(Barbara Karnes, RN, is an award-winning end-of-life educator, award-winning nurse, 2018 National Hospice and Palliative Care Organization Hospice Innovator Award winner, and 2015 International Humanitarian Woman of the Year. This article first appeared on Barbara’s blog and is reposted with permission.)
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I hear, “Don’t tell Mom,” way too frequently. Mom has a life-threatening illness or may even be showing signs of approaching death, and her family says to me as I walk in the door, “Don’t tell Mom.” They want to protect her. They don’t want to worry her or scare her. So everyone is cautioned to play the game of, “Mom is going to get better.”
Here are some things to think about in regard to not being honest with Mom:
First and foremost, she knows. She lives inside of her body and she knows on many levels how serious her medical condition is. She is frightened, concerned, and now very much alone as she protects her family by playing their game.
Mom and significant others are missing an opportunity: the opportunity to show love, to talk, to share. The opportunity to make living the best it can be in the time left.
As the story of the optimist and the pessimist goes, there is a stable full of —-. The pessimist only sees the —-, whereas the optimist sees the gift, thinking there must be a pony in there somewhere. This gift in our case is a gift of time. Time to do and say all that needs to be done and wants to be said. Time to see those out-of-town relatives. Time to discuss end-of-life plans and wishes. Time to go for a ride, to visit with friends, to speak from the heart.
Yes, there is discomfort in having “real” conversations, in saying all the unsaid. As a society, we play so many games – say what we don’t mean, do what we don’t want to do. This part of life’s adventure gives us the opportunity to put aside the games.
Everyone, including and perhaps even especially Mom, are going to be concerned and frightened about what the future is bringing. Through being open, sharing, together, and supportive of one another comes the opportunity to love each other.
Everyone has the right to be told once that they can’t be fixed. What they do with that information is up to them. But it is their choice to make, not ours, whether they are told.
When working with families who ask me not to tell Mom, I say that I won’t bring the subject up, but if she asks, I will talk about it. THEN I proceed to say to the family all that I have written above in the hope that I can show them why it is helpful, and actually comforting, to have open conversations and keep no secrets.
All this said, there is an exception: when dementia is present. If the person has memory issues and is not really in touch with their reality or ours, why give them a moment of anguish that they will promptly forget?
Something more about keep no secrets from those at end of life
When a person receives the diagnosis of a life-threatening illness, life as they know it ceases. They find themselves in uncharted territory with no script to follow. Too often, they withdraw from the world, as if they have already died. All activity becomes centered on their living with disease and its treatment. Fear and uncertainty replace confidence and self-identity. The joys of living are more or less put on hold while living as long as possible is pursued.
A Time to Live … honors whatever life prolonging choices are being made, while at the same time suggesting we look at the gifts life offers each day.
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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
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I’m very interested in The Good Death Society Blog.
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I think I’d still want to be told if I do have dementia. I’m not sure it would cause anguish, and on some level I might understand and heave a sign of relief. My plan is to exit before things get to that point. But that was the plan of a friend who had dementia and didn’t take action before ending up in a memory care unit where she kept asking me to help her end her life. I think she’d have been glad to know.
Of course people have the right to know they have a form of dementia. My late husband’s neurologist, associated with a good academic medical center, after very thorough testing that entailed three appointments), said to him, “You have frontotemporal degeneration, a form of dementia. But my nurse practitioner and I will do everything possible to keep you healthy and alive as long as possible.” And they did. Why aren’t people entitled to know the truth? People don’t lose that right just because they develop a disability or terminal condition. They can then make informed decisions about the treatments they want or don’t want, seek clinical trials (or not), get another opinion, etc.
Oh my gosh, Sue! You just made me realize my comment could be read completely differently than I meant it. I assumed I would have been told I had dementia (whether or not I could remember that), and meant that I would want to be told my life was ending. Thanks for your reply to mine!
Yes, I know, some people ARE still keeping secrets from mom. Hard to believe though. My wife’s aunt’s husband did that in the 1970’s. Kept it secret from the kids too, so they never got to say goodby. Poor woman. She had kidney cancer. Bad enough. Why add the burden of having to live the fantasy that she would get better? SHe couldn’t even say goodbye to her husband. Her sisters and their families knew and wanted to handle it differently but felt they were obligated to support the husband’s wishes. Terrible experience for everyone involved.
One’s life doesn’t end with a dementia diagnosis. My late husband lived with this diagnosis for about 9 years, 4 months (he spent 6 years, 4 months as a private-pay long-term care resident). I’ve had two friends with serious cancer that didn’t live that long. One had ovarian cancer and was told she’d die w/in 2 years. She lived for almost 4 years. Another friend developed colon cancer and was told that she’d probably die from it within 3 years because it wasn’t diagnosed early. She was willing to try clinical trials and lived for about 5 years.