Why Didn't They Tell Me?

I received the letter below. It is relatively long but is so pertinent to our health care system today that I am making it part of this blog.

Dear Barbara, Just read your book, “How Do I Know You? Dementia at the End of Life”, and what a Godsend this was. My mother just passed away after a "long goodbye." Looking back we think she began to show signs of dementia as far back as 10 years ago. In 2017 she spent a few months in assisted living and couldn't manage that, then ended up in a nursing home facility until she was hospitalized the last of November 2019 and then died on December 7, 2019. She was 81.

My two siblings and I were highly involved in her care. My brother is a pharmacist and was on top of all her medications and treatment. I was her court appointed guardian and advocated for her in numerous ways from the lighting in her room to the bruises on her arms from toilet transfer. We hired a personal caretaker to be with her when we weren't there. Linda saw that she had good days...taking her outside to garden, going to singings, church services, bingo, etc. Linda also kept the CNAs to task by demanding good personal hygiene care. Of course there is much more to her overall care in the facility and I share all that to let you know that we were highly involved and everyone knew it.

Mom's decline: October: Her food intake decreased and she began sleeping more. November: We blamed a urinary tract infection for her increased sleep; one day she wouldn't wake up. She still had food in her mouth from when CNA fed her; she had no response when speech therapist tested her swallowing and tongue reflex.

Thinking she just wasn't getting better in the smaller hospital adjacent to her long term care facility, we had her transferred to a much larger hospital in a neighboring city where three doctors worked for two weeks to "help her get back to baseline." MRI's, CAT scans, EEG, temporary feeding tube, medicine to draw fluid off her body, nasal trumpet, catheter, rectal catheter, IV fluids, and more.

I believe all these doctors knew she was dying. Everyone knew but us, her family. We kept believing she would snap out of it, especially with the UTI involved, UNTIL, the doctor told us on December 6 that she had a less than a 5% chance to return to her baseline and palliative care was recommended. Then, we knew she was dying. Twenty three hours later, she was dead.

Your book explained so much. Mom's dying was almost exactly like you explained in your book. In hindsight, I am unsure why we, her family, were not advised, taught, or even given a clue about what was inevitable. We truly kept on fighting and advocating for her to get what we thought to be the best medical care she could get all the while thinking it would make some kind of difference in this outcome. In the smaller hospital, her doctor wrote in her medical records that "family would not accept prognosis." The doctor didn't tell us a prognosis, EVER. Why?

I believe if we had known what was really going on it would have saved us much agonizing deliberations about the right care for her. We could have made better decisions. Mom's family loved her very much, but could have accepted this news. I feel a bit cheated in that we were not informed when we tried so hard all along to be informed and be on top of things....and all her health care professionals knew it.

My question is: In your opinion, why wouldn't any of the multiple health care professionals (many of them doctors and nurses) assigned to Mom's case in the last 2 months of her life let us know that she was dying? They had to know.

I am so sorry to hear of your experience with your mom's dementia, care, and her eventual death. What makes your experience even sadder is you are not alone in how you were guided (or should I say not guided) by medical professionals. Your experience is occurring throughout this country.

The medical model in this country is about fixing people. Actually, it is about addressing the illness and diseases that people have. In a better world it would be about people who happen to have diseases.

We are born, we experience, and then we die. Our medical establishment does not seem to recognize that the body was created to die.

I believe we in the medical community should try to fix people when they are fixable. I also believe we need to recognize when a body is not fixable (an 81 year old with advanced dementia to the point of not swallowing is not fixable). We need to give the family direction in how to make their limited time special. We can give families the gift of time to say goodbye.


Michele Harris Padron

I have been fortunate to participate in classes and support groups at my local chapter of the Alzheimer’s Association. This education has been of great help in understanding the changes my mom is experiencing. My mom, now age 91, is in the “long goodbye” phase, having very limited periods of engagement with the world. Although she has her eyes closed, I believe she can hear and recognize my voice but I also know she would not have wanted to “live” like this, mostly in bed or a recliner. We have also been fortunate to find a caring and compassionate care home, six beds, in my neighborhood. But I empathize with anyone who is losing a loved one this way. There is so little we can do to help her. But at least, I have known for over two years that the disease is terminal, that each decline is irreversible, so that we are able to prepare ourselves for the end, wishing only that it would come sooner.

Gail Giacomini

I, too, cared for my father in the last couple of years of his life. A few hours before he died, I said to him, " See you tomorrow, Dad," and the nurses at the Vets hospital where he was at gave each other a strange glance -later I realized it was a “knowing” glance. He died about three hours later, after I had driven home (about 30 miles away). I would have stayed if I’d had the slightest clue that death was so eminent.

Janis Peters

I can echo the sentiments in the letter above! My husband died on May 4, 2019 from lymphoma. He was under the care of “world class” oncologists at the Medical School in Dallas, TX. He was in and out of the teaching hospital from January 2019 until he died in hospice. I did not get your excellent book, Gone From Sight, until the night before he passed. All the signs of impending death were there. Not once did anyone in the medical profession counsel us on the signs of death. In fact he was subjected to so many tests and procedures. The day he was released from the teaching hospital (one week prior to his death), we were hounded to make an allergy appointment in August! We requested hospice on Monday…the doctor’s reply was “yes we don’t think he’ll get well.” He died on Saturday. It is a tragedy that we did not have quality time to say our goodbyes.
I’ve purchased copies of “Gone from My Sight” to hopefully help friends and family when the time comes.


Exactly, I only wish the book “Gone from my sight” was given in the hospital and not the hospice. It would have saved much heartache the 3 weeks my husband was in the hospital before transferring him to hospice. with them doing all types of treatments test and advising more surgery and a feeding tube which I said to stop, enough was enough. A nurse who was a hospice nurse that happen to be filling in on his floor in the hospital one night, said my husband qualified for hospice. But no one else said anything but the physician got irate when I put a stop to all the other surgeries they had scheduled. My husband had lost 30 lbs in 3 weeks, no communication, no eating, but continual sleeping. The physician asked why I stopped, I said look at my husband… his body had had enough. He was transferred to hospice 3 days later and died on the 4 day.

The hospital needs training on when to tell the family that the patient is nearing the end and not to keep trying to keep the patient alive and give false hope to the family. I felt it was all about money, how much can they make off this patient?

Thank you Barbara for all you info, books and caring to educate the masses.


It’s understandable that heath professionals can’t always convey their true assessment of a loved one’s true condition. In an effort to give me the tactful combination of facts, opinion, and compassion, the words may have been muted by my own hope and desperation. I’m glad they didn’t hand me a check list supporting their conclusions, but maybe that’s what I needed.

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