Thursday, November 02, 2006

"Cause of Death"

My dad's death certificate lists "Alzheimer's dementia" as his immediate cause of death, and "chronic renal insufficiency" as the secondary one.


The inaccuracy of this bothers me. I was trained as a historian, taught to pay attention to minute details. In writing fiction and drama, I had to "un-learn" a lot of that training, shelve it in a drawer in my mind. After all, details in literature can be fudged for "art's sake."

But sometimes, my "just the facts, ma'am" persona pops out again. And she says that this isn't literature, it's real life. My dad died, I believe, of the long-term complications of diabetes - renal failure being one of the biggies, heart failure near the top of the list, too. He never had a diagnosis of Alzheimer's, and indeed his mental deterioration seemed to fall into that vast valley called "… and other dementias" - related to chronic illness, rather than an illness in itself.

There was never any talk of an autopsy, as my dad had been through so much with his body in the past nine months that it seemed cruel to do that to him for "research." Furthermore, he would not have wanted it.

And I suppose the immediate cause of death doesn't matter now; it's kind of a "chicken or egg" question anyway. Diabetes set everything in motion, but dementia was, in a way, his undoing. After his first fall, he was learning to walk again, and we all expected him to be able to go home again - his brand-new walker was waiting for him. But then, in an instant, it was all over - in his demented state, he leaned too far out of his wheelchair and fell again, breaking his hip and requiring surgery that plunged him further into the fog of dementia. And although he still had moments of clarity in his last six months, he was never really the same.

The doctor at the nursing home only saw my father after that second fall, so he never witnessed, as we did, the path of my father's descent. Dad must have just seemed like a classic Alzheimer's case. But in his obituary, we set the record somewhat straighter - we suggested contributions to the American Diabetes Association.

6 comments:

lynkatt said...

My H's dad had something similar happen to him. He fell down some stairs and hit his head very hard on a concrete floor, and thus descended into a complete dementia that required he be bedridden. Cause of death should very well be this head injury rather than the massive bladder infection/pneumonia that took his life. Had he never injured his brain, he certainly would have been up and about in his walker, able to play cards, eat hamburgers, and might have peacefully died in his sleep instead of living out a painful nursing home existence.

Mona Johnson said...

Hi Paula,

When Dad died, we had an autopsy done. But a doctor told me that autopsies are often inaccurate, because you examine limited tissue and because you're looking at the "end state" - you don't always know the chain of events that got you to the end state.

I think this is turning out to be true of dementia (or even Alzheimer's) - it's an end state, and multiple factors can cause it. I"m not sure we'll know the answers in our lifetimes.

But this uncertainty sometimes leaves us with no closure, no specific disease to fight. This complication, along with the inability of most people with dementia to advocate for better research and care, often makes me pessimistic about our generation's future.

RUTH said...

HI. Just wanted to say how much I can relate to many things you say. I am caring for my husband who has terminal brain cancer.
take care

Gail Rae said...

I am four-square in your corner regarding meticulously charting the correct observable courses of terminal illness and medicine being hassled to pay attention to this. How do we expect to learn anything that may help change the course of aging if we dismiss the terminally old by claiming that accurate illness trajectories and accurate causes of death don't matter? I'm glad you addressed this. It's important. I recently read an article by a physician (over at Medscape, I didn't bookmark it, unfortunately) who, over much dissent from both family and medicine (autopsies are expensive), insisted on an autopsy on his mother and discovered that what had been diagnosed as Alzheimer's was actually a form of vascular dementia about which a little more is known and some methods for prevention are available and useful. He said he was so glad that he insisted, as he has vascular precursors for just such a scenario as his mother endured.

EuroYank said...

My condolences, but be grateful you did not have a parent dying a slow seven year death from leukemia as every so often they chopped off a leg and an arm to keep them alive, and you were the only to care for them for those years because the nursing homes (where they beat and left older people to rot in their urine in bed) was too terrible a fate to place a loved one!
And that person could not take pain medication because of blood thinners. Years of hearing the screams and I am still somehow sane.
It was her wish to live, and except for me the family could not handle it. So be it!

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