A place to talk death and dying issues

GrammyR

Lita - Its,all relative to your health really -cancer knows no age determinations -loving to 100 not necessarily the best despite medical inventions,and drugs

Lita57

Amen to that, Grammy!

Nan812

grammy , lita.....i couldn't agree more!

Brendatrue

Relieved for you all that the conversation continues, a safe space has been created for sharing thoughts, feelings, and experiences that many others cannot bear to hear much less engage around. I find the language of dying and death flows naturally for me at this point in my life and after witnessing and being present for many deaths. I know that is not the case for all. It's especially courageous when one is willing to be authentic even when it feels incredibly raw.

Tina2, thanks for the NYT article on terminal lucidity. When I was a very young child, I had the enviable experience of being the youngest of five generations of strong women. My great-great-grandmother, who was very tiny at the end of her life, loved to sit in her rocking chair and listen to her great-great-grandchildren sing to her. My, how I enjoyed singing to that precious woman! She had been rendered blind, possibly by a stroke, a number of years before she died, and she was especially grateful for singing, hugs, and being able to touch others' faces. On the day that she died, after being quiet and "lost in a deep sleep" for days, she opened her eyes and exclaimed that she could see again. She talked to each person at her bedside and was able to identify some by the sound of their voices. Was she really able to see through restored vision? Did she somehow see others in her mind's eye? We will never know, but it was a powerful experience for her and for her loved ones. A few hours later she died, peacefully.

Here's my latest find while exploring poetry-land:

The
Way Back

A
syrupy rope of honeysuckle

            hangs

                        indecently
over my

                         head

           desire

without 
   a hidden       shadow

So
naked a moment––then

ragged
scraps of clouds

            a
leaf-streaked street

                          the
sky knitted with stars

Not
the end

             but
ending

The
moon officiates . . .

How
long it’s taken to find a way

back

Between
near and far––

               inexplicabilis

 
                       inextricabilis––

it’s
been a riddle

traversed
in the dark

*

After
the cave tunnel

              the
yawning    unseen

              chasm

                                 after
the space

                  fracture
cleared inside of

                  me

the
forbidden terrain    the

uncharted center

             after
the linear path

                          the
circular pattern

             after
the grim, private ritual

              of death

                           the
compass

                           broken            the

                           needle static

after
the rhythmic order of it all

               after
grief became a bird 

               thieving the air

dropping
its seed          so that the

tree would thrive

                           after
all of this   

                           after seeing the

                           crescent moon

                 formed
by the bull’s horns

                  before me

when
another door opened

                       how
willingly I

                        walked through it

(Francine Sterle .Taos Journal of International Poetry
& Art.)

  

bigbhome

Brenda - what a powerful story, followed by a beautiful poem. Thank you for sharing that with us.

Hugs and prayers

Claudia

tina2

Thank you for the poem, Brenda. Do you know Jane Hirshfield? I discovered her work just a few years ago and love it..

It Was Like This: You Were Happy

It was like this:
you were happy, then you were sad,
then happy again, then not.

It went on.
You were innocent or you were guilty.
Actions were taken, or not.

At times you spoke, at other times you were silent.
Mostly, it seems you were silent — what could you say?

Now it is almost over.

Like a lover, your life bends down and kisses your life.

It does this not in forgiveness —
between you, there is nothing to forgive —
but with the simple nod of a baker at the moment
he sees the bread is finished with transformation.

Eating, too, is now a thing only for others.

It doesn't matter what they will make of you
or your days: they will be wrong,
they will miss the wrong woman, miss the wrong man,
all the stories they tell will be tales of their own invention.

Your story was this: you were happy, then you were sad,
you slept, you awakened.
Sometimes you ate roasted chestnuts, sometimes persimmons.

— Jane Hirshfield

Tina

Nan812

wow tina...i so loved that poem...such is life

Nel

Tina  Perfect   Thank you

bigbhome

TIna - That poem really spoke to me. Thank you!

Claudia

Brendatrue

Tina, I do know Jane Hirshfield, and that particular poem of hers is one of my favorites. I'd not read it in a while, and I am grateful for the opportunity to sink into its richness all over again. Thanks for sharing it! Below is another poem by Jane Hirshfield that I have spent some time contemplating. (Sorry, I could not get the spacing a little tighter, even though I tried! I placed an * at the beginning of every stanza.)

"Poem With Two Endings"

*Say ‘death’ and the whole room freezes –

even the couches stop moving,

even the lamps.

Like a squirrel suddenly aware it is being looked at.

*Say the word continuously,

and things begin to go forward.

Your life takes on

the jerky texture of an old film strip.

*Continue saying it,

hold it moment after moment inside the mouth,

it becomes another syllable.

A shopping mall swirls around the corpse of a beetle.

*Death is voracious, it swallows all the living.

Life is voracious, it swallows all the dead.

Neither is ever satisfied, neither is ever filled,

each swallows and swallows the world.

*The grip of life is as strong as the grip of death.

*(but the vanished, the vanished beloved, o where?)

Brendatrue

I discovered a children's book about death and loss, _Duck, Death and the Tulip_, written by Wolf Erlbruch. Here's Maria Popova's essay on the book from her website, brainpickings: https://www.brainpickings.org/2016/05/04/duck-death-and-the-tulip-wolf-erlbruch/ If you follow some of the links in her essay, you will discover other children's books about death, grief, and loss as well.

Here's the video that Ella Yoon and Jorge Sandoval (and others) created, based upon the book: https://vimeo.com/90681329

tina2

Brenda,

Thank you for the lovely poem and the links. "Duck, Death and the Tulip" is brilliant.

Tina

Brendatrue

Perhaps we need a "Poetry Corner"! This poem popped up in my email this morning. I'd not read it in years. Isn't it interesting how poetry deepens as our life experiences and perspectives evolve?

IT WAS A QUIET WAY

Emily Dickinson

It was a quiet way—
He asked if I was his—
1 made no answer of the Tongue
But answer of the Eyes—
And then He bore me on
Before this mortal noise
With swiftness, as of Chariots
And distance, as of Wheels.
This World did drop away
As Acres from the feet
Of one that leaneth from Balloon
Upon an Ether street.
The Gulf behind was not,
The Continents were new—
Eternity it was before
Eternity was due.
No Seasons were to us—
It was not Night nor Morn—
But Sunrise stopped upon the place
And fastened it in Dawn.

Brendatrue

Here's a link to four poems from, and information about, a recently published book of poetry, _When My Heart Goes Dark, I Turn The Porch Light On_, by Jane Underwood, who was diagnosed with breast cancer in 2005 and died in 2016.

https://womensvoicesforchange.org/jane-underwood-four-poems-from-when-my-heart-goes-dark-i-turn-the-porch-light-on-i-was-wrong-song-of-absence-wild-fire-and-porch-li.htm

tina2

Brenda,

Lovely. Thanks.

Tina

Noni

Hi all,

Can we do a hospice check in? Who else is in hospice? I just finished my 9th week (and counting).

Anyone else find their fingernails are growing out of control? Mine have never been stronger or looked better. The nurse said it's common. They're so beautiful I just want to stare at them all day!

Noni

Another thing, where can I find the list of things my husband needs to do? It used to be posted on this thread but was removed a long while ago. Things to do 'after'.

50sgirl

Noni,

Bon had posted several lists of things she had done, documents that her husband would need, etc. Unfortunately, Bon felt the need to leave these boards for personal reasons, and she asked the moderators to remove all her posts. Her lists, of course, were among the items that were deleted. PurpleMinion had saved some of those posts and was kind enough to repost the information for me on another thread.

This is might be more than you are looking for, but I thought that others might find the information useful.

This is what PurpleMinion posted for me. This list, including the "additions", was originally compiled by Bon. I have oftenwondered how she did after she left these boards. PurpleMinion said that there were a few other items, but this is the information that was helpful to her.

From Bon:

Thought this might be helpful to others...My 'when I die' bag has been hanging in our closet for several years now and my DH knows that it is all he needs to take with him to the funeral home and for handling issues for my death. The bag contains my white cotton gown to be buried in, a cross, photos want in casket with me, and a binder containing the following:

•copy of birth certificate,

•copy of social security card,

•copy of drivers license,

•copy of marriage license,

•copy of DD214 (military service),

•copy of durable power of attorney,

•copy of last will & testament,

•form from funeral home "Vital Information for Death Certificate & Transit Permit" completed except for my age to be filled in.

•form from state/county office of vital registration/records "Request for Copy of Death Certificate" completed for multiple copies and ready to mail with copies of husband & my drivers license and our marriage license stapled to (including Forever stamps on the envelope).

•form from VA.gov "VA Form 40-1330 Application for Standard Government Headstone or Marker" completed except for date of death and date for husband's signature, plus blocks 24 & 26 need to be completed by cemetery then it gets faxed to the Headstone/Marker Office at 1-800-455-7143 and to Scheduling at 1-86-900-6417 along with copy of DD214 for me and husband.

•a copy of the socialsecurity.gov 'Reporting the Death of a Beneficiary" information page where it states to call 1-800-772-1213 immediately to report death so that my SSDI stops and for one-time $255 surviving spouse benefit (the funeral home can do this as a courtesy).

•a copy of husband's union spouse's death benefit.

•My Burial Wishes signed by me (includes no autopsy, no organ donation, no funeral service, no memorial service, no obituary, no embalming, no extras, casket choice, in-casket items.

I have already made an extra copy of the above forms and highlighted what needs to still be filled in on the forms after I die.

I've already put everything and all bills in husband's name and so in addition to the above he will only need to contact automobile insurance, motor vehicle office, and bank. We don't owe anything now.

I've already given away all my possessions except my gold band of wedding ring and it will be on my finger, my clothes & shoes will be donated to Goodwill, and everything in my bathroom drawers shower will be trashed.

Could it be any easier for DH? ha!

I've said all along God really knows me, He knows how organized I am and how important it would be to me to make this as pain-free for DH as possible and for that am truly grateful.

ADDING MORE TO THE BAG / ABOVE LIST (from others' input, along with some more ideas that have come to mind that could be helpful):

•List of all banking/etc account numbers and passwords.

•Letters ready for all 3 credit bureaus to be mailed after my death so that my credit files are closed down - preventing identity theft. Letters are written and envelopes addressed and stamped but not sealed - have a post it note on each to add a photo copy of death certificate to each envelope before sealing.

•What you wish to happen to your pets. A relative or friend that is willing to take on your pet and have all of the pets papers (immunizations etc) and your notes on pets habits/likes/dislikes together in an envelope with contact information for the relative/friend.

•If having a funeral, photos of yourself with family & friends you want displayed at the funeral. Perhaps also have them scanned to a CD for online memorials. You can also make it a slide-show to your favorite music.

•If having funeral, list of your favorite music and burn a CD of those.

•If having funeral, a photo of yourself that you like the best for the funeral parlor to do your makeup and hair the way you like it.

•If having funeral, a 'how you want to be remembered' statement or a poem, etc you'd like read at your funeral.

•If choosing cremation, state where and when (you can pick a special day & time) that you would your ashes scattered. Or you can have your urn of ashes buried if you like.

•If choosing cremation, have a special urn made (penny4cats did this and will share websites about it), or you could make it yourself at a pottery place. If plan to bury the ashes, find a wooden box that fits the urn for this purpose.

•Any special friends or medical team members you want to thank, get some blank inside cards and write a note to them and have the addressed and place a forever stamp on them (so you don't have to worry about postage changes).

•If you have jewelry you want to go to certain people, give it to them now or on a special day in the near future, and tell them about the piece (who gave it to you, when, where, what it's meant to you), this is the same with anything really, give it now so that the recipient will remember that "you" gave it to them rather than you 'left' it to them.

•Don't forget your recipes - pass them on...maybe even make special recipe cards with "from the kitchen of (your name)" so that they will carry on forever.

Whatever you add to the bag, don't forget to add it to the list for your DH/loved one-in-charge (i.e., mail cards, mail letters to credit bureaus, take CD of music & photos to funeral home, etc).

****Also reposting these added items....

Someone may have already mentioned this, but just thought of it when updating a few addresses. Add this to you When I Die Bag:

•Complete list of everyone you want contacted when your gone, with their name and phone number and address. We often have friends that our family and other friends have never met. After passing, notification phone calls are made by family members or friends and having the address will help the family with thank you cards if needed. Also, if someone on your list has a name that is pronounced different then it sounds, write a note in parenthesis beside their name how to say it; i.e. Aja Jones (pronounced Asia).

•Complete email addresses for notification of your death (if you have friends that you have only ever communicated by email and never met). Put these into a word document so they can be copied & pasted into a email To line. (Or put on a USB jump drive for your bag).

•If you're going to have a USB jump drive, make an index for what items are on it and what the items are for. Print the index and place the index & the jump drive in a zip lock bag or if you do a notebook like I did, you can use a 3-ring binder pencil holder.

•You can scan in and save documents in pdf format and then save those to the jump drive, just in case anything gets misplaced there will be a electronic copy of it. Recommend using a separate jump drive for the photos and or music you want at your funeral, just so your private documents don't accidentally land on the memorial slide-show.

•Someone posted before that sending out thank you cards after funeral was too hard or never got around to it. In my small home town paper, I've seen a small business card size ad written by families to thank everyone for their prayers, flowers, cards, kindness, etc.

Your family history with all that you know...(such as maternal aunt died age 39 with breast cancer spread to lungs, paternal aunt died age 44 with uterine cancer, paternal grandmotherdied 93 after complication from fractured hip/osteoperosis and she had diabetes and HBP....)

There is additional information, but I think this is what you were looking for.

Lynne

Freya

Hi Noni. I'm not in a hospice. My plan is to die at home, but you know what they say about the best laid plans.

It's interesting you mention your nails, mine are exactly the same! I thought it was my imagination.

Thank you for sharing that list Lynne.

Freya

The Coffin Club.

If I wasn't being cremated I would do this in a flash. It is a story about elderly people in NZ getting together to make their own coffins. Not only is it practical, it is a social occasion for them. Some use the coffins as bookshelves or coffee tables until they are needed, and they decorate them to represent their lives.

moderators

Hi all,

We thought you might be interested in this new Podcast from the main Breastcancer.org site:

Facing the End of Life, July 31, 2017

For nearly 25 years, Kelly Grosklags has dedicated her practice to minimizing suffering through her work in oncology, palliative care and hospice. An experienced therapist, Kelly is a licensed clinical social worker and a board-certified diplomat in clinical social work. She also earned a fellowship in grief counseling from the American Academy of Health Care Professionals. Kelly speaks frequently about end-of-life issues, including care, grief and loss, both in person and on her website, Conversations With Kelly. Her passionate and supportive demeanor helps patients, caregivers and health professionals connect with the wisdom of making life more meaningful, coping with depression and anxiety, transforming fear into hope, healing versus curing, and the wisdom of dying a good death.

Listen to the podcast to hear Kelly talk about:

• becoming comfortable with talking about the end of life
• why stopping treatment is not giving up
• hospice care -- what it is and when to start talking about it
• how to talk to children about the end of life

Running time: 34:05

Listen now or read the transcript

.

--The Mods

Brendatrue

Hi, Mods! Thanks for the podcast link. I'll check it out. I'm always interested in resources to assist people with expanding the death/dying conversation and their perspectives and planning for end of life care, and I thank BCO for offering a resource in that direction

Brendatrue

Here's an NPR story about the development of the Bios Urn. The story also refers to other products designed to make use of cremains as well as changing perspectives about death and western societies' mainstream aversion to talking about death.

http://www.npr.org/2017/08/13/542809000/ashes-to-a...

momallthetime

Lynne that was so special of you to look for this. I remember so clearly when she posted this. What a nice gesture to share.

Lita57

I will be transitioning soon.

Over20 LARGE brain mets. Total brain radiation will onLY give me about a month or two, and I'll be ver fatigued and asleep most of the tiMe, just like AN and AD (names withheld out of respect).

I REFUSE to go out like that.

So, i will do what i caan 4 as long as i can. Been a good run...16 months.

Peace out, and my love to you all.

Dh will post when I transition...he has user name and p'word

Lita

D

Freya

Lita, words just seem inadequate. I hope you get to spend your time surrounded by your loved ones and when the time does come, your passing is peaceful.

You are a lovely woman and you will be missed.

wam

lita! I am devastated at your news. I don't post much but I read everyday to learn how to do this. I think it was Ebru who said dying is like riding a bike. We learn by doing. Lean into the experience. God is there

Please keep posting. Make a thread for yourself. I look for your posts first thing everyday. You are so wise. You have had fun anyway and I admire that. I wish you a long run of health on hospice.

Southernsurvivor

Lita,

I'm so very sorry to hear your news. I've always enjoyed reading your posts on these various threads and you have shed such light and wisdom. I pray that you find peace and comfort in hospice. Know we care.

ABeautifulSunset

here is the thread for Lita created by Kandy

https://community.breastcancer.org/forum/8/topics/...

GraceDD

I am so grateful and honored to find this thread, and to find others to connect openly with, about this topic. I too am scanning ahead, hoping to budget the needed assets for the journey ahead, assisted living, whatever. I have Gabapentin stockpiled for future pain (- It worked splendidly for a bone shatter). Can't talk about ANY of this with DH (I hope that means my Dear Husband!), who is quite healthy. I want time to meditate - instead of 16-hour a day Protocol (alternative treatment) every day. I'm tremendously inspired by your beautiful shares, and long journeys! You live in my heart. Love & Light, Diane