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.
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Always the overachievers my husband and I were so focused on medical solutions that even when he grew weary of the decades’ toll of chronic disease and multiple hospitalizations, I didn’t dare give up our pursuit of cure. It was a seasoned and perceptive home care nurse supervisor who stunned me one day to consider hospice care. And in retrospect, even this was when I asked about palliative care. After we shifted our intention from living at all cost to finishing a life well-lived, even his doctors agreed that hospice was the right choice. Some of them had chosen the same compassionate route for their family members but still hadn’t recommended it to us. It was as if we spoke a keyword that unraveled all denial and we could finally see where professionals already knew we were headed. As our children came from out-of-town in the following two weeks before he died, we made sure they all had a copy of Barbara’s booklet to better understand the experience we were creating on his behalf. We won’t be un-learning the valuable education we gained. Person by person, we will change how we advocate for ourselves and our loved ones in the dying issues we face.
The booklet “Gone from My Sight” was immensely help when my husband spent the past 3 month here at home with Hospice care twice a week.He died here at home surrounded by his loving family on Christmas day 2019.
I have so many friends, fighting for the “best” care for their aging parents who are clearing done with this life. Fancy, expensive Physical Therapy, feeding tubes, invasive testing. No one to pull them aside and say, “Look, your Dad is 92, he is beginning the path of moving on. He is dying.” I had a hospice nurse say that to me as I fretted about my Mom’s intake/difficulty swallowing. It was a huge sea change for our family, as we shifted into the mode of saying goodbye, providing us with precious days of closure
From my father to my younger brother to my mother, I learned a little something every time. In retrospect, however, I have come to realize that the nurses were giving me a lot of good information that I just wasn’t processing. Once at the doctors office, after my brother had gone down the hall to the bathroom, I asked the doctor whether it would be better for my brother to stay with me (I could take him out in the sunshine, etc.) than to be in his daughter’s living room where his granddaughter did her homework. The doctor looked at me as if I were the patient, and said simply, “He’s dying…” I mean, obviously I knew that, but the full enormity of the situation just wasn’t registering in my head.
My 92- year old mother had home hospice, which, as it happens, is what she always said she wanted. The last surviving members of her generation, her sister and her sister-in-law (my father’s sister, her friend from high school) plus their oldest daughters, my surviving brother and my sister, were all around her bedside saying the rosary (another request) as she passed. We had had the priest in earlier. The duty nurse had asked me that morning when the priest was coming — “I think she’s waiting for him.” At last I was starting to get the hints. I called everybody in reach and told them to get there as soon as they could.
And they did, and it was all beautiful, and she looked beautiful and calm in death. My only regret is that I didn’t ask my sister to take a picture.
I have worked in Oncology as a nurse since 2008 and a nurse practitioner since 2013. Sadly, this is the scenario that frequently plays out as some providers have real difficulty discussing end of life. Providers receive very little training regarding how to have these types of conversations. Training on placement of chest tubes, intubation, CPR etc. but not much in the way of how to have these important, meaningful conversations with patients and their families. We deal with end of life every day in oncology and I try my best to make sure patients and families understand what is happening every step of the way. I always tell them they are the Captain of their ship and we are there to assist and also educate. Part of that education involves helping families understand when things cannot be fixed and the true difference between “quantity” and “quality” of life. It is hard for families to know what questions to ask but I would encourage them to ask their providers this “Is this treatment going to prolong life and if so, what kind of quality are we talking about?” Additionally, don’t be afraid to ask for timelines. Most providers don’t like to give anything specific for fear of crushing hope. But you can still ask for a general idea of how much time they believe is remaining for your loved one. I think a lot of providers are actually waiting for “permission” to discuss end of life – they are worried families will be angry but for the most part, the families I have worked with have been hugely appreciative of my honesty.
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