***Disclaimer***typing this on the treadmill; any spelling and or grammatical errors are to be blamed on that fact.
August 11th was my mom’s birthday. She turned 67. I think. I’d ask her, but I doubt she’d know.
She’d likely not know her exact age(admittedly, I often forget mine as well since I gently fib about the 49 years I’ve spent on this earth–ahem–).
She’d likely not know what year it was.
She’d likely not be aware who I even was, without some prompts and reminders.
She has Alzheimer’s.
In her own words, “it sucks.”
Apple doesn’t fall far from the tree, now does it?
One on level, it’s fascinating to see how both Jamey and my mom’s brain deterioirations in seemingly similar brain regions mirrored each other.
Each lost first short-term, then long-term memories.
Each had “good and bad” days when it came to memory formation, retention and retrieval.
And that’s where the lucky few people who’ve had no introduction to the ghastly face of brain injuries often believe Alzheimer’s symptoms end: memory loss.
On the surface, I suppose if that were the case then Alzheimer’s symptoms would be, if not treatable, at least manageable with the advent of smartphones and related devices; heck even a pencil and steno pad would work well to enhance one’s recognitive abilities!
But memory loss is just one of a cruel constellation of symptoms claimed by this insidious disease.
As was also evidenced by Jamey’s disease, Alzheimers’s often impacts physical and socio-emotional abilities; not just cognitive.
Although my mom’s vision is fine(actually only needs reading glasses–well, she did at least: when she had the ability to read), she has perceptual deficits.
It’s like she can’t perceive what’s directly in front of her, even though she can “see” it.
You can direct her to turn her gaze towards an object and(if she’s able to follow your commands), she’ll appear to be looking right at it, but it won’t register in her brain; like she has reverse “blindsight”.
Maybe she can learn to echolocate.
Sit in on one of my “Sensation and Perception” lectures if you find that concept as bafflingly fascinating as I do.
Although my sample size is woefully small (n=2), I’ve noticed that both Jamey and my mom experienced an almost 180 degree turn around in personality.
I’ve painstakingly and painfully detailed how Jamey’s transformation of “self”went in a direction I was slightly displeased with(remember my oft-repeated mantra of “This is fucking insanity! This is fucking insanity!”)
With my mom, it’s different.
I’m sure distance and the ability to “detach at will” color my experience, but I actually like my mom now.
Let me explain(before sounding like the heartless harpie she often accused me of being.)
Like many mother-daughter pairs, my mom and I experienced a lot of mommy-daughter drama.
We’re both “hard-headed and hot-headed” as my dad would put it.
But unlike many mom/daughter pairs, we never really found a common ground to balance out the bad.
We never went shopping together(I think the woman’s been to the mall maybe twice in her life), never treated ourselves to spa days(my mom cut her own hair–with cuticle scissors for as long as I knew her) and we never, EVER would’ve uttered the phrase, “My daughter/mother is my best friend.”
There was always a palpable tension between us; lots of eggshell toe tipping growing up.
Things changed somewhat when Cael was born and we definitely became closer when Jamey fell ill, but for me at least, there was always a timebomb slowly tick-tocking in the closet; one slip over the hidden trip wire and BOOM!
I don’t feel that now. I feel genuine empathy and sympathy for her as a human being and my mother.
Was she a perfect mom? Ummmm…
Did she do the best she could? Well, I have issues around that one as well.
But she was, is and always will be my mom, whether I’m 49 or even when I was 42.
So here’s what I’m thinking….
Here’s the good news:
Statistically speaking, most of you on here won’t ever experience living wih a spouse with a brain tumor.
Yeah! You dodged the BT bullet.
Bully for you!
Here’s the bad news:
Projections show that by 2020, 100% of the population will have Alzheimer’s.
Ok, that statistic may be a little Foxnewsian alarmist, but there’s no denying that Alzheimer’s is on the rise.
Our generation(talkin’ bout my generation–borderline young Baby Boomer/Gen X-rs)will be facing this reality and in growing numbers in our parents and older family members.
It’s sad, scary but true.
I even found a 1mm wrinkle on my forehead the other day.
And our parents are aging.
And some of them, a good number perhaps, will follow the tau-tangled road towards a tragic and often brutal death.
And we, as children and caregivers of them, will stumble and crawl and temper-tantrum our way behind them, changing and feeding them and wiping their dirty bums like they once did for us.
Deal with it or check out early.
So we need to be informed, I think at least.
And we need to be prepared.
I’m not talking about stockpiling our underground bunkers with bottles of (useless) shark cartilage and fish oil and lumosity puzzles.
I mean prepared with knowledge.
So sure, the ghost of Jamey will never travel far from this blog.
In fact, he’s on the treadmill next to me now and between you and me, he needs some cardio; must be some REALLY good lasagna in heaven because he’s developed a bit of a paunch.
So the blog will still chronicle the undead and dead exploits of a man some call “robot it disguise.”
But it’ll talk about my mom, dad(ideally with his consent) and our family’s experiences as well.
9 thoughts on “Two days late, two dollars short and a new-ish direction”
Sounds great.I can totally relate to the mom thing.I always enjoy reading your Blog lets me know you A. Are okay Or B. you need a beer and an ear.
I know you have your share of stories, Kell.
And I like the beer and ear idea.
Perfect!! I can relate to the topic of Alzheimer’s. My Grandmother had it.
Sorry to hear, Amy. Then you’re well-aware of the crazy circus that is Alzheimer’s. Sad, but hilarious at times!
Kim you are not 49! You are only going on 43!! Your mom & I used to go shopping at daffy Dan ‘s & even then I had to force her to spend on herself!! She made the best cookies ! I used to babysit you & Ryan and try to be on a diet but the cookies always ruined it!! I am praying for you because I know this is hard!!
Shhhh….don’t tell anyone my real age, Aunt Judy. I’ve been lying about it for years. My strategy is to say that I’m older than I really am so I look rrrreeeeeaaaallllyyyyy good for my age. If I told people I was 25, they’d think, “Wow! She looks bad for 25!”, but tell them I’ve 49 and they think, “She looks great for almost 50!”
My mom baked good everything, I agree. I think Pam is taking up her role there. I can barely toast bread!
Thanks for the prayers–my dad needs them most of all, though. I worry about him.
I guess it’s no rest for you, back on the magic bus with more caregiving. You may go shopping together yet! Or at least make the decision, just for today, not to push each other into oncoming traffic.
You got handed a vocation and that ain’t no decision made by us to ” find our joy”.
Yesterday I heard someone talking about how much they admired so-and-so because she, “knew exactly what brought her joy and that was all that mattered to her.”
And these two people ( the joy seeker and the lover of the joy seeker) do not have Alzheimer’s or dementia or a brain tumor……
My situation, as you know, sucks! but I accepted my vocation, just for today, by not pushing my husband into oncoming traffic as he staggered toward Walgreens for a chocolate bar, almost falling into traffic all by himself, waving me away and scowling because he was just fine, thank you very much.
He was seeking his joy and that was all that mattered to him.
I was ready to kill him because we had been at this all day. He was having a really bad day, an unexpected reaction to some meds and I was exhausted but we both got home alive and the meds wore off.
He got his joy and I have my vocation.
Take up that cross, you’re in good company. I’ll toss some cash in the mass intention basket for all of us.
St. John the Caregiver, pray for us!
Once again, Judy, you leave me half in tears from laughter and half deeply sad empathy. I guess that’s the state we’re often in, isn’t it?
Your husband’s story of oncoming traffic reminds me of a similar one in which Jamey “found his joy” stumbling down our road(we live on an interstate highway with no sidewalks and heavy, heavy traffic) to buy a container of brownies from the Amish store. I’ll post the details in the blog one day.
As as teaser, however, he ended up suggesting “dumpster diving” to recover the lost brownies.
In hindsight, this is all great stuff. In the thick of it, it’s hard to maintain that perspective.
So yes, I’m up for round 2 which I knew I’d be facing eventually, but not as quickly as it’s happened.
I’m not the primary caregiver in this version of Insanity Island, but, as the oldest child am self-proclaimed savior. It’s similar, yet different to Jamey’s situation. This one brings with it deep-seated family constellation/dynamics, unresolved issues, etc.
But in the end, it’s about compassion, dignity and love I suppose.
You are often in my thoughts and, yes, prayers.
Alzheimers is a horrible illness. My father died of its complications in 1990. I watched him slowly slip away over a 10 year period…..he was 78. My mom and I took care of him at home never spending 1 day in the hospital or nursing home. In the end when his body started to break down and fail I put him down myself with morphine over a 7 day period. It was very hard but the humane thing to do. Give your mom all the care you can, have patience and try to keep her comfortable. I know you have some experience in that neighborhood. Good luck…..my thoughts are with you!!