Grownup Gripe: Death and taxes are the only two guarantees in life so hopefully you hit the lottery on BOTH.
No matter how you slice or dice it, at some point we’re all gonna go. But how? We don’t know.
One thing I do know is drowning or burning may beat dying by dementia or at least they’re faster.
Admittedly this is a hard one to write but I want to do it for a variety of reasons-most importantly to shine a light on death by early onset dementia what my Mom died of a few months ago (thankfully).
Wish I could sugarcoat it but there ain’t enough cane in the world to prepare a family for the devastating impacts of ANY deadly diagnosis.
Wouldn’t wish it on worst enemy!
Throughout my childhood, I feel fortunate as we didn’t have any real death in our small family.
Many of my good friends have lost siblings or parents when they were young; I can’t imagine.
When Mama started losing it, at least we were old enough to cope though nonetheless it’s still hard.
Dying by Alzheimer’s or dementia is a long haul of devastating declinations and disappointments.
I have to say Mama Rinaldi’s (as so many called her) death was actually a blessing as she would NEVER have wanted to live like that, EVER!
We don’t know if she really died from COVID (she was on the East Coast where reporting was shoddy at best) but a 💔 from COVID, no doubt.
If you’ve ever been to the psych ward of an institution you’ll know what I’m talking about.
Let’s put it this way and preface it with the fact we felt very lucky to have Mama cared for in a facility at the end of her life but have you seen ‘One flew over the cuckoo‘s nest?’ Think of that.
We spent one Christmas in the local mental institution leading up to her nursing home placement so the nursing home was a step up.
But what a long, strange trip!
Nailing a diagnosis is difficult but with no cure or real treatments it’s ultimately a slow, excruciating demise.
What most people don’t realize though is unlike a Cancer diagnosis that hits you like a Mack Truck, being diagnosed with Alzheimer’s is different.
Do not get me wrong Cancer is horrible too!!! Too many of our loved ones have been affected by the deadly C and I know it’s also truly HORRENDOUS.
I’ve called on pediatric hematologists/oncologists for years as well and my heart stops when I see bald little babes being wheeled around the clinics.
ANY Diagnosis SUCKS
With dementia though right out of the gate it’s hard as hell to get a diagnosis. All of the effective diagnostics aren’t there yet, especially if your loved one isn’t exactly the gold standard of health to begin with (which Mama wasn’t) so good luck.
It pains me to say but we actually thought Mama was faking it at the beginning just to get attention.
It was stupid stuff like she’d be disoriented and get into the wrong car in a parking lot or lose her keys/wallet ALL the freaking time-she hated it.
When driving became a problem for the safety of her and others it marked the beginning of the end.
After countless visits to different Specialists who basically wrote her off, we finally found a Neurolgist able to officially diagnose her.
It was Lewy body dementia (Robin Williams’ fate) which you’d think would be helpful but not at all.
The Neurologist printed out some notes and sent my Dad (who’s worked on a construction site for the last 40 years) on his way to deal with it alone.
Surely info was lost in translation but we were essentially told there’s not much they can do but to schedule a visit back every six months or so which we did religiously until it was hopeless.
Really are you prepared for any diagnosis? NO but without any guidance it’s especially HARD.
The one plus we always would hang onto is at least she was not in pain (until the end when she was so pumped with Morphine she couldn’t hold her head up) but that’s the only “plus” we had.
Understandably there are amazing Doctors out there who go above and beyond but not in our case.
So much progress has been made with so many disease states but more is needed with dementia.
Things are changing and the Alzheimer’s Association is the best resource out there!
As more and more Baby Boomers start to experience this epidemic it’ll get even better.
For example my fam didn’t even know there was a difference between Alzheimer’s and dementia.
We also didn’t know in addition to losing her mind, every other faculty was going to go too.
So what if you can’t find your keys or forgot where you put your wallet? It’s SO much more.
The best part we weren’t aware of (I’m being sarcastic) is called Sundowners syndrome. It lasts all night and it involves fear, delusion and hallucinations which means NOBODY sleeps.
My Dad had a hell of a time being a caretaker and did it SELFLESSLY for so long, we don’t know how. He couldn’t even take a shower without her trying to escape. Caregivers are true prisoners.
Unless you have $$ and can afford home health care or no $$ so you can qualify for Medicaid, the middle class with commercial insurance has to fork out thousands of dollars out of pocket.
The cheapest nursing home care we could find was $8k a month and it was a shit hole. There are good ones but you’ll shell out $10k per month or more.
Believe it or not, the real nitty-gritty deets I’m trying to spare you as it’s as ugly as ugly can get.
Let’s just say when your Mom forgets who YOU are, now that’s a tough pill to swallow no doubt.
I’ll never forget the day I walked through the door and Dad told her “Maria’s here” and she asked who I was and Dad had to tell her-she had NO CLUE.
Needless to say it was a bat to the knees but par for the course, eventually she “forgot” how to walk, talk, eat-pretty much a vegetable at the end.
If you’re going through this (or unfortunately if you ever have to) here are some resources to give you some kind of direction for when a close family member receives a devastating diagnosis.
Heads start spinning when the prognosis is grim so hopefully this helps with some preparation.
Here are 8 steps to take when your family member gets sick
1. Start with the local CHAPTER
Whatever disease state chances are there’s at least ONE group that is well-versed in the disease and can help you better prepare for what to expect. They have resources for ALL the services, products, you name it-it’s all there. It’s a good starting place to get some much-needed direction.
2. Talk to the Clinic Social Worker
Depending on the size of the clinic/hospital either they’ll have a dedicated social worker for the specialty clinic or the actual hospital will have case managers who can help. They are usually more well-versed with different insurance protocols, financial aid possibilities and of openings, if any, at local care centers. They can help answer many of your questions and have placement ins across the region if/when need be.
3. Research EVERY Rx in the Class
Ensure you or your loved ones are prescribed the latest and most appropriate drugs for your diagnosis. Maybe you aren’t a doctor but make sure you are educated about all the products and the reason this particular drug was chosen. I say this because maybe the Doctor was sold one particular drug by someone like me even though there are five others on the market. They could’ve also participated in clinical trials and were compensated by a preferred manufacturer who also provides them speaking engagements-whatever but you never know until you know-so for whatever reason learn what drugs are out there and make sure you know ALL the options and more importantly you are given a choice.
4. Figure out your health insurance
Between your hospitalization coverage and prescription benefit plan be sure you negotiate and most importantly keep everything in network to keep costs in check. Even if you do have to fight to do something out of protocol and receive denials-appeal, appeal, appeal. Fight the fight. We joke in pharmaceuticals that Insurance companies make patients and Doctors offices jump through hoops hoping eventually you give up so do not give up. If you can meet the medical criteria of an appeal, you can fight for anything!
5. Properly allocate your $$$
Get your financial house in order (even if it’s a “small” house;-) you still have a footprint and family members involved so save them the headaches, please. Put things in trusts. Do everything you need to do while still able to do so. Medical expenses are the top reason people go bankrupt in the US so be sure you are covered. Speak to someone who knows and can help.
6. Ask for help
Your immediate family members need to step in. It may be hard for you to ask for help, my father never did, but let me tell you especially toward the final days before Mama was admitted his fuse was the size of a millimeter. Anything set him off. My Dad is the HARDEST WORKER I know and this was the MOST thankless, painful job of his life.
7. Be Empathetic
It will get frustrating at times especially at the beginning when your loved one (and all of you) are trying to process their fate and then toward the end when things are REALLY bad. Be mindful in many cases it’s only going to get harder (and worse and these were the cards you all were dealt) as they feed off of you and if you’re always frustrated with the situation, they will be too which below nobody and nothing.
8. Right your wrongs
No matter which side of the fence you’re sitting on once it’s over, it’s over and you don’t want to live a life of would’ve, should’ve or could’ve. Do it now even if it’s hard, suck up your pride and make sure as best you can everything is tied up because you never know when things go south.
If you or someone you know needs help and is going through something similar, click here.
Everyone who knew my Mama, loved her but let’s just say our last visit with her before COVID she could hardly talk and literally only hissed like a cat.
It scared the hell out of my kids, it was sad-they’ll never remember Mama Rinaldi like they should.
Dad told Wes and my brother-in-law to “enjoy em now because they’re (my sis and I) are going to end up just like her 🤦♀️.” Thanks dad but unfortunately there’s probably some truth to it.
I’ve probably got about twenty solids left. That’s actually one of the reasons I do this blog, so my kiddos (and I) have receipts of everything LOL!
We don’t know, it’s the crazy thing about LIFE we never know what’s around the corner but what it shows us is we need to grab the bull by the horns while we STILL CAN and live life without regrets.
Mama always did!
People have asked if she died from COVID and if so, it’s the best thing that could have happened!!!
Dad took her out of her nursing home everyday up until he couldn’t so once he was out of sight, he was out of mind and she died six months later.
So sorry to be a Debbie Downer here as my sister told me last year my Christmas card read like a suicide note but dementia is a devastating disease and a lot of people don’t understand its’ impact.
Like I used to, they think it just happens to the really old, and believe me ignorance is bliss.
We take our health for granted until something happens. Remember at the end of the day it’s the most important aspect to LIVING so keep it up.
To any of you out there dealing with a devastating diagnosis, please know I feel for you and understand how hard it can be often times.
If you ever need help navigating things, click here.
If you like this check out all my posts here to help you live your best, easy life. Thanks for reading!