When I’m out in public, I occasionally overhear adult children speak to their elderly parent in a tone that knocks the wind out of me. Just based on tenor, I sense what is happening. I hear the adult child, grown, but forever the child of their parent still, speak with a sad sharpness, a blend of annoyance and bewilderment at their mother or father, and I feel it all over again. There is a painfully familiar tinge in their interaction, one that I lived for several years.
I am tempted to say something every time, to tell them to be gentle, to say it’s not their parent’s fault. But I am not only a stranger, I’m no doctor. Even if I were, just hearing someone gripe at their elderly parent is not a diagnostic tool. But, I know from experience, painful experience, what I might be hearing is their reaction to some form of dementia. A parent’s odd behavior and out of character actions elicit that kind of distinct response from their kid. It’s a mix of confusion, exasperation and yes, even anger. If neither parent nor child has any idea what is actually happening, it is so easy to be frustrated, and snap or chide. Even the response of the parent is predictable to me. You can hear the uncertainty, the doubt in their voice. It’s an exchange I know well.
I often conclude that if they are out with their parent, trying to navigate in their usual way, that this is just their beginning. They don’t know why their parent is being difficult, or acting confused. The child has no idea that within the person who took care of them, who raised them, who answered all their questions, and taught them how to navigate the world, there is a force of destruction. The vagary of their actions does not tip them off that their mother or father may be in the throes of some unseen deterioration.
The slowness, the subtle starts and stops of the cognitive losses mask its progression. And by the time you can actually face what you are facing, it may be too late. More tragically, knowing earlier can mean you just maneuver around that reality longer, since there is no cure. There isn’t even one standard test, or one fail-proof method of diagnosis. We only went on with diagnostic attempts because we didn’t know what else to do. By the time we got hit with the dementia word, hearing it from a medical professional was a mere technicality. We had tried to wish the obvious away. I guess “the-person-you-know-is-about-to-slowly-disappear-and-will-eventually-become-totally-helpless” doesn’t meet the criteria of disease naming. Getting a diagnosis is just the beginning. The word tells you so little about what you are up against anyway.
Dementia is an “umbrella term for loss of memory and other thinking abilities severe enough to interfere with daily life,” according to the Alzheimer’s Association. The association is named for the most common form, Alzheimer’s, which accounts for 60–80% of cases, and it reports that other dementias are: Lewy body, vascular and frontotemporal. Each of these types accounts for about five-10% of cases. There is even a possibility for a mixed case of dementia, as well as Parkinson’s and Huntington’s, that fall under dementia.
Well-meaning people frequently asked me what we were doing to find out exactly what type she had. I got frustrated with those who continued to ask. I tried to understand they were holding onto hope, when mine was long gone. It was difficult to explain how much any medical process took out of her. We could have kept up testing and it would’ve changed nothing. She ran out of the ability to endure the tests, and we ran out of the desire to put her through what was just becoming distressing for us all.
Getting an identification of a specific type still yields few options: early enough and there are medications to slow, but not cure it. We tried some of those and saw no difference. There are medical trials available in some cases. Some people may find out it is a vitamin deficiency and can treat it accordingly. It can be thyroid related and those patients have options. Some cases may be caused by side effects of a medication and prescriptions can be changed. It is important to get care in case there are treatment options. But, in our case, we never found out exactly what caused my mother’s disease. We never found out if it was Alzheimer’s or vascular or frontotemporal. Ultimately, it didn’t matter. The endless questions yielded no answers.
So when I hear people trying to communicate with their confused parent, I wish I could share the few things I did learn: I wish there weren’t so many times I’d run out of patience as she declined. I wish I’d spoken softer, and slower, and with more empathy. I wish I’d made the good days better. I wish we’d gone to the doctor as soon as we noticed strange behavior.
I have a lot of “I wish” thoughts about the whole prolonged experience. My biggest wish is that it didn’t end the way it did, even when all I wished for was for it to end. If I could, I would tell anyone going through it to have patience and compassion, not only for their parent, but also, for themselves.
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Previously published on “Change Becomes You”, a Medium publication.
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Photo credit: Aleksandr Ledogorov on Unsplash