engAGINGconversations's podcast

Why is it so hard to say that someone died? We use the terms "passed away", "departed", "crossed over", among others because we can't say died.

Sallie Tisdale is a straight shooter. She uses her experience as a writer, a Zen Buddhist, and an RN, to educate about end of life and care of the dead in her book Advice for Future Corpses: A Practical Perspective on Death and Dying

Check out today's episode and find out:

• What the most common fears associated with death and dying are.
• The impact burial and cremation have on our environment.
• Things you should know about hospice.

Although we didn't discuss this, Sallie mentioned PACE programs. I will do an episode on PACE in the future, but in the meantime, check out the link for more information.

Palliative care is a relatively new specialty. And it, just like other medical specialties, is siloed. And the issues go beyond lack of patient education. There is a lack of physician training too.

Dr. Shoshana Ungerleider is on a mission to change that. To make the end of life experience better for everybody. With her help, Extremis and End Game are produced, and air on Netflix. These documentaries give us a "both ends of the spectrum" view of death.

Because of these issues, she has started a non-profit, called End Well ,to bring all involved industries together to talk, and figure out how to change the landscape around dying. A symposium to "unsilo" palliative care.

Listen and find out:

• what you need to do if you don't want aggressive medical care at the end of your life
• the cost that family caregiving has, not just on the family, but on the economy
• how you can make a difference in the life of your loved ones and yourself

Follow Shoshana on social:

FB: @endwellproject

Twitter: @ShoshUMD

IG: @endwellsf

Technology and advances in medicine have increased our longevity. As a result our society is growing older and frailer. But our society is no longer set up to hold us in our frailty.

The need for palliative care services is growing, and Resolution Care Network is setting the tone for outstanding care. Listen to Dr. Michael Fratkin and find out:

• What palliative care is
• How Resolution Care Network is reframing Palliative care
• How you can advocate for yourself and your loved ones to get these services
• How you can help Resolution Care Network help more people

Check them out on Social

Facebook @resolutioncare

Twitter @michaeldfratkin

email Michael directly at

[email protected]

Virginia Morris, a medical journalist for decades, describes caring for aging parents as a continuum of decisions. Just because the "paperwork" is in place and you "know" what your parent wants, it doesn't prepare you for when the time comes.

End of life is a place you get to, but the path is not straight and the lines are often blurred. In today's episode, we discuss:

• the exploitation of the elderly
• how hard this period of your life is, no matter how prepared you are
• the hard questions you should ask
• what you should make time to do

Find more about Virginia and her books How to Care for Aging Parents and Talking About Death on her website careforagingparents.com

Death is coming for all of us. Are you prepared?

• Have you thought about what you want or don't want if you were faced with a terminal diagnosis?

• Have you shared any of this with your loved ones?

All important questions to ponder. And start talking about with your family.

If you are a caregiver, are you taking time out for yourself? Being a martyr is no good for anybody.

Professional caregiver and author Meina Dubetz RN shares her wisdom about caring for people and yourself at the end of life in this interview, and her book:

When Death Comes Knocking for your Patients

A great resource for professional AND family caregivers

Follow Meina on

Facebook

LinkedIn

Because we die, life is precious. And we are all going to die. So if you see death as the enemy, you’re going to lose. So how can we make the most out of our lives. And deaths?

Dr. BJ Miller is on a mission to reform death. To make it more wonderful instead of less horrible. Because death isn’t always something to overcome. And it shouldn’t always be “medicalized”.

In this episode, listen as we talk about improving palliative care options and the Zen hospice project. We also ask some tough questions, like:

• Does medicalizing death help us or hurt us?
• What is the total cost of death?
• Why is this conversation so important?
• How can you get involved?

BJ has a book, co-authored with Shoshana Berger, coming out in July:

A Beginner’s Guide to the End

Follow BJ on Twitter

and check out The Center for Living and Dying

Tina is a photo artist who had a significant fear of death. A $2 book on the clearance rack changed her life. She no longer fears death, and has taken on a Ph.D project to let others talk about their beliefs about death and what happens when we die.

She shares these stories (and her brilliant portrait photography) on her website

The Death Letter Project

She is a pioneer. She wants to decrease the fear people have around death. Breaking down barriers about end of life conversations. What is death? What happens when we die? Because of her experience reading/talking with others about near death experiences, she has changed her beliefs.

We need more pioneers in this area. Death is a normal part of the circle of life. We should be able to talk about death as easily as we talk about birth, weddings, graduations…any other normal life process.

If we can have these conversations, we can diminish our cultural fear of death, and encourage more conversation about what individuals really want (or don't want) when faced with a life limiting illness.

It's all about quality, whatever that means to an individual, and our job as family members/friends/advocates is to uphold the wishes of those we love. Death is an amazing teacher.

You can connect with the Death Letter Project on the website, or the Facebook Page:

@deathletterproject

Or Instagram

deathletterproject

You can find Tina's photography work here:

tinafiveash.com

Being raised Mormon started Amy Wright Glenn on a path to religious/spiritual understanding at an early age. This path led to learning, teaching, and guiding.

In this episode, find out:

• How talk of death and dying came to be so "taboo" in society
• What it means to "hold space"
• What is a Death Doula
• Why the medical community needs to change the way it looks at death
• How you can get a year's membership to The Institute for the Study of Birth, Breath, and Death for $30 (a$90 value!)

Check out Amy's books:

Holding Space: On Loving, Dying, and Letting Go

Birth, Breath, and Death: Meditations on Motherhood, Chaplaincy, and Life as a Doula

Find Amy on Social Media

Facebook @amywrightglenn

Twitter @amywrightglenn

Kelli is a devoted daughter. She became a caregiver for her mom when she was in her 20's and her Mom was in her 50's. She also had a 16 year old brother at the time. She didn't know she was a family caregiver, she just thought she was doing what daughter's do.

Her years of caregiving exposed her to so many issues other family caregivers come across, that she changed careers to help others. After 11 years operating a home care business, she has branched out yet again. Her online company, TheDevotedDaughter.com offers resources and support for other family caregivers.

Kelli tells us what she thinks is the number one issue that affects families. She'll also share with you some other tips for making this time of life easier for you and your loved ones.

Stay tuned for her book Always Her Daughter , coming out in March.

You can find Kelli on her website The Devoted Daughter on Instagram and Facebook. Or you can email her directly at [email protected]

The death of her father shocked Ann Neumann. Not that he died, but the first hand experience of death. Was his death "a good death"? This set her on a path to learn. And now she is on a path to enlighten others.

In her book, The Good Death: An Exploration of Dying in America she shares her experiences as a hospice volunteer.

No matter what we do, the end is coming for us all. By writing and talking about this she is trying to take the morbidity out of death. We have been programmed to "fight", but at what cost?

Ann believes systemic change is needed; that conversation isn't enough. Learn more about:

• the social injustice that exists in dying
• the pluses and minuses of hospice
• the financial impact on family caregivers
• the need for better education and training for our medical providers
• the need for policy changes to affect the above

You can follow Ann on Twitter @otherspoon

or email her at [email protected]