Dad’s diagnosis of Alzheimer’s stayed hidden from everyone until I took over the medical administration of my parents in 2015. Once I found out, there was a deafening silence from most of the people I know even though virtually all of them would add, “My _____ had Alzheimer’s…” But there was little help, little beyond people sadly shaking heads. Or horror stories. Lots of those. Even the ones who knew about the disease seemed to have received a gag order from some Central Alzheimer’s Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this part of my blog…This first appeared in July of 2019.
While my wife and I were celebrating our 32nd anniversary, I chanced to start thinking about how this was the first summer in…hmmm
How many years has it been since Mom and Dad’s lives collided with mine? Not that it was an accident; not that it wasn’t necessary; but once I became the neighborhood contact and helper for my parents, my life changed drastically. Spontaneity vanished. We couldn’t just “drive up North and go camping without making plans and preparing and notifying people.
Learning an entirely new vocabulary, I became a lay-expert on the disease, its symptoms, and its non-treatment. I added it to my breast cancer blog because the advent of the disease in my father and also my mother (who had, most likely, age-related dementia at the end) abruptly dominated my life as much as breast cancer had.
How many years?
We interred Dad’s remains this summer six weeks and two days ago (June 27, 2019); he passed six months ago (February 4, 2019). Mom passed away three years ago (July 27, 2016). They moved into Assisted Living in September of 2015 (I think – but that doesn’t seem like that LONG ago! Could Mom and Dad have declined to a point of death in just four short years? It doesn’t seem possible!) Yet, it happened.
I was a regular visitor to Mom and Dad’s for a couple of years before that as Mom had stopped driving and I took over getting her to her appointments. Of course, that was about the time she began her serious decline. We’d discussed them moving out of their townhome because of her decreasing mobility and Dad’s increasing memory issues. They fought that one tooth-and-nail for a long time. Then Mom had her last knee replacement. She was certain she’d bounce back just like she had from the previous one. She was around my age – in her early sixties – when she started the process of becoming a “bionic woman” (https://en.wikipedia.org/wiki/The_Bionic_Woman) with both hips and both knees replaced, as well as wearing a pacemaker. It was our standing joke.
But when she was in her early 80s, she begged for and eventually got, her second knee replacement. But she wasn’t a kid anymore and afterward, she was in so much pain, she refused to do PT. She refused to walk. Edema set in. I started coming to their home to help; and discovered Dad’s “pill system”. I got permission to see Mom’s records (because I was going to all of her appointments and taking her to the hospital) and eventually Dad’s medical records as well, for the same reason…the rest, shall we say, is history.
So, a minimum of a year before they moved into assisted living: four years. So four years in which my grandchildren aged, my son and daughter aged, my daughter got married six months after my mom passed – and we were able to add a “taco bar” to the reception menu, which is what new son-in-law had wanted from the beginning.
Let’s say a half of a decade.
Wasted, some people would say. For me, it was a time of incredibly rough growth. I am not the man I was four or five years ago. What kind of man am I now? Hmmm. I’m not sure yet. If you follow the blog, maybe you’ll see me change or the better.
Image: https://c2.staticflickr.com/6/5527/10893068965_1d328e8f71_b.jpg
Dad’s diagnosis of Alzheimer’s stayed hidden from everyone until I took over the medical administration of my parents in 2015. Once I found out, there was a deafening silence from most of the people I know even though virtually all of them would add, “My _____ had Alzheimer’s…” But there was little help, little beyond people sadly shaking heads. Or horror stories. Lots of those. Even the ones who knew about the disease seemed to have received a gag order from some Central Alzheimer’s Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this part of my blog…
Did placing Mom and Dad in a care facility hasten their deaths?
The short answer is, for Mom, hmmm. They were living in the condominium they’d purchased seventeen years earlier when Mom started her precipitous slide after having a hip replacement in October of 2014 and refusing to do the prescribed exercises...and being just plain...older than she was the first time they'd replaced it. They moved into an Independent Living/Assisted Living/Memory Care facility (after long, arduous discussions, arguments, and confrontations…that was a horrible time I have no desire to recall let alone relive…) in September of 2015. Mom passed away in July of 2016. Dad moved in the same day as Mom, then passed in February of 2019 – 10 months for Mom; 3 years, seven months later…Short answer for Dad, is he probably lived LONGER going there…
First thing I’m going to note is that when I started searching Google for this essay, the FIRST thing that comes up (sometimes for two pages!) are ADVERTISEMENTS for nursing homes, assisted living facilities, and memory care facilities.
My parents were in a top tier facility, (then) half of the place was senior independent living. The other half was (then), two floors of assisted living and one of memory care. (Today, an entire wing of independent living has been added, and a second floor of memory care…)
There was underground parking, a spa and swimming pool, gourmet dining, barber/beauty shop, stunning appointments, a full activity program, a chapel with regular services, a medical clinic sent someone to the facility every other day, there’s nothing Mom and Dad DIDN’T have!
And yet they died eventually. Mom passed first and my brother and wife were “on watch” the moment she died. Dad? He was actually alone. I got the call from the facility while I was working (high school counselor), and I left to find him silent, in his room.
It was NOT a surprise; me and my siblings had been holding “death watches” for two weeks after he had a bad fall and reportedly’d had a small stroke. That was the beginning of his long slide. After a hospital stay, we’d allowed him to be placed on hospice care in order to get meds and frequent care (NOT 24/7) the facility wasn’t set up for that; but we wanted him to die in a familiar place. Mom died in her bed. We’d had to get a hospital bed for Dad for several reasons as well as rearrange his room to accommodate it and clear pathways for him to be able to see the TV and for us to sit – and to keep things as “normal” as we could.
Ya know…this has stirred a whole, Helluvalot of crap in me. I’m going to stop now and come back next week. Sorry…
From the first moment my wife discovered she had breast cancer in March of 2011, there was a deafening silence from the men I knew. Even ones whose wives, mothers or girlfriends had breast cancer seemed to have received a gag order from some Central Cancer Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this blog…That was four years ago – as time passed, people searching for answers stumbled across my blog and checked out what I had to say. The following entry first appeared in June of 2019...
Longer answer: “Not exactly, but pretty close…though it may be masked by other things or mask other things…”
We had to put our dog down this past week.
While this is hard ANY TIME it happens, this time, for me, it was doubly hard. What my seem like a non-sequitur: My dad passed away in February of this year.
He died (officially) from complications due to stroke.
As you know by this point, he was diagnosed with Alzheimer’s in 2014, five years ago. We eventually got him into a Memory Care facility not far from where I live (the closest of the siblings), where the staff took over the majority of his care and I supplemented and became the primary care contact with them.
All of the experiences with Dad came rushing back as we made the final decision to put our dog down. All of the similarities between our dog’s behavior and health and my dad’s behavior and health made me back away from her in horror.
Both had cancers, both skin.
Both had joint pain.
Both wandered aimlessly at times, sometimes forgetting where they were.
Both had dramatic changes in personality (though our dog’s changes were less pronounced.
Both had vision problems that led to bumping into objects and a decrease in mobility.
Both had times where they simply stared into space as if unaware of their surroundings.
Both had wildly changing sleep patterns – our dog had started waking at random times and asking to be let out, then coming in, expecting to be fed. Her pattern since we got her from a dog rescue organization had been to wake at a VERY specific time and follow through easily with a morning toileting and feeding routine, retiring until my wife got up and we prepared for work.
Where these symptoms add up to something in Humans called Alzheimer’s Disease (“…progressive mental deterioration that can occur in middle or old age, due to generalized degeneration of the brain. It is the most common cause of premature senility.” (https://www.alz.org/alzheimers-dementia/what-is-alzheimers), named in 1901 after “German psychiatrist Alois Alzheimer identified the first case…”.
In dogs it’s: “…known as canine cognitive dysfunction syndrome (CCD). Roughly defined, this cognitive disorder tends to affect the perception, memory, and general awareness of a dog.”
Alzheimer’s is diagnosed by particular cognitive behaviors, which I’ve detailed here: https://breastcancerreaper.blogspot.com/2019/01/guys-gotta-talk-aboutalzheimers-21.html
CCD is diagnosed by particular cognitive behaviors, which are detailed below: “[An] acronym used to diagnose dementia patients is DISHA. Where D denotes disorientation, I denotes to social interaction changes, S denotes to changes in the sleep cycle, H denotes to house soiling, and finally, A would stand for changes in activity.”
The similarities between the two were freaky at best. Even theoretical causes for both are alike enough to give me pause. Similar enough to make my heart flip flop a bit considering that as of yesterday, both are gone from this world – and I recall both of them fondly, and loved both in unique ways…
Resources: https://www.alz.org/
Image: https://c2.staticflickr.com/6/5527/10893068965_1d328e8f71_b.jpg
From the first moment I discovered my dad had been diagnosed with Alzheimer’s, it seemed like I was alone in this ugly place. Even ones who had loved ones suffering in this way; even though people TALKED about the disease, it felt for me like they did little more than mumble about the experience. Not one to shut up for any known reason, I added a section to this blog…
Every month, I’ll be highlighting Alzheimer’s research that is going on RIGHT NOW! Harvested from different websites, journals and podcasts, I’ll translate them into understandable English and share them with you. Today: Blood Tests and Alzheimer’s…an advance!
In August of 2019, I wrote that there seemed to be evidence suggesting a simple blood test could indicate Alzheimer’s Disease in a person who had NO SYMPTOMS… (https://breastcancerreaper.blogspot.com/2019/08/alzheimers-research-right-now-3-what-do.html)
Well, it seems the day has arrived! Researchers in Germany had this to say: “An accessible, affordable, and minimally invasive biomarker for Alzheimer's disease would revolutionize care of patients worldwide, as well as boost the development of novel drugs for this presently still incurable disease.”
They were fairly sure that they’d discovered the biomarker in 2019, but recent developments had given solid evidence that they have, indeed made what us normal people would call a breakthrough. It seems that, two years later, the test is here!
“After decades of research, we now know that Alzheimer's disease-related memory problems are just the tip of the iceberg of underlying degenerative processes in the brain that have been silently developing over years or even decades…Until recently, it was only possible to detect these protein aggregates in the brains of deceased patients at autopsy.”
Fat lotta good THAT does us!
Last year, researchers discovered a specific biomarker related to Alzheimer’s called a “phosphorylated tau protein (p-tau181)”.
OK…sorta cool…but WHAT THE HECK DOES THAT MEAN?!?!?!?
Let me do what I do best: break it down into English so normal people can understand the medical “blah, blah, blah”. First, what’s a “biomarker”?
Apparently, biomarkers are also used in cancer research! According to cancer.gov: it’s a “…molecule found in blood, or in other body fluids, or tissues that is a sign of a normal or abnormal process, or of a condition or disease.”
What are some “biomarkers” us normal people would be familiar with? When you get a sample of “poop” and send it in the little container to the doctor to see if you can skip the colonoscopy this year – that’s giving your doctor a biomarker.
Lately, the biomarkers that are on everyone’s mind – and in their nose, spit, blood, and (ewww…butts!: https://www.health.com/condition/infectious-diseases/coronavirus/anal-swabs-coronavirus) – are the antibodies formed in your body that prove that you are positive or negative for COVID-19.
If you’re diabetic, checking your blood sugars or your A1c are both sampling biomarkers.
Researchers have discovered a new biomarker that will let them detect Alzheimer’s Disease before you start suffering the ravages. What is this “phosphorylated tau protein (p-tau181)” and how does it get into your blood and how can it tell them if you (I imagine) test positive for Alzheimer’s Disease?
Up until this study, the only way to see the p-tau81 was under a PET scan – which is expensive to do, and there are a very limited number of PET scanners available, primarily in large cities with a heavy investment in cutting edge medical technology. Basically, it’s a big molecule called a “tau protein” that we find in microscopic tubes of the nerves in our brains. It’s job is to stabilize the neurons so that they can do their best job: carrying signals into and out of the brain.
When there’s brain damage – like a traumatic brain injury, those proteins increase and can be seen in the fluid that surrounds the brain and spinal cord (you’ve heard of a spinal tap – the tap removes a bit of the fluid in the spine to test for diseases). The tau proteins are “attacked” in an process where a phosphorus molecule with three oxygens clamps on to it through another molecule called an enzyme (enzymes are what’s in your spit. They get mixed with food to start breaking it down even before it gets to your stomach!) These phosphoryl groups cause the tau proteins to get tangled up with each other. It’s currently understood that these “tau tangles” are part of a process that destroys memory and recall in the brain.
That’s not ALL that causes Alzheimer’s, but these tau tangles are a major component. The blood test will allow doctors to find the tau proteins with their phosphoryl groups LONG before they start to cause serious damage to the brain.
According to the journal article linked below, “In Alzheimer’s disease (AD) and related neurodegenerative diseases, including chronic traumatic encephalopathy, tau is abnormally phosphorylated and aggregated into bundles of filaments.”
That was cool enough, but then they developed “a cheap blood test capable of detecting the presence of phosphorylated tau protein – knowing that it is a defining hallmark of Alzheimer’s Disease.” They can then inform the patient that there will likely be a problem in the future.
Besides traumatic brain injury, what CAUSES the phosphorylation of the tau proteins in the microtubules of the nerves of the brain?
No one knows, just as no one knows why some people experience the degeneration of Alzheimer’s starting when they’re 78 years old; and others become the President of the United States.
There is no current TREATMENT for destroying these p-tau81 proteins, and of course the problem will STILL be admitting it to yourself and your loved ones that Alzheimer’s Disease looms darkly in your or their future.
Resources: https://www.sciencedaily.com/releases/2021/01/210113100824.htm, https://jamanetwork.com/journals/jamaneurology/fullarticle/2774467
Image: https://www.meduniwien.ac.at/web/fileadmin/_processed_/e/1/csm_shutterstock_142671010_4683b6bf13.jpg
