude. I am looking at pictures, and I am laughing. I am angry! I am not ready to go to a party. I am folding her clothes and giving them away. I am waiting to go through her closet. I am keeping his room exactly the same.

   I am …. grieving and mourning in my own way, at my own pace, without guilt or apology.  

   My hope and prayer is that you allow yourself the time, the space and the permission to mourn and grieve according to your timeframe, your tradition and culture, and your very own inclinations.  

By Jane James, NP, Director of Admissions at Niagara Hospice 

   The American Association of Retired Persons (AARP) estimates that nearly 40 million Americans are caregivers for an adult with a disability or illness. Providing care to an individual in the home can include assisting daily living activities, including grocery shopping, dressing, transferring, toileting, eating and medication administration.  

  People who care for loved ones at home are at risk for developing significant amounts of emotional, financial and physical stress. Recent studies have demonstrated that caregivers are at an increased risk for experiencing a heart attack and even death.    

  Caregiver fatigue or burnout can occur when the person providing care experiences emotional and physical stress that ultimately is caused by not getting adequate help. Signs that a person may be experiencing caregiver fatigue are feelings of irritability and depression. The caregiver may be experiencing more illnesses, changes in appetite and disruptive sleep patterns. The caregiver may withdraw from friends, family and even activities that they once enjoyed. In the long run, the care that the patient receives can deteriorate.

   If you think that you or someone you know may be suffering from caregiver fatigue, it could be time to call Niagara Hospice for an evaluation and discussion about options to assist in the caregiving plan. When a patient is in hospice care, respite is a benefit to the patient and their family and completely covered under Medicare. Respite care can be offered to the patient to provide relief to the family or caregiver. A patient can come to Niagara Hospice House in Lockport to receive excellent care for a period of up to five days and then be transported back home.  

   Studies also show when a caregiver has access to a well-coordinated interdisciplinary team, he or she benefits from a positive impact that leads to less anxiety, depression and perceived burden. Patients under the care of hospice services are managed by a highly skilled team that features social workers, nurses and volunteers who are trained in monitoring for signs of caregiver stress and strain. Having hospice as a support system can assist the caregiver and provide relief when needed. 

   Another option for hospice patients to have access to is continuous home care. This special level of home care can be offered to hospice patients when the primary caregiver will require a lot of teaching about how to provide care. Nurses are available for extended lengths of time in the patient’s home. During this time, the nurse instructs the family or caregiver about how to effectively care for the patient and important signs and symptoms to watch for on a regular basis. Educating caregivers and equipping them with the tools necessary to be a successful caregiver will also prevent caregiver fatigue from occurring.  Other resources available to caregivers can be found by contacting the Office of the Aging or the Alzheimer’s Association.

By Anna Grande, Communications & Marketing Intern

   The year is 1980. Patricia Evans just watched her neighbor and his family struggle with the aftermath of cancer. The family had little support, and they were left heartbroken. This was when Patricia started to work on the foundations for hospice care for patients and families in Niagara County.

   After listening for months to Patricia talk about how essential hospice is, her friends suggested she take action to help make it become a reality. Two of her friends were attending an information meeting in North Tonawanda and they wanted Pat to join them. This first meeting, with 35 people in attendance, kick-started the Niagara Hospice we know today.

   Only 35 people know exactly what went on in that meeting, but 40 years later, thousands of Niagara County families have seen the results. While sitting in this meeting, Patricia realized how big this organization could become. “That night, I knew not only would I be involved, but I would have a lead role,” she recalled. Patricia recognized that hospice was something she believed in so strongly, that she would do all she could to make sure this idea became a reality for all Niagara County families.

   That first meeting led to the start of an ad hoc committee. Patricia was immediately asked to be the chair. From the inception of Niagara Hospice, she did whatever she could to make a big change. This ad hoc committee was made up of individuals who did not have much money or power, but they had a strong belief in hospice for the people of Niagara County.      From those early planning days to today, their collective passion has led to nearly 30,000 Niagara County families receiving specialized care and personalized support and guidance throughout the challenges of a terminal illness.

   “Despite all the passion the committee had, there was a challenge in conveying the meaning and importance of hospice care,” said Evans. “If someone had not personally experienced a terminal illness with a loved one, they were less understanding of why hospice was needed in Niagara County.”

   This led the committee to realize the first step was educating the public about what hospice care provided and why it was so essential Niagara County have access to these services. Working with Buffalo Hospice, they began having information sessions to educate the communities around Niagara County about the future of hospice care they were trying to build.

   By 1982, Niagara Hospice was incorporated under the title of Niagara Hospice Education Association Inc. At the start, it was not a health care organization, so education was included in the title to avoid confusion. They still had much more work to do and significant funds to raise to create an organization that could deliver comprehensive end-of-life care to Niagara County residents. There still would be six years until Niagara Hospice was able to admit its first patient.

   In the meantime, the organization worked on creating a Certificate of Need for the New York State Department of Health. Pat Evans, along with the other members, worked on a proposal to convince the government that Niagara Hospice was needed to care for so many families in Niagara County.
   By 1988, Niagara Hospice Inc. became the official name and a clinical staff was in place to deliver care to families. Since that first patient, 28,000 families have received support as they navigate the difficult times of late-stage diseases.

   Patricia was the first president of Niagara Hospice, and to this day, she remains a member of the Board of Directors. While working to launch Niagara Hospice, she traveled to Great Britain in the ’80 to spend time at St. Christopher’s Hospice, working with Dame Cicely Saunders, credited with developing the modern hospice philosophy. She learned more about the approach of hospice care services and how Dame Saunders and St. Christopher’s end-of-life services operated and impacted their patients’ comfort and quality of life.

   After having two sons, Patricia attended Niagara County Community College part-time to earn a degree in human services. There she fell in love with education. While attending graduate school at the University of Buffalo, she was first exposed to the hospice principles, which ultimately kick-started the entire hospice movement for Niagara County.

   Following graduation, Patricia learned more about hospice and how to provide the highest quality of care for patients and their families and caregivers. In addition to being the co-founder of Niagara Hospice, she also worked to develop the human services program that NCCC still offers, which led to her position as a professor there until 2018.

   Looking back on her involvement at Niagara Hospice, Patricia said that “the quality of care never wavered throughout the years.” The organization started with some people who wanted more support for families facing a terminal illness gathering around kitchen tables and generating ideas about to how to make a change in the availability of comprehensive end-of-life care. After its small group beginnings and Patricia’s vision and commitment, every employee, volunteer and donor has made a lasting impact on Niagara Hospice and helped elevate the comfort, dignity and quality of life for Niagara County residents.

By Anna Grande, Communications & Marketing Intern

When exploring the origins of hospice care, one might come up with several different answers. There is evidence of “hospice” care dating back to the 11th century, if not even earlier. This type of comfort care was present during the Crusades, when all along the routes to and from Jerusalem, there were places where injured, tired or dying men could spend time and be cared for.

   During the Middle Ages, “hospices” developed as a part of the Monastic Reform and as places to house the sick and dying. More evidence of hospice care can be found in the 17th century through the work of St. Vincent de Paul and St. Louise de Marillac and the Daughters of Charity and the Congregation of the Mission. 

   In the late 1800s and early 1900s, there was a need for comfort for those who were “incurable,” and the movement for hospice care emerged in London, Australia and New York City. While tuberculous and other terminal illnesses at the time were rapidly spreading, patients were unable to stay in hospitals. Throughout these difficult times and despite a lack of modern medical science and understanding of terminal conditions, the need for end-of-life comfort and specialized care was recognized and met.

   The care that evolved through the centuries generated the groundwork for the modern philosophy and best practices of hospice and palliative care. The modern approach and methodology developed in the 1960s through a physician in England. After volunteering at St. Luke’s Home for the Dying Poor, Cicely Saunders realized that she could be more beneficial to people with terminal illnesses by going to medical school and becoming a doctor. Saunders introduced the idea of benefiting her patients through care and not cure, and she emphasized the importance of shifting attention away from the disease and instead focusing care, comfort and support on the patient.

   Dr. Saunders conducted tours to introduce her new philosophies to medical students in the United States in 1963, teaching the concept of “total pain.” This idea states that pain is not just a physical sensation, especially with someone who is dying as they experience pain socially, spiritually and mentally. Dr. Saunders compared terminal illness and chronic pain as a patient being held captive. She recognized the psychological toll that this kind of illness was taking on her patients, and her idea of hospice care was formulated. As much as finding physical comfort for her patients was a necessity, so was their emotional comfort. 

   While in America, she gave a talk at Yale’s School of Nursing and Medicine, where the dean, Florence Wald, was inspired by her philosophy. Wald ended up taking a leave from the school to visit England with Dr. Saunders to learn firsthand what this new way of terminal illness care was like.

   In July 1967, St. Christopher’s Hospice in England admitted its first patient. A year later, Wald returned to the UK to work with Dr. Saunders to learn more about hospice care. By 1974, Wald was ready to bring the first hospice care facility to America, and with assistance from a chaplain and two pediatricians, Connecticut Hospice opened. 

   In the ensuing 47 years, more than 4,600 hospices have been established in the United States, and it all started with a young nurse in the 1960s who wished for people to be able to die with dignity, peace and comfort. 

   Niagara Hospice became one of those organizations when it cared for its first patient in June 1988. To learn more about the key dates in the 33 years of hospice care in Niagara County, click here.
  
Bibliography:

• Dame Cicely Saunders. (n.d.). Retrieved from https://www.stchristophers.org.uk/about/damecicelysaunders.
• History of Hospice . (2018). Retrieved from https://www.nhpco.org/hospice-care-overview/history-of-hospice/.
• Our History . (n.d.). Retrieved from https://www.stchristophers.org.uk/about/history.
• Roberts, N. F. (2018, June 22). The History of Hospice: A Different Kind of Health Care. Retrieved from https://www.forbes.com/sites/nicolefisher/2018/06/22/the-history-of-hospice-a-different-kind-of-health-care/?sh=a19e949660ce.
• The Origin of Hospice. (n.d.). Retrieved from https://www.goodshepherdnc.org/origin-of-hospice.