Patients in a Vegetative (Unresponsive Wakefulness) State: Nurse-Family Research, Video 5:43

Some people are uncomfortable referring to another human being as being in a vegetative state. That is probably why more doctors and neuroscientists prefer to call this state of consciousness an unresponsive wakefulness syndrome. A patient in this state experiences a disorder of consciousness in which severe brain damage is experienced.

About 50% of persons who are in this state one month after traumatic brain injury eventually recover consciousness. They are likely to have a slow course of recovery and usually have some ongoing cognitive and physical impairments and disabilities. In this state, the person is still unconscious, breathing, and able to feel pain.

Family and healthcare caregivers have important roles to play with these patients, especially when the patient is allowed to go home. In this research study on nurses, family caregivers and vegetative patients, 14 patients and caregivers participated. Data were gathered using face-to-face in-depth interviews at discharge time and during home care, helping families in providing care, and supporting them during care process.

Research concluded that nurses can play an effective role in improving the caregivers' well-being by considering the importance of training at discharge time and during home care, helping families in providing care, and support during the care process.

This video shares the story of Juan Torres, who was declared to be in a permanent unresponsive wakefulness syndrome state. What makes his story so special is that he surprised everyone one day and woke up. He even remembered what had happened while he was not awake.

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

Bullying, Loneliness, Mortality in Older Adult Senior Communities (Research, Bullying Link)

Solitude can be a good friend at any age for those who have learned to embrace its opportunities. Loneliness, on the other hand, is another story. While every age experiences some level of loneliness, older adults are often assumed to experience loneliness more as their peers die. People often imagine older adults living at home alone in a house where they have few visitors or other forms of engaging contact while life happens. They also may not make the connection that ongoing loneliness can negatively impact health, particularly in the form of depression, a risk factor for other serious healthcare issues.

Ironically, older adult housing communities are often viewed as solutions to the loneliness problems of those living alone at home. But aging in place at home can be a good thing when all the caregiving, social, security and enrichment pieces are in place. These same factors should also be in place in excellent housing communities. Sometimes they aren’t available in either location.

While few studies have examined the effects of loneliness and social isolation on older adult health, this study, which included a nationally representative sample of middle-aged and older adults with a follow-up period of up to 20 years, did. Results show that effects of loneliness and social isolation interact with each other: The higher the social isolation, the larger the effect of loneliness on mortality. The higher the loneliness, the larger the effect of social isolation.

Preventing social isolation in older adult communities includes important components involving mental, spiritual, and physical stimulation provided by various experiences such as exercise and other classes, entertainment, clubs, trips, games, movies, dining experiences, etc. This buffet of well-rounded choices from which residents decide how to live their daily lives should be grounded in an institutional culture supporting each resident’s right to be treated with equality and respect at all times.

I could not end this post without addressing bullying, an under-reported and too often unaddressed problem in many older adult communities. Bullying often plays a role in older adults isolating themselves to avoid contact with bullies who target them or others. Being excluded from seating in dining areas, movie theater rooms, etc., to which they are entitled on a first-come, first-served basis, as well as verbal, mental, and physical abuse are all forms of bullying. No one should have to age while being mistreated regularly by selfish neighbors who justify their actions that negatively impact victims' health. Studies indicate that one in five older adults are bullied. Senior communities must have ongoing assessment, implementation, monitoring, and staff inservice training supporting equality and respect in the culture of their communities. 

You can read my post on bullying, which includes detailed examples, solutions, and a brief video explaining some of the legal and legislative senior bullying issues here: 
https://hospiceandnursinghomes.blogspot.com/2018/07/bullying-in-older-adult-communities.html

Bullying in older adult senior communities continues to escalate. More information and solutions can be found at this AARP site: https://www.aarp.org/home-family/your-home/info-2018/bullying-senior-housing.html.

Frances Shani Parker
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

Dementia Doll Therapy and Caregivers (Research, Video 3:05)

“Does this baby have a heartbeat?”

I have served several years as a hospice volunteer in Detroit, MI nursing homes where I have interacted with many residents who had dementia. They often needed various stimuli to become engaged in approaches that were more likely to be successful with them from a person-centered perspective. Doll therapy was often successful. This excerpt from my book Becoming Dead Right is an example :

“What’s your baby’s name?” I asked while exploring the reality of a hospice resident who had dementia. Susan, who was the resident, and her doll stared at each other, grinning as if they knew secrets from ancient times. And maybe they did. She looked at me, pointed to her doll and said, “She’ll tell you her name when you come back with cookies.” (Very clever baby!)

Doll therapy research focused on reducing behavioral and psychological

symptoms of dementia has increased in clinical practice. The aim of the research discussed in this post was to measure the impact of doll therapy on people with severe dementia and the related distress and impact on everyday behavior of formal caregivers. Twenty-nine nursing home residents aged from 76 to 96 years old and who had severe dementia (Alzheimer's or vascular dementia), took part in the experiment. They were randomly assigned to an experimental group that used dolls or an active control group that used hand warmers with sensory characteristics equivalent to the dolls. Effects of doll therapy on caregivers’ everyday abilities such as eating behavior were also examined. 

This research concluded that only the doll therapy group showed a reduction in behavioral and psychological symptoms of dementia scores and related caregiver distress. Doll therapy did not benefit eating behavior of caregivers, however. 

As a hospice volunteer, I observed how easily many residents with dementia enjoyed their close relationships with dolls and stuffed or robotic animals. In this video, a caregiving daughter does doll therapy with her mother who is past middle stage dementia. I found this video particularly interesting because, unlike many residents I have observed, this mother seems to know her doll is not a real baby. But she still enjoys nurturing the doll. She also continues to question if the doll really isn't real. The daughter wonders if the doll therapy is truly appropriate for her mother. This video shares the mother’s response. (Do you remember playing with dolls as if they were real when you knew they weren’t? I do. )

If you liked the video above, you'll appreciate this one with a man enjoying his pet therapy cat: https://www.youtube.com/watch?v=JxSvkynCfH0

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

Ending Negative Older Adult Stereotypes (Video 4:08)

You can’t teach an old dog new tricks. Does this ageism stereotype sound familiar when people refer to themselves this way? We should all be very careful about the words we use regarding ourselves and others. Words can be very powerful, so powerful that we may not realize that saying them helps us form our own positive and negative opinions about ourselves, even when we are joking.

Many of the words we say, the thoughts we imagine, such as those related to negative aging stereotypes, often creep into our belief systems and become a part of who we are. This process is demonstrated with children as early as the age of three who have already started believing negative stereotypes about aging that they have learned through the media and other people, including older adults living in the age cage with stereotypes they have internalized about themselves. Of course, positive concepts about aging have the opposite effect by improving lives.

These are just a few examples of how our lives can be impacted by verbalizing these stereotypes on aging that affirm a prejudice against ourselves as we age.

Negative Stereotypes:

I’m having a senior moment.

You know I’m old and can’t remember anything.

You can’t teach an old dog new tricks.

Negative Consequences:

Memory can decrease, and we can become less interested in engaging in healthy preventive or new behaviors that we are capable of doing at our age.

Negative Stereotypes:

When you age, everything hurts, and what doesn't hurt doesn't work.

After a certain age, you can forget about having sex.

When you’re old, you need your false teeth and your hearing aid before you can ask where you left your glasses.

Negative Consequences:

Negative age stereotypes have significant negative effects on the physical well-being of older persons. Recovery from illness is impaired, reactions to stress are increased, and longevity is decreased.

Sure, it would be great if employers, politicians, healthcare workers, and everybody else in society treated older adults with more dignity and respect without stereotyping them negatively. Unfortunately, many of these people are simply embracing the same negative stereotypes that too many older adults perpetuate about themselves. Shouldn’t we all just affirm our own healthy aging by promoting positive images about ourselves? Shouldn’t we just live our best lives and not limit ourselves based on our age numbers?

Millennials are people who reached young adulthood around the year 2000. This video demonstrates how many of them have already internalized negative stereotypes about aging that may become self-fulfilling if they do not change. 

Children start believing stereotypes early. You can read research our school fourth graders did on older adult stereotypes here:
https://www.linkedin.com/pulse/intergenerational-service-learning-student-nursing-home-parker/

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

Widowed Fathers Coping (Research, Video 1:30)

Alexandra was diagnosed with a rare and aggressive form of breast cancer leading to a mastectomy, chemotherapy, radiation, and finally death, all within 16 months. At the time, she and Bertie were married with two children. Bertie, pictured above reading to his son and daughter, found himself thrust into a whole new parenting place joining the ranks of America’s estimated annual 20,000-30,000 widowed fathers raising dependent children. Maintaining jobs to provide for their families, many widowed fathers suppress their own needs while struggling in silence as everyday dads fostering well-being of their children.

Widowed fathers’ perspectives are important in determining positive end-of-life practices for families living with terminally ill loved ones. Their views help establish effective coping strategies after mothers have died leaving dependent children. This study, which focuses on those outcomes, included 344 men who identified themselves through an open-access educational website as widowed fathers. They all indicated that their spouses had died from cancer and that they were parenting dependent children. Participants completed surveys including their wives’ cancer history, end-of-life experiences, and their own depression and bereavement. Their views on how parental status may have influenced the end-of-life experiences of mothers with advanced cancer were emphasized. These were the results:

1) Fathers stated that 38% of mothers had not said goodbye to their children before death, and 26% were not at peace with dying.

2) Among participants, there were 90% reporting that their spouses were worried about the strain on their children at the end of life.

3) Fathers who reported clearer prognostic communication between their wives and physicians had lower depression and bereavement scores.

These data clarify the need for more family assistance related to terminal illness and death impacting widowed fathers and their children. Additional research and helpful resources such as books, videos, support groups, counseling, etc. can assist them further in untying knots of grief as they create their new normal.

1) The National Widowers Organization website provides a list of men’s support groups and other resources.

2) Single Fathers Due to Cancer is located at the University of North Carolina- Chapel Hill. Dr. Donald Rosenstein, director of the UNC Comprehensive Cancer Support Program, started the support group a few years ago with his team, including Dr. Justin Yopp. They meet monthly with child care provided by students. The following video titled “Support for Single Fathers Due to Cancer” features Bruce Ham, a widowed father who shares his story.

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

New Year’s Eve Party in Long-Term Care (Alzheimer's Dementia Poem)

As a hospice volunteer in Detroit, MI nursing homes for many years, I learned a lot from quietly listening, observing and analyzing residents. Many had dementia, and I valued their thought-provoking interpretations of reality and unique forms of expression. 

I wrote the poem "Mealtime Party" after participating in numerous mealtimes and parties with residents. This carefree poem includes combinations of actual scenarios that took place. What do I know for sure? I know I visited weekly an Oz I respected and became a better person. Join Lurania and her nursing home friends right now. Today she gives someone else her name and hosts an imaginary party for herself.

Mealtime Party

“Come to your party, Lurania! Have some tacos!

We’re singing in Spanish!” Lurania exclaims.

Her two-part conversations go back

and forth like a tennis match with one player.

Today Lurania gives someone else her name

and hosts an imaginary party for herself.

Next to Lurania sits sleeping Mary.

A purring snore drifts from her open mouth,

a canon too tired to fire. She searched

all morning for her slippers

until she found them on her feet.

Now she salsas in her dreams.

“10, 9, 8, 7, 6, 5...!” yells John, who thinks

Lurania's party is on New Year’s Eve.

He holds up his milk carton and shouts,

“Happy New Year!” John knows

the wish everyone wants to hear

as 12:00 noon begins a new year.

Grace still wears the glow of a woman

who’s been in love. Her so-called boyfriend,

a nurse aide sixty years her junior,

blushed when told of her romantic fantasy.

Even though she “dumped” him,

their friendship will be a lasting flower.

“You know, Olga has been my sister

all my life,” Miller announces. I remind him

that yesterday Olga brought him

a chocolate chip cookie. Miller flaunts

a grin, satisfied that the streetcar

of his life looks great, rides just fine.

“Everybody can come! Lurania's parties

are wonderful!” Lurania hollers, intoxicated

with laughter resonating like a trumpet.

Everyone should come and marvel

at the magnificence of minds that dance,

turn somersaults to create happy realities.

© Frances Shani Parker (poem excerpt from her book 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 and e-book editions in America and other countries at online and offline booksellers. Visit Hospice and Nursing Homes Blog and Frances Shani Parker's Website.