Dying: Being in Control (Research, Hospice Story)

Are you ready to die? Because I have been a hospice volunteer many years, people sometimes assume that my patients and I talk about death a lot. We don't. But death-related discussions are important parts of advanced care planning and palliative care. Some people also assume my volunteer visits must be depressing because no one really wants to die. Wrong again. Some of my patients have stated they looked forward to death and gave reasons that had nothing to do with depression.

People have complex attitudes about death, dying, and ethical considerations. A Massive Open Online Course (MOOC) titled “Dying2Learn” provided an opportunity for researchers to explore societal and personal attitudes about wishes and beliefs regarding death and dying. Among research results highlighted were desires of patients to exercise choice and control in relation to dying. Some individuals wanted control while preferring not to know that they were dying. Others wanted to know as much as possible and still be more in control. Even after legal matters related to death were in order, some patients had concerns that others might not consider important, but the element of control still mattered.

All this talk about control reminds me of my hospice patient named Rose. Are you ready to die? Rose was. This is what she said to me about her upcoming death that clearly indicated her need for control:

She began by asking me, “How old did you tell me I was?”

I responded, “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 because she felt she was in control.

(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 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.

How to Be a Great Hospice Volunteer

How to Be a Great Hospice Volunteer 

By Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

1)   Remember why you serve.

There’s a reason you feel compelled to enhance lives of the terminally ill. Cherish that inspiration. Move forward committed to an amazing and rewarding healthcare adventure.

2)   Believe it’s all win-win.

Providing end-of-life service is a privilege, not a calling to be a savior. You and those you support come together in relationships of mutual healing and growth. Honor your win-win journey.

3)   Be present.

By all means, show up. But be present with patients after you arrive. Evaluate appearances, behaviors, surroundings, and interactions with others. Listen with your heart. Even silence speaks. Really try to understand living from their perspectives. Focus on advocacy for improving their quality of life.

4)   Try other doors.

Patients will have challenges such as dementia that may not respond to your usual front-door communication. Try other doors and even windows. Obstacles are enrichment opportunities in your partnerships with patients. Touch, music, pictures, stories, and fantasies are a few entry points. Let patients help you navigate your way into their world.

5)   Know your piece in the puzzle.

Adherence to rules of protocol and professional ethics should be routine. Be aware of boundaries such as confidentiality regarding yourself, your patients, and their loved ones. Follow guidelines of your hospice organization, and seek help when needed.

6)   Untie your knots.

There may be times of doubt, confusion, sadness, and guilt. These are normal knots of the caregiving process. Untie them by seeking support for your total well-being. Maintain proper rest, nutrition, exercise, and balance in your life. Do your best. Don’t be surprised when you discover reasons to kiss yourself.

7)   Spread the word.

Be knowledgeable about hospice and palliative care. Share information so others can benefit from these specialized areas of healthcare. Encourage involvement in hospice and palliative care career and service activities.

8)   Pick up a turtle.

If you see a turtle sitting on a fence post, you know somebody helped to put it there. Be on the lookout for turtles aiming for fence posts. Be a role model for other volunteers. Participate in organizations, conferences, workshops, and discussion groups where you can share best practices while learning new ideas.

   

9)   Write death sentences.

Death will come no matter how often you avoid it or wrestle it to the ground. Have your advance directives, finances, and property in legal order. Urge others to do the same. Don’t burden loved ones later with important decisions you can record now. As you unfasten yourself from this life, be satisfied knowing your death sentences will be carried out according to your wishes.

  

10)  Expect rainbow smiles.

Rainbow smiles hug you so tightly you can feel ribs of joy press against your essence. Hospice volunteering provides ongoing moments for you to positively impact lives. When you make those connections happen, rainbow smiles will come.

© Frances Shani 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

Ten Steps to Being a Great Hospice Volunteer

Ten Steps to Being a Great Hospice Volunteer

By Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

1)   Remember why you serve.

There’s a reason you feel compelled to enhance lives of the terminally ill. Cherish that inspiration. Move forward committed to an amazing and rewarding healthcare adventure.

2)   Believe it’s all win-win.

Providing end-of-life service is a privilege, not a calling to be a savior. You and those you support come together in relationships of mutual healing and growth. Honor your win-win journey.

3)   Be present.

By all means, show up. But be present with patients after you arrive. Evaluate appearances, behaviors, surroundings, and interactions with others. Listen with your heart. Even silence speaks. Really try to understand living from their perspectives. Focus on advocacy for improving their quality of life.

4)   Try other doors.

Patients will have challenges such as dementia that may not respond to your usual front-door communication. Try other doors and even windows. Obstacles are enrichment opportunities in your partnerships with patients. Touch, music, pictures, stories, and fantasies are a few entry points. Let patients help you navigate your way into their world.

5)   Know your piece in the puzzle.

 

Adherence to rules of protocol and professional ethics should be routine. Be aware of boundaries such as confidentiality regarding yourself, your patients, and their loved ones. Follow guidelines of your hospice organization, and seek help when needed.

6)   Untie your knots.

There may be times of doubt, confusion, sadness, and guilt. These are normal knots of the caregiving process. Untie them by seeking support for your total well-being. Maintain proper rest, nutrition, exercise, and balance in your life. Do your best. Don’t be surprised when you discover reasons to kiss yourself.

7)   Spread the word.

Be knowledgeable about hospice and palliative care. Share information so others can benefit from these specialized areas of healthcare. Encourage involvement in hospice and palliative care career and service activities.

8)   Pick up a turtle.

 

If you see a turtle sitting on a fence post, you know somebody helped to put it there. Be on the lookout for turtles aiming for fence posts. Be a role model for other volunteers. Participate in organizations, conferences, workshops, and discussion groups where you can share best practices while learning new ideas.

   

       9)   Write death sentences.

Death will come no matter how often you avoid it or wrestle it to the ground. Have your advance directives, finances, and property in legal order. Urge others to do the same. Don’t burden loved ones later with important decisions you can record now. As you unfasten yourself from this life, be satisfied knowing your death sentences will be carried out according to your wishes.

  

    10)  Expect rainbow smiles.

 

Rainbow smiles hug you so tightly you can feel ribs of joy press against your essence. Hospice volunteering provides ongoing experiences for you to positively impact lives. When you do, rainbow smiles will come.

© Frances Shani Parker

You can read about my personal journey in becoming a hospice volunteer without realizing I was one here: https://www.linkedin.com/pulse/hospice-volunteer-me-frances-shani-parker?trk=mp-author-card

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

Approaching Death: Dying Symptoms, Caregiver Support (Video 5:31)

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. I have been asked on several occasions to explain some of the circumstances that may be present when death is near. This excerpt from my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes addresses that:

“Among symptoms of impending death, there might be decreases in food intake, swallowing, communication; and increases in sleep, weakness and spiritual awareness. The latter might include speaking to or appearing to look at, or dreaming about persons who have already died. Patients may become incontinent, agitated, confused, withdrawn, and congested. Bright light in patients’ eyes should be avoided. Patients should be turned gently when necessary. Hospice care should provide every reasonable effort to control pain and stabilize patients to a plateau of comfort. The hospice nurse or doctor can explain any changes that cause concern during the dying process.

Some caregivers become upset when dying patients lose their appetites. Because they view food as nurturing, they want to keep giving patients more food than they need. It is important to keep in mind that dying patients with little or no appetite are not starving or in pain from hunger in the manner that is commonly understood. They are responding normally to the body’s breaking down as part of the dying process. Swallowing may be difficult for them and could lead to choking when food is forced into their mouths. They could also become nauseous and vomit from being forced to take in food they do not want. Dying patients may also want less to drink. The insides of their mouths can be moistened with droplets or a fine spray, and a lip cream can be used, especially if they are breathing through their mouths. It is not unusual for breathing of dying patients to fluctuate from quiet to noisy or to have an irregular rhythm."

As much as possible, caregivers should remain calm and give patients reassuring presence. This video titled “Palliative Curriculum - Part 6 - Last Hours of Living” presents a scenario about a daughter’s concerns during her mother’s final days.

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

Reluctant End-of-Life Caregivers: Would You Do It Again? (Research, Video 3:10)

Most people don’t set out to become caregivers. Some enjoy nurturing loved ones and find the caregiving experience challenging, but rewarding. Few people talk about caregivers who feel depressed, guilty, trapped in a hole with no way out except the death of persons in their care. Maybe they were the only sibling living near the parent, the only relative or friend with resources to provide care, or the only person willing to step up when others refused. Whatever their reasons, they became caregivers reluctantly, never fully embracing the responsibility, and made the most of the situation. If they had a choice, would they do it again? Some say they would not.

In a study reported in the “Journal of Pain and Symptom Management,” factors associated with an unwillingness to become caregivers again were reviewed. Former caregivers of palliative care patients were interviewed. Comparisons between those who would do caregiving again and those who would not were made with these results:

1)   One in 13 (7.4%) former caregivers indicated that they would not provide such care again.

2)   One in six (16.5%) would only "probably care again."

3)   Increasing age and lower levels of education controlling for spousal relationship lessen the willingness to care again.

4)   Despite most active caregivers being willing to provide care again, a

proportion would not.

This Visiting Nurse Service of New York video titled “How to Relieve Stress When Caring for an Aging Parent or Spouse” presents ways to cope with caregiver stress.

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-Palliative Care Diversity Outreach: Asian Culture (Chinese American Video 1:32)

Meeting the cultural needs and preferences (ethnic and religious beliefs, values, and practices) of hospice-palliative care patients is an important part of quality health care. People view the world through their cultures and values. To ignore this fact and impose one’s own culture and values on others caters to miscommunication and alienation. With respect and sensitivity, bridges can be built that help people connect at human levels, regardless of their differences. The availability of more language interpreters at healthcare institutions can facilitate this communication and bonding. Ongoing education on the culture and traditions of various populations, along with the understanding that varied beliefs exist within each group, must be increased throughout the healthcare system to improve service to diverse groups.

Many Asians prefer family caregiving of their aging, terminally ill relatives. In addition to being reluctant to place their elders in nursing homes for hospice care, they may also be reluctant to discuss specifics about illnesses with those in their care to keep them hopeful and without worry. Some Asian cultures consider direct eye contact, particularly with someone considered a superior to be inappropriate. Healthcare providers should gather more knowledge of Asian culture, including input from Asians, in order to promote benefits of hospice and palliative care.

In the following video, Nellie Kwan, a hospice clinical supervisor who works for Self-Help Hospice in San Francisco, describes cultural concerns regarding end-of-life care and Chinese Americans. According to her, most Chinese Americans do not understand hospice at all. This video is part of the Hospice Foundation of America “HFA Cares” series:

Frances Shani Parker, Author

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

“Hospice and Nursing Homes Blog”

Palliative Care Professionals Change Through Shared Stories (Research, Hospice Video 2:16)

Never underestimate secondhand life experiences. I know how someone else’s story can grab me by the collar, drag me into a clear day on a stormy night. When writing for others, I have wandered through high weeds of words, while seeking a path of truth behind the noise of my thoughts. True stories sometimes come drenched in life-changing powers. I wish more people would tell and listen to stories the way children do with wide-eyed openness for learning. That’s why I am pleased to report this research about palliative care professionals telling true stories about their work.

Reported in the “Journal of Interprofessional Care,” this research consisted of a series of six interprofessional palliative care meetings held in facilitated small groups. The 28 participants, which included doctors, nurses, social workers, and emergency care practitioners shared stories about their professional experiences. Evaluations of the meetings were done via telephone interviews with 19 of the participants reporting. Findings resulting from their shared discussions included this statement:

“Five months after the end of the course, many participants described changed professional behavior which they believed led to improved patient outcomes.”

Now, that was some great storytelling!

Frances Shani Parker, Author

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

“Hospice and Nursing Homes Blog”

Oncology Nurses, Cancer, and Palliative Care (Research, Video 1:39)

In an earlier post, I mentioned the confusion many people have regarding what palliative care is. One problem is the close association they make between palliative care and hospice care. Those with misinformation include some who work in the healthcare field.

Oncology nurses provide and supervise care for cancer patients who are chronically or critically ill. The “Oncology Nursing Forum” presents results from a study at George Mason University. Researchers examined how some oncology nurses define palliative care, their views about who should and should not receive palliative care, and their beliefs about palliative care decision-making. These nurses’ beliefs include who should be involved in making palliative care decisions and how decisions should be managed. Interviewed were twelve nurses representing different aspects of oncology nursing.

Findings indicate that most of the oncology nurses interviewed focused on symptom management and made no distinction between hospice and palliative care. Palliative care was viewed as care only for patients near the end of life. Nurses perceived their own involvement in decision-making regarding palliative care as limited and indirect. These perceptions cause concern because they could limit palliative care that is appropriate for cancer patients who may not be eligible for hospice care.

While this study involved a small group of oncology nurses, it reinforces the need for more education and clinical experience so palliative care can be used to benefit more patients. Dr. Diane Meier, Director of the Center to Advance Palliative Care, defines palliative care in this video titled “What is Palliative Care?”

Frances Shani Parker, Author

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

“Hospice and Nursing Homes Blog”

Hospice Volunteers Share Experiences (Hospice Poem, Video 3:25)

Each hospice volunteer has a unique story to tell.  This is my story poem about my hospice volunteer experiences in Detroit nursing homes:

Reflections of a Hospice Volunteer

By Frances Shani Parker 

I leave my car and walk into a world with many fates.

The people live reality where three words dominate:

“Nostalgia” brings memories that make them question why.

“Delusions” create fantasies that often come alive.

“Anticipation” beckons the beginning of each day.

A visit, party, special news, what is on the way?

Sedonia tells me stories of how life used to be.

Many things seem different now. She’s almost ninety-three.

Moochie shields unseen friends he pledges to protect.

I wonder if he sees and hears the friends he manifests.

Dexter smiles and says with pride while waiting for his son,

“All my children visit me, and each is Number One.”

Pearl yells, “I want some cake, and bring it just for me!”

She thinks that I’m employed here. She sees me every week.

An empty bed reminds me that someone else has gone.

Next week I’ll see someone new. Life’s cycle will go on.

Juan trails me through each room while planning his escape.

“I have somewhere to go,” he pleads. I stop him at the gate.

I leave this special world today with wisdom strong and rare,

Respecting every circumstance that brought each person there.

Our futures are unknown to us like roads with endless curves.

I drive away feeling good, happy that I served.

© 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

Palliative Care or Supportive Care? Which Would You Prefer? (Research, Video 3:04)

Would a rose by any other name smell as sweet?

I have met quite a few people who don’t have a clue as to what palliative care is. Some are even in the healthcare profession. To add to the confusion, many who do know what it is refer to palliative care using various pronunciations (sound pronunciation). Then there are those healthcare organizations such as the American cancer centers that have adopted use of the name palliative care but continue to get referrals late for those needing it. Is this due to an association of the name palliative care with hospice care?  Would all these problems regarding the name palliative care be resolved by just replacing the name with a more user friendly one such as supportive care?

Obviously, the name palliative care carries several barriers that need to be explored. That’s why this research caught my interest. This study by the Anderson Cancer Center in Houston, Texas reports how the name palliative care versus the name supportive care may impact cancer patient referrals.

Can a name be a barrier to patient referrals for care? Medical oncologists and their midlevel providers (advance practice nurses and physician assistants) at a comprehensive cancer center think so. 140 out of 200 of them participated in a survey to determine the impact of the name palliative care compared with the name supportive care on patient referrals and to determine whether there was an association between demographic factors and the perceptions of the two names. What were the results?

1)    The name palliative care compared with the name supportive care was perceived more frequently by medical oncologists and midlevel providers as a barrier to referrals, decreasing hope, and causing distress in patients and families.

2)    Participants significantly preferred the name supportive care compared with palliative care. They also stated more likelihood to refer patients on active primary and advanced cancer treatments to a service named supportive care.

While these results are not surprising, where does this leave the name palliative care? Is this a matter of educating the public more to the meaning and appreciation of what palliative care can provide? Or is this a matter of phasing out usage of the term palliative care with patients and replacing it with the name supportive care? What do you think?

This video explains palliative care: “Palliative Care: What is it and who is it for?”

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”

Hospice Volunteer Book Review: Meeting the Death Monster in Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

In America, death is still a terminally ill taboo in great need of palliative-hospice care. Too many people avoid talking, hearing, writing, or 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” or too “final.” Several months ago, this reluctance to deal with death visited a friendship. I had given a casual friend a copy of my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes. Not knowing her feelings about death, I decided not to talk to her about the book unless she brought it up. Recently, she did. I’ll call her Alice.

Alice works in the healthcare profession, so 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, she admits she could never be even an average hospice volunteer.

What is her feedback regarding my book? 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 caregiving, dementia, death rituals, and bereavement informative. The explanations about school-nursing home partnerships and the ideal nursing home described in the chapter “Baby Boomer Haven” 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 deal with 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. One person at a time, I believe conversations and writings enhance lives of the naysayers by slowly empowering them with death acceptance, even as they resist the message. I appreciate Alice’s frankness in sharing death’s painful 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 here at my website.

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

Homeless People: Advance Directives and Hospice-Palliative Care (Video 1:26 mins.)

When you see homeless people, you might wonder how they came to that condition, why some refuse to leave the streets, if they really care about their health. What about their end-of-life preparations? They probably aren't concerned about completing Advance Directives. Right? Wrong.

There are few studies on the homeless and their preparation for end-of-life care. However, a study by the Center for Bioethics at the University of Minnesota has some convincing results that homeless people do care about completing Advance Directives. The research involved fifty-nine homeless people recruited from drop-in centers. Half were given written instructions to complete Advance Directives in a self-guided manner. Others were given the same directions with guidance in completing them.

The overall completion rate was 44%. A higher completion rate of 59% was earned by those who received guidance in completing the forms. The rate of completion for the self-guided group was 30%. Among all participants who completed their Advance Directive forms, there was a significant decrease in the frequency of worry about death from 50% to 12.5%. Those who filled out the Advance Directive forms increased their plans to write down their end-of-life wishes (56% to 100%) and plans to discuss their related wishes with someone (63% to 94%).

This research concludes that homeless people can appreciate being afforded the opportunity to complete Advance Directives. Although some will complete the forms without help, when time is taken to assist them, they can be especially successful in participating in their end-of-life preparations.

You can read more here about this research from the “Journal of General Internal Medicine.”

This video describes St. Michael’s Nazareth House, where hospice and palliative care are provided for terminally and seriously ill homeless patients.

Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
“Hospice and Nursing Homes Blog”

Sexuality, Hospice-Palliative Care and Senior Citizens (Video: 3:56 mins.)

Like death, sex is another American taboo that many people avoid discussing, particularly when it relates to senior citizens. Including palliative or hospice care in the discussion can be even more difficult. Inaccurate stereotypes often surface during sexuality conversations. Why is an old man interested in sex called a “dirty old man,” but an interested young man isn’t? Why do people think the elderly outgrow all their sexual desires? Sex doesn’t belong to youth, and safe sex practices belong to all ages.

Living with terminal illness can be traumatic to patients’ sexual well-being. Communication is critical for making good sexual adjustments during this vulnerable time. Professional help can often make this transition easier. According to the American Journal of Hospice and Palliative Care, there is a place for sexuality, depending on patients’ conditions, during a terminal illness. Health professionals should acknowledge and support patients’ desires to function sexually within their abilities. In fact, health professionals should initiate this discussion.

Seniors who are not terminally ill should also have their sexuality recognized and accepted. Dr. Myrtle Wilhite, medical director of A Woman’s Touch Sexuality Resources, does this by teaching a sexuality class for seniors. She says she teaches them the same things she teaches nurses. Whether it’s technique, anatomy, and everything else in between, she makes sure they leave with all the information she can give them to enjoy their sexuality, including tips on what to do when sex doesn’t work out right.

As one senior stated, “I still enjoy hearing about sex and all that.” Now, if we can just get more seniors and others to say, “I enjoy hearing about death and all that.” Hopefully, millions of baby boomers will make that statement a common one in the near future.

This video gives a classroom view of the senior sexuality class.

Frances Shani Parker, Author

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

Hospice and Nursing Homes Blog

Hospice and Palliative Care: Veterans and Post-Traumatic Stress Disorder – PTSD (Video 7:41 mins.)

The following conversation is from my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes. I am talking with Nat, my hospice patient who is a veteran of the Viet Nam war. We had many conversations about his life during my weekly visits with him. His story is typical of many veterans who suffer with post-traumatic stress disorder:

“Did you see my flag on the side of the bed?” Nat asked me one day.

I looked again at his small American flag taped to the bed railing and responded, “Yes, I noticed it the first day I came. It’s always there on your bed. I can tell you like it.”

“I fought in a war years ago. Gave the best I could give. I’ve seen and done things you couldn’t imagine. Some of them were horrible, I mean really horrible. Don’t ask me to tell you what they were, because I can’t talk about it. They say time heals all wounds, but it’s a lie. I left Viet Nam, but Viet Nam never left me. I carry it with me everywhere I go. All these years later, I still have nightmares like you wouldn’t believe. The doctor says it’s post-traumatic stress disorder or PTSD. I wake up shaking, gasping for breath with tears in my eyes. In my dreams, I’m always running hard, trying to escape. Sometimes my enemies are close enough for me to touch. I almost stop breathing to keep them from hearing me. I’m constantly thinking I’m not going to make it. Some nights they kill me before I wake up. My dreams are so raw, so real they turn my soul inside out. In real life, I came back alive. A lot of people who served, some of them my friends, didn’t come back. That’s why I keep that flag there all the time. It’s out of respect for those who came back in body bags; it’s for those still struggling with physical and mental injuries. It’s the least I can do for them.”

Nat is like many men and women who have served our country during World War II and wars in Korea, Viet Nam, and Iraq. He suffers with repressed fear and sadness resulting from his war experiences. Hospice and palliative care for veterans, like the Hospice of the Western Reserve in Cleveland, Ohio, includes healing opportunities for patients to express feelings they have stored inside for years. Veterans and their families receive post-traumatic stress disorder education and support. Patients are often paired with volunteers who are also veterans. Being able to “let go” of the horrific burdens of PTSD is important at any time, but especially for closure during the final phases of life.

In this video titled “Welcome Home,” veterans share some of their agonizing service memories, including burial at sea.

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