We've Lost Our Role Models for How to Die and How to Give Care to Those Who are Dying

We've Lost Our Role Models for How to Die and How to Give Care to Those Who are Dying

“We’ve lost our role models on what it’s like to die, and we’ve lost our role models on how to take care of someone who is dying.” What does she mean? What are we missing?...
The EKR Foundation's Community Outreach Program - "The Grief You Don't Know Until You Do" Reading We've Lost Our Role Models for How to Die and How to Give Care to Those Who are Dying 1 minute

In this conversation with long-time hospice nurse and educator Barbara Karnes, she states: “We’ve lost our role models on what it’s like to die, and we’ve lost our role models on how to take care of someone who is dying.” What does she mean? What are we missing?  What would be the benefit of learning more, for the dying as well as for those who are caregiving and grieving? Barbara shares her thinking on these matters and so much more, including additional thoughts about her personal loss of her husband one year ago.

Resources mentioned in this podcast:

The End of Life Guideline Series

Always Offer, Never Force: Food at End of Life

The Final Act of Living: Reflections of a Long-Time Hospice Nurse

All resources available at www.bkbooks.com

1 comment

Katharine Halpin

My wife of 42 years was diagnosed in 2015 and is now in the last stages of Alzheimer’s. I’ve done a ton of grief work and feel somewhat prepared. A week ago today she caught the flu from me and had horrible breathing and coughing scared me so much I reached out to the hospice nurse on call and our niece who is a physician. She got some heavy drugs (prednisone and powerful cough syrup) and is much better. But since she has zero physical ailments, it will likely be the flu or something that comes up and takes her. My concern now is her suffering. I don’t want her to suffer. The eating guidance is very helpful. What else should I do at this stage?
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BK Books replied:
Hi Katharine, sounds like you’re doing a wonderful job of caring for her. Since her only diagnosis is alzheimers I do not see her future as being physically painful. She may reach a point where she doesn’t swallow, just holds the food in her mouth. At that point artificial feeding can introduce suffering. The good thing is you don’t have to begin artificial feeding. She will probably eat less, sleep more. You may find my booklets How Do I Know You, Gone From My SIght *and The Eleventh Hour *helpful. Blessings! Barbara

My wife of 42 years was diagnosed in 2015 and is now in the last stages of Alzheimer’s. I’ve done a ton of grief work and feel somewhat prepared. A week ago today she caught the flu from me and had horrible breathing and coughing scared me so much I reached out to the hospice nurse on call and our niece who is a physician. She got some heavy drugs (prednisone and powerful cough syrup) and is much better. But since she has zero physical ailments, it will likely be the flu or something that comes up and takes her. My concern now is her suffering. I don’t want her to suffer. The eating guidance is very helpful. What else should I do at this stage?
———
BK Books replied:
Hi Katharine, sounds like you’re doing a wonderful job of caring for her. Since her only diagnosis is alzheimers I do not see her future as being physically painful. She may reach a point where she doesn’t swallow, just holds the food in her mouth. At that point artificial feeding can introduce suffering. The good thing is you don’t have to begin artificial feeding. She will probably eat less, sleep more. You may find my booklets How Do I Know You, Gone From My SIght *and The Eleventh Hour *helpful. Blessings! Barbara

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