Is this what you want?

http://www.considertheconversation.org

Sorry for the really large letters for the website…wanted to make sure that you had the info to check out this website and this video…

We can’t hide from dying.

Most of us want to be at home, most of us want some semblance of control ..

Some want to feel no pain, at the expense of extra time with family.

Others want to be lucid and wide awake despite more pain.

The common denominator?

Doing it our way!

Yet, like other taboos, like sex, we don’t talk about this with our loved ones.

Think about it, sex is everywhere but we can’t talk to our kids about healthy sexual self-concepts or taking care of their sexual health.

Is it any different with dying?

We tune in to Anderson Cooper and he and Sanjay are all over the world, in war-torn areas.  We watch people killed in Saving Private Ryan, any Bruce Willis movie, the 5 o’clock news, NCIS, zombie movies, etc.  Even Easter is coming up, a celebration of dying and renewal and we focus on the renewal, the eggs, the candy, the hats…

But we can’t talk about the reality.  Really?

I wanna talk about it before it’s too late.

Have you had the conversation?

Do you know what your aging parents want at the end of life?  Do you know what your adult children want?

Heck, do you know what you want?

What about this?

This is a great video!  It features some of the greatest names in the field… Ira Byock, MD, Doug Smith, MDiv, James Clearly, MD.  What they tell us is not that different that the stories and the teachings of people like Frank Ostaeski, Joan Halifax, Ram Dass, Stephen and Ondrea Levine.

The video emphases the reality of what our dying can be like, that we have choices, that the medical profession doesn’t always start this conversation, what is hospice care, and so much more.

And it’s tough enough that we don’t have “the” conversation about our aging parents and grandparents… we certainly don’t have the conversation with our spouses at a young age… we don’t talk about their dying or ours.

We plan for kids, creating a home but we don’t talk about what might happen if our child has cancer, is born with a genetic disorder, a hole in their heart.

If nothing else, the AIDS epidemic should have brought full in our face that the young die.  But it didn’t because the early faces of AIDS patients, like my brother, were not people who most of us thought we were like.  We forget that we breathe, love, have blood course through our veins, sleep, have ah-ha moments, etc.

We didn’t use the pain of a generation in this country or the continued plight in Africa  to breathe in pain and breathe out compassion.  We didn’t say, hey, what do I want when it’s my time?

I’m lucky, I’ve been around hospice, I’ve seen people choose their future… make decisions about their health care, their health, how they will spend their time and energy.

I had a mentor that took it upon herself and with her first cancer diagnosis, over 15 years before her death, and spent time deciding how she wanted to leave this world.

By the time I met Lois, it was all planned, almost 10 years before her dying.  A Native American drummer, an interpretive dancer, the Kaddish to be read by a loved one, Scottish bagpipes.

But that wasn’t all.  When she got the second diagnosis of breast cancer, the final diagnosis of the metastatic cancer involving several systems, she got informed.  She worked with her doctor and made sure that it was on her terms.

What were her terms?  She didn’t want to be nauseated because she loved food.  She didn’t want to be throwing up and losing her hair for an extra month or year if it meant she couldn’t do yoga.  She had things she still had to do before she died… Africa, the Grand Canyon, yoga retreats with rebel nuns, and just as importantly, teaching doctors, nurses, social workers, and chaplains about the fact that those LIVING with their dying had special needs and she was not afraid to tell them what those things were.

Those are the things that were important.  That’s what came from her conversations with herself, with her life partner, her son, her ex-husband, and her family of friends.  Since we knew what she wanted, we could all support her to make it happen.

And we did.  2 days after the September 11, 2001 attacks, hundreds of us were gathered in Nashville, TN to celebrate her life.  The bagpipes, the dancer, the Kaddish…. it was all there.

And I talked to friends who were there at the very end.  And they told me… she still had her mane of hair.  She was surrounded by bright purple balloons.  She had soft music, loved ones, and peace to surround her as her family of friends and her husband Wayne sat vigil.

Death doesn’t always happen that way.  But death isn’t always talked about.  Death isn’t always planned.

And death isn’t always planned.  But when I went to work for hospice and created friendships there, in my 30s, I made sure people knew I didn’t want heroic measures — no feeding tubes, no ventallator/bi-pap, no ECT, CPR, … I want to be comfortable and have as little pain as palliative medicine can provide — ie, don’t be stingy with morphine… at that point, there is no such thing as addiction.  I made sure a friend who was interested in world religion had a copy of the Tibetan Book of the Dead to recite.

I told them to make sure they had baked ziti, mom’s baked beans, and cold cuts for grinders if anyone got together to mourn because that’s how wakes rolled in my family when I was growing up back East.

Dave Gahan from Depeche Mode

My twist… make everyone where black or yuppie attire (can’t you just see an ocean of dock shoes and polo shirts with the collars up… so East Coast a la 1980s), make them listen to my favorite Depeche Mode songs with a little Salt N’ Pepa to keep it old school and as a shout out to my growing up in Bridgeport, and have envelopes for donations to things that matter rather than buckets of flowers.  DON’T have it before 10 am because I probably wouldn’t be there… everyone knows I don’t like mornings… 

Some thought I was morbid — yes, even at hospice.  Some thought I was crazy.  And some got it.  

But I had those conversations even if I was silly about it to make my point… “don’t come after me with your AEDs, I don’t want a stranger checking out where my bra came from…  Don’t bring me to the local hospital” where because of their religious affiliation and beliefs people stayed on life support.  

“Put a pillow under my head.  Cover me with a soft blanket.  Call my folks.  Recite the book of the dead or a meditation from Thich Nhat Hanh.  Send my jewelry and cds to a friend back home.  

Put me in black penny loafers with nickles in them.  Put a mala in my hand.  If mom’s around, have someone sing the Prayer of St. Francis… Chant “I have Arrived, I am Home, In the Here and In the Now, I am solid, I am Free, In the Ultimate I Dwell.”  

Give my books to one of my school’s libraries and the rest to a hospice library.  Give extra love and care to my parents because no one should have to lose both of their kids.  Sneak into my grandfather’s cemetary and sprinkle some of my ashes on top of his and my grandmother’s grave.  

Take the rest of my ashes to St. Mary’s by the sea or Sasco Hill Beach, or underneath an incredibly red sugar Maple in the autumn… and let me go so that I can stay forever in your hearts..”

And yes, over the years, I know what my parents want and don’t want.  Not in great detail but I think I know enough to make informed, careful and compassionate decisions.

But what about you?  Do you love yourself enough to make decisions?  Do you love yourself enough to ask now and know what your loved ones want rather than waiting until it’s too late and you are inundated with pain and sorrow?

What are you waiting for?  Have the conversation?

Related articles

• Letter: In patient’s dying days, hospice can do much to ease suffering (tcpalm.com)
• Hospice Refresher Course (griefresourcecenter.wordpress.com)
• Featured: Top Five Regrets of the Dying (namasteconsultinginc.com)
• Presence and Support (namasteconsultinginc.com)
• The Tasks of Grief (namasteconsultinginc.com)
• last concerns (morvensblog.wordpress.com)
• Lucas and Juno: Special bond of a rescue dog and dying boy (griefrevelations.com)
• How I became a hospice volunteer (kevinmd.com)
• “Welcome Everything, Push Away Nothing” (namasteconsultinginc.com)
• Judge who jailed dying NY woman OKs hospice care (seattletimes.nwsource.com)
• Cost of Dying: Readers invited to share their own experiences with a loved one’s end-of-life care (mercurynews.com)
• “Don’t Wait.” (namasteconsultinginc.com)
• Letter: Hospice incredible organization helping people make peaceful exit (tcpalm.com)
• The New Old Age Blog: Among Doctors, Fierce Reluctance to Let Go (newoldage.blogs.nytimes.com)
• Finding Hospice Care for the Dying (nytimes.com)

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