Hospice Volunteer Magic

I have been a hospice volunteer 20 years, many in service as a bedside volunteer in Detroit, MI nursing homes. I often view those experiences as magical because there were always mind-blowing surprises that I had not anticipated. For example, Jim, who had dementia, thought I was his deceased wife and gave me opportunities to share stories I made up about our old-school dates when we were young and in love. There were unexplained victories that revealed hidden sides of myself when my solutions finally unraveled mysteries. Sometimes I even enjoyed fascinating fun that seemed to come from nowhere on earth when patients explained their supernatural visits to a spirit world with family and friends.

One illusion of hospice volunteer magic is the common belief among many who are not hospice volunteers that this form of service must be depressing, even insisting that is the reality. Do they really think I would go somewhere weekly to embrace gloom? They don’t understand the magic beyond the curtain of appearances. They don’t know that I disappeared to a place of enchantment they cannot see, a place where I became a better person and a gratified magician after I picked the lucky hospice volunteer card.

Consider taking a chance on the magic of hospice volunteering. You might even discover that this service chooses you. Congratulations, if you have already made the commitment and want to continue your lucky streak. I recommend the following 10 charmed maneuvers for making more hospice volunteer magic:

Hospice Volunteer Magic in 10 Steps
By Frances Shani Parker

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

You can read about my personal journey in becoming a hospice volunteer without even 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

Teaching Children About Death

What do we teach our children about death? Unfortunately, too many children are encouraged to believe that cemeteries, corpses, and spirits are sources of gloom and terror. While some may say this is all done in fun, the reality is that many people never stop attaching fear to certain practices, images, and places connected with death. These learned experiences have become entrenched in their thoughts and are considered normal, even though they are totally unnatural to the death experience itself. When children have nothing positive to balance with these fears, it is no wonder that many adults never stop fearing and avoiding even the topic of death in conversations.

A former school principal, I noticed that children began associating death with fear at early ages. They often arrive at erroneous conclusions about death experiences, especially when no one has taken the time to counsel them personally. I have heard children say the deceased person is sleeping, as if death is temporary or that the sleep process can go on forever. Believing this can also cause sleep problems. I have heard them struggle with anguish, believing the deceased left them because they stopped caring about them or as a result of their wrongdoing. These children needed comforting closure that they could not garner on their own.

When a loved one dies, too often adults become focused on their own grief and after-death preparations that can consume much of their time and energy. In-depth discussions with children about what has happened may not occur. This leaves children in a very vulnerable situation of having to move through their own pain with little guidance. They may be overwhelmed with anger, guilt, sadness, and even relief, depending on their relationship with the deceased and how the deceased died. Their outward behavior may not be any indication of their inner turmoil. Even when they appear to be handling their grief well, it’s still important for adults to initiate discussions with them about their feelings, reassuring them that they are supported and loved, that their thoughts and comments are respected.

Children should be taught positive information regarding death, so they will have healthy perspectives about the life and death process. When appropriate for them, they should be present at death rituals to have their grief addressed. They can experience growth opportunities through their voluntary participation at wakes, funerals, and memorial services. These are occasions for children to bond with family members and friends in celebration of a loved one’s life. This helps children learn the meaning of community, the concept of village members taking care of one another, and beliefs about an afterlife. 

When a family grieves after the death, children can also play an important role in their mutual healing. They can help with the preparations and sending of thank-you notes to those who sent condolences and flowers. They can be involved in a general way with helping to bring physical closure regarding items the deceased left behind. Children’s input can be included in any revisions of holiday rituals that may recognize the deceased. Keeping stories alive about those who have died is another way children can continue family legacies. Through the years, children can be guided in understanding the importance of living a life that culminates in death. Maybe then they will grow up to become adults who welcome discussions about this special event that everyone will eventually experience.

Frances Shani Parker, AuthorBecoming 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

Terminal Illness: Patients’ Attitudes, Views (Research, Video 2:39)

Some days, feelings of despair try to take over. Other days, simple joys in life seem bigger than ever imagined. Most people experience varied moods from time to time. However, with so much focus being placed on treatment, terminally ill patients may need to focus more on maintaining positive outlooks. A lot depends on how they view themselves and their condition. Attitude really is everything.

What are some palliative care patients’ views on coping with mood swings?
A study of terminally ill advanced cancer patients revealed the following regarding their attitudes and helpful coping strategies, life narratives, and spirituality:

1) Resources were found in meaningful contacts with others.

2) Personal attention of professional medical caregivers for their well-being was also appreciated.

Kathleen was a terminally ill nurse who was told she had only six months to live. Her life advice to others who are terminally ill is embodied in her actions after her diagnosis. When the cancer storm came, she made positive adjustments. She shared her heartfelt sentiments in this video that teaches about living, making good choices, and being remembered.

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

Elder Abuser Profiles (Research, Financial Abuse Video 2:13)

Who are the perpetrators of the vulnerable elderly population? Do similar profiles and risk factors motivate elder abusers to mistreat others? Research suggests their profiles and risk factors differ among them. They can be categorized for successful intervention approaches. One way is through analysis of their behavior profiles.

This data comes from the Older Adult Mistreatment Assessment administered to victims by Adult Protective Service (APS) in Illinois. Abusers were categorized using victim and caseworker reports on abusers' harmful and supportive behaviors and characteristics. Results indicate that abusers fall into the following profiles:

 1) Caregiver (lowest in harmful characteristics and highest in providing emotional and instrumental support to victims)

2) Temperamental

3) Dependent Caregiver

4) Dangerous (have the highest levels of aggression, financial dependency, substance abuse, and irresponsibility) 

This is the first quantitative study to identify and characterize abuser subtypes. These profiles differ significantly in average age and gender of the abuser, the relationship to victims, and types of mistreatment committed.

Adult Protective Services (APS) is a social services program provided by state and /or local governments nationwide serving older adults and adults with disabilities who are in need of assistance. They can offer assistance in cases of elder abuse. State adult protective services program numbers in your area are available at this website: http://www.napsa-now.org/get-help/help-in-your-area

Dr. Peter Lichtenberg, Director of the Institute of Gerontology at Wayne State University in Detroit, MI is a national expert on financial elder abuse.You can read about him, the Lichtenberg Financial Decision-Making Screening and Rating Scales, his community engagement component SAFE, Success After Financial Exploitation, and more here: https://iog.wayne.edu/research/financial-decision-making

The following video from the WKRG News 5 Scambuster Report is one example of how financial abuse by an elder abuser can take place.

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

Die Laughing: Hospice Balloon Humor

Contrary to what some people think, many terminally ill patients continue to maintain a comic state of mind and often initiate and enjoy participating in humorous activities. Sometimes the humor is unintentional, but the energy is just as exciting. That has definitely been my experience as a hospice volunteer.

I’m a balloon lover. My favorites are Mylar foil balloons with special shapes, themes, and messages. Many of my patients with dementia enjoy balloons as much as I do. Funny scenarios have often resulted after I brought them balloons. This true story came about after I offered to get a seasonal spring balloon in a flowered shape for Miss Robinson, a patient with Alzheimer's disease, the most common form of dementia. But she decided she preferred a green balloon instead. This heart-warming balloon adventure followed.

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

Miss Robinson was very emphatic about choosing a green balloon. She couldn’t explain why the color green meant so much to her, except to say it was her favorite color. The party-supply store had many flowered balloons, but green ones were scarce. After a lengthy search with my help, the salesperson found one green balloon in the entire store. Later that week, I brought the balloon to Miss Robinson, tied it to her wheelchair, and took her for an indoor ride around the nursing home to show it off.

“Look, everybody! Look at my red balloon! Did you ever see a red balloon this pretty? It’s my red spring balloon! Hey, everybody, look at me! I’ve got my own red balloon!” she exclaimed.

A few days later, I visited Miss Robinson. Her balloon hovered over her bed like a shiny green pit bull on guard. She could enjoy watching it bobbing around doing its doggie dance and even talk to it if she felt lonely.

“Hi, Miss Robinson, it’s me, the hat lady.

“Sure, I remember you. You’re the hat lady who brought me my purple flag. See, it’s still waving in the air. I just love my purple flag!”

I smiled, thinking of the evolving green balloon that had developed a life of its own. In fewer than two weeks, it had evolved at three different levels with hidden powers I had not known. It was enough to have gone from a green to red balloon. Now, it had become a purple flag. I couldn’t wait to visit Miss Robinson again before the balloon deflated completely. I looked forward to hearing more about her happy adventure with the green balloon and its miraculous makeovers. 

© 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