At age 63, my wife died with Alzheimer’s disease and because of Alzheimer’s disease, but not from Alzheimer’s disease.
This is a statistical tragedy that has implications in understanding the true effects of Alzheimer’s disease on our nation and it needs greater attention.
My wife Rita was the greatest Registered Nurse in the world. With baccalaureate degree training she had long worked in critical care and trained with the pioneer cardiac surgeon Michael De Bakey in Texas.
She eventually came to work in Los Angeles at Martin Luther King hospital’s emergency room. This was during the cocaine wars of the late 1980s and King Hospital was a jumping place back then but she was more than up to the task.
As an RN, I too was working at MLK hospital as an emergency nurse and it is where we met — and in 1988, we were married.
When she was promoted to the head nurse position at Harbor General Hospital in Carson California, she had achieved her career goal of running the emergency department at a major urban trauma center.
After a few years she missed giving direct nursing care so she left administration and settled back into being just a great bedside nurse. If you were ever in an emergency situation you could get no better nursing care than from her.
That was until she started to slip.
At first the complaints were that she ‘couldn’t keep up’ with the work load. Changing hospitals and working environments didn’t help.
She eventually found her resume stained with 6 firings from nursing jobs in 3 years, the last for repeating medications she had recently given.
Lots of marriage stress and fights about why she couldn’t keep a job finally ended in a diagnosis of Alzheimer’s disease at age 57. Only in hindsight did I later recognize that her symptoms had actually begun at age 55 or before.
Recognizing the signs only long after they have begun is a typical story for families who have descended into the pit of dementia with someone they love.
Being only 49 years old at that time, I was way too young to retire so I kept working while she stayed home, but that was OK. We never did have children so it looked like was going to be just the two of us who would walk toward the stereotypical end of the story that happens to all Alzheimer’s couples.
I was preparing myself for her dying in a hospital bed guided by hospice care.
Together we went through the classical early stages of using memory aids such as notes and lists before switching to frequent calls from me during the work day to remind her of what she was supposed to be doing.
My coworkers used to laugh as I tried to instruct her over the telephone how to change the channel using the TV remote. Sometimes she would get it but a few times my father (fortunately my parents lived nearby) would have to come over and change the channel for her.
Eventually she could no longer prepare her own lunch regardless of how much preparation and laying things out I did the night before.
My mother was actively involved with our local senior center so she pulled some strings and, at age 58, got her enrolled into the lunch program.
I always kept $1 bills in her wallet so it would be easier for her to pay and not have to worry about counting change. She was still safely driving during this time but of course she eventually lost that skill too and with it her ability to attend the senior center.
I then had a problem. If she could not participate in the senior center, who would watch after her during the day?
At age 54 and with a mortgage and other bills, I still very much had to continue working. She was barely 62 at this time and likely had another decade before she would die from natural causes.
Ten years is too long to pay for residential care and still leave me with any kind of financial security so I had to explore other options.
At first my parents stepped in. Since she was acting like a child, maybe they could care for her like the grandchild we never gave them?
But spending 12 hours a day with an Alzheimer’s person is just too much for someone who is in their eighties. Eventually we all settled into a routine.
On my way to work in the morning I would drop my wife off at my parent’s house where they would give her breakfast and supervise her until the paid caregivers came to our house at 1 o’clock.
I would be home again by 7PM and we would repeat it all the next day. This went on for about a year and a half. However during this time my parents saw their own health problems worsen.
My 80 year old mother had bone on bone arthritis of her hips and back. Ideally she should have had joint replacements but because of other medical problems her chances for a successful surgery were very low.
So, my mother lived with continuous, chronic pain. She was taking Percocet and Morphine around the clock but it only made life ‘bearable’.
Normally very loving, her personality became as coarse and as irritable as you would expect from someone who is in constant pain.
At age 84, Dad had excellent health, taking only one Saw Palmetto daily for his prostate. However he had his own issues with dementia. He too was becoming forgetful.
In another family it might have generated concern but since I had become somewhat of an expert in Alzheimer’s symptoms we saw no real need to go through a formal diagnosis.
His doctors offered the drugs Aricept and Namenda but since he was already in his early eighties why would we want to prolong the inevitable?
He remained safe to drive but there were several times that mom called me over to finish repairing something around their house that dad had taken apart but could not reassemble. This was very embarrassing to dad as he prided himself in his handyman skills.
We never really talked openly about dad’s early stage symptoms because everybody could see them, and with Rita’s dementia becoming severe she needed the attention. Plus, we all knew where dad was headed anyway.
Things were stressful and demanding but, like the island of misfit toys, we had banded together and all supported each other’s failings.
This elder care situation continued for almost two years. The stresses of dementia caregiving were growing in my family and something was bound to happen to release that strain, but nobody knew exactly what.
It is known that providing dementia care can lead to health problems and the death of caregivers, but nobody knew exactly how this would all end.
Mom’s pain was bad enough that it would not have surprised me to discover she had taken all the morphine pills in her bottle to finally end her pain once and for all.
It turns out that dad had a better idea to end everyone’s pain — in just one shot. In actuality, it was more like 8 shots.
On May first of this year, shortly after dropping my wife off at my parent’s house, my father used a gun that he had purchased 40 years earlier to shoot his wife (my mother), my wife and then himself.
He shot both ladies from behind. They died instantly. He made his own 911 call before shooting himself so that I would not have to walk in on the scene.
In a moment, I became both an orphan and a widower.
I am at peace with what happened. It was not a violent act; it was a mercy killing. I believe my father meant it as a compassionate act, as a gift to me.
The real tragedy in this situation is statistical: three people were dead and Alzheimer’s dementia was the true underlying cause, yet the death certificates for all three read “multiple gunshot wounds”.
It seems that society has determined that my wife and parents had not died from Alzheimer’s disease after all. Alzheimer’s disease would not even be listed as a contributing cause.
Before their autopsies, I notified the coroner’s office of the presumed Alzheimer’s diagnosis on my wife. I was told that AD can only be diagnosed after death and I hoped they would prove that, but they had no interest in confirming the presence of plaques and tangles in her brain.
I have since spoken with the coroner and they may eventually work to confirm their existence.
I had also hoped that perhaps the cause of my father’s dementia symptoms could be confirmed on autopsy but, again, no luck — his death was caused only by a gunshot wound.
Just looking at the death certificates my family could have all died in a botched robbery or some other act of violence. Nowhere in the official records is the complete story recorded.
But really, what difference does it all make? It means that as a society we really have no idea how many people die from, with or because of Alzheimer’s disease.
The Alzheimer’s wanderer who goes out on a winter’s night and succumbs from hypothermia did not die from Alzheimer’s disease. Neither did the wanderer who collapses from exhaustion or gets hit by a car.
Their deaths are not counted with those AD folks who succumb in bed in a care facility.
Murder-suicide is not as rare in the Alzheimer’s world as one would expect. In just a few moments with Google one can find no shortage of elderly AD spouses who have chosen this mechanism over a drawn out hospice type situation.
It likely ranks as the second leading cause of death among Alzheimer’s couples. We don’t really know exactly because in none of these cases is the existence of the Alzheimer’s dementia ever officially recorded.
This, then, becomes the real tragedy in my situation and in those many other cases where individuals (and couples) died with Alzheimer’s disease but not from Alzheimer’s.
There are many different ways that Alzheimer’s and related dementias kill. Too many of these deaths are never counted in the Alzheimer’s total and therefore statistically they never happened.
It makes you wonder what the real death rate from Alzheimer’s and other dementias actually is.