Mother's Day Tribute to Mother Who Died From Alzheimer’s Disease (Video 5:07)

This post is dedicated to mothers everywhere, especially those who are living with or who have died from a terminal illness. The accompanying video is by raindancer808 from New Orleans, Louisiana. She honored her mother before she died with this Mother’s Day tribute that her mother never saw. She wrote:

“My Mom is in end stage Alzheimer's, and I wanted to do something special for her on Mother's Day.”

Honoring a Nun Who Has Alzheimer's Dementia

You can also read my tribute to a nun who positively impacted my life as a child and later developed and died from Alzheimer’s disease here:

https://www.linkedin.com/pulse/honoring-nun-who-has-alzheimers-frances-shani-parker?trk=mp-reader-card

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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Asexual Older Adults (Research, Asexuality Video 8:01)

Clara Meadmore, an asexual older adult, was Britain’s oldest virgin at 105 years old. According to an article by Luke Salkeld in Mail Online, Clara credited not having sex as the secret of her longevity. Proud of her innate celibacy, she said she just wasn’t interested in all the “hassle” of having sex. Ironically, while many people wrongly stereotype older adults as being asexual simply because they are old, people like Clara intrinsically have never had any interest in sex or sexual attraction to others.

I became interested in learning more about asexuality in older adults after attending an informative Area Agency on Aging workshop about healthcare and other life issues of lesbian, gay, bisexual, and transgender (LGBT) older adults. As we discussed misunderstanding and intolerance regarding sexual orientation, one participant reminded us that asexuality is frequently excluded in these conversations. Later while researching this topic on my own, I discovered that asexuality, particularly regarding older adults, has only become scientifically researched as a sexual orientation in recent years.

Like many in the LGBT population, asexuals  have unique issues adjusting to a predominantly heterosexual and sex-oriented society. Some have the need to “come out of the closet” and explain their identity in order for others to understand them better. Others may feel ashamed, isolated, or confused because they are different from the standard society conveys as normal sexuality. They are a diverse community with people experiencing relationships in various ways. For example, some may have close relationships with sexual or asexual partners, although the asexual partners have no sexual attraction. Emotional and romantic attractions are not the same as sexual attraction.

I noticed that the media focus on asexuals emphasizes younger adults. In one asexual group forum I visited on the Internet, an older adult woman asked several times for help in finding other older asexual adults with whom she could communicate. Asexual older adults have more difficulty finding resources and supportive groups where they can share their concerns in an accepting environment. Fortunately, the Asexual Visibility and Education Network (AVEN) hosts the world's largest online asexual community and a large archive of resources on asexuality that can benefit anyone interested in this topic. The Asexual News is another helpful resource. You can read a more recent blog post of mine on asexuality here.

The following video titled Asexuality: The Making Of A Movement Trailer focuses on the emergence of the asexual community and the lives of several asexual people. The completed full-length film documentary directed by Angela Tucker premiered at the Frameline Film Festival in San Francisco's Roxie Theatre on June 18, 2011.

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.

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Rural vs. Urban End-of-Life Care (Nursing Home Research, Video 1:37)

Dying is universal, but what about differences and similarities in end-of-life (EOL) care? Most of my nursing home experiences with hospice care have been in an urban area. I was curious about this University of Rochester, NY research that compared rural and urban end-of-life care in nursing homes.

The purpose of this study by the University of Rochester, NY was to examine urban-rural differences in end-of-life quality of care provided to nursing home residents. A national sample of nursing homes was used. Three measured areas of focus were in-hospital death, hospice referral before death, and presence of severe pain.

Research results indicated there were urban-rural differences for in-hospital death and hospice quality measures, but not for pain. Compared with nursing homes located in urban areas, facilities in smaller towns and in isolated rural areas had significantly worse EOL quality for in-hospital death and hospice use. Differences were not statistically significant between facilities located in small towns and isolated rural areas. 

According to the report, this study provides “empirical evidence for urban-rural differences in EOL quality of care using a national sample of nursing homes.” This research data is important because it serves as a necessary first step toward improving EOL care for dying nursing home residents and for bridging the urban-rural gap.

This video titled End of Life: Burdensome Transitions from Brown University refers to another EOL study that addresses health care transitions such as moves from the nursing home to the hospital. These burdensome transitions can result in medical errors and lack of care coordination. For persons with advanced dementia, they can cause emotional distress and agitation. According to this study, such transitions are not consistent with goals of providing dying patients with comfort, and a fifth of them experience at least one during their last three months. African Americans and Hispanics were more likely than whites to experience these burdensome transitions.

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

Parkinson’s Disease: Children’s Views (Video 5:19)

Parkinson’s disease, a degenerative nervous system disorder, is common among older adults. Symptoms can include impaired shaking (tremors), walking, movement, and coordination. As with any disease, children are impacted by family members who have it. Having been an educator of students from ages three through eighteen for many years, I know that a quick way for them to believe incorrect information about important topics is to have adults not give them accurate age-appropriate answers to questions they may or may not ask. John Provo, a grandfather with Parkinson’s disease, is a man who addresses this concern.

He meets children’s informational needs about Parkinson’s disease by finding out what they want to know, helping them understand and cope with the disease, and by giving them concrete ways to help someone who has it. He invited children from all over the world to write to him about their experiences with parents and grandparents with the disease. He has created several videos specifically with children in mind. These are questions children often have about Parkinson’s disease:

What is Parkinson’s disease?

What causes it?

Is there a cure?

Is Parkinson’s disease hereditary or contagious?

What changes will occur with someone who has the disease?

Can someone die from Parkinson’s disease?

In this video Through the Eyes of a Child -Part 5.wmv, John Provo’s granddaughters speak about their Parkinson’s disease experience with him.

"Life is not always easy for you, or the people you love.  Be brave, be kind, be understanding".

                                          - John E. Provo

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

Chaplains Provide Spiritual Health (Hospice-Palliative Research, Music Video 2:12)

We often hear about end-of life care with emphasis on the roles of doctors and nurses. Spirituality of patients may be overshadowed sometimes by the more visible efforts of providing quality of life at physical levels. But hospice-palliative care chaplains also make positive differences in the healthcare status of many patients by providing a comforting presence during a critical phase in life.

Duke University research documenting the relationships between the receipt of less spiritual care than desired and patient outcomes was done with 150 patients with advanced cancer.  The vast majority of them (91%) indicated they had spiritual needs. Most desired and received spiritual care from their healthcare providers, religious community, and hospital chaplain. Unfortunately, a significant subset of patients didn’t receive the level of spiritual care they wanted. When this happened, patients were at risk of depression and reduced sense of spiritual meaning and peace. These unmet spiritual needs negatively impacted patients’ healthcare status.

A’Shellarian Anthony, chaplain at Delaware Hospice, provides weekly counsel and prayer with her patients. Part of a unique program there that includes specialists who sing, she also provides the healing powers of music:

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

Drive-Through Funerals, Bacon Coffins, Modern Death Rituals (Video 2:41)

Through the years, funeral rituals have grown to new heights with awe-inspiring audio and visual displays including themes that would make the deceased proud. With the existence of drive-through cemeteries with low, tilted monuments that glow in the dark for easy reading at night, it’s no surprise that drive-through funerals where you can “have it your way” followed.

Drive-through funeral homes with bulletproof glass provide the opportunity for mourners and the curious to drive or walk up from the street, view the deceased resting in peace, and sign the guestbook. When the deceased is displayed just right, a high compliment might be expressed such as “Look how she’s dressed. Bless her soul. That looks just like her.”

Funerals have evolved in many ways including having the deceased posed in action positions such as riding a motorcycle. Some golf lovers are being funeralized with decorations, services, and food centered around a golf theme. Coffins created to look like bacon (with bacon-scented air fresheners), animals, plants, and vehicles are only a few innovations reflecting creativtiy beyond the traditional.

Bacon lovers can experience the satisfaction of bacon-decorated coffins with bacon-scented air fresheners.

Some say that all these modern death ritual innovations trivialize death and take away from the spirituality of the service. Others say they customize people's feelings while including the spirit of those who have been unfastened from this life. One thing most people agree on is that relatives and friends who die will keep on being mourned and celebrated. This video shows mourners paying respects at a drive-through funeral.

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 + Dementia: Are Bereaved Families Satisfied? (Research, Alzheimer’s Video Poem 2:24)

Through the years, I have had many occasions to work with families of hospice patients who had dementia. For many relatives, experiencing a loved one’s mental decline is extremely difficult. Hospice workers can offer greatly needed support to families adjusting to these changes and in maintaining quality of life for patients.

When the death journey is over, how do bereaved families rate the hospice services their deceased loved ones who died from dementia received? Hospice-related dementia research examining the effectives of hospice services was done with 260 of 538 bereaved family member respondents from five states. The following hospice ratings from bereaved families were reported:

1) Fewer unmet needs and concerns with quality of care

2) Higher rating of the quality of care

3)    Better quality of dying than those without hospice services

This research from the perspectives of bereaved family members affirms satisfaction with hospice services for patients with dementia.

My own personal interactions as a hospice volunteer serving nursing home residents with dementia were quite inspiring. I can truthfully say that our time together was mutually beneficial. One thing I know for sure is that I became a better person. Titled Pieces of Our Minds, this original video poem conveys my thoughts about what it is like inside the minds of people with dementia.

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 EnhanceFitness Exercise Program (Research, Video 3:12)

Whenever I talk to older adults about exercising, I usually hear comments like these:

1)   I attend a weekly hustle class that energizes me.

2)   Twice a week, I walk in the mall where I feel safe.

3)   I keep busy babysitting my grandkids every day.

4)   Mostly, I keep active going places and doing things around the house like gardening.

It doesn’t take long to conclude that many older adults associate exercise mainly with simply moving around. Unless they participate in strength training and flexibility exercises in addition to aerobic conditioning, many who are able to perform all of these activities are not benefiting from a total fitness program. Sometimes I wonder what would happen to those who lack strength training if they fell and were stuck on the ground with a good heart rate, but little strength to get up.

I was especially pleased when I read this strength training research done by Wayne State University in Detroit, MI. The purpose was to determine the effects of 16 weeks of strength training on measures of functional ability in elderly who are functionally limited. Divided into an exercise and control group, the 87 participants (ages 65-93) were living independently, but with functional limitations. Three days a week over a 16-week period, exercising participants attended 13 different strength training exercises using Thera-Band resistive bands. They exercised in a group setting once a week and were given a home exercise book to follow for two additional sessions per week.

Results showed significant upper-body strength improvement for the exercisers’ strength as measured by bicep curls and lower-body strength as measured by chair sit-to-stand. The control group participants achieved minimal changes. Having good functional ability is inversely correlated with short-term morbidity and the need for assisted living in older adults. It’s important that this population becomes more educated and receives more opportunities for resistance training to maintain their independence.

EnhanceFitness is a well-rounded exercise program implemented nationally in many older adult communities. An award-wining program backed by over ten years of scientific research, EnhanceFitness participants work out three days a week with certified instructors. Funders of the program like the low costs, the sustainability, and especially the positive outcomes. 

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 Book Review Haunted by Death Monster

Don’t be afraid to read this. Death in American society is still a terminally ill taboo in great need of palliative-hospice care. Too many people avoid talking, hearing, writing, or even reading about the end of life. As an author and consultant on hospice and eldercare, I have been told on several occasions that the topic is just too depressing and final. If you’re a hospice worker, you may have noticed that people often think we’re a little strange because we choose to work with people who are dying.

This reluctance to deal with mortality visited a friendship of mine. I had given a casual friend a copy of my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes. Wanting to be sensitive  and not knowing her feelings about death, I decided not to talk to her about the book unless she brought it up. Eventually, she did. I’ll call her Alice. She approved my writing this post.

Because Alice works in the healthcare profession, I was somewhat surprised to discover that she feels strongly that death, a frightening stalker of her dreams, is her enemy. She shared that death has stolen too many of her loved ones, including pets. She helplessly dreads the thought of losing even more. My own acceptance of death, which comes across clearly in my conversations and writings, seems inappropriate to her. She finds my views too accepting of her enemy, too casual a regard for life. While she says she would consider hospice care along with other options in the future, she admits she could never be even an average hospice volunteer. It would be too painful.

What is her feedback regarding Becoming Dead Right? She loves the patients’ stories and my comments about interacting with various people in the nursing home world. The original poetry, which concludes each chapter and probably nudges her own poetic abilities, pleases her. She finds the discussions on hospice, nursing homes, caregiving, dementia, death, and bereavement informative. The explanations about intergenerational school-nursing home partnerships and the ideal nursing home described in the last chapter are particularly enjoyable. But she dislikes emphatically the premise that there is a “right” way to die.

I am not sure if her hostility toward death has changed much, but I hope that this book meeting with what she refers to as “the monster” has impacted her positively on some level. Those of us who embrace the topic of death will continue to be viewed with dismay by those who manage mortality through avoidance and resignation of themselves and loved ones as victims of death’s malicious powers.

Alice’s revelations reinforce the importance of promoting death as a natural part of life that should be experienced with dignity by everyone. I believe conversations and writings enhance lives of the naysayers one person at a time. These efforts empower them slowly with death acceptance even as they resist the message. I appreciate Alice’s frankness in sharing death’s distressful presence in her life and in giving feedback on my book. Most of all, I commend her willingness to become a ball of courage rolling into the high weeds where the death monster lives.

You can read book endorsements, excerpts, and more at my website.

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, 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. 

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