If I stop treatment does it mean I stop trying? If I stop trying does it mean I’ll start dying? I don’t want to die.
When faced with the above considerations, what decision do we make? How do we face the realization “I am going to die”?
Most of us go through life with the notion that other people die, not me or anyone close to me. Yet for all of us that bubble of illusion will someday break.
If we don’t die a fast death, by accident (no warning), we will die a gradual death from disease or old age. Either way someday all of us will die. How do we prepare for that day? Do we or should we prepare for that day?
I don’t have a one size fits all answer to those questions. Each of us will prepare for our eventual (assumed gradual) death in our own way, according to our personality. Doer personalities will have their advanced directives and Five Wishes completed and filed away. They will have talked with their family and significant others years before that information will be needed. A procrastinator personality may never address their advanced directives even though they may have given it some thought. An easy going personality ——it goes on and on. Think about who you are and how you are addressing your eventual death.
I have found that being old has brought the idea of death closer to my consciousness. How much longer do I have here? Does this mean my headache is really a brain tumor? I forgot the name of my old friend. Do I now have dementia starting? More of my friends are getting ill, dying. “How are you doing?” has become part of our conversations.
What I have learned in all the years of being up close, but not personal with dying and death is that everybody dies and most people don’t want to. I learned that we will die the way we have lived and according to our personality if it is a gradual death. I’ve learned we don’t die like in the movies and no one is ever “prepared” (for their own death or the death of someone close). I’ve learned that taking care of someone as they approach the end of life is different than taking care of someone who is going to get better. I’ve learned that most doctors are uncomfortable addressing the unfixable.
When faced with the option of no option most of us will try to find an option anyway, anything to the alternative of the finality of death. Example: Mom in the ICU, non responsive, on a ventilator, IVs, doctors asking about a Do Not Resuscitate order and the family saying "Nooooo."
I think the reason hospice gets their referrals in the weeks before death rather than months is because hospice implies death will come. We look for and hope for a fixable option because the unfixable option is unacceptable. Death is never okay for someone I care about, NEVER.
All this said, hopefully, we will take the opportunity to say good-bye, to stop desperate treatments, to accept comfort care, to use our time more wisely in this final chapter of our lives that we will all write.
Something More About... If I Stop Treatment Will I Start Dying?
My End of Life Guideline Series Bundle takes patients and families from diagnosis to the grief journey. What to expect during the dying process, how to care for yourself for the months after you've been told by your doctor that treatments are no longer working, to understanding the use of narcotics at end of life and beginning the grieving process is covered in these little booklets.
5 comments
Elizabeth
Hello Barbara, my husband has aggressive cancer and he is facing metases on numerous fronts, his prognosis is dire. He is a “doer” profile and pragmatic. I saw you reference “ Five Wishes,” what is that? Do you also have materials, guidance for the loved ones , caregivers for the person suffering this terrible disease. I seem to be having a harder time with him passing away than he does. Thank you for your advice
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BK Books replied:
Hi Elizebeth, to answer your questions: here is a link to Five Wishes https://www.fivewishes.org/five-wishes-sample.pdf. I have a booklet A Time To Live which is for a person with a life threatening illness. I have a book By Your Side for you, the caregiver. Here is a link to my website then go to shop, shop products and scroll to the two books. https://bkbooks.com/. My blessings are with you and your husband as you travel this life journey. Barbara
Hello Barbara, my husband has aggressive cancer and he is facing metases on numerous fronts, his prognosis is dire. He is a “doer” profile and pragmatic. I saw you reference “ Five Wishes,” what is that? Do you also have materials, guidance for the loved ones , caregivers for the person suffering this terrible disease. I seem to be having a harder time with him passing away than he does. Thank you for your advice
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BK Books replied:
Hi Elizebeth, to answer your questions: here is a link to Five Wishes https://www.fivewishes.org/five-wishes-sample.pdf. I have a booklet A Time To Live which is for a person with a life threatening illness. I have a book By Your Side for you, the caregiver. Here is a link to my website then go to shop, shop products and scroll to the two books. https://bkbooks.com/. My blessings are with you and your husband as you travel this life journey. Barbara
Hanne Jensen
Hi Barbara,
Just a note of appreciation for your newsletter. Thank you for finding new and fresh ways to address the sensitive and unique challenges around death. As a retired hospice nurse, it is sometimes difficult to remember how scary and lonely an experience dying can be. I often forward your advice and use your words when I am asked for guidance. Please continue your good work.
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BK Books replied:
Hi Hanne, glad you are finding my blog articles helpful. Thanks for reaching out. Blessings! Barbara
Hi Barbara,
Just a note of appreciation for your newsletter. Thank you for finding new and fresh ways to address the sensitive and unique challenges around death. As a retired hospice nurse, it is sometimes difficult to remember how scary and lonely an experience dying can be. I often forward your advice and use your words when I am asked for guidance. Please continue your good work.
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BK Books replied:
Hi Hanne, glad you are finding my blog articles helpful. Thanks for reaching out. Blessings! Barbara
Norma Jean Galiher
Do you ship these booklets to the U.K.?
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BK Books replied:
Hello Norma Jean,We do not currently ship to the U.K. Our End of Life Guideline Series is available digitally on Amazon U.K. and I believe there are sellers for the physical books on there as well.You can purchase them at this link https://www.amazon.co.uk/End-Life-Guideline-Compilation-2012-08-02/dp/0983784140/ref=sr_1_1?crid=2EFCHJQ9K5MUE&keywords=end+of+life+guideline+series&qid=1657774113&sprefix=end+of+life+guideline+series%2Caps%2C196&sr=8-1Thank you for your interest in our end of life education materials.
Do you ship these booklets to the U.K.?
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BK Books replied:
Hello Norma Jean,We do not currently ship to the U.K. Our End of Life Guideline Series is available digitally on Amazon U.K. and I believe there are sellers for the physical books on there as well.You can purchase them at this link https://www.amazon.co.uk/End-Life-Guideline-Compilation-2012-08-02/dp/0983784140/ref=sr_1_1?crid=2EFCHJQ9K5MUE&keywords=end+of+life+guideline+series&qid=1657774113&sprefix=end+of+life+guideline+series%2Caps%2C196&sr=8-1Thank you for your interest in our end of life education materials.
Marilyn Swanston
I recommend everyone get these booklets. They were so very helpful when my husband was diagnosed with glioblastoma. They were comfort to me throughout the 6 months. I knew exactly what to say and do during the process. I was so relaxed at his passing I held him and told him how much I loved him and reassured him I would be ok. He whispered “I love You” and made the transition over. I was able to remain calm and held him until his body cooled took my time with him and then made the necessary calls. We had 62 years together and I am very grateful I obtained your booklets. They are now waiting to go to my children as I am 80 and I want them prepared. 💕💕💕
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BK Books replied:
Hi Marilyn, thank you for sharing your beautiful, final experience with your husband with me. I hope you have an advanced directive and durable medical power of attorney signed to guide your children when it is your turn. Blessings to you and your family. Barbara.
I recommend everyone get these booklets. They were so very helpful when my husband was diagnosed with glioblastoma. They were comfort to me throughout the 6 months. I knew exactly what to say and do during the process. I was so relaxed at his passing I held him and told him how much I loved him and reassured him I would be ok. He whispered “I love You” and made the transition over. I was able to remain calm and held him until his body cooled took my time with him and then made the necessary calls. We had 62 years together and I am very grateful I obtained your booklets. They are now waiting to go to my children as I am 80 and I want them prepared. 💕💕💕
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BK Books replied:
Hi Marilyn, thank you for sharing your beautiful, final experience with your husband with me. I hope you have an advanced directive and durable medical power of attorney signed to guide your children when it is your turn. Blessings to you and your family. Barbara.
Sandra Traviati
Hello,
Can you please advise when these books may be accessible in Australia please?
Many thanks,
Sandra
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BK Books replied:
Hello Sandra,Thank you for your interest in our end of life education materials. We do not ship to Australia at this time but you can purchase a digital version of The End of Life Guideline Series on the Australian Amazon.Here is a link https://www.amazon.com.au/End-Life-Guideline-Compilation-Booklets-ebook/dp/B008PWXSH2/ref=sr_1_1?crid=1KKNLZ3PW16W7&keywords=end+of+life+guideline+series&qid=1657757966&sprefix=end+of+life+guideline+series%2Caps%2C45&sr=8-1 Warmly, Jacquelyn
Hello,
Can you please advise when these books may be accessible in Australia please?
Many thanks,
Sandra
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BK Books replied:
Hello Sandra,Thank you for your interest in our end of life education materials. We do not ship to Australia at this time but you can purchase a digital version of The End of Life Guideline Series on the Australian Amazon.Here is a link https://www.amazon.com.au/End-Life-Guideline-Compilation-Booklets-ebook/dp/B008PWXSH2/ref=sr_1_1?crid=1KKNLZ3PW16W7&keywords=end+of+life+guideline+series&qid=1657757966&sprefix=end+of+life+guideline+series%2Caps%2C45&sr=8-1 Warmly, Jacquelyn