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 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 replaces 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.
13 comments
My wife of 64 years " completed her work here on earth" one year ago. As forewarned, it was a difficult , FIRST, since I am still in, “her sainthood stage”. The thought occurred to me of a similar separation I had experienced. I am an Army veteran and had longed for my separation from the military life. So I chose to consider her ," Discharged from active duty". Very simple but helpful.
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BK Books replied:
Hi Ewing, thank you for sharing. Blessings to you. Barbara
This breaks my heart! I wish I would have been better equipped to take care of my mom and I wish I had more family in town that could have helped.
The cancer diagnosis came as a complete surprise and she died 5 months after.
She didn’t speak English very well, so I had to deal with all doctor appts etc.. she chose to not have any treatment but never really asked me about life expectancy or never really asked me too many details about her disease… I figured if she didn’t ask it meant she didn’t want to know. I guess I’ll never really know why she didn’t ask details.
For years we never talked about feelings, almost never said I love you.
We did talk about cremation and she signed an advance care directive but those discussions were brief and without any emotions.
I had no other family members in town and I think she choose to not tell anyone about her terminal illness in order to spare me from having to deal with very toxic and intrusive family members.
She was on hospice but the nurse didn’t speak English … again, my mom never really asked what the nurse said about life expectancy- but reading your post breaks my heart to think about how alone she must have felt.
I have a lot of trauma that I have yet to heal from and I just went into survival mode making sure she had what she needed, but I didn’t really take care of her emotionally. I feel so guilty!
We never had a talk to say goodbye and to talk about our feelings for each other… I took care of her and that’s how I showed my love.
One day as I was repositioning her before she went into unconsciousness she told me “I always loved you, even though I didn’t show it”. I answered “me too” and that was the end of our “feelings” talk.
I’m just heartbroken that neither of us could feel safe to show our feelings.
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BK Books replied:
Beatrice, You might write your mother a letter. Put all your thoughts, regrets, wishes, and tears on paper. Burn the letter and scatter the ashes to the wind. Let how well you live your life now be your gift of love and appreciation that you were unable to tell her when she was here. Blessings! Barbara
Dear Barbara,
I was just talking about this very thing yesterday with another end of life doula. Thank you so much – your posts are always so insightful and relevant. You confirmed that dementia is a case for making an exception. And just another thought – in spending time working with a palliative care team in India I learned that there might be very engrained cultural exceptions to “telling mom.”
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BK Books replied:
Hi Merilynne, Good to hear from you. Yes, look at culture but I’d still share the idea. Always, it is the family choice but I want them to have something to think about when making an important decision. Blessings to you in the good work you are doing. Barbara
Yes, yes, yes! Awareness allows dignity and important inner (and outer) emotional and spiritual work.
Thankyou, wise woman!
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BK Books replied:
Hi Deborah, I agree. Telling the truth about approaching death allows autonomy of our body and life. Not telling the truth or just omitting it robs a person of their gift of time. Blessings! Barbara
Truer words were never said Barbara. The dying deserve to know the truth so they can say their goodbyes and finish their life knowing they were able to do it on their own terms.
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BK Books replied:
Hi Dawn,Thank you. Blessings! Barbara
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