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Showing posts with label Cancer. Show all posts
Showing posts with label Cancer. Show all posts

Monday, September 23, 2019

Love and Healing – By the Numbers

Today I am pleased to have my friend, Peter Lichtenberg, share with you his unique story of love, healing and numbers. We often think of widowed people as women. But numerous widowed fathers are raising children alone while carrying their own burdens of spousal loss and grief. Healing uplifts their spirits. Future marriage presents new possibilities. Welcome to a revealing and unpredictable journey inside one man’s mind and heart.

Love and Healing - By the Numbers

By Peter Lichtenberg

Twenty, two thousand, thirty-five, and one. Numbers.

Numbers have always been important to me as a way to mark significant parts of life and living. When I was growing up, Hank Aaron was my favorite player while everyone else loved Willie Mays. I kept close track of his batting average and home runs. When my hometown Philadelphia Phillies were awful, I tracked Tony Taylor’s best season—could he end up hitting .300? He did and batted .301. When I had an All-Star baseball set and played constantly, I had season averages, lifetime averages and an assortment of other statistics always in my mind. During my first year of graduate school while walking to class, I would count the number of days I would live in West Lafayette, Indiana. When I became a researcher, I began to count my numbers of publications. First, because it was a marker for promotion and then because numbers just stay with me.

Twenty! In ten days, September 18, 2019 will mark the 20th anniversary of my marriage to Susan. I have journaled and written about Susan so often, (including my own short book, “Grief and Healing: Against the Odds,” of being widowed twice at 25 and 55). How miraculously she came into my life and allowed me to begin living fully—for the first time since the death of my first wife Becky who died suddenly at age 25 from an arrhythmia while jogging. Susan was not only my wife; she was my colleague, my best friend, my tennis partner, my hiking partner, movie critic partner, parenting partner, and my partner in noticing and reveling in the small things in life. Susan once wrote to me that “being married to you is the easiest thing I have ever done in my life”—wow!! How would I not celebrate and mark the 20th year?

Two-thousand! Two thousand days ago, Susan died. Her heart gave out after battling Stage IV breast cancer for 44 months—enduring all sorts of treatments. It was sudden, her death, and it was a blessing that she did not know she was going to die that day. She grieved so the idea of leaving me, of leaving her children and step-child ages 21, 12 and 9 behind.

One Thousand. I took a long walk on the 1,000 day after she died and reflected on how much grief I had experienced and how much hurt remained. I also reflected on how much I kept Susan close to me and how her spirit enabled me to heal and to continue living with a zest for experiences and joyful moments. At two thousand, I am back to the regular rhythms of day to day life. Happily remarried for eight plus months and so relieved to see my children doing so well and finding their day to day rhythms, too. Susan is everywhere in our home, and her smile and laughing, joyful and beautiful pictures give me energy and pride—I’m so proud that Susan chose me to be her one and only.

Thirty five! In two months and six days, it will be 35 years since Becky died. I just had brunch in Chicago with her college roommate (and my friend, too) Mary. We each reflected on how grateful we are that Becky graced us with her love and friendship. Mary had shared with me letters Becky had written her when we first moved in together, and on this trip, she told me of her last call with Becky and the loving things she said about me and about our marriage. I was always in awe that Becky chose me. She was the funniest, the most spirited, the smartest, and the most capable person in any room.

In Chicago, I stayed two blocks from where we spent the first days of our marriage. As much as my mom loved Susan, and boy did she—Becky was the daughter she never had (had 4 sons). I cried more during the five years after Becky died than I ever thought possible. Grief was overwhelming and lonely. Nevertheless, I survived and grew, and Becky’s influence on my life and her presence at key times of my life have been amazing. She handed me to Susan.

One! Despite being married to Debbie for slightly over 8 months, we finally moved in together only one month ago. We each had sons who were seniors in high school, and we knew it was so important to keep them in their respective routines and graduate from their respective high schools. Then, like a whirling dervish, Debbie pulled off the impossible. She got her house packed up and ready for sale and sold it within a few weeks. Watching her was exhausting and intimidating. How could someone be so organized and so effective with things!!

She (and her three young adult children) moved into my house, since Sophie was just about to enter high school and wanted to stay put. Debbie has been an incredible blessing not only to my life, but to all three of my children’s as well—and I think among them especially Sophie! It is my life that Debbie has impacted most. She is my best friend, my hiking partner, my dining out partner, and my business partner. I wake up next to her, make us coffee and breakfast, and cannot believe that once again I am blessed with such a happy home and such a healthy relationship. She has done the impossible in other ways, too. Whereas Susan accepted and embraced Becky, Debbie has embraced Becky and Susan and Susan’s children.

I will never be able to make sense of what has happened to me. I miss Becky, and I miss Susan—Susan especially, as we went through so much and went so deeply together. I cry at the drop of a hat—commercials, comics, and any sentimental scene I see. I hurt. I long for. I am grateful, too 
for all the joys of my life and Debbie’s gift of love, and a life to lead together strikes me as the most unlikely joy of all. Twenty, two thousand, thirty-five and one—there are stories behind the numbers.

Peter A. Lichtenberg
Farmington, Michigan
lichtenbergpete@gmail.com
September 8, 2019


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

Friday, June 17, 2011

Patients Rate Communication With Doctors (Research, Video: 52)

Does your doctor communicate well with you? Can you ask any question and feel heard, cared for, and unrushed? Are you involved in treatment decisions? Good communication includes compassion, respect, and attentive listening skills. To some degree, these skills can be taught, which is why medical students are given formal training in them. What are the mutual benefits? Doctors can benefit from fewer lawsuits and better reputations, which can enhance their careers. Patients benefit with happier healthcare experiences and better health, even in terms of life and death.

But what is too often the reality of patient-doctor communication from patients’ perspectives? A study reported in Cancer revealed these research results from questionnaires answered by 276 white, black, and Hispanic patients in various stages of lung cancer:

1)   For most topics, the majority of respondents reported that physicians communicated "not at all" or "a little bit."

2)   Low ratings were frequent for discussion of emotional symptoms, confidence interval, practical needs, spiritual concerns, proxy appointment, living will preparation, life support preferences, and hospice.

3)    Communication was inadequate for patients of different ages, stages, and races, although Hispanics were less likely than non-Hispanic whites and blacks to report inadequate communication.

Unfortunately, many of the topics reporting low rates of physician-patient communication impact patients’ health in very detrimental ways, including additional stress, impaired decision-making, and compromised outcomes. These results support research from Massachusetts General Hospital regarding the link between doctor –patient communication and outcomes. This video shares research results and insights for the future.


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.

Saturday, September 4, 2010

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

Saturday, July 3, 2010

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

Thursday, July 10, 2008

Hospice and Nursing Homes: Granting Dying Patients’ Last Wishes (Video 2:05 mins.)

This post includes an excerpt from my book, "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.” In the last chapter, titled “Baby Boomer Haven,” a patient named Ruth takes readers on a tour of her nursing home, which is based on best practices of limited numbers of nursing homes around the country. This is how she describes the hospice wing:

“Serenity permeates everything that goes on here. Many of our hospice patients enjoy music therapy to help soothe them through various stages of their illnesses. One of our community partners finances a “Wishing Well” project for hospice patients by making a wish come true for them. Recently, a patient had a special visit from a close friend with whom he had lost track for many years. The friend’s trip was financed through the “Wishing Well” project. Two days after their heartwarming reunion, the patient died. At the family’s request, the hospice chaplain coordinated a memorial service held here in our chapel. I was one of many who paid my respects to that kind gentleman.”

© Frances Shani Parker

Granting last wishes of hospice patients is a service provided to enhance quality of life during death journeys. This video shows another example of how fulfilled wishes can enrich patients’ lives.

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

Tuesday, May 20, 2008

Children as Caregivers: A Hidden National Problem (Video 2:54 mins.)

Most of us are aware of the millions of unpaid adult caregivers in America. But did you know that 1.4 million children, some as young as eight years old, are also caregivers? Most of their disabled or sick patients, usually parents or grandparents, have Alzheimer’s disease or cancer. Because these young people take on complex responsibilities early in life, they often miss experiences that most children take for granted. Sleepovers and after-school activities can be difficult when an ill loved one needs caregivng available at home. This problem is particularly prevalent in minority communities and among low to mid-income families.

A government study based on two national surveys by Mathew Greenwald and Associates reports that caregiving for young people can include, not only feeding, dressing, and medicating, but also toileting, bathing, and changing adult diapers. It is not unusual for these children to miss school in order to perform their caregiving duties. The emotional stress they carry can be even more harmful to them than the physical burdens. They are also more likely to be anxious and depressed.

You can view this video that gives more information about this seldom discussed problem of children serving as caregivers with adult responsibilities.


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.

Monday, January 14, 2008

“The Bucket List” Movie: A Hospice Nursing Home Volunteer’s Review (Video Trailer 2:28 mins.)

All these years, we’ve joked about “kicking the bucket,” and now we learn there’s a list inside the bucket. “The Bucket List” is a movie starring Jack Nicholson and Morgan Freeman as terminally ill cancer patients. They meet as strangers with seemingly nothing in common, except a hospital room they share. Gradually, they bond and commit to leaving the hospital in order to accomplish adventurous goals on their bucket list. Fortunately, Nicholson’s character is a billionaire who can foot the globetrotting bills. With only months to live, the two men forge a special friendship through laughter and tears. They savor some of life’s final thrills by skydiving, racing cars, and visiting world wonders.

That’s a summary of the movie I saw today while enjoying my “kiddie pack” refreshments. What the summary doesn't mention is that the movie nudges audiences into thoughts of personal end-of-life journeys, that it helps them unravel philosophical lessons they tend to ignore, that it attracts people in large numbers in spite of critics who pan it. There are those who snicker with condescension and label "The Bucket List” a feel-good movie about death and mortality. A hospice volunteer, I smile, just thinking what a compliment that is.

What’s on your bucket list?


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.

Friday, November 2, 2007

Hospice Volunteer Vigils: Final Days and Hours

This post is dedicated to Marcelyn Ann Stoddard, a hospice patient I never met. She died this week on October 29, 2007. Marcie had struggled with metastasized breast cancer for several years. Last month, Frank Pruett, her loving husband and caregiver, started a blog titled Moments of Marcie, in which he chronicled their final days together. I recently discovered this honest and heartfelt blog. Frank and Marcie were an inspiration for many who supported them through the hospice vigil.

Thousands of hospice volunteers are being recruited daily just like I was years ago. People follow that path for different reasons. For many, it is a unique opportunity to serve others at a critical time in their lives. Hospice volunteering has everything to do with using good common sense and applying knowledge gained through ongoing training. When it comes to patients, it is more about the volunteer being there with them than what the volunteer actually does. The patient senses and appreciates the volunteer’s presence.

The importance of being with a patient who doesn’t want to die alone is the reason many hospice programs are providing specialized volunteer vigil training. During vigil training, a volunteer is taught how to provide bedside support during the final days and hours of a patient’s life. Assistance for families is included. At some facilities, staff members also volunteer for vigil assignments. Vigils, which are based on a patient’s wishes, can include talking, praying, inspirational reading, playing music, performing rituals, touching and, of course, sharing silence. Reflecting the hospice philosophy, volunteer vigils help provide the patient with a more peaceful end-of-life experience.


Many healthcare staff members who work with dying patients will tell you they have had patients share stories about seeing dead people, ghosts, spirits they recognize, and angels. View this post for my personal story and an informative video: https://www.linkedin.com/pulse/end-of-life-seeing-dead-people-angels-frances-shani-parker?trk=mp-author-card

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