In a perfect world, this blog would never have been sitting in a draft folder waiting for the results of a diagnosis – and finding the right time to talk about it. In an imperfect world, this blog takes a frustrating journey on memory loss, my wife, and me.
I can only assume what Janice and I experienced has happened in a similar fashion to more than 6 million people. In the beginning, small incidents we brushed off were, hate the word, anecdotal.
Memory loss is typical, we’re told, as we age. Things like forgetting why she went into the room. “I must be getting old” style excuses.
Those were types of comments from her (and snarky comments from me, of course) on occasion. Laugh as we will, I reminded her – my dad called it “old-timers” disease… Not outright denial, but – Nah, couldn’t be.
For background
Early in 2014, Janice worked in retail. She’d been “short” on her drawer, considerably over the $5.00 limit. Her boss -gave- her a week off while they “investigated” the shortage. While she knew there was no money “stolen”, the fact remained her till was not accurate. I wasn’t overly concerned but would find myself ultra-aware about my wife’s issues…
Hey, wait a minute…
My son went with her to the grocery store she’d been going to for 15+ years. Not only did she pass the grocery store, she forgot where she was going. My son, intrigued by his mother’s forgetfulness, took great pride in telling the story. Again, one incident didn’t correlate with another, and it didn’t really – well, she’s not old enough to… Wait, brain issues??? Well, she’s too young to have a cognitive loss. Let’s press on.
In another instance, Janice took Dustin somewhere. It was mentioned she was had been “drifting” into the other lane – so much he grabbed the steering wheel to keep her in her own lane. She’d done it before. Now that’s not funny.
Suddenly, “little things” started adding up. Occasional frustration while using the microwave. She mentioned she couldn’t focus on traffic lights, looking at the one ahead rather than the one she was approaching. She’d find her chair behind her before she’d sit down…Seemingly ‘anecdotal’ things I (we) had brushed off – now deserved my dedicated attention.
Denial isn’t an objective option. Something’s going on. I (we) decided to stop her from driving. (I’ll get back to that.) We didn’t know – what we were looking for. Imaginations can and did run pretty wild…Parkinson’s? Brain tumor? Alzheimer’s?
So many questions
Fast-forwarding beyond the primary physician, a recurring question asked was “Has anything traumatic happened in [your] her life” or any “big changes”… Well, we’re pretty boring but had struggled in ways like anyone else over the years, nothing either of us considered traumatic in the sense they were looking for.
The best we could come up with was we had quit smoking about a year before… It’s at this point – I was trying to understand if it could be due to the absence of smoking (and all the chemicals) and the issue at hand. Was there a connection?
By 2015, appointments with a recommended neurologist brought multipe things – cat scans, blood tests, ultrasounds, thyroid, heart tests, electroencephalogram (EEG’s), magnetic resonance imaging (MRI’s), and led to eye tests (new glasses), ear/hearing tests, overnight monitors with cords strapped to her head to monitor brain waves (think Medusa!), and cognitive skills tests, were suddenly a partial list of our routine.
Frustration
It is time-consuming, frustrating (and necessary) to figure out what is happening. Now, I’m not saying the first neurologist was behind the times, I’m just saying the equipment seemed antiquated – something that looked like it was from the 1970s.
He didn’t “find” anything, we had to keep making more appointments.
In the middle of 2015, we decided to get a second opinion to verify there was “nothing there” or found. Still, without an official diagnosis, she was prescribed Donepezil (Aricept) by her primary doctor, it immediately gave her vivid dreams and leg cramps.
I’ll be clear:
Donepezil is not a cure, and it states it does not cure Alzheimer’s disease, but it may improve memory, awareness, and the ability to function.
I’ll be more clear:
It also may NOT improve memory, awareness, and the ability to function, at least for my wife. Her symptoms remained – a lack of balance, depth perception, memory.
This is where I coined my phrase
“Treating the symptom, not the cause – is never an effective outcome.”
Being dismissed
Off to a second neurologist. There was, of course, further testing (mostly the same, because the 1st neurologist didn’t want to share records with the 2nd neurologist (((WHAT???))). By the time we could be ‘seen’, it was spring of 2016.
More of the same tests were conducted, which now also included an Ear, Nose & Throat (ENT) examination for equilibrium – and a cardiologist. No unusual problems. Fast forward for time and space, this doctor said they couldn’t find anything physically wrong. Stay with me…
A recurring statement was ‘[you’re] “she’s too young” for Alzheimer’s. Janice was not in her 60’s – she had just hit her 50’s. For the vaping and smoking readers, I inquired on the 2nd visit with him about reducing nicotine and/or the possibility of her not smoking and symptoms appearing a year or so after quitting – if it were possible that…
I was abruptly interrupted with arrogance and superiority by a rehearsed condescending blowhard. I could tell… I was conversing on, and with, very thick-headed ice.
So, we were told (by two “professionals”) at this point: “She’s too young to have memory problems”. Based on her MRI’s brain scans – the second doctor emphasized he couldn’t see anything unusual or physically wrong with my wife, insinuating symptoms indicated a mental problem. The “problems” were “all in her head”. Still with me?
I’ll repeat that: They couldn’t find anything physically wrong with Janice, but of course – encouraged follow-up visits to see if her condition ‘changed’.
Wait, what? If you can’t find anything…why would I schedule…. never mind. I wonder why the medical community wonders why patients don’t trust their doctors.
My (and her) response was asking if the diagnosis was mental… Not in defense, but my natural reaction was, and I did, tell this second doctor – if I thought something was mentally wrong with her, I’d have said so and taken her to a psychiatrist. After 20 something years – I’d have noticed. But, I could be wrong.
On the diminishing trust of the “professional”, we halfheartedly took his advice and went to the
We didn’t fill the prescription, we didn’t go back.
Towards the end of 2016, and distraught, we weren’t giving up, and decided on a third neurologist. Now, two have “found nothing“. Considering her age at the time of whatever this “is” started at about 50, two professionals said she was “too young to have memory problems“.
Well, not according to my accounts. Her symptoms were still a lack of balance, depth perception, memory.
One of the motor skills and problem-solving evaluation tests was re-ordered. I find this of interest because she hated the test, but we both really liked the doctor, a psychologist. He remembered us, understood our frustration, and he listened. He asked what I thought were pertinent questions. Professional inquiries, standard as with others. He also asked what it was I first noticed – to prompt us on our quest.
I thought about it after explaining a few things – forgetting to turn off the stove, the frustration of not remembering to pay a bill a couple times, driving incidents, all seemingly minor details but way out of Jan’s detailed character over the years…
One thing I thought was minor, piqued his interest. I explained we shared a computer and when I came home – the screen was always turned to one side and not straight. Kinda lopsided.
A light-bulb went off just above his head. He said it was very interesting about the depth perception…………..
Perception. Depth. Dementia… Huh. I was catching on.
With 2017 and 2018 having various tests, appointments, and guesses eliminated, we found she had diabetes. Medication takes care of controls diabetes. Also along the way, the third neurologist sent her to an eye specialist – where he found – and then did cataract surgery for her in both eyes.
Having multiple MRIs obtained, the third doctor instead, (and thoughtfully) ordered a positron emission tomography scan (PET) scan (not covered normally by insurance, and it should be). Note, dear reader, the other neurologists never mentioned a PET scan. Once ordered, it was approved after a 2nd try because a PET scan is not, we learned, an “approved” method for determinations…(?!?!?). MRI’s were also hard to approve years ago, and now PET scans are still considered “research”.
Once approved, The doctor assured us it would be definitive, and show (if any) any abnormalities. Meanwhile, another on-site standard memory test (taken a few times already) was performed at his office by a practitioner. He got the results, and it brought him quickly into the room where he exclaimed to Janice: “You’re no longer allowed to drive”… We explained she hadn’t driven since around 2014. (Told you I’d get back to that).
The PET scan was approved – and results in December of 2019 clearly showed abnormalities consistent with early onset Alzheimer’s. That was a definitive answer. They can’t pinpoint any specific ‘stage’, but is considered: Stage 3. The definition fluctuates between 2, 3 and hovers around 4 on occasion.
“There are drugs to treat the symptoms of early and mid-stage Alzheimer’s.”
“Currently there is no drug or treatment that prevents Alzheimer’s or related dementias.”
Knowing there is no cure, there are experimental drugs and studies that she can participate in, Janice decided to decline both.
Life is not without incidents, struggles, and frustrations. We were searching for, and finally found the cause of her issues. Steps for balancing diabetes, cataract surgeries, and other issues have seemed to make day-to-day life – better. I say ‘better’ with emphasis and reason. More than anything, it was a sense of relief to know. Had we dismissed these signs at the beginning, we’d be quite a few years behind for a diagnosis.
In fact, if we were just starting to notice (and possibly ignoring) things, the behavior pattern today would make me think – something might be wrong with her. Now, after more than 29 years, there are very good days, and on occasion, not so good days. In my mind, we’re about 5-7 years ahead of the curve.
Final thoughts
We are relieved knowing what it is, but not relieved by what it is. What is sad is three professionals inappropriately predetermined an answer, gaslighted, stigmatized, and embarrassed my wife, then left us to search for an answer for what seemed like an eternity.
This has been a long journey from the questionable – subtle – and not so subtle – symptoms, questions, appointments, fear, testing, analysis, discovery, and diagnosis.
In an imperfect world, there are things we cannot control. In a perfect world, you must live your life making decisions that control what is best for you and your loved ones.
It isn’t the end. While the future may be challenging, this has been a 29+ year path of old memories – between my wife and me.
A few links:
Early-Onset Alzheimer’s Disease
What Is the Difference Between Alzheimer’s and Dementia?
Alzheimer’s Foundation of America
Alzheimer’s Drug Discovery Foundation
