Posted 6/9/20
Howdy all! Another day in paradise here. Hope the same for you, except that it be true. In reality, all could be much worse. I love my family. I love my job. Mom’s health, while by any definition is grave, is manageable and she is still seemingly happy. Things could be much, much worse. So, for these things, and you, I am thankful.
Overnight, as if the strange bedfellows of pandemics, race riots, murder hornets, zombie rats, and the next 12 things that will kill us aren’t bad enough, we had a hurricane-ish visit. Tropical Depression Cristobal arrived at the Ozarks and brought with it intense rain, for the most part. Note: The primary difference between a tropical storm and depression is that a tropical storm features winds between 39-73 MPH whereas a tropical depression is less than 39. Interesting fact, blog boy, but can we learn about dementia now? Yup…let’s do both!
Ten Things You Can Learn About Dementia From a Hurricane
- Hurricanes and dementia are common. One historical study listing hurricanes states that between 1851 and 2012, there were 296 statistically-useful hurricanes in the United States. There have been 12 more have make landfall since 2012, despite predictions of many more due to climate change. There have been countless storms that either didn’t hit land or were very small and considered not statistically worthwhile…but they were to those in their wake. Therefore, on average, two biggies hit every year and many more less big hurricanes. They hit all over the East Coast and the Gulf of Mexico. While hurricanes don’t hit the West Coast due to water temperature and wind direction, they can originate in the Pacific as a typhoon and hit Hawaii and other United States interests. In summary, they happen a lot and they are bad. Dementia happens a lot too. In fact, you are far, far, far more likely to die of dementia than a hurricane. The Alz.org 2020 Facts and Figures publication states that 5 million Americans currently have Alzheimer’s or related dementias and all will die unless they die from it of something else first. The same report estimates this number will grow to 13.8 million in the next 30 years. That, friends, is a lot of good folks. 🙁 We need a cure, and
soonwe need it now. - Both have always been around. Hurricanes (and similar) have been recorded, whether in written history or oral tradition, since over 10 centuries before Christ. Christopher Columbus’ expeditions spotted them in the late 1400s, but there were cases all over the world that long predate that. The Great Blue Hole off the coast of Belize provides clues of this long hurricane tradition as well. There was a major study that chronicles 5,000 years of hurricane history. In summary…they have been around a long time. While dementia has always been around as well, we see and understand it infinitely more now than we did when Dr. Alzheimer first coined the term in the early 1900s. The primary reason for this is that the best predictor of whether you will get dementia is age…and folks live a heck of a lot longer now than then. In 1900, the average life expectancy in the US was in the mid-to late-40s. Some lived long enough to be statistically more likely to have the disease, but not enough to study, especially compared to the big killers of the day. The study of the disease was slow going until the 1970s. It was mistakenly called “hardening of the arteries” for a long time and was considered a normal part of aging. Others called it being “senile”, a pejorative term at best. Regardless, it has always been around and is just now, since we are living over 30 years longer than in 1900, getting the much-needed research. It kills more than breast cancer and prostate cancer combines…I suppose it is time. 🙁
- The pressure varies. Watch these first:
Interestingly enough, the lower the pressure within a hurricane at the ocean’s surface, the stronger the hurricane is. In a roundabout way similar, in dementia, the stronger the response to the disease, the lower the “pressure” is. The disease itself is often a constant, to a point. There are things we do that exacerbate the problem, whether it be arguing, not getting respite help, not making the home fall-proof and the like, but the progression is going to happen either way. Even when taking the lone family of drugs proven to extend the early stage of the disease, the duration is likely to be the same. However, if we build a good care team, if we work with the Alzheimer’s Association and with our local Area Agency on Aging and later with hospice, we take some of the pressure off of everyone involved and can make lemonade out of some really anemic lemons.
- Causes are still under investigation. Pretty simple to see why hurricanes happen. Here ya go:
What is up for debate is why they get more or less frequent and/or strong. Some of the biggest and strongest hurricanes in history happened long before we were afraid of climate change and even since the theory became the dogma the data doesn’t prove a link. There are likely many causes which makes long-range modelling very hard. Dementia is that way too. There is not a single cause in most dementias. Sure Tau tangles and Beta Amyloid plaques are blamed, but that doesn’t explain why sometimes folks with a brain full of these anomalies do just fine, thank you…and why others get the disease with a minimal problem with them. Lifestyle, genetics, injuries, bad habits, etc…all contribute to increasing the odds. Maybe climate change is a factor to hurricanes. If so, it is a factor, not the cause. Same concept with dementia.
- There is no cure for either. There was recently a law proposed that would guarantee that we would never try to destroy a hurricane with a nuclear bomb. I don’t know what Wil-E-Coyote suggested this as an option, but he or she needs to stick to taking bribes and/or insider trading. Here is why:
Dementia has no cure, nor any life-extending treatments. It is the only one of the top ten killers that can “boast” that. Nope, not even your CBD oil touches it more than giving you the munchies. (Think shooting a squirt gun into a hurricane…)
- Lines in the halls. I spent a few weeks helping Hurricane Katrina cleanup back in 2005. Even after several months, it was shocking. Tragic. Downright scary. One little example: One school I was assisting cleanup nearby had marks drawn on the very highest point of the walls in the hallway. There was a marker that explained what the marks were signifying. That was the water level…over 15 feet deep. Nobody could escape that. In some ways, mom’s progression to where she is now has been like a slow-moving flood. It is one thing to have a tornado come by and destroy your school, as happened in Joplin…but another thing altogether to have tornado-force winds outside, while your school fills up to the brim with an ocean’s surge. Devastating. Flash to dementia and see one member of the Sweet 17 who was a teacher for 40 years…a truly brilliant lady I have zero doubt slammed hard by Lewy Body dementia. She had tremors, she hallucinated constantly, and she had the normal, telltale signs of dementia. Devastating.
- Strange symbols. During early Hurricane Katrina cleanup, as you would walk the abandoned streets you would see oddly painted symbols on the sides of houses and businesses. These X-Codes were an attempt to be less morbid, but to tell search teams that a building had been thoroughly checked, how dangerous it was, and whether there were deaths there (possibly still bodies inside, early in the response).
Every nursing home is different, but most I have visited have their strange symbols too. The most glaring…the one that most reminds my wandering mind of these Katrina symbols is the door symbols reminding staff who has resuscitation/life-saving orders and which do not. Walking up and down the halls, I look at these symbols and get happy and/or sad a lot. It is a very personal decision. It is one to consult with family about before the storm hits. Strange symbols indeed…
- Are we doing enough? Really starting with Hurricane Katrina, and with all disaster since, everyone piles on to FEMA and the presidency for the recovery effort, without regards for the scope of the problem. Have there been mistakes…terrible one? Yup. But, every FEMA worker and every disaster preparedness and recovery person I have every worked with tried to do a good job. Some tried harder than others…sure…but they tried. You can’t completely predict the Joplin Tornado/Hurricane Katrina scope of storms…all you can do is learn from them while doing your best. Are we doing all we can in the pandemic? In the rioting? Nope…but not for lack of trying. Uncharted territory lends itself to second-guessing and miscommunication. Armchair leaders are everywhere(!)…especially in social media in their mom’s basement. We try and we fail…but we try. In dementia research, we are certainly trying as well. It does make me a little nervous to place all of our eggs in the Beta Amyloid/Tau Tangle basket, if you will, but thousands of studies have been conducted and continue to be held (when allowed to because of the pandemic!). We will get there. I understand the impatience…I truly do. We have 5 million loved ones weathering the F-100 hurricane waiting inside of our Superdome. My intent isn’t to compare, but to empathize. It stinks…and more can and should be done.
- There is time to prepare. One of the semi-nifty things about hurricanes compared to tornadoes is preparation time. Typically you have a good week to either board up your house and prepare to sometimes foolishly “wait it out” when a hurricane is coming to your neck of the woods. A tornado? You get a few minutes…maybe. 🙁 Dementia is a marathon. We technically have a lifetime to prepare, especially if we know our family has a tendency to have it (like me.) We can and should exercise, eat right, manage our blood pressure, sleep enough, manage stress, and protect our head from injury. If we expect we may have the disease sooner than later, we set up a care team, we talk to an elder law lawyer, we make our end times wishes known and we do our best. There is time to brace ourselves…
- BUT, nothing can prepare you completely. There are soooooooooo many challenges with hurricanes that we can’t prepare for every scenario regardless how hard we try. I helped with one family who lost their grandma because she sheltered in her attic from hurricane Katrina because she was afraid of losing her pooch. Turns out the flood waters rose so high that she and her pup drowned in the attic, with no escape options left. She had a good idea, because who would expect a flood surge THAT high… Terrible. 🙁 I remember hundreds of refrigerators at the curbside awaiting being scrapped and still full of rotten food. When one would get knocked over and open, you could smell it for blocks! Unforgettable. Dementia snuck up on our family like an elephant wearing bells on its shoes and playing a harmonica. We had time to prepare and have done our best…but we are/were still utterly shocked. I hate this disease…and you will too should it visit you…and it likely will. That is why we, as a little group here and duplicated at 10,000 other little groups, won’t stop fighting for a cure and won’t stop helping those with the disease. We must #EndALZ.
Update: Nothing new today. Mom is in the calmer eye of the hurricane and in the eye of our Lord. Praying and wishing for a cure every day. I look forward to doing a window visit for lunch tomorrow unless the pandemic murder hornets riots hurricane causes that to get cancelled too.
My first hurricane wa Donna in 1960. My husband was in the Navy and stationed in Key West. Of course the Navy sent the ships and crews to Panama while women and children were left to face the storm. Fortunately Donna hit the middle Keys and Key West only saw 75 mile winds but I still can see th ePalm Trees kiss the ground with their tops. We loved Florida and saw or ran from several hurricanes over the years. Fate brought us to South Texas where we again mostly evacuated from storms since we were (I still am) full time RVers. Having lived through the nightmare of my husband’s Lewy Body, give me a hurricane any day. Property and possessions can be replaced but the destruction of a loved one by the worst disease known to man cannot.
I completely agree. 🙁 Thank you so much for sharing!