This is not the column I had initially prepared for posting today, but this is the column I needed to write. On April 12, 2016, just one day after posting my HuffPost column, "Alzheimer's Caregiver Not Ready to Move On," my beloved wife, Clare, passed away quietly and calmly in her sleep. She never made it to what would have been her 70th birthday in May or our 49th anniversary in June.
Clare had told me more than once in recent weeks, "I can't do this anymore," but she was never able to tell me exactly what it was that she "can't do" anymore. However, I knew that Clare didn't like being spoon fed, and didn't like being confined to a wheelchair in which she couldn't even sit up straight. I think it bothered her that she was having more and more difficulty swallowing food and medication.
I think that when Clare said, "I can't do this anymore," she was trying to tell me that she just didn't want to go on living like that anymore. I think that she just couldn't stand what was happening to her.
I will go to my grave believing in some sort of "cosmic connection" between my HuffPost column of 4/12 and Clare's passing the next morning. It's as if Clare had somehow learned about my column that Monday and was saying to me, "Hon, you really need to let me go. It's time. I know you love me, and you know I love you, but it's time for you to move on with the rest of your life without me. So I'm going to pass in my sleep tonight and that will make it easier for you to move on without me starting tomorrow. I love you ... but it's time for me to let you go."
Clare always worried more about me than about herself.
Section 30, part I of Clare's death certificate is where the "immediate cause" of death is written. The doctor wrote, "cardiac arrest." That came as no surprise to me since Clare suffered a near heart attack at age 47 and had been dealing with heart issues ever since.
What did surprise me, however, is that the word, "Alzheimer's," does not appear anywhere on Clare's death certificate. Not even in Section 30, part II where "Other significant conditions leading to death but not related to cause listed in part A" can be written. The doctor left that space blank ... there is no mention of Alzheimer's disease.
I am having trouble wrapping my mind around that part of Clare's death certificate.
In 2014, relying upon two studies conducted with partial funding from the National Institute on Aging (NIA), one of the National Institutes of Health (NIH), the NIA concluded that, "Underreporting of Alzheimer's as a cause of death on death certificates is a well-known phenomenon. Some people with the disease never receive a diagnosis. Many others have dementia-related conditions, such as aspiration pneumonia, listed as the primary cause of death while the underlying cause, Alzheimer's, is never reported."
According to Bryan James, the lead researcher on one of the studies, "Alzheimer's causes the brain to decline over time. At first, it affects those parts of the brain responsible for thinking and memory. Eventually, it can lead to problems with feeding and swallowing. This puts people at risk for poor nutrition, dehydration, and infection. At that stage, James says, it can lead to fatal conditions such as pneumonia and heart failure."
If Clare never had Alzheimer's, she may have lived a much healthier life style, especially in these last few years, exercising more and eating more nutritiously.
If Clare never had Alzheimer's, she may never have needed powerful medication to help control her anxiety in the past two years ... medication that came with specific warnings of higher incidence of death when taken by people with Alzheimer's.
Given Clare's personal and family history of heart disease, even if Clare never had Alzheimer's she may still have died that same morning of cardiac arrest. I know that. However, I also know that if Clare never had Alzheimer's this past decade, she would have had significantly better health, a significantly better quality of life, and may possibly even have lived significantly longer.
According to our Centers for Disease Control (CDC), 84,767 Americans died of Alzheimer's in 2013, the latest year for which CDC has complete data. CDC bases annual death statistics solely upon causes of death listed on death certificates. When CDC collects 2016 data, Clare's death will be counted as a death due to heart disease, not a death due, at least in part, to Alzheimer's.
It's as if, officially, these past 10 years never existed. Clare spent 10 years battling Alzheimer's, but there will never be any official documentation that she ever had this horrible disease.
That just doesn't sit right with me.
In my opinion, doctors should write "Alzheimer's" on death certificates for all who die while in end stages of Alzheimer's, if not as the immediate cause then certainly as one of those "other significant conditions leading to death." Researcher Bryan James noted in that same 2014 NIH-sponsored study, "Trying to identify a single cause of death may not reflect the reality of dying for many older people, where multiple health issues contribute and lead to a cascade of deterioration of health and function that leads to death."
It is difficult enough for caregivers to watch their loved ones die a slow but inevitable death due to Alzheimer's disease. But then to discover that because a doctor did not feel it was important to note this "other significant condition" on a death certificate, their loved one will not even be counted among those who died, at least in part, due to Alzheimer's... well, that is just not right.
If you would like me to respond to questions or comments about this article, please email me directly at firstname.lastname@example.org. All of my columns on The Huffington Post may be accessed at www.huffingtonpost.com/allan-s-vann. You can learn more about my journey with Alzheimer's and read my articles published in caregiver magazines, medical journals, and in major newspapers at www.allansvann.blogspot.com.
My next blog post will be in two weeks. Tentative title ..."Moving On After an Alzheimer's Death."