Lesson 18: We do not know.

The deep mystery of the brain becomes the unfathomable fog of guesswork surrounding treatment and care for people with Alzheimer’s and dementia. We are learning in leaps and bounds, thanks to the advent of and advances in brain imaging technology. But in reality we know very little, and all existing treatments are a best-guess scenario.

I was reminded of this simple truth when visiting my mother’s geriatrician last week at the city’s Memory Clinic. The clinic was established specifically to deal with seniors and/or brain trauma and memory loss, and I was naively excited when they accepted my mother as a patient. I thought we might benefit from some cutting-edge discoveries and techniques for managing Alzheimer’s; instead, we have been asked (and declined) to participate in clinical trials and new drugs. They want us to be part of the experiment, not the solution. Oh well.

Our minds are not our souls.

“What city are we in?” asked my mother’s geriatrician, during this recent visit.

“I don’t know,” my mother admitted readily. “What city are we in?”

Her doctor persisted. “What’s the name of the building we are in?”

“We’re in a hospital,” said my mother, correctly.

“Yes, but what’s the name of it?” said her doctor.

“The name? Does that matter?” said my mother, looking at me for clues. She hadn’t clued in that she was being tested.

“What season are we in?” said her doctor, moving on to another question.

“Season?” my mother repeated.

“Yes, season,” said her doctor, “Is it spring, summer, fall….”

“It’s nice out today,” said my mother, again correctly. “I think it’s spring, isn’t it?”

Her doctor looked at me, clearly exasperated. “There’s no point in continuing this,” she said rather impatiently and not quietly enough for my mother’s sharp ears, “she’s obviously moved on to the next stage.” I watched my mother carefully, hoping that she wasn’t picking up on the doctor’s negative vibes.

Mom was in a great mood that day, and while her answers weren’t what the doctor wanted to hear, they showed that she was paying attention and trying her best. She was smiling and laughing and enjoying the exchange. In my mind, this was much more important than getting the answers right. But that’s not how her doctor saw it.

Oh, and by the way….

I mentioned to the doctor that Mom and Dad have been taking MCT (medium-chain-triglyceride) coconut oil for over a month and that we have noticed some improvement. Mom no longer seems “out of it” for hours at a time, and even if she is unable to communicate (on most days, but not all) due to her aphasia, she is more alert, present and paying attention. Her mood has improved significantly since we started taking the coconut oil daily, even if she still has bad days now and then. The doctor nodded, her eyes glazing over.

“I want to recommend that we put her on a new drug,” said her doctor. I kept my poker face on, even though inside I was shaking my head – no, no, no. “There’s a drug called Memantine that’s showing some promise.” (We tried the Exelon patch, and Mom was incredibly patient with daily patch changes for two years — ultimately with no evidence that there was any impact on her cognitive decline.)

“I’ll do some research and get back to you,” I said simply.

This same doctor prescribed an antipsychotic for my mother, just to “calm her down” if she got agitated at night, which happened a few times. I had asked for an alternate solution; according to this doctor, antipsychotics are the only solution. Such narrow thinking, honestly. We (me and the other caregivers) deduced that by addressing Mom’s anxiety immediately using distraction and positive reassurance, we can avoid the agitation before it begins.

There’s always another way. 

There are days when I wonder if Mom even has Alzheimer’s. Her entire diagnosis was based on a 45-minute visit and the mini-questionnaire that has become standard within the medical community (I worked on it a decade ago as a medical writer). It took them a year to schedule a brain scan, which showed nothing. Given the amount of things that can go wrong in the brain, from silent strokes to seizures, trauma and more – how can we be so certain that this diagnosis is correct?

And does it matter?

Ultimately, both my parents have a condition that requires the presence of caregivers in their lives. They have memory loss, cognitive decline and, in my mother’s case, the inability to find words in conversation, read text or process anything that is visually complex. Obviously parts of her brain are malfunctioning. But what form of dementia does each of them have, and what treatment may or may not help? That’s all guesswork.

And yes, it does matter, if only because Alzheimer’s is a disease that has a progressive action, and which generally proves fatal within seven years. Here we are, trying to gauge which stage of the disease my mother is in, and we’re not even sure with any certainty that she has the disease.

It makes me wonder how many seniors are sitting in residences, doped up and regulated closely, simply because they were given a probable diagnosis … which then led automatically to standard treatments, drugs and solutions … and possibly a self-fulfilling prophecy. Wouldn’t that be sad? No need to look any further, this is Alzheimer’s and there’s no cure.

Buddha knew that we know nothing. Buddhists are encouraged to cultivate “don’t-know” mind, because in reality – we only know what we know until we know differently. There’s no point in getting attached to an answer that may or may not be true; what’s important is that we keep investigating and asking the right questions. That’s a scientific premise too, and there are many instances of Buddhism and science in agreement.

Is it Alzheimer’s or is it something else? Might it be made better with more active caregiving, less drugs, doses of coconut oil and the sound of children laughing? I don’t know. But unless I know it’s Alzheimer’s for certain, I think I’ll keep my mother’s diagnosis uncertain as well, and not assume the worst.

One day at a time. No jumping ahead.

Believe nothing, no matter where you read it, or who has said it, unless it agrees with your own reason and your own common sense.”
– Buddha

 

 

 

 

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One thought on “Lesson 18: We do not know.

  1. Hello dear Lorrie
    You are so right!
    My Mom Eléonore was diagnosed 5 years ago, she was given drugs that we only took 2-3 days as they were making her suicidal and very aggressive – so I stopped them almost immediately. I lost my job less than 6 months after I asked to change my schedule to increase my work at home ratio to reduce my paying caregiver/companion time for Mom at home to 3 mornings a week. It had no Impact on my job performance but they were not interested.
    So society rarely helps – even if it doesn’t actually affect them. They just don’t want anything to do with Alzheimer’s. I think that is why one by one friends and acquaintances drop away to never hear from again.
    Re Doctors, they only prescribe super duper strong stuff – I really don’t know whether it helps, but I see the possible and/or side effects are HUGE. Last month, I asked for something light to help Mom (95) sleep as she paces all night chatting to herself. She was prescribed something that was for seizures and anxiety! And in looking up the side effects they mentioned that there was a high mortality rate in the elderly!
    So obviously we didn’t take it.
    I have now decided to just ignore ALL negative actions, outbursts etc.
    Just walk away – they all pass in a few moments if we just walk away.
    We certainly don’t want our loved ones to be guiney pigs for the drug companies.
    Don’t worry about a diagnosis dear Lorrie – it really doesn’t matter. We just need to have patience and LOADS of tender love to shower our loved ones with so that they feel loved, secure and safe.
    It’s wonderful that your mother has joyful, enjoyable days
    God Bless
    Charlotte

    Like

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