A Final Insult
My Mother’s Death Certificate Doesn’t Mention the Alzheimer’s Disease That Killed Her
The American Heritage Dictionary defines insult in the medical sense as:
“Insult: A bodily injury, irritation, or trauma.” (1)
My mother died of Alzheimer’s disease, a terrible wasting disease of the brain, with which we have become all too familiar. Alzheimer’s disassembles the brain from the inside, taking away memories, personality, and eventually the ability to walk, talk, eat, and even breathe. If nothing else kills someone with Alzheimer’s, eventually their autonomic nervous system —which controls swallowing and breathing — fails, and they die from the body not knowing how to do what a newborn does.
No mere description of Alzheimer’s can compete with the gut wrenching experience of seeing your mother lose her memory and all of her abilities.
Even though Alzheimer’s dominates care discussions for people with the disease, Alzheimer’s patients don’t stop having other health issues. In many cases, medical conditions for Alzheimer’s patients do not get addressed.
The patient may not be able to experience or describe their symptoms. Even if the patient is aware of their symptoms, he or she may not be able to understand the diagnostic procedures or remedies or give consent to them. In later stages of the disease, the question arises about what quality of life would be extended. I don’t know about you, but if I end of dying of Alzheimer’s, I am confident there will be a day when I don’t want extraordinary measures to extend a life that has nearly zero cognitive content.
My Mother’s Health Status
It was no secret among our family and friends that my mother had Alzheimer’s. No one knows what to say to you, whether they have had a family member with Alzheimer’s or a similar dementia or not. It’s just a conversation ender. Caring for someone with Alzheimer’s in your house goes from puzzling to dangerous. Confusion about whether a door leads to a porch or steep stairs into the basement can result in a serious injury.
We had people come in to care for my mother on days when work and family obligations made it difficult to be there every moment. Sometimes that would be fine, sometimes my mother would feel threatened or confused, and lash out with a hard pinch or a punch. We were worried that my mother would do something she never have done before the Alzheimer’s, but which hurt someone in a real way, or that she would hurt herself.
In the long run, we felt that memory care was the right thing for my mother. They could help her take care of herself, get her baths (though she screamed every time, they told me), and on and on. While she was in this care facility a doctor we had hired to visit her there noticed a lump.
My mother with Alzheimer’s had breast cancer. Probably.
The doctor wanted to know what we would want to do. If we wanted to know for sure whether the tumor was malignant, we would have to do an ultrasound and probably a mammogram. But what would we do with the results?
In the end, we decided that knowing was better than not knowing. We took my mother to the hospital, where she had the ultrasound, despite a lot of confusion and concern on her part. However, we couldn’t get through the start of the uncomfortable mammogram procedure. My mother was in pain, she did not understand what was happening, and could not cooperate. We decided to just take her back to her memory care facility, knowing that she had breast cancer, but that we could not in good conscience treat it.
She had to endure the insult of Alzheimer’s in her brain and cancer in her breast.
The Purpose of Death Certificates
Most people never think about why the government generates documents about them and their families. Despite all the jokes about wasteful spending, governments do not collect information without a reason.
As citizens, we use birth certificates to prove who we are; the government uses them for this purpose, but also uses them to understand birth demographics: for example, how many people are being born, and how healthy they are at birth. Death certificates help us prove that our loved one has passed on, and allow us to take care of their final wishes and take care of their estates. But the government is also aggregates the data captured in death certificates to develop a statistical understanding of causes of death and other tends in health and longevity. This aggregated data is made available to researchers.
My Mother’s Data is Skewed
The quality of the data in a government record is only as good as the knowledge of the people providing the information, and their ability to recall it in the moment.
Death certificates are notorious for having incorrect information. An informant may not know the correct information, or may not recall it because of having just lost their loved one. In the case of my mother’s death certificate, the first version had an incorrect spelling of my mother’s middle name. Additionally, it listed my grandmother under her second married name and not her maiden name (which the form requests). I was able to get these minor issues corrected.
A future genealogist, had they encountered these errors, would have had little problem understanding the document, but might discount other information in the document because the decedent’s middle name and mother’s maiden name were incorrect when compared with all the other available documentation.
However, the doctor made a mistake that I was not able to convince anyone to correct.
I am concerned that one mistake, which remains in the official death certificate, might be a common mistake. If it is, we as a nation are under counting, the number of sufferers of Alzheimer’s and other dementias. He listed my mother’s cause of death as “Breast cancer,” and did not mention Alzheimer’s as a contributory cause of death. Very likely, the thing that actually killed my mother was the cancer. However, the cancer could have been treated had my mother not been so affected by Alzheimer’s as to not be able to understand what a mammogram was, and why she was receiving it. Cancer or no cancer, my mother was dying of Alzheimer’s, but her bout with this disease is not recorded in the demographic data gathering tool for cause of death, the death certificate. This error and potentially many more like it, could conceivably be limiting our understanding of the true impact of dementia.
The memory of my mother, and all the humor, generosity, creativity, and sense of adventure she embodied, is now impacted by a final insult or injury, that the cause of her death is incorrectly listed in her death certificate; the loss of mind and personality that she endured with Alzheimer’s is not catalogued in the nation’s demographics, which are used to allocate funds for research into cures.
- “Insult,” The American Heritage Dictionary of the English Language, 5e (New York: Houghton Mifflin Harcourt Publishing Company, 2019) https://www.ahdictionary.com/word/search.html?q=Insult : accessed 22 August 2019.
- Pennsylvania Department of Health, draft death certificate, P 20724404, 2014, Alice Mae Jones; private collection of the researcher.
- Pennsylvania Department of Health, death certificate, 8040622, 2014, Alice May Jones; Health and Vital Records, Harrisburg.
