FOUR “NAUGHTIES” FOR END OF LIFE article by End of Life Expert, Barbara Karnes, RN

FOUR “NAUGHTIES” FOR END OF LIFE

Keeping Secrets: “Don’t tell mom.” Don’t say that she could die.” Don’t talk to her about “sad” things.” “Pretend everything is going to be alright.”  Mom lives inside of her body. She knows if it is preparing to die. She may play your game of pretending but she knows. She is...
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FOUR “NAUGHTIES” FOR END OF LIFE

In this time of Santa we hear the saying “naughty and nice”. Here are four “naughties” that can be turned into “nice”, enhanced experiences common to end of life.

    1. Keeping Secrets: “Don’t tell mom.” Don’t say that she could die.” Don’t talk to her about “sad” things.” “Pretend everything is going to be alright.”  Mom lives inside of her body. She knows if it is preparing to die. She may play your game of pretending but she knows. She is frightened, you are frightened, but now you are both frightened alone. By talking, by sharing, you are able to support each other, love each other during this stressful, sad time.
    2. Delaying beginning hospice services: We associate hospice care with dying care; when in fact hospice care is living care. Hospice helps people live the best they can while they can’t be fixed, while their body is shutting down. If you wait until a person looks like they are dying they probably have one to three weeks to live. If you wait you will have missed out on all the guidance, the help that hospice could have provided in those months before death. Help with caregiving, help financially, help with knowledge and help with emotional support. You will miss out on guidance during one of the most challenging times in a person’s life—the time a loved one is dying.
    3. Thinking you can care-give alone. It takes a village as the saying goes. Caregivers become exhausted, frightened, and are not prepared for the physical, let alone the emotional toll, of caregiving. Being “the little red hen”, saying  “I can do it myself”, leads to burnout, anger, and frustration during a time when we want to be loving and supportive. It takes a village!
    4. Not talking about the person who has died: In our grieving we sometimes think, particularly during the holidays, that we just make people uncomfortable when we talk about someone who has recently died. When a recent death has occurred everyone close to that person is, in their grief, thinking about the huge space that is not filled. Talk about it. “Dad would have loved —“, address the elephant in the room, set a place at the table and put a picture instead of a plate. Be creative in ways to include our missing special person. 

Something More... about FOUR NAUGHTIES FOR END OF LIFE 

To understand more fully the four naughties and how to care for a dying loved one, I suggest you look at my booklets. Short, concise, with no medical jargon to cause confusion, they are available in numerous languages. I have put together a bundle of the five necessary booklets for families and patients facing end of life called the End of Life Care Guideline Series.  

 

5 comments

Martha Drummond

About three weeks before my mother died, she said to me, I think your sister thinks I am dying.
I asked my mother, what do you think, she replied,
I am tired, but I don’t think Cathy (the other sister) is ready.
What perception.
Cathy did get ready to say, good-bye. And even told me. So we all were ready when the end came. It is nice to talk about it.

About three weeks before my mother died, she said to me, I think your sister thinks I am dying.
I asked my mother, what do you think, she replied,
I am tired, but I don’t think Cathy (the other sister) is ready.
What perception.
Cathy did get ready to say, good-bye. And even told me. So we all were ready when the end came. It is nice to talk about it.

Daniel Mistichelli

These “Four Naughties” are spot on. When my wife was diagnosed with early onset Alzheimer’s we were guilty of the first naughtie. While my wife and I spoke about things, those same topics were taboo for our daughters. We finally learned to talk, but it took a long time. I can attest to the resources provided by hospice. My wife was enrolled for the last two years of her life and they made it so much better. One aspect many don’t think about is that a lot of costs previously paid by the family were covered by hospice. The support of my wife’s team made life easier because we could focus on her and had a support group available.

These “Four Naughties” are spot on. When my wife was diagnosed with early onset Alzheimer’s we were guilty of the first naughtie. While my wife and I spoke about things, those same topics were taboo for our daughters. We finally learned to talk, but it took a long time. I can attest to the resources provided by hospice. My wife was enrolled for the last two years of her life and they made it so much better. One aspect many don’t think about is that a lot of costs previously paid by the family were covered by hospice. The support of my wife’s team made life easier because we could focus on her and had a support group available.

Emily White

I just love what you wrote . It helped me personally and I will use this in my work to help others . Thank you Barbara .

I just love what you wrote . It helped me personally and I will use this in my work to help others . Thank you Barbara .

Judy G

Amen, Amen, Amen! As a hospice nurse for 23 years, I have seen all of these. Some of these I saw in my own family. Thanks for all your guidance! I gave out many copies of “The Blue Book,” as we called “Gone from my Sight.”

Amen, Amen, Amen! As a hospice nurse for 23 years, I have seen all of these. Some of these I saw in my own family. Thanks for all your guidance! I gave out many copies of “The Blue Book,” as we called “Gone from my Sight.”

Mary Pedersen

Dear Barbara,

Thank you so much for your caring and helpful advice (the 4 Naughties.) It truly has comforted and helped me accept the passing of my husband.

Dear Barbara,

Thank you so much for your caring and helpful advice (the 4 Naughties.) It truly has comforted and helped me accept the passing of my husband.

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