Learn about the challenges faced by caregivers for dementia patients and some creative ideas for offering support.
In this episode I welcome back my recurring guest Barbara Karnes, hospice nurse, speaker, thought leader, and expert on end-of-life care. She is the author of the “little blue hospice book” Gone From My Sight and her most recent book By Your Side: A Guide for Caring for the Dying at Home. We discuss the challenges of caring for a person with dementia and the impact that care can have on family members. Learn more about Barbara’s work at her website:
Check out the Series I’ve recorded in the past here
Join the team atPatreon.com/eoluand receive free gifts like the “Mind if we talk about death?” mini-poster or Love Your Life sticker or coffee mug. PLUS get our regular bonuses: the monthly EOL News Update, occasional movie reviews from 2 Doctors and a Movie, and automatic access to A Year of Reading Dangerously!
If you enjoy this content please share it with others and consider leaving a review on iTunes. Thanks again to all supporters on my page at Patreon.com/eolu, especially my newest patron Barbara Richardson and thank you also to Jen Blalock for buying me a coffee! Your contributions make all the difference.
Learn about a helpful guidebook for people caring for elderly parents that addresses all the major challenges.
My guest Dr. Leslie Kernisan is a practicing geriatrician and the founder of the popular aging health website and podcast Better Health While Aging. She recently published the book When Your Aging Parent Needs Help to answer the many questions she has received from people struggling to care for their elderly parents. She shares many of the helpful tools and resources included in the book for dealing with our most pressing issues when we become involved in providing care to our older loved ones. Learn more at her website:
Check out the Series I’ve recorded in the past here
Join the team atPatreon.com/eoluand get access to the EOLU mug: “Mind if we talk about death?” (only Patrons can purchase it). PLUS get our new bonuses: the monthly EOL News Update, movie reviews from 2 Doctors and a Movie, and automatic access to A Year of Reading Dangerously!
Welcome to this weekly bonus series of brief stories designed to touch your heart and offer you comfort, joy, laughter, and inspiration as we face uncertain times together! Remember always to choose LOVE over fear!
Story 9: Every Life is Precious
Shoulders by Naomi Shihab Nye
A man crosses the street in rain,
stepping gently, looking two times north and south,
Learn why the Death Education movement is vitally important right now for our society and get inspired to teach your own class about death and dying!
This week I’m continuing my focus on death education by discussing some important reasons why right now we desperately need more death-ed in every aspect of our society. Learn how you might become a death educator in your own community and start to share your knowledge to help others become aware of death.
You can still join A Year of Reading Dangerously and start reading books about death and dying with 700 other people around the globe! You’ll get to take part in live Q&A discussions with the authors of many of the books we are reading. For February we are reading Smoke Gets in Your Eyes by Caitlin Doughty–and she’ll be joining our discussion at the end of the month! Sign up now by clicking here!
Thanks again to all of my supporters at Patreon.com/eolu! Your generosity and encouragement mean everything to me! Become a patron for as little as $1 per month–where else can you do so much good with just $1? Go to Patreon.com/eolu to learn more.
Today I’m discussing why we need death education everywhere in our society and here are some of the places where it should take place:
Home – parents need to learn how to talk about death and dying with their children rather than shielding them from the reality of death
Schools – high school and college classes are a perfect place to introduce death and dying to young, curious students who can only benefit from learning more about death. (Next week I’ll share an interview on this podcast with Stacy Smith who teaches The Psychology of Death & Dying to college students, and on EOLU at the end of February I’ll present an interview about a high school elective on Death and the Meaning of Life with the teacher and 3 of his students.
Churches – clergy of all faiths need to be educated about death and dying so that they can better support their congregants on end-of-life issues within their belief system
Workplaces – employers need to understand the impact of death and grief on their employees in order to create supportive policies for bereavement leave; workers need to know how to interact with co-workers who are suffering with illness and grief
Medical system – doctors, nurses, and all other providers of healthcare need education in how to get comfortable with death, talk about it with patients and families, guide decision-making, initiate conversations with patients
Hospitals and nursing homes – need education to create sacred spaces for dying, to support patients and families at the end of life and honor patients’ wishes
Some of the reasons why death education is so important right now are:
We are living longer and the incidence of complex diseases like Alzheimer’s is increasing which creates a need for better advance planning. Patients and families need to prepare for the type of medical care and caregiving that may become necessary and understand how they can provide for those possibilities in the future.
Medical technology continues to advance at a rapid rate. Our ability to forestall death and keep a body alive has far outstripped our willingness to grapple with difficult end-of-life decisions. We need education to help people plan and prepare for the future and be pro-active about the care they receive. Studies show that those who think and talk about death are more likely to put their wishes in writing, to talk with others about their wishes, and to stop medical treatment when it is no longer helping.
Ethical and moral dilemmas about end-of-life issuesare splitting our society and families. Debates over physician-assisted dying and discontinuing medical care when it is not helping are going to increase with the aging of the Baby Boom generation. According to Pew Research Center surveys: 47% of Americans favor assisted-dying laws and 49% are opposed; 66% believe that there are times when doctors should stop treatment and allow patients to die a natural death, but 31% believe that doctors should always do everything possible to prolong life. These opposing perspectives are likely to be present in families too, especially if no advance planning has been done.
The high cost of being unprepared for death. Lack of advance care planning can lead to higher medical expenses, especially if the patient receive extreme care that was not actually warranted or wanted. Families unprepared for funeral planning are more likely to choose higher cost options and be vulnerable to unscrupulous marketing practices when they are grieving. Failure to plan ahead and put wishes in writing can cause increased stress and guilt for family members who must make decisions without any guidance.
The emotional and spiritual cost of ignoring death. As described in episode 127, death is our greatest teacher about life. Those who fail to recognize the inevitability of death are less likely to live to the fullest and appreciate the moment because they think they have plenty of time.
If you care about any of these issues and have been learning about death and dying by listening to this podcast and the End-of-Life University Interview Series, you are the perfect person to become a “death educator.” Start by sharing what you’ve learned with family and friends and consider putting together your own class in your community to help educate others.
You can download my free pdf: Teaching Guidelines for a Death & Dying Class and get some tips and tactics for starting your own community death-ed class! When you download the handout you’ll receive an invitation to a special work group I’m putting together in March on brainstorming your class.
Stay tuned to future episodes of this podcast to get more information about death education: next week I’ll share an interview with Stacy Smith about teaching college students about death and dying. On February 22nd I’ll present an interview on End-of-Life University with the teacher and students from a high school death-ed elective.
I hope you feel inspired to become a “death educator” in whatever capacity suits you, whether you simply share your knowledge with family and friends or start a class in your community!
If you enjoy this podcast please consider leaving a review on iTunes – it will be greatly appreciated!
In this episode Dr. Wyatt thanks her latest supporter on Patreon.com/eolu, Suzanne O’Brien RN, founder of Doulagivers. If you would like to help support this podcast and End-of-Life University Interview Series for the small contribution of $1 or $2 per month, go to Patreon.com/eolu and sign up to become a supporter!
In other personal news, Dr. Wyatt just reached the 50,000 word goal on her novel-writing challenge for the month of November! Stay tuned for more information on Starry Night, a novel about living and dying!
Go to DeathExpo.com if you are interested in getting the downloadable filed from Death Expo 2016. Tune in to Episode 65 to hear the highlights and take-aways from this fantastic educational event!
Next Dr. Wyatt shares the latest news and information about end-of-life issues that caught her eye during the month of November:
Survey of seniors in the U.S. shows that 27% have done absolutely no planning or preparing for the end of life. Those least likely to have prepared correlate with the following characteristics: age between 65-74, black or Hispanic, low-income, low education level, and diagnosis of Alzheimers.
Canadian study shows that for seniors who have completed Advance Directives, Values and Choices do not always align, showing a lack of guidance for choosing end-of-plans and confusion about basing choices on underlying values
a paper cited in the Journal of Pain and Symptom Management calls for improved consistency in honoring the EOL choices of patients in nursing homes and hospitals
Go Wish Card Game found helpful for patients completing their advance directives; helps them identify their values and priorities
Home-based Palliative Care shown to lower healthcare expenses in last year and 3 months of life, decrease hospital admissions and increase hospice utilizations. 87% of patients who receive palliative care at home are able to die at home, compared to only 24% of all Medicare patients who die at home
Review of 43 palliative care clinical studies shows that palliative care improves quality of life but does not extend life
UC Santa Cruz has started a program to pair pre-med students with hospice patients
Study shows doctors are reluctant to discontinue routine medications that are no longer indicated for their patients at the end of life due to lack of awareness, low priority, and fear of causing patient to feel abandoned
Colorado became 6th state in the U.S. to approved medically aided dying during the November election
AARP and the National Association of Area Agencies on Aging have a launched a campaign to identify seniors suffering with loneliness and isolation in order to connect them with community resources; 43% of seniors report loneliness which leads to medical consequences
new movie Collateral Beauty deals with grief and death and will be released on Dec. 16th
Canadian singer-songwriter Leonard Cohen died on November 7th at the age of 82
Dr. Wyatt thanks her newest Patreon.com supporter Tracy Zagata. You can become a supporter as well by going to Patreon.com/eolu and signing up!
Sign up for Death Expo which will take place Nov. 10-13, and hear 12 speakers on EOL issues. Go to DeathExpo.com to register free to tune in to these excellent presentations.
This episode is taking place on Halloween and the Day of the Dead. Dr. Wyatt includes the following updates:
CMS report 52% increase in Medicare spending on hospice between 2007 and 2015 due to 38% increase in the number of patients receiving hospice care, primarily patients with dementia
the DEA is mandating 34% decrease in opioid production due to dramatic increase in opioid-related deaths since 1999 – rate has quadrupled during that time frame
JAMA Oncology reports that the cost of secobarbital, the drug most frequently prescribed in assisted dying cases, has increased by $25oo; there is no explanation except that drug companies can get away with it
California is the first state to require that palliative care teams have a chaplain for those patients who want to receive spiritual care
Debra Beaulieu writes in HealthLeaders Media that all clinicians should know the following about palliative care: 1) that it’s not just for dying patients 2) that it is often underutilized and 3) all clinicians should have basic palliative care skills
Study in J. Palliative Med showed that home-based palliative care (as opposed to hospital-based care) meets more of patients’ needs in the last 3 months of life and costs $12,000 less per patient
Controversial “doll therapy” for dementia patients
Study shows that 11% of female caregivers over the age of 50 have to leave their employment to fulfill caregiver duties, costing $300,000 in lost wages, benefits, and Social Security over time
Census data reveals that currently 25% of seniors are considered “Elder Orphans,” meaning that they have no children or close family to care for them; these numbers will only grow as Baby Boomers age, reinforcing the need for more caregivers
Medicare Care Choice Pilot Program is currently underway; patients can receive home-hospice care while continuing curative treatments if they have a diagnosis of cancer, COPD, CHF, or HIV; there are 140 participating hospices in the program
Survey shows that 1/2 of MS patients would consider medically assisted dying in the case of unbearable pain, being a financial burden to others, or if unable to enjoy what makes life worth living
Study reveals the 69% of MOLST or POLST forms have incomplete information and 14% have conflicting choices, making them nearly impossible for care providers to follow
the nation’s first conference on VSED was held in October at the Seattle U. School of Law and was featured in an article in the NY Times. Phyllis Shacter was a speaker – you can hear her EOLU interview in episode 25
Conversation Sabbath will take place November 11-20 with >30 congregations from various faiths participating; the focus will be on EOL conversations and theconversationproject.org will provide tools and resources for the event
Andrew Henderson, 28 year old performance artist who is terminally ill has created an art performance called Taking it to the Grave and will tattoo the secrets of his audience on his body before he dies
Miss Norma, the 90 year old woman who chose to go on a cross-country RV tour with her son and daughter-in-law rather than undergo treatment for cancer, has died
Have a safe and meaningful Day of the Dead! Tune in every Monday for a new episode and support EOLU at Patreon.com/eolu. Until next week remember to:
Today Dr. Wyatt is inspired to share an interview with Dr. Judith London, a psychologist who cares for Alzheimer’s patients and their caregivers. If you listened to last week’s podcast you heard a mention of “Memory Cafes” that are being held in Minnesota. Dr. London share her own stories and experiences with creating support groups for Alzheimer’s patients.
This interview will cover:
why Dr. London was inspired to work with and write about Alzheimer’s patients
what are the major challenges faced by caregivers for Alzheimer’s patients
tips for caregivers in relating to their loved ones with Alzheimer’s
how hospice and palliative care workers can be more supportive of family caregivers
In this episode Dr. Wyatt thanks her newest Patreon supporter, Elaine den Hoed. If you’d like to make a small donation to help cover the expenses of this podcast and the EOLU interview series go to www.patreon.com/eolu. Your help is greatly appreciated!
This episode includes:
Nebraska’s plan to improve services for Alzheimer’s and dementia patients
“Memory Cafes” taking place in Minnesota
Study that looked at the utilization of Assisted Dying laws and found that none of the feared consequences have occurred: usage has been very low and there has been no “slippery slope” decline to euthanasia
University of Vermont study showed significant disparity between physicians’ estimations of prognosis and patients’ understanding of their own prognosis, pointing out the need for better doctor-patient communication
Survey of Hem-Oncology MD’s showed that they feel patient’s unrealistic expectations of cure or prolonged life are the most common barrier to quality end-of-life care
Study that found Palliative Care conversations about patient prognosis created PTSD for family members has been widely criticized for the way it was set up
Seniors are the fastest growing group of social media users
Article discussing mourning rituals among animals
Stephen Hawking declares “There is no afterlife.”
Photo of fatal motorcycle crash site in Kentucky shows what some believe is a “spirit” hovering over the site
Elderly couple in San Antonio who both have dementia died within 3 hours of one another while holding hands
Thanks for tuning in to the EOLU podcast! Be sure to come back every Monday and share these episodes with someone else who might find them helpful!