Hospice, Nursing Home, and Terminal Illness Myths

Hospice and Nursing Home Myths

by Frances Shani Parker, Author

“Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

               

      1.  Myth: 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. Myth: 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. Myth: Hospice speeds up death.

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

4.   Myth: 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.   Myth: 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’ abilities and make every effort to spend quality time with them.

      6.  Myth: 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.  Myth: 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.   Myth: 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.   Myth: Nursing homes 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.  Myth: 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

                www.francesshaniparker.com

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

“Hospice and Nursing Homes Blog”

Depression, Suicide in the Elderly (Video 2:52 mins.)

Discussions about suicide usually don’t focus on the elderly, even though their rates of suicide are proportionately high. Depression, which is too often ignored and considered part of aging, often accompanies suicidal tendencies. The following are symptoms of depression which may be helped through diagnosis ruling out medications, counseling, and drug therapy:

1)   Persistent Sadness

2)   Feelings of Worthlessness

3)   Tearfulness

4)   Pacing and Fidgeting

5)   Excessive Worry

A study at the Medical College of Wisconsin, Milwaukee focused on risk factors for elderly suicide. An analysis in Caucasians found that “compared to married individuals, those widowed, divorced, or never married had a 2.5 to nearly 5-fold increase in risk of suicide death. Males aged 65-74 had almost a 7-fold increased risk compared to females of that age, and the risk increased for males as they aged, compared to females 65-74 years old.” Being single, male, and a male advancing in age are suicide risk factors. The most common method of suicide was firearm use (66.9%).

Knowing risk factors for elderly suicide can assist healthcare workers, caregivers, and others in recognizing early signs and providing approporiate intervention. You can read more here about the Wisconsin research.

This "NBC New York Nightly News" video titled “Segment on Elderly Depression”  highlights the relationship between elderly depression and suicide.

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

“Hospice and Nursing Homes Blog”

Hospice-Palliative Care Volunteers: Why Families Like Them (Research, Video)

You’re a hospice-palliative care volunteer. You were drawn to serve patients and their families during  journeys of terminal illness. You do your best, always hoping you have fulfilled their needs. Best of all, many seem to appreciate your being a part of their lives.

What is it about hospice-palliative care volunteers that makes them appealing to families? Researchers at Mount Allison University in Canada asked this same question and went straight to family members for answers. A survey of 22 family members whose deceased loved ones had used the services of a hospice-palliative care volunteer reported these results in order of importance:

1)   Opportunity to take a much-needed break from the demands of caring for their loved one

2)   Emotional support

3)   Shared time with the volunteer

4)   Information provided by the volunteer

Family members were satisfied with volunteers and rated them highly. The majority of families (85%) rated their volunteers as well trained. In addition, family members (95%) did not feel that volunteers had invaded their privacy or patients’ privacy. Sounds like lots of volunteers are successful at fulfilling many patient and family needs through service. This video poem expresses the win-win experiences of many hospice-palliative care volunteers:

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

“Hospice and Nursing Homes Blog”

Cremation Process and Storage of Cremains (Video 2:32)

We’re all going to die. That is a fact. Everyone should make plans regarding disposal of their bodies after death. Instead of being buried in a cemetery, increasing numbers of people are choosing cremations, in which intense heat and flames reduce bodies to bone fragments in less than two hours.

Not only are cremations selected because they are less expensive than traditional burials, some prefer them for the ease in spreading the ashes later and the convenience in incorporating cremated remains or cremains, as they are called, into death rituals. Sometimes families are allowed to be present at cremations and incorporate religious practices. Most religions accept cremations and permit the cremains at memorial services.

Cremains are often stored by families who keep them in urns that vary in their uniqueness. These may include such containers as vases with pedestals or even personalized teddy bears with hidden pouches. Among other uses, cremains of loved ones are being used in jewelry, shotgun shells, and fireworks. In terms of other destinations, cremains can be stored in a cemetery plot, mausoleum, or scattered in a garden or a body of water. For $5,300 cremains can be sent aloft into outer space, while $13,000 can send them into luna orbit. With so many choices available, everyone should make plans regarding disposal of their bodies. What will happen to your body after death?

In this video, funeral director Elisa Krcilek explains the cremation process.

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 Internet stores.

Hospice and Nursing Homes Blog

Massage for Caregivers of Terminally Ill Patients (Research, Video 3:35 mins.)

Many say that what caregivers need most is caregiving. Relatives caring for the terminally ill at home are particularly in need of support to improve their own quality of life. One form of nurturing for caregivers that reduces their levels of stress is soft tissue massage (hand or foot). This strategy has demonstrated beneficial results for caregiving relatives of patients receiving palliative home care.

In research reported in the “Journal of Clinical Nursing,” nineteen relatives received soft tissue massage nine times (25 minutes) in their homes. After all the sessions were completed, relatives participated in a tape-recorded interview about their massage experiences. They reported that the soft-tissue massages gave them feelings of being cared for, body vitality, and peace of mind. For a while, they experienced the freedom of being worry-free.

These positive results from having massages were experienced by all participants. Soft tissue massages can play an important role in palliative care by providing supplementary benefits in supporting caring relatives.

This video titled “Hand Massage Lesson by Health-Choices Massage School” demonstrates how a hand massage is done.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

Hospice and Nursing Homes Blog

Young Nursing Home Residents: Person-Centered Culture Change Must Include Them

As quiet as it’s kept, young residents are often found in nursing homes. They are a growing population that many overlook when they think of nursing homes as “old people’s homes.” In many ways, traditional nursing homes are not designed with needs of young residents in mind.

The first young resident I came to know while I was hospice volunteering was a young woman named Velma. She appeared to be in her early twenties. She was often stationed in her wheelchair in the hall near the elevator. She was not my patient, but, as a volunteer in nursing homes, I came in contact with many people. Velma was mentally impaired and did not speak in sentences. But she was quite good at waving and laughing loudly when I showed her attention on the way to my patient’s room. We had a little game where, pretending not to notice her when I was leaving, I would get on the elevator and then peep back at her and wave before the doors closed. She thought this was hilarious, and she watched me closely whenever I headed in that direction.

Another young resident was one of several roommates who shared a room with my patient. Many of my hospice patients had multiple roommates. Imagine dying while living on a daily basis in a room with three other people with various illnesses, including dementia. Warren, who seemed to be in his early thirties, roamed freely around the nursing home. While he also did not speak in sentences, his grunting sounds were perfect. He had a habit of running up behind me in the hall, covering my eyes with his hands, and grunting loudly, “Who? Who?” Of course, nobody else I knew did that to me, including elementary and middle school students at my school where I was principal. I always guessed he was the “mystery” person. Then we would both fall out laughing as if each time were the first. Thinking about this ongoing scenario still makes me have a rainbow smile.

But there was a sadness about these young people and some others I have seen in nursing homes. These residents, particularly those severely challenged, didn’t appear to have much scheduled to enrich them creatively other than watching television and observing what was going on around them. Sure, there were overlapping activities in which all ages could participate. But ages twenty through one hundred have unique requirements. Young people often craved attention and clearly needed more engaging activities focused on their age groups. Their needs must be addressed if nursing homes are to become person-centered in providing quality of life for all residents.

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

“Hospice and Nursing Homes Blog”

Hospice Elders Need Control Opportunities During Dying Process

Control, we all crave it on some level. When it’s not there when we want it, our spirits feel stifled. Even toddlers will assert themselves when they feel their power slipping away. What about control needs of terminally ill elders in hospice care? Do they strive to exercise control over aspects of the dying process? Research says they do.

The School of Social Work at the University of Wisconsin-Madison explored this issue through in-depth face-to-face interviews with 84 terminally ill elders receiving hospice care. Interestingly, all 84 elders used at least one primary control strategy.  83 of them practiced one primary control strategy in combination with anther primary or compensatory secondary control strategy. Aspects of the dying process that they sought to control were these: Decision making, independence, mental attitude, instrumental activities of daily living, activities of daily living, and relationships

Although over half of the elders wanted more control, they felt their illnesses prevented them from having it. How frustrating might that be? What do these results say to caregivers of terminally ill elders? They say that these elders are just like everyone else in wanting to feel empowered. These results remind us of how important it is to be sensitive to control needs of terminally ill hospice patients. Even as they are dying, they still need opportunities to be proactive in their everyday living.

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

“Hospice and Nursing Homes Blog”

Homophobia in Nursing Homes, Long-Term Care, Assisted Living, and Home Care (LGBT Video 4:01 mins.)

Life can be horrendous living in a community where you are excluded and harassed. This is the experience of many elderly lesbian, gay, bisexual, or transgender (LGBT) people living in nursing homes, long-term care, assisted living, and even those receiving home care from healthcare workers. Consider how you would feel being dependent daily on bigoted caregivers who resent your presence. Imagine being isolated socially by fellow residents regularly or only being included because you hide a major part of your identity. Either way, damage to your emotional and physical health can be devastating.

The “Michigan Daily” reports that LGBT elderly increasingly have been “disrespected, shunned, or mistreated in ways that range from hurtful to deadly, even leading some to commit suicide.” Important solutions to this problem include a national drive to train long-term care providers in equitable and compassionate care, and a move for separate, but equal care.

Implementation of culture change in senior institutions requires sensitivity and commitment to the creation of person-centered environments that welcome LGBT residents. As this award-winning LGBT documentary titled  “Gen Silent” explains so well, no one should have to live in fear in order to survive. What kind of quality of life is that?

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Prison Inmate Hospice Volunteers: Iowa State Penitentiary

People are more than the worst things they ever did.

Each year, more than 3,000 men and women die in prisons. It is estimated that 20% of America’s prison population will be elderly by 2025. Many will eventually need quality end-of-life care. Some will ask, “So what? Did these prisoners treat their victims with dignity? Why be concerned about their death journeys?” One response is that people are more than the worst things they ever did. Another is that society should be held to a higher standard of treating prisoners better than they treated victims. At several prisons, inmate hospice volunteers are providing comfort to terminally ill inmates.

“Sail to Serenity” by Edgar Barens is the hospice prison program at the Iowa State Penitentiary. Some patients may no longer have attentive relationships beyond prison walls. Many serving life sentences, including some who are hospice volunteers, know they will die in confinement. Nurturing support given by familiar faces of those who have also experienced the prison system can enhance prisoners’ quality of life during the dying process. 

Frances Shani Parker, Author

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

Hospice and Nursing Homes Blog

Friendship, Marriage, Dementia: A Love Story (Video 4:41 mins.)

A great love story should be shared. This true story started 87 years ago, but its significance reigns eternal. George and Adriana Cuevas met as children with trillions of dreams and no certainties about their futures. Distance sat between them for 15 long years. But they continued as pen pals until love brought them back together like inseparable magnets. Marriage and children followed with lots of reasons for George and Adriana to cherish their mutual joy while stringing memories together. Then dementia came with many challenges. Some parts of love are too magnificent to explain, especially “When The Mind Says Goodbye.” 

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

“Hospice and Nursing Homes Blog”

Elderspeak in Nursing Homes: Sweetie, Can We Talk?

Elderspeak is a form of baby talk that most adults would not ordinarily use in conversations with other adults. As a hospice volunteer in nursing homes, I noticed elderspeak being used often with older residents, especially those who had dementia. For example, “Hi, Mr. Smith. I hope you’re enjoying your day? Did you have a good dinner?” might become a singsong version of, “Hey, Handsome. Are you behaving today? Did you eat all your dinner veggies like a good boy? You did? That’s my baby!” Imagine what an everyday adult would think about being addressed in this manner. But some nursing home staff members, caregivers, and others think nothing of speaking to residents in this manner. Unfortunately, stereotypes about the elderly often result in adults using elderspeak when speaking to seniors in general, regardless of the location.

Use of elderspeak implies that the resident is not competent enough to be spoken to on an adult level. Even when residents get used to being spoken to in elderspeak and seem not to mind, their self-esteem may be lowered. In addition, using elderspeak perpetuates stereotypes about the elderly and encourages ageism. Elderspeak research by the University of Kansas School of Nursing reports that elderspeak use by nursing home staff increased the probability of resistance to care in older adults with dementia. These residents responded frequently with screaming or yelling, negative comments, and crying. It is far more helpful to respectfully use adult speech with clarity, while keeping in mind the uniqueness of each individual.

Born and raised in the South, I was taught at an early age that all adults were entitled to the respect of being called by their formal names, such as "Miss Jones." Imagine my shock as a teenager the first time I was allowed to drive a car to pick up my grandmother from her job as a cook at a segregated white school. Young students of all ages were calling her "Lou." She allowed it because she needed the job. But the embarrassment in her eyes when she saw me witness this will never be forgotten. That night, my mother told me I couldn't pick up my grandmother from work anymore. For many older African Americans, being called by their first names or nicknames without their consent carries painful memories of historical racist condescension.

You can read researched elderspeak views of certified nursing assistants (CNAs) here.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at booksellers such as Amazon.

Hospice and Nursing Homes Blog

Hospice Team Meetings and Caregivers (Video 2:25 mins.)

Many traditional hospice team meetings do not include caregivers. Much discussion has been generated regarding whether this practice is beneficial or not. Research at the University of North Texas assessed hospice team meetings with and without the presence of caregivers. This was done by videotaping both kinds of meetings. An analysis comparing them had these results:

Team meetings with participating caregivers had

1) better team outcomes.

2) more patient-centered goals.

3) increased discussion of biopsychosocial problems.

4) interdisciplinary care plans occurring more often.

These research findings on hospice team meetings indicate that having caregivers present at hospice team meetings adds significant benefits that can positively impact patient care.

Family caregivers provide almost 80% of caregiving in America. This

video addresses concerns of caregivers with hospice patients.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

Hospice and Nursing Homes Blog

Mental Health Services in Nursing Homes after Disasters

Earthquakes like the recent one in Haiti and hurricanes like Katrina remind us of the devastating effects of environmental disasters. Living with the traumatic reality of being surrounded by many deaths, experiencing tremendous personal loss, and suffering physical injuries take a tremendous toll mentally on survivors. While physical needs receive more immediate attention, mental health intervention issues must also be addressed.

Research from the University of South Florida on mental health services in nursing homes after hurricanes provides helpful information about how residents should be treated after disasters. Representing two-thirds of Florida's counties, a questionnaire was administered to 258 directors of nursing, administrators, and owners of nursing homes. Residents stated their mental health needs and service use. In addition, focus group meetings with 22 nursing home administrators evaluated residents' use of services.

Results revealed that disaster-related mental health services were not routinely provided to residents. When residents involved in a disaster did receive treatment, it was more likely to come from facilities where they were taken after the disaster, not the facilities from which they were evacuated.

This mental health research indicates a serious need for training nursing home staff members in the delivery of disaster-related mental health intervention. They also need training in the procedures for making referrals for follow-up evaluation and formal intervention. Mental health training would be beneficial in healing many disaster survivors who suffer from depression, grief, and post-traumatic stress disorder.

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

“Hospice and Nursing Homes Blog”

Palliative and Hospice Care for Latinos

By the year 2050, Latinos, who currently make up 15 % of America’s population, will account for 30 % of the population.  Latinos are a diverse population with unique healthcare end-of-life needs that must be addressed if they are to receive quality care everyone deserves. Many have difficulty as immigrants adjusting in America to the dominant English language and Anglo-centric culture.

Non-Latino and non-Spanish-speaking healthcare workers must make every effort to communicate with Latinos and eliminate cultural misunderstandings that can negatively impact their healthcare. In terms of end-of-life care, the following challenges of immigrants must be addressed:

1) Geographic distance as well as political and economic realities which separate patients from their families

2) Undocumented immigrants who are frequently uninsured and fearful of deportation

3) Language and literacy barriers

4) Concerns about discrimination, culture, religion and spiritual influences

Professional interpreters can be helpful in alleviating barriers in communication. Ongoing staff development in working with diverse populations is also important. Everyone is entitled to quality palliative and hospice care when it is needed. You can read more here about palliative care for Latino patients and their families.

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

 “Hospice and Nursing Homes Blog”

Ten Steps to Becoming Dead Right

                    

                                     Ten Steps to Becoming Dead Right

                                        By Frances Shani Parker, Author

             Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

1. Accept death as part of life.

Death will come, no matter how often you avoid the topic or how forcefully technology wrestles it to the ground.

2. Listen to the universe.

Some call it the universe, while many use 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 you anticipate them.

4. Live a healthy lifestyle.

Practice habits of good health. Commit to including them in your daily living.

5. Be informed and proactive.

Keep abreast of what’s going on. When circumstances arise that can benefit from your knowledge, apply what you know.

6. Do your best.

You can’t solve every problem or be everything to everybody. Just do all 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.

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.

Copyright © Frances Shani Parker

Frances Shani Parker, Author

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

Hospice and Nursing Homes Blog