Keeping the Secret of a Terminal Prognosis: Finding the Courage to Tell Those You Love

If you want to keep a secret, you must also hide it from yourself.  ~ George Orwell in 1984

A reader writes: I am married and the mother of three children. I have been told by my doctors that I have a rare and terminal illness. My husband and children love me and need me, and they do not know that I am dying because I cannot tell them.

How can I tell the ones who count on me that I won’t be here for them? How can I tell them that I brought them into the world with love and tears, and now I’m leaving?

My husband and children don’t know. I won’t let them know.

Caregiving and Hospice, December 9 - December 15, 2018

Best selections from Grief Healing's Twitter stream this week:

What Is The Advance Directive For Dementia?  http://j.mp/2BiNQLk « Seven Ponds Blog

Caregiver Checklist: 5 Things to Prepare When Caring for a Loved One at Home, http://bit.ly/2NzNMem « Hospice Red River Valley

Dr. Ira Byock Says Words are a Powerful Tool That Shape How We View Serious Illness, http://j.mp/2LfXMdf « CSU Institute for Palliative Care

Caregiving and Hospice, June 12 - June 18, 2016

Best selections from Grief Healing's Twitter stream this week:

New: Chat for Those Caring for a Family Member Who Had a Stroke,  http://j.mp/1V1MNQm « CareGiving.com

It's Time to Train All Doctors on How to Talk to Patients About End-of-Life Care, http://j.mp/1YuwZLR « The Huffington Post

Leaving With Love: The Difference Palliative Care Makes, http://j.mp/1tyJomo « Media Planet Cancer Care

Caregiving and Hospice, April 12 - April 18, 2015

Best selections from Grief Healing's Twitter stream this week:

Healthy Dying... An important part of healthy aging, http://j.mp/1PUJZp9 « GeriPal

A choice for dying: Not a perfect ending, but a better ending, http://j.mp/1FFRGan « SF Gate

5 Questions for Ira Byock, http://j.mp/1OwgVm5 « Spirituality and Health

Keeping The Secret of A Terminal Prognosis

A reader writes: I am married and the mother of three children. I have been told by my doctors that I have a rare and terminal illness. My husband and children love me and need me, and they do not know that I am dying because I cannot tell them. How can I tell the ones who count on me that I won’t be here for them? How can I tell them that I brought them into the world with love and tears, and now I’m leaving? My husband and children don’t know. I won’t let them know.

Why should they feel this? I never lied to them. I didn’t want to share this with them because I am not strong enough to deal with their grief. I feel their love. I need it and it gives me strength. But just as I spent a lifetime helping and hand-holding, I can’t let go of my love for them or my responsibility to them long enough to let them grieve. I know I am being selfish. But I am dying. Please believe me when I say that I don’t want to leave. I want to see my grandchildren born, I want to see my youngest graduate from college, I want to hold the one I raised who grew up, left home and sent me emails and letters the whole time she has been gone. I love my family and would do anything to keep them from this pain. I know the pain. I have tried to keep it from them out of love. I don’t want my children or my husband to see or feel this pain.  Read on here >>>

Caregiving and Hospice, September 22 - September 28, 2013

Best selections from Grief Healing's Twitter stream this week:

Outstanding! Ambassadors for Hospice, http://j.mp/1dO8dxg « Caring with Confidence

Book Review: “The Best Care Possible” by Ira Byock, M.D., http://j.mp/193iFBE « SevenPonds Blog

Commonly held myths about end-of-life issues http://j.mp/17cwKdw « Harvard Health Publications

Caregiving and Hospice, June 2 - June 8, 2013

Best selections from Grief Healing's Twitter stream this week:

Cases: What Do I Say To My Kids? http://j.mp/14J79E9 « Pallimed: A Hospice and Palliative Medicine Blog

8 Great Tips For Long-Distance Caregiving, http://fb.me/1Lk09NFcz « Huffington Post

Important! The Balancing Act: Retirement Savings, College Funding and Caregiving, http://ow.ly/lONha « A Place for Mom

Hospice isn't for "when nothing can be done;" it IS the something that can be done, http://bit.ly/11wKHQB « The Bowie Blade-News

LIVE Without Pain http://j.mp/GGtiJY « Caring Connections - NHPCO

Caregiving and Hospice, February 10 - February 16, 2013

Best selections from Grief Healing's Twitter stream this week:

Official statement: San Diego Hospice intent to close, http://j.mp/VnkTGA

Hospice pioneer reflects on San Diego Hospice closure, http://j.mp/VmYh6C via @rhgerard

Former San Diego Hospice RN asks, "Since When Did the Government Expect Precision in Deciding Death?" http://bit.ly/XcCNbK via @MDelaCalzada

Prognosis: Weeks to Months – On the End of an Era at San Diego Hospice, http://j.mp/VW3XXs « PALLIMED

Coming to Grips with End-of-Life Care, http://j.mp/WwgihT « TEDMED Great Challenges

Caregiving and Hospice, November 4 - November 10, 2012

Best selections from Grief Healing's Twitter stream this week:

• Keeping Intimacy Alive in caregiving, http://j.mp/SWQDic

• Checklists for all your caregiving needs, http://owl.li/f7EX1 via @AgingWisely

• November is National Hospice and Palliative Care Month, http://bit.ly/Tz3d4V via @JNJComm @JNJVideo

• Wow. New PSAs about caregiving are unsettling, but AARP says that's the point! http://ow.ly/f1XEA via @hwcaregivers

• What Henry Winkler wants you to know about stroke caregiving, http://j.mp/UbFFBp « Caring.com

Caregiving and Hospice, August 5 - August 11, 2012

Best selections from Grief Healing's Twitter stream this week:

• Good practical sense tips on how to "Take Your Oxygen First" when caregiving, http://fb.me/2lKZSLhlQ via @LeezaGibbons
  
  
• Medical student reflects on end of life care, http://lnkd.in/yQFqQK via @robingsmith
  
  
• Dr. Ira Byock on end-of-life care, http://bit.ly/MYtxlP via @hospicepharmacy
  
  
• Good things in small furry packages: even Guinea pigs can do hospice, http://bit.ly/P9Lxhk #pettherapy via @suncoasthospice
  
  
• Twitter Q&A: Join @AARPFamily for a discussion about caregiving resources on Thursday, August 16 at 2pm ET – Use Twitter hashtag #caresupport to ask questions

Caregiving and Hospice, April 29 - May 5, 2012

Best selections from Grief Healing's Twitter stream this week:

• No Kids, Who Cares? Support group for childless adult caregivers, http://aarp.us/IVeJXG via @PLKCoffeeTalk
  
  
• Two Relationships in One http://ow.ly/aFgaf from @TheBowTieGuyvia @Pathways4Aging
  
  
• A Life of Service: On Tuesday, May 8 a wonderful free teleconference for hospice staff, http://j.mp/K7kdfj  via  @hospicejourney
  
  
• Bibliography for Music Therapy in Hospice Palliative Care, http://bit.ly/KvV36K by @VirtualHospice
  
  
• Cat Practice Develops Hospice Program for Aging Felines, http://bit.ly/L4F05o from @equestrianangel via @hospice_news
  
  
• Hospice Therapy Dog 'Spirit', Once Abused, Eases Pain for Sick, Dying, http://abcn.ws/IAkOGM via  @hospicepharmacy
  
  
• Reaffirming Hospice Campaign - The National Hospice and Palliative Care Organization, http://j.mp/K7eKVL
  
  
• Her cat's presence brings love, comfort to woman dying in hospital, http://j.mp/K7Qdjy via @David_McElroy
  
  
• Survey reveals "startling findings" about what dying see, hear in final hours, http://goo.gl/PYB7d by @DyingMatters
  
  
• We are all healers, all in need of healing, http://j.mp/IrfiCx via @Gilchrist_News
• Dear Abby recommends hospice and offers NHPCO as resource, @RainbowHospice via @NHPCO_news
  
  
• To survive with cancer, you need to accept that you are going to die, http://j.mp/yc1EHF
  
  
• Must read: Terminal breast cancer leads woman to pick palliative care instead of aggressive therapy, http://j.mp/Iyvhkq
  
  
• Making caregiver respite last once we're back in the throes of caregiving, http://ow.ly/aDqSD by @AmyGoyer via @AARPfamily
  
  
• Caregiving with Siblings: 4 Tips to Gain Support of Siblings, http://see.sc/gvrFEx via @hoppy212ny
  
  
• Innovative approach: In the Backyard, Grandma's New Apartment, http://j.mp/Ktd7ze via http://NYTimes.com
  
  
• Feature-Matching Products to your Client’s Needs « EmpowerAbility®, http://j.mp/Irkrym
  
  
• 5 Playlists Every Caregiver Should Have on Their iPod « Soundscape, http://j.mp/IrjNAZ
  
  
• Finding Pride in Caregiving: LGBT Caregivers Answer the Call from the Community, http://ow.ly/aDms9 via @ASAging
  
  
• Caregiving with Siblings: Reducing sibling tensions in family caregiving http://ow.ly/axBLQ via @HISCNewportNews
  
  
• Even Guinnea Pigs can be Hospice Therapy Pets!http://pojonews.co/KuB4KI via @hospicepharmacy
  
  
• Really helpful! Breaking bad news http://bit.ly/KvdGgh via @KSkipperFoster
  
  
• Hospice nursing is perfect love, http://bit.ly/IdXHTH from @hospicepharmacy via @AgraceHospice
  
  
• Beautiful! Patient gives hospice nurse an unexpected gift, http://bit.ly/Ij7hzB from @ctffox via @hospicepharmacy
  
  
• Cheryl Eckl reviews Ira Byock's latest book, The Best Care Possible, http://j.mp/IMU0my
  
  
• Loyal Companion Helps a Veteran With PTSD, http://NYTimes.comhttp://j.mp/KkkVTd

Caregiving and Hospice, March 18 - March 24, 2012

Best selections from Grief Healing's Twitter stream this week:

• Touching! She's Gone Missing,  http://j.mp/GRG9MF via  http://NYTimes.com
  
  
• I've Accepted I'm Dying. Now What? http://onforb.es/GIk8Mm by @CarolynMcC via @Forbes
  
  
• Research, funding and politics: Alzheimer's: Awareness Isn’t Enough, http://j.mp/GJt2bf by @stangoldberg
  
  
• Fatigue Strikes Family, Even Animal Caregivers, http://bit.ly/GPunzz from @Profmicro via @YahooNews
  
  
• Updated guide to public benefits, http://ow.ly/9MyAA via @AARPFamily and @amygoyer

Advance Directives

[Reviewed and updated March 28, 2022]

In a segment entitled The Cost of Dying, 60 Minutes featured Ira Byock, MD, palliative care physician and author of the acclaimed books Dying Well and The Four Things That Matter Most. In this New Health Dialogue Blog post, Dr. Byock offers his thoughts on advance directives, arguing that physicians should be discussing these matters with all their adult patients, “whether these conversations are reimbursable or not.” See Health Care: Time for a Serious Discussion.

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© by Marty Tousley, RN, MS, FT, BC-TMH