Hospice, Long-Term Care, and Dementia Quiz

Hospice, Long-Term Care, and Dementia Quiz

What's your response to these statements?

By Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

               

1)   Death is a terrible thing.

Fact: Death is a natural part of life that everyone will experience. Accept, discuss, and prepare for becoming dead in your future.

2)   It’s always better to die at home.

Fact: “Home” can be the presence of love and comfort wherever a terminally ill patient may be. Most people die in institutions.

3)   Hospice speeds up death.

Fact: If two similar people had the same terminal illness, the one receiving hospice care would probably live longer.

4)   Pain is a natural part of aging and dying. Under-treated pain slows down the death process.

Fact: Pain medication is available to offer appropriate relief to patients. Under-treated pain worsens the process unnecessarily.

5)   Patients with dementia don’t miss visits from relatives and friends they don’t recognize.

Fact: Patients with dementia are often aware of their surroundings on some level. Loved ones should focus on patients’ current abilities and make every effort to spend quality time with them.

6)   Patients with dementia are always suffering.

Fact: Patients with dementia have varied days like everyone else. Happy memories and enriching activities can slow-dance into their realities and fill them with joy.

7)   Caregivers must only focus on their patients.

Fact: Caregivers must focus on their own care as well. They should seek supportive resources and monitor their sleep habits, irritability, and general health, always with a willingness to seek help when needed.

8)   Caregivers should not question decisions of healthcare professionals who are the experts.

Fact: Caregivers should be proactive as patient advocates. They should stay informed about patients’ symptoms, diseases, treatment purposes, and side effects.

9)   Long-term care facilities are not good places for children to visit.

Fact: Intergenerational experiences help children understand life’s passages. Children should experience opportunities that encourage them to become nurturing people, eliminate ageism stereotypes, and expose them to possible career choices.

10) Hospice work is mostly depressing.

Fact: Millions of hospice workers view their involvement with patients as privileged occasions for mutual growth and fulfillment.

© Frances Shani Parker

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Assisted Living Facilities Provide Hospice Care (Research, Video 3:48)

Many people have told me that they didn’t know hospice care exists in nursing homes. Even more seem surprised to learn that hospice care can be provided for residents in assisted living facilities. I can’t emphasize enough that hospice care is available no matter where a qualified person lives at home, in an assisted living facility, in a hospital, and even in prison.

What does good quality care at the end of life look life for hospice-enrolled residents in assisted living facilities? A study was done by the Oregon Health & Science University to get detailed descriptions of end-of-life care provided by medication aides, caregivers, nurses, and hospice nurses in urban and rural settings. Interviews were used to gather information. Having worked as a hospice volunteer in urban nursing homes for several years, I was interested in the results. They were very similar to what I would have expected from a nursing home or any other institutional care:

1)   The quality and nature of resident-staff and assisted living-hospice staff relationships are critical in promoting good end-of-life care for residents.

2)   Length of the resident's stay in the facility and how well staff knew the resident were associated with the quality of the resident-staff relationship.

3)   Respectful collaboration, clear communication, use of complementary knowledge and skills of staff, and shared expectations about the care were associated with positive staff relationships.

4)   Administrative support for hospice patients in assisted living facilities was important.

Assisted living facilities and hospice organizations that are committed to working together with hospice programs must both support staff, patients, and families. There is a need for more successful models of this partnering system of care to meet the needs of our growing population of older adults.

This video titled Hospice: At Home, In Assisted Living, In Hospitals relates the positive experiences of patients receiving hospice care in different settings:

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Person-Centered Care: Nursing Home Culture Change (Photograph Research, Video 4:00)

Change is not always easy, especially if there is widespread acceptance that practices are working well the “wrong” way. Fortunately, the growing movement of nursing home culture change across America is transforming beliefs in what the “home” part of nursing home really should look and feel like. In many cases, reluctant staff members who resisted change at first are seeing the benefits, particularly regarding improvements in residents’ health.

Even something simple like automated historical digital displays of residents' photographs to remind staff of each resident’s personhood can positively impact patient-staff communication. Researchers at the University of Kansas School of Nursing displayed residents’ historical photographs in digital frames in their rooms. They compared audio-recorded staff-resident conversations before this intervention with conversations afterwards. Results indicated increased staff person-centered talk and less task-oriented talk. Residents spoke more about interpersonal topics. Their engagement and reminiscence improved. Implementing low-cost historical photo displays in residents' rooms enhanced person-centered communication. 

Many other interventions can advance person-centered care in nursing homes. Staff members who have made the paradigm shift from traditional nursing home settings to nursing homes with person-centered environments and practices can best explain the transformations of themselves and residents. This video titled Before and After Person-Centered Care highlights changes from staff perspectives:

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Clown Doctors for Older Adults: Dementia Research, Video 1:58

It’s no joking matter that laughter has important therapeutic value that can improve quality of life. The best laughter is spontaneous. Not only can we create reasons to laugh ourselves, other people can trigger the laughter response from us. It just makes good sense that the benefits of laughter should be integrated into the prevention and treatment of illness.

How about older adult clown therapy performed by clown doctors? Limited research shows that practitoners are increasingly using clown doctors in geriatric settings, including with people who have dementia and their caregivers. Clown doctors can help dementia patients improve well being, promote social interaction with their environment, and reduce problematic behavior. Benefits for the nursing staff include reduced workloads and stress relief. The overall work atmosphere becomes more positive. Keep in mind, however, that there are people who are very fearful of clowns.

The video Volunteer Clowns Visit Hospital Patients shows adults enjoying visiting clowns in California hospital.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Nursing Home Hospice Impact on Certified Nursing Assistant (CNA) Staff (Research, Video 1:56)

Hospice care in nursing homes continues to increase as more people become aware that hospice services are available wherever they live. Back in the 90’s when I first started hospice volunteering, many people told me they thought hospice care was only at private homes or in free-standing hospice facilities. On the negative side, there were those who thought nursing homes would get kickbacks from hospice referrals. Speculation about nursing homes receiving additional staff hours at no cost, which could lead to decreases in nursing home staffing, was mentioned.

What has happened in terms of nursing assistant staffing with the introduction of hospice care in nursing homes? Researchers at Warren Alpert Medical School at Brown University studied this process for several years with these staffing results:

“The introduction of hospice services in a nursing home did not result in statistically significant changes in nursing assistant (CNA) staffing. Instead, increases in hospice volume resulted in small increases in CNA staffing.”

As a hospice volunteer working directly with patients, I had many opportunities to observe and communicate with CNA staff members who were often first responders in meeting resident needs. Many exhibited dedication and genuine care for residents in spite of their own expressed hardships on the job such as low pay, high staff turnover resulting in increased workloads, and lack of appreciation. The following video titled I am a Nursing Assistant shares their caregiving challenges and rewards:

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Older Adults, Seniors Celebrate Mardi Gras (Nursing Home Residents in Video 1:26)

Mardi Gras celebrations in New Orleans, my hometown, and in other cities greatly enhance older adults' quality of life. Mardi Gras Day will be next week on February 21 on "Fat Tuesday," the day before the Christian season of Lent starts. Older Adults celebrating this world-famous Carnival season often have parties and small parades. Many nursing homes and senior communities participate in the fun. Street parades attracting thousands of local residents and curious tourists occur daily. Parades are held during the day and at night.

Growing up in New Orleans, I loved this magical season. Mardi Gras parades created wonderful memories for me. The excitement of swimming in an ocean of festivity, the buoyancy from living fantastic fantasies thrilled my senses. They connected me with the same wave of wonderment flowing through every child who ever lived on this planet.

I store my New Orleans memories in a marvelous, mental, treasure chest painted with purple, green, and gold brush strokes, the official colors of Mardi Gras. All grown up, I still smile when I look inside. No doubt, many older adults will be smiling during Mardi Gras season now and in the future.

Upcoming Mardi Gras Day Dates

2012	February 21		2019	March 5
2013	February 12		2020	February 25
2014	March 4		2021	February 16
2015	February 17		2022	March 1
2016	February 9		2023	February 21
2017	February 28		2024	February 13

This video includes nursing home residents in small Louisiana communities participating in outdoor and indoor Mardi Gras celebrations that entertain all ages:

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Hospice Volunteer End-of-Life Vigil (Video 1:58)

The body knows when it’s time to slow down and die. Each body will die in its own way and in its own time when the process starts. The importance of being with a patient who doesn’t want to die alone is the reason many hospice programs are providing specialized volunteer vigil training. When it comes to patients, it is more about the volunteer being there than what the volunteer actually does. The patient senses and appreciates the volunteer’s presence. During vigil training, a volunteer is taught how to provide bedside support during the final days and hours of a patient’s life. Assistance for families is included. This can be an overwhelming time for patients and their families because so much of the experience is unchartered territory.

At some facilities, staff members also volunteer for vigil assignments. Vigils, which are based on a patient’s wishes, can include talking, praying, inspirational reading, playing music, performing rituals, touching and, of course, sharing silence. Vigils may last hours or days and can be done in shifts. Reflecting the hospice philosophy, volunteer vigils help provide the patient with a more peaceful end-of-life experience.

In this video, Doris, a hospice volunteer at the Hospice of Western Reserve shares her hospice experiences that include end-of-life vigiling with patients actively dying:

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Older Adult Online Love: Internet Dating (Research, Video 3:59)

Believe it or not, the Internet is a good place to find out about the current status of older adults looking for romantic love. If you think they aren’t searching for love there in substantial numbers, you probably aren’t aware of numerous websites with a specific focus on meeting their matchmaking needs. I know several older adults myself who have found love on the Internet, but I’m also aware of some horror stories.

Older women looking for romance with men are at a particular disadvantage due to the shortage of eligible men available to them. Should they lower their standards or keep them high? After all, many older women are happier with lifestyles free of romantic obligations? What about men with the advantage of choosing from a much wider pool of women? How selective are they? Do older adults approach romance in a different manner than younger adults?

Research on older adults and romance was undertaken by the Department of Psychology at Georgia Southern University to determine these answers. They compared Internet dating profiles of 100 older adults and 100 younger adults. These results give insight into how older adults are approaching romance these days:

1)   Older adults, especially older women, were more selective than younger adults when it came to age, race, religion, income, and height of a prospective dating partner.

2)   Older adults were willing to travel substantially farther than younger adults to meet the right partner.

Note: My personal research at a popular matchmaking website indicated that many older adult men want women at least five to ten years younger than they are. That certainly doesn’t help older women, especially those who are more energetic and vibrant than most women and men their age.

What does all this research say about older adults in their search for love? They are eager to find that special someone, but not willing to settle for just anyone. Apparently, age and experience have made them pickier.

The older adult couples in this video from The Early Show met online and have been successful in finding love. Some older adults however, do find online meeting to be distrustful because potential dates don’t always tell the truth about themselves. Others still want to try to find soulmates there and not give up. All four couples who met online and married thought there were advantages in meeting on the Internet such as being able to ask more questions and getting to know more dating candidates faster. What about you? Would you try Internet dating? Do you have an Internet love story to share?

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Poem: Volunteer Honors Alzheimer’s Patient and African American Ancestors

Guarded from angry mobs by federal marshals in 1960, first-grader Ruby Bridges integrated William Frantz Public School in New Orleans, Louisiana, my hometown. In protest during the first year, most parents withdrew their children from the school.

Because my hospice volunteering is primarily in Detroit, Michigan, many people assume that all of my patients are African American. Actually, I have had several Caucasian patients who were in my care for years. Dying is universal. My patients and I come together as strangers and often discover that we share similarities that bond us to higher levels of understanding of one another and ourselves. Shared similarities can include race, language, talents, occupations, travel, values, joys, and pains.

I was inspired to write this poem while watching my hospice patient sleep. I thought about our shared African American heritage that bridged our communication beyond her Alzheimer's disease. This poem is dedicated to her and our ancestors, especially those strong and inspirational like Ruby Bridges.

Deeper Than Words

The outside world arrives

wearing my willing face.

Toothless, your smile widens

like a baby’s hungry for attention.

Almost ninety-eight years old,

your inner candle still glows.

A hospice volunteer, I lean closer,

talk into your listening left ear,

“Today is Sunday, Miss Loretta.”

My news drifts away like smoke.

You stare at me through dying coals.

Whatever I ask, you whisper, “Yes.”

I stroke your age-softened arms

while your hazed mind masters sleep.

Watching you, I dream generations

of women black and strong, each one

a book of sustaining stories

about joy, pain, courage, survival.

Within your warm brown frame,

spirits from our common history linger.

Aides say you have dementia,

that you don’t know a word I say.

Our language goes deeper than words.

We speak to each other’s souls.

© Frances Shani Parker

Excerpt from Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Community Service By Older Adults Living in Nursing Homes, Assisted Living

Lettie Miller Frye, an assisted living resident of Greenfield makes quilts to raise funds for the Edinburg Volunteer Fire Department. Photo by Rich Cooley/Northern Virginia Daily News

When I was writing my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes, I created a chapter about a nursing home called Baby Boomer Haven based on best practices of various nursing homes, but not nearly enough, around America. This imaginary nursing home includes older adults performing community service. In this book excerpt, Ruth, a wheelchair –riding resident, takes readers on a tour and explains some of the service activities they perform:

“At Baby Boomer Heaven, I mean Haven, we emphasize win-win community service. We’ve learned that when we join with the community and put all of our notes together, we create some fine songs. Of course, we appreciate service from others, but we want to serve people, too. We want to feel like we are doing our part to make the world a better place now and for future generations.

Our gift shop sells crafts we make to help fund service projects.  Among several services we provide, residents help Fetching Feasts provide meals delivered to seniors at their homes. We perform tasks here that make the process easier for them. We sew blankets for newborns. We often tutor and read to children at our childcare center."

Ruth goes on to explain other service activities in which residents demonstrate their reciprocal partnership with the local community. Do you have community service activities to share about residents in older adult communities?

If you would like to know more about positive and negative aspects of nursing home life and how families can transition loved ones to long-term care facilities, Jonathan Rosenfeld, writer of Nursing Homes Abuse Blog recommends ten helpful resources there that can assist you.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Happy Birthday to Hospice and Nursing Homes Blog (Video: .29)

Five years ago in January 2007, I decided to commit to writing Hospice and Nursing Homes Blog. Anybody who’s ever written a blog for years knows “commit” is the only word to use here, especially if you're the only writer. Cyberspace is a humongous place, but I firmly believe one person can make a positive difference.

Why do I blog? I want to promote more interest in hospice and palliative care, share my personal journey and insights as a hospice volunteer, increase person-centered nursing homes, and improve eldercare and quality of life for older adults in general. There are various ways to achieve this, and blogging is one of mine. Using stories, poems, news, research, interviews, photos, and videos, I  present universal information that includes the often-missing voices of people of color and concerns of urban areas.

The years keep ending and beginning, and now it's 2012. I can hardly believe it's been five years. Blogging is a challenging, rewarding, and service-oriented activity for me. It's given me the opportunity to meet and exchange ideas with interesting and diverse people all over the world. 

Thank you to all my wonderful readers for your support during my five years of blogging Hospice and Nursing Homes Blog. Commemorating this milestone with song are older adults DameEdithDivine and HerHandyman whistling “Happy Birthday to You!”

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Homeless Older Adults: Geriatric Problems and Hospice Care (Research, Video 5:15)

Living in a large urban city, I see homeless people a lot. At one point, the public school where I was principal had more homeless students than any school in Michigan. Having interacted with homeless people at various age levels, I often wonder about their life stories. Of particular concern are older adults who have been homeless for many years. What brought them to this condition?  What’s really going on with them physically, mentally, and emotionally? What happens to those living in shelters and on the streets when they are actively dying?

The average age of America’s homeless population continues to increase along with the geriatric syndromes many of them have. Research is important to understand and improve the plight of homeless older adults. With this in mind, researchers at Beth Israel Deaconess Medical Center studied two hundred forty-seven homeless adults aged 50-69 who were recruited from eight homeless shelters in Boston, MA. Their goal was to determine the prevalence of common geriatric syndromes of older adult homeless. Among their key findings are these percentages involving research participants:

1. Difficulty in performing at least one activity of daily living was reported in 30%.

2. Cognitive impairment was present in 24.3%.

3. Impaired executive function was present in 28.3%.

4. Criteria for frailty were met by 16%.

5. Major depression was present in 39.8%.

6. Self-reported hearing and visual impairment was present among 29.7% and 30.0% of subjects.

7. Urinary incontinence was reported by 49.8%.

In summary, homeless older adults were more likely to have functional impairment, frailty, depression, visual impairment, and urinary incontinence compared to three population-based cohorts of older persons. Geriatric problems that are potentially treatable are common in older homeless adults and are experienced at higher rates than in the general older population

If homeless people are living ill on the streets, they are also dying on the streets. What can be done to help homeless older adults in need of hospice care? Alpha Project for the Homeless has launched one of the only Hospices for the Homeless programs in the country. Living with Dignity, a program inspired by Kyla Winters, is located in San Diego, California. This video describes how hospice care supports the homeless.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

When Older Adults, Seniors Want to Die (Hospice Nursing Home Story, Research)

Some people think being around dying patients must always be sad because everybody fears death, and no one really wants to die. As a hospice volunteer, I have had several patients who could prove them wrong. These nursing home residents actually stated they looked forward to death and gave reasons that had nothing to do with depression. This is what hospice patient Rose said to me about her upcoming death:

“How old did you tell me I was?” Rose asked.

“You’re ninety-nine, and you’ll be a hundred years old on your next birthday.”

“A hundred years old is too old. I don’t think I want to be that old.”

“There are three other ladies in this nursing home who are older than that. One is a hundred three. We talked to her last week during your wheelchair ride.”

“How much longer will it be before I make a hundred? I don’t know if I want to wait too much longer.”

“It’s only one more month. I remember you said you had spiritual talks with your minister. If you decide to wait, I’ll get you a big balloon that looks like a birthday cake.”

“I guess I could wait. Yes, I think I will wait. That way I can celebrate my hundredth birthday. When I do get to heaven, I can tell everybody I lived to be one hundred.”

And that’s exactly what she did.

(Excerpt from Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes)

But wanting to die is not always that simple. According to this VU University Medical Center research study in Amsterdam about older adults’ death thoughts and wishes, 81.3% never had them. Among those who did, 67% had depressive symptoms, and 20% suffered from a depressive disorder. Wanting to die was associated with depressive symptoms, a depressive disorder, lower perceived mastery, financial problems, loneliness, small network, involuntary urine loss, being divorced, and having a speech impediment.

What can we learn from this research? Certain situations increase the likelihood that an older person wants to die. Although the desire to die may not be related to depressive symptoms, depression should be cause for investigation about death wishes and should be treated.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Burnout Compassion Fatigue: Health Care, Law Enforcement, Other Service Professions (Video 4:20)

Compassion fatigue is a form of burnout experienced in many service professions such as health care and law enforcement. It results from empathizing too much with another person’s pain. Without realizing it, professional and personal relationships may become entwined. Compassion fatigue can cause painful physical, mental, emotional, and spiritual exhaustion. Resentment may build toward the person receiving care. Substance abuse might be used as an escape from the exhaustion of caring too much.

Healthcare workers and others in service professions should monitor their behavior and feelings for signs of compassion fatigue. Treatment often includes counseling and the development of coping strategies.

This video titled Compassion Fatigue: The Stress of Caring Too Much describes compassion fatigue as explained by workers in the mental health, hospice, and law enforcement professions.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Ten Steps to Becoming Dead Right: Hospice Volunteer Perspective

If there’s one thing I’ve learned from years of hospice volunteering, it’s that death will come when it comes. Grappling with death can be so much easier when it’s approached like any other important life event. Preparation includes following a workable plan that brings comforting closure when that ultimate destination is reached. Consider using these ten steps featuring scenic routes on your journey to becoming dead right:

     Ten Steps to Becoming Dead Right

1.  Accept death as part of life.

Death will come no matter how often the topic is avoided or how forcefully technology wrestles it to the ground. 

2.  Listen to the Universe.

Some say it’s the Universe. Many use God, Higher Power or other names. If you believe you are part of an infinite enlightenment, be still and listen.

3.  Expect rainbow smiles.

Rainbow smiles are joyous, healing, memorable moments that come more often when anticipated.

4.  Live a healthy lifestyle.

Practice habits of healthy living in all areas of your life.

5.  Be informed and proactive.

Keep abreast of what’s happening in life. When circumstances arise that can benefit from your input, apply what you know.

6.  Do your best.

You can’t solve every problem or be everything to everybody. Do what you can.

7.  Give service to others.

Complement others by fulfilling needs through service. Both server and recipient benefit from this partnership.

8.  Be grateful for blessings.

Blessings come like wondrous celebrations held in your honor. Let appreciation reign!

9.  Put death wishes in writing.

Fulfillment of your end-of-life wishes will often depend on what you discuss and record now. Get medical, financial, and property decisions in order.

10.  Have a dignified death journey.

Breathe in your final phase of life with contentment. Experience a dying process that brings beauty and calm to your personal letting go.

© Frances Shani Parker

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes 

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Older Adult Religion and Spirituality (Research, Hospice Nurse Video 2:51)

Are most religious older adults spiritual? Are the most spiritual ones religious? Topics related to spirituality and religion can get very personal. That’s why many people avoid them. As hospice volunteers, we are advised not to impose our personal religious or spiritual beliefs on patients. Some people have daily spiritual experiences that are a core part of their lives. At the same time, they may have varying levels of praying or attending formal religious services.

When older adults come together and live in a community, they bring all their varied personal religious and spiritual beliefs and practices, including no beliefs and practices. Rush University Medical Center researchers studied the levels of daily spiritual experiences of 6,534 older adults living in biracial communities. These are the reported results of that study:

1)   Most participants had daily spiritual experiences. African Americans and women had more than Whites and men.

2)   Prayer and worship were moderately connected with daily spiritual experiences.

3)   African American race, older age, female gender, better self-rated health, and greater social networks were associated with higher daily spiritual experiences scores. Higher levels of education and depressive symptoms were associated with lower daily spiritual experiences scores.

Overall, these findings are consistent with other research findings on religion and spirituality in the lives of older adults.

In this video titled I Wanna Go, hospice nurse Mary Peakes sings an afterlife spiritual song at the family’s request for patient Pamela Rucker. Ms. Rucker died from ALS, also known as Lou Gehrig’s disease, four days later after peaceful closure with family members. Her daughter stated, “My life will be okay if I know she is waiting for me at the end of it. I want to thank all the hospice nurses. I am so grateful for these angels who helped my mother and her family through this difficult time.”

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Male Caregiver of Mother: Interview with Frank Gasiorek and Frances Shani Parker

Catherine and Frank Gasiorek

Frank Gasiorek is a man devoted to his terminally ill mother. He belongs to a growing group of 14.5 million men who make up one out of three caregivers in America. Like millions of people carrying personal stories most of us will never know, he told me he was a caregiver only after I happened to mention my involvement with eldercare. From our conversations, I have come to view him as an excellent role model for caregivers in general, especially men. In this interview with me, he shares his caregiving journey:

1)   Frank, how did you become your mother’s primary caregiver?

I began my role as my mother's primary caregiver due to being an only son with siblings living out of state. Also, having a strong bond with a person who was a dedicated single parent and mentor during my early childhood years gave me the desire to give back and return the service.

2)   What concerns do you think are unique to caregiving of a parent by an adult child, especially one of the opposite sex?

Sometimes different interests and backgrounds may be a factor.  However, the realization that I only get one of these, a unique person and mother, is important. As the years passed and more personal care and attention were needed, my mother stated she did not want to live her final years outside of her home. She also did not want outsider care assistance.   

Acceptance of my role as a male caregiver had to be addressed. No longer am I the son. I had to explain to my mother that, when I step in as the caregiver, she needs to respect the care she receives. I am the professional person providing home care. There have been times when she returned from the hospital and then to rehab and back home. I did contract some part-time assistance with homecare nursing for the short term. 

3)   Has your being a male made you less prepared or efficient as a caregiver?

Having worked previously within the healthcare system has exposed me to the assistance that comes with caregiving. In addition, having been rooted in human sensitivity has provided me with a foundation to complement the needs of the healthcare person.

4)   What are some resources that you have found to be especially helpful and that you would recommend for others?

Always consider the local church, community and city services that offer guidance and support. Public and private agencies are easy to research via the Internet.

5)   Do you communicate regularly with other caregivers for support?

Having a network of colleagues associated with caregiving is essential to maintaining balance. A support group with other caregivers creates a bond of positive feedback. Primary physician support staff members are often good individuals for consultations. 

6)   Caregiving can be stressful and socially isolating. Have you experienced this? If so, how do you cope with these challenges?

My network of support helps to keep me balanced when I experience challenges. We allow one another to vent our daily drama of caring for loved ones.

7)   What rewards have you enjoyed as a caregiver?

Spiritually satisfying, caregiving brings the joy of assisting another person for the common good.  Keeping a person exposed to dignity and love is uplifting to the spirit.

8)   What advice would you give to other caregivers now that you understand what this responsibity entails?

Beware. Caregiving is not for everyone. Caregiving is not easy.  Caregiving takes planning and involves orchestrating many daily human needs of an individual. Always maintain space between caregiving assignments and appointments to recharge.

9)   How can those who are not caregivers support those who are?

Financial support would seem to be the easy answer. Nonetheless, periodic backup team members who are not caregivers can greatly assist primary caregivers. For example, team members can provide helpful phone calls to caregivers and homebound individuals.

 

   10)  Do you have any final words?

Caregiving is a rewarding experience that is not for everyone. As our mature population continues to live longer and more independently, there is an increasing need for caregiving at different levels. Respect for life must be admired, honored and planned for to create quality life.

Frank, thank you for sharing your caregiving journey. Your firsthand knowledge will be beneficial to caregivers, patients and many others involved in improving quality of life for those in need of caregiving assistance.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

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