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
Ewing G.
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
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
Beatrice
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
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
Merilynne Rush
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
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
Deborah
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
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
Dawn Young
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
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
Mark
This is a good message and should be repeated.
My mother-in-law was diagnosed with a terminal condition, and upon the advice of her doctor, she wasn’t told she was dying. Her family wouldn’t tell her. It made me angry. I’m sure she knew. I want to know when it’s my time.
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BK Books replied:
Mark, so sad to hear her doctor didn’t tell her and advised others not to as well. Everyone has the right to be told at least once the seriousness of their situation. That doctor basically stole living opportunities from all of you. Blessings! Barbara
This is a good message and should be repeated.
My mother-in-law was diagnosed with a terminal condition, and upon the advice of her doctor, she wasn’t told she was dying. Her family wouldn’t tell her. It made me angry. I’m sure she knew. I want to know when it’s my time.
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BK Books replied:
Mark, so sad to hear her doctor didn’t tell her and advised others not to as well. Everyone has the right to be told at least once the seriousness of their situation. That doctor basically stole living opportunities from all of you. Blessings! Barbara
Kim Baker
I wish I knew these things when I went though the dying process with my mom. I told them I did not want the word hospice to be spoken in her presence.
It was probably a mistake on my part; I wish you were part of my hospice team as I had some tough times with caregivers. That’s been 3 years ago and I still re-live some of these things. My hope is that I can share what I learned with others so they can be at peace. I share your literature with everyone I know to help them through the process. Thank you for being an inspiration to so many on a subject not a lot want to address.
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BK Books replied:
Hi Kim, good for you for taking a challenging life experience and using the knowledge you gained to help others. Blessings to you in the good work you’re doing. Barbara
I wish I knew these things when I went though the dying process with my mom. I told them I did not want the word hospice to be spoken in her presence.
It was probably a mistake on my part; I wish you were part of my hospice team as I had some tough times with caregivers. That’s been 3 years ago and I still re-live some of these things. My hope is that I can share what I learned with others so they can be at peace. I share your literature with everyone I know to help them through the process. Thank you for being an inspiration to so many on a subject not a lot want to address.
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BK Books replied:
Hi Kim, good for you for taking a challenging life experience and using the knowledge you gained to help others. Blessings to you in the good work you’re doing. Barbara
Jo
Thank you for the reminder. The phrase of an elephant in the room.
I am a volunteer with Hospice volunteer and see this so often. I feel that this is a conversation we need to have with our loved ones, before there is anything reaches the stage of do we tell them or not. The wishes of our loved ones needs to be put on paper and signed and witnessed by a lawyer, pastor,etc.
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BK Books replied:
Hi Jo, you are so right. Everyone should have an Advanced Directive and a Durable Medical Power of Attorney—-before they need it. Blessings! Barbara
Thank you for the reminder. The phrase of an elephant in the room.
I am a volunteer with Hospice volunteer and see this so often. I feel that this is a conversation we need to have with our loved ones, before there is anything reaches the stage of do we tell them or not. The wishes of our loved ones needs to be put on paper and signed and witnessed by a lawyer, pastor,etc.
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BK Books replied:
Hi Jo, you are so right. Everyone should have an Advanced Directive and a Durable Medical Power of Attorney—-before they need it. Blessings! Barbara
Cindy
Some of the most precious moments one has with their loved one who is dying are when all the cards are on the table. No subject is out of bounds. Maybe some things need to be expressed, or forgiveness needs to be given, or sharing how much you love that person, or vice versa comes with a depth of feeling and meaning outside of the ordinary when it may be one’s last words or conversation. It’s a special time in that way. The tenderness and intimacy of those last hours/days/weeks can be soothing to your soul and also to the one that is leaving us. It brings closure. They are precious moments.
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BK Books replied:
Hi Cindy, beautifully said. Thank you for sharing. Blessings! Barbara
Some of the most precious moments one has with their loved one who is dying are when all the cards are on the table. No subject is out of bounds. Maybe some things need to be expressed, or forgiveness needs to be given, or sharing how much you love that person, or vice versa comes with a depth of feeling and meaning outside of the ordinary when it may be one’s last words or conversation. It’s a special time in that way. The tenderness and intimacy of those last hours/days/weeks can be soothing to your soul and also to the one that is leaving us. It brings closure. They are precious moments.
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BK Books replied:
Hi Cindy, beautifully said. Thank you for sharing. Blessings! Barbara
April
I couldn’t agree with you more! As a hospice aide, I get this issue on occasion, but thankfully not too often. In my opinion, the BS meter with a person who is dying is on high. They will know when you’re lying to them. They have a right to go through whatever emotions they are feeling about the situation. They have a right to be angry, sad, upset, relieved, and grateful. You are not protecting them by lying. You’re denying them the human right to finish their life the way they choose. Often, the person knows they are dying, but they don’t want to upset the other family member so they don’t say anything either. It’s just a whole lot of non-communication which isn’t good. Honest conversation is so very important. Not talking about it is not gonna keep it from happening.
Before I became a hospice aide with the company I am currently with, I was going to volunteer with a different company. I was told by the volunteer coordinator to never tell anyone I was with hospice. I told her I felt that was dishonest. I chose not to work for that company. The company I am with now honors the dying person’s Bill of Rights. I love my job and I’m proud of my company.
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BK Books replied:
Thank you, April, for sharing. I agree with you 100%. Blessings to you in the good work you’re doing. Barbara
I couldn’t agree with you more! As a hospice aide, I get this issue on occasion, but thankfully not too often. In my opinion, the BS meter with a person who is dying is on high. They will know when you’re lying to them. They have a right to go through whatever emotions they are feeling about the situation. They have a right to be angry, sad, upset, relieved, and grateful. You are not protecting them by lying. You’re denying them the human right to finish their life the way they choose. Often, the person knows they are dying, but they don’t want to upset the other family member so they don’t say anything either. It’s just a whole lot of non-communication which isn’t good. Honest conversation is so very important. Not talking about it is not gonna keep it from happening.
Before I became a hospice aide with the company I am currently with, I was going to volunteer with a different company. I was told by the volunteer coordinator to never tell anyone I was with hospice. I told her I felt that was dishonest. I chose not to work for that company. The company I am with now honors the dying person’s Bill of Rights. I love my job and I’m proud of my company.
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BK Books replied:
Thank you, April, for sharing. I agree with you 100%. Blessings to you in the good work you’re doing. Barbara
Cath.
Hi Barbara
Buried my mum may 8th.
2 weeks from when she entered the hospital.
Was not full cognitive but yet they told her.
Should have done so with a family member, she regresed rapidly, was with her until her final breath, glad she was not left on her own.
Until we meet again.
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BK Books replied:
Cath, I agree it would have been better to have told your mom when she had the support of family or even a friend. Being with her during her final moments was a gift for both of you. You may want to read my booklet My Friend, I Care to help you understand your grieving. Blessings! Barbara
Hi Barbara
Buried my mum may 8th.
2 weeks from when she entered the hospital.
Was not full cognitive but yet they told her.
Should have done so with a family member, she regresed rapidly, was with her until her final breath, glad she was not left on her own.
Until we meet again.
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BK Books replied:
Cath, I agree it would have been better to have told your mom when she had the support of family or even a friend. Being with her during her final moments was a gift for both of you. You may want to read my booklet My Friend, I Care to help you understand your grieving. Blessings! Barbara
Kris Lenz
Thank you for your sharing Barbara. I only wish you had brought up the issue of telling children when they are not getting better. I work with children and there are many parents out there who would benefit from these kind wise words from you in regards to their terminally ill children. It is a part of life that no one wants to know exists. Children sometimes die. Please include them and their parents in this discussion.
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BK Books replied:
Hi Kris, I don’t have knowledge regarding caring for children as end of life approaches. It is a specialty in itself. I would think a lot depends upon age and maturity but I am not one to advise. Blessings! Barbara
Thank you for your sharing Barbara. I only wish you had brought up the issue of telling children when they are not getting better. I work with children and there are many parents out there who would benefit from these kind wise words from you in regards to their terminally ill children. It is a part of life that no one wants to know exists. Children sometimes die. Please include them and their parents in this discussion.
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BK Books replied:
Hi Kris, I don’t have knowledge regarding caring for children as end of life approaches. It is a specialty in itself. I would think a lot depends upon age and maturity but I am not one to advise. Blessings! Barbara
Katy
This is a very informative article about a pertinent subject. Thank you for sharing
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BK Books replied:
Katy, You’re welcome. Blessings! Barbara
This is a very informative article about a pertinent subject. Thank you for sharing
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BK Books replied:
Katy, You’re welcome. Blessings! Barbara