Updated: Aug 20, 2021
Don't Wait - Put a Pitchfork in It
Disclaimer: This post contains information and opinions from someone with no background in medicine or science (proceed with extreme caution). Please consult with your own trusted medical and legal practitioners before making any decisions about diagnosis, treatment, estate planning, or outcomes for dementia or any other condition.
Dedicated to Dad:
February 12, 1935 to June 30, 2017
“All those powers, and I couldn’t even save him.” - Clark Kent
(Superman: The Movie, 1978)
What do we do when we see the forgetfulness movie playing again in ourselves or a loved one but do not want to believe that it’s really dementia?
“She’s always been like this, right?”
“Maybe he’s just having a bad day?”
“He’s still so smart - how could this be?”
“What stage is this?”
What are your own questions?
Please allow this post to offer practical advice on how to know if you or a loved one has dementia. To me, *may have* just wastes time. There is no reason for “may have”: it’s either yes or no. All that matters is how much time and what type dementia (the D)?
For clarity: I live in reality and am grounded in the terrifying truth that we each may get Alzheimer’s or some other horrific disease because we all gotta go but I will fight these deadlies as millions around the world; and, have read that there could be 400 different types of the D! How do we slay this beast we cannot grab and pummel with puns? We cannot wait to know our own brain truths even when there may not be anything that we can do to reverse or to treat the 400-ish phantoms in our midst.
Adding to the terror is declining quality of midlife - already among the population most vulnerable to dementia and perhaps most benefitted by prevention depending upon the disease.
For this reason: BE URGENT and mindful toward prevention NOW (sorry to yell) but have learned this the hard way in losing five loved ones to confirmed Alzheimer’s and will be damned if anyone in our family becomes #6 - especially with what we have learned since the day Dad died four years ago.
For this post, please know the “we”, “our”, and “their” means either you, a loved one (or both) for brevity.
1. Again, don’t wait. Whatever you decide - never delay treatment if chosen.
2. Ask: Do we want to know? This is an extremely personal decision with critical implication for their future mental and physical health. Some questions to consider when trying to decide:
Will this diagnosis ruin our lives; or will knowing mean empowerment to make more decisions?
What is our financial situation?
Do we have insurance (health and long-term care)?
Do we have a state licensed medical care team (or state licensed individual) that knows that Alzheimer’s CAN be a REVERSED condition (contrary to what we experience in most medical office visits to date in the United States) and that dementia *might* be prevented without further brain damage if caught early enough? Wouldn’t believe this if haven’t LIVED it! More on this in a future post.
Even if treated, are we prepared if these treatments are not a cure?
Are we prepared to make major changes to our lifestyles to stop dementia including: continuous nutrition, exercise, and supplementation?
Would we consider a DNA test for a more precise diagnosis that would allow for tailored treatment? Or, does DNA seem like a dystopian mystery novel?
What access do we have to medical care?
Are there medical providers in your areas that specialize in the Bredesen Protocol featured in the book: The End of Alzheimer’s by Dale Bredesen, MD. Here also are his thoughts on the latest and controversial new Alz drug Aduhelm (aducanumab) which was voted against 10-0 by the advisory panel before its FDA approval which then led to three resignations in protest. If not, how will you assemble a pro team to help? Demand to know and never fear to ask for help even if you think you cannot afford it!
These are a few questions to consider when the doubt monster grabs you and snarls: “Give up.”
Do not go gentle, dearest Rage. Be unsatisfied. Ask questions. When a doctor offers you a pill to slow down the disease then…Run!!!!! For no one wants to live *longer* with dementia. Right?
Instead, accept that what we have for dementia treatment is unacceptable AND there’s a better way. When the best you get is a 15 minute visit from the doctor to discuss dementia symptoms then you know immediately that the system for caring dementia treatment has failed.
We cannot afford treatment.
You’re not alone. Neither can about 69 percent of people living in the US right now. It’s all from the majority that cannot get $1,000 in an emergency; or, to have affordable (if any) health care; or, to afford the expensive supplements and DNA tests recommended by health care specialists who know right now that the way to slay Alz if caught in time.
What to Do If We Cannot Pay?
The financial complexities of Alz prevention are enormous and will vary with each individual but let’s take some worst case scenarios right now in the US:
Low or no income (the 69%);
No health insurance or underinsured with plans that do not cover actual needs;
No medical access to licensed MDs who specialize in dementia prevention (most cities won’t have them, yet, much less a small or mid-size town). Here’s an Unlocking Us podcast interview from Brené Brown with Jason Karlawich, MD to help explain why for the past 20+ years in the US no medical schools have been adequately trainingdoctors on how to recognize (must less treat) Alz or other dementia.
Food insecurity (own definition): the inability to get any food that include nutritious and organic options (fresh veggies, meat, and minimal fruit since added sugar is devastating for the brain). Plus, it’s the reason we cannot survive on fruit alone.
The reality for everyone in the US is that these four (or combo) are the biggest barriers in the US to all healthcare with dementia prevention being available to few as an optional luxury.
A few years ago, was mortified to see the unhealthy processed food options being given to children and adults in a local free meals program. Yes, gratitude is important to have a meal at all but what about the
primal and religious compassion to care for one another as we would ourselves? Am not denying the critical importance that having a free meal means when you have no other options. What I will complain about is that the meals given were all preprocessed and packaged
with ZERO fresh veggies or nutrients beyond starchy carbs which are sickening (literally) as a probable indicator for why Alzheimer’s and Type 2 diabetes cases are on the rise in this country and we cannot defeat dementia by eating and triggering our inflammatory response.
What Can We Do?
Try to find ways to improve your health that don’t cost money (as helpless as this sounds). Here are some ideas from personal experience with no expertise.
ps: I apologize in advance if this list makes me look like an asshole. I know what it’s like to scrape by on minimum wage as a (once) single person and being unsure on paying rent each month. Please consider these as options and not as directives. Let’s face it, at least 69% of our country is one paycheck away from poverty to include being without a place to live if we cannot come up with $1,000 in an emergency.
Whenever possible, spend money on fresh food rather than anything prepackaged. Better to buy a head of lettuce rather than a loaf of bread (for example)
Sugar and alcohol are never healthy. Latest research is alcohol is never good for the brain.
Starchy foods are as unhealthy as candy - you may have to eat them but try to find produce first (with organic ideal for brain health if not the wallet)
If possible, eat SMASH fish: sardines, mackerel, anchovy, salmon, or halibut (all are excellent for the brain).
This industry is unregulated in the US - proceed with extreme caution
Before taking any supplements, ask your medical provider to order bloodwork. These results (once a year) will tell you what pills (if any) you actually need
Eating healthy might mean that you won’t need as many supplements per day (ex. An anchovy a day keeps the daily Fish Oil pill away and these supplements tend to be much more expensive than food).
Never take supplements without talking with your trusted medical pro because these can cause problems if not monitored
Exercise (ugh) or yay if this is enjoyable
To prevent Alz, we need to move much more and ideally get the heart rate elevated each day without burnout to prevent cardio damage. This costs nothing but time and supportive shoes.
Turns out, in this fictitious Buffy episode, dementia is not the Devil. We are living in a US medical and social system that prioritizes profits before patients with care going to those who can afford it. For this reason, please keep reaching out for help from anyone who will listen. Too often, we give up when unheard but, we’re not living in the actual Hush episode, and no Gentlemen monsters can steal our voices.
We could not save Dad, Mom’s parents; or, her two aunts from the Big Bad Dementia but I promise you now that we can each learn from one another to be the Dementia Slayers we are each meant to be.
Until next time: “Be brave. Live.”