THEY’RE DYING

end of life

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READ life’s fine print

 

ANTICIPATORY GRIEF

[ an-tis-uh-puh-tawr-ee, -tohr-ee ][ greef ]

verb

The total set of cognitive, affective, social, and cultural reactions to expected death by the dying and their family.

antonyms

talking, communicating, sharing fears and wishes, making plans.

in use

  1. Accept that this is normal.

  2. Acknowledge losses.

  3. Connect with others.

examples

The conversation project

It’s time to share the way we want to live through the end of our lives. And it’s time to communicate about the kind of care we want and don’t want for ourselves.

THE ENDWELL PROJECT

a website dedicated to the belief that all people should experience the end of life in a way that matches their values and goals. When faced with issues of mortality, we often suffer needlessly for a variety of reasons, from cultural and clinical to matters of access. End Well brings together a multidisciplinary community that unites design, technology, health, policy and activist initiative to create a cultural shift to transform our thinking about serious illness, caregiving, grief and the end of life.

They be illin

Language tips on how to talk to people (your parents/friends) who don’t fully get that they are sick or having low key demensch.

Serious illness convo talking points

“I accept my fate, I accept my life.  I accept my shortcomings, I accept the struggle.  I accept my inability to understand.  I accept what I will never become and what I will never have.  I accept death and I accept life.  I have no profound realizations — it is blind acceptance and some kind of faith.”

-Keith Haring, Journals, February 15, 1989

NOT REALLY

NOT REALLY


LEAVE YOUR LEGACY

ALL THINGS MUST PASS

 

LIFE REVIEW

LET GO OF REGRETS

“Daddy”
”Yes, son.”
”What does regret mean?”
”Well, son, a funny thing about regret is that it’s better to regret something you have done than something you haven’t done”

-BUTTHOLE SURFERS “SWEAT LOAF”

5 REGRETS OF THE DYING
1. I wish I'd had the courage to live a life true to myself, not the life others expected of me.
2. I wish I didn't work so hard.
3. I wish I'd had the courage to express my feelings.
4. I wish I had stayed in touch with my friends.
5. I wish that I had let myself be happier.

DO IT HERE

STANFORD MEDICINE LIFE REVIEW LETTER

LEGACY PROJECT / ETHICAL WILL

SHARE YOUR MEMORIES, ADVICE, AND VALUES FOR OTHERS.

DO IT HERE

STORY CORPS
SHARE YOUR STORY TO CREATE A VALUABLE ARCHIVE FOR FUTURE GENERATIONS.

MEMORIES WORTH TELLING
FAMILY AND PERSONAL LEGACY BOOKS

ETHICAL WILL TEMPLATE

SOCIAL MEDIA WILL TEMPLATE
EXPRESS WISHES FOR YOU DIGITAL LEGACY

CARING INFO FUNERAL WISHES FORM
HELPS YOU FIGURE OUT WHAT YOU WANT


being there

caregiving

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TIPS

holding space

to patiently support someone during a change/loss/transformation without taking their power away, shaming them, or overwhelming them.

unconditional positive regard

accepting and supporting another without evaluating or judging them.

CAREGIVING 101

GIVING A SHIT: PRO EDITION

caregiving SUPPORT
mindful family caregiving and emotional resilience

DIGNITY CHECK
CHECK IN ON HOW THEY’RE DOING WITH THESE QUESTIONS.

 

Palliative and hospice care

What’s the diff?

 

WHO CARES?

death doulas
provide support at the end of life (EOL).

via the ny times

Death and Taxes
Experiences of end of life and advice from hospice caregivers.

VIA THIS AMERICAN LIFE

 

END OF LIFE RESOURCES

Carezone App
Keeps track of medications and health info.

caring info
make informed decisions about care.

Roundglass EOL
End of Life Collective for resources and guidance.

Medisafe App
Keeps track of medications.

Caring Village
Everything you need for End of Life.

national end of life doula alliance
find a doula or become one

international end of life doula association
doula directory and resources

hospice foundation of america
kinda has everything you need to know here just in case this site is too weird.

racial disparity, challenges and cultural barriers in end of life care

Individuals from diverse backgrounds may find it challenging to talk to health care providers about treatment options

african american communities

asian and latino communities

care and culturally diverse communities

The African-American Spiritual and Ethical Guide to End-of-Life Care

it’s your life

PHYSICIAN ASSISTED DYING (PAD)
up to date state by state info.

Death with dignity
support the freedom to choose your end of life option.

palliative sedation
a rose by any other name


 ④ the LETTING GO

what happens and what to do at the end

 

NEar death awareness

NDA is a special knowledge of the dying when death is near, often a few weeks to days away. caregivers and loved ones may confuse it with delirium and miss the clues or amp up medication when the dying communicate symbolically in a determined way their need to tie up loose ends, prepare for their journey, make sure the people they leave behind will be okay, and acknowledge they are dying. it might include:

  • Speaking with deceased individuals/relatives

  • Speaking symbolically about a trip or upcoming travel

  • Having a clear sense that their death is near

NOTE: NEAR DEATH AWARENESS IS DIFFERENT THAN NEAR DEATH EXPERIENCE.

HOLD a VIGIL

a vigil is when you accompany someone in the transition from life to death. it might include:

  • Sitting together

  • Talking and listening

  • Sharing silence

  • listening to music

  • reading

  • holding hands

VIGIL CHECKLIST


PBS documentaryinto the nightportraits on life and death

PBS documentary

into the night

portraits on life and death

DO NOT GO GENTLE
INTO THAT GOOD NIGHT

BY DYLAN THOMAS

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

they died