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Advance Directives and COVID-19

dementia advance directiveIn a very unsettling development in the COVID-19 pandemic, the Washington Post has an article in its March 25, 2020 edition that reports that some hospital systems in the United States are considering imposing Do Not Resuscitate (DNR) orders on all patients who are admitted with the viral infection.

The implications of this for all of us are worth noting and talking about. If we have advance directives – and we should – and we want all live-saving measures used, including resuscitation, if we are actively dying, the new policy that some hospital systems (in North Carolina, Illinois, and the District of Columbia, so far) are strongly considering will go against our legal and personal wishes. Continue reading

Limbic-Predominant Age-Related TDP-43 Encelopathy (LATE) Dementia Identified

LATE Dementia IdentifiedA new type of dementia has been identified. While it may look like Alzheimer’s disease, it differs in significant ways. Researchers suspect it’s even more prevalent than Alzheimer’s disease – and may be part of a mixed-dementia diagnosis – but that remains to be seen.

The new type of dementia is called limbic-predominant age-related TDP-43 encelopathy or LATE dementia. The symptoms of LATE dementia and Alzheimer’s disease can appear to be similar, but while Alzheimer’s disease is the accumulation of plaques (beta-amyloid proteins) and tangles (tau proteins) in the brain, LATE dementia occurs because of the misfolding of accumulated TDP-43 proteins in the brain.  Continue reading

Mother’s Day 2018

Mama is holding Deb. Greta is beside her. And I’m on the end. Deb and I were 4 months old in this picture.

It’s hard to believe that it has been six years since the last Mother’s Day I spent with Mama. It seems like a minute ago on one hand and like an eternity on the other. 

There is not a time when I don’t miss her, wondering what she would say or think about things with us kids, her grandkids, the world. In many ways, just like with Daddy, I’m glad she’s been spared the last six years. 
Continue reading

Hurricane Preparation Tips for Caregivers and Everyone Else

Hurricane Irma September 6, 2017 Satellite Image in ColorSince as of September 7, 2017, there are three hurricanes in the Atlantic Basin in the United States (Hurricane Irma, Hurricane Jose, and Hurricane Katia), and it’s fairly certain that Hurricane Irma will affect the southeast coast from Florida to North Carolina, after devastating the Caribbean, and caregiving for our loved ones doesn’t stop just because of weather, here are some tips to help you throughout the crisis (hurricane recovery is long-term). Continue reading

Elder Abuse Awareness Day – June 15, 2016

Elder Abuse Awareness Day: June 15, 2016There are many forms of abuse that humans can inflict on other humans. We see these kinds of abuse – and sometimes experience them ourselves by being on the receiving end – in action on a daily basis in the world around us.

While you and I may be strong enough, savvy enough, knowledgeable enough, and aware enough to recognize and prevent (or avoid or remove ourselves from) these manifestations of abuse, the most vulnerable people in our human family – children and the elderly – are often the most susceptible to and unable to protect themselves from these kinds of abuse. Continue reading

2015 Research Offers New Insights Into Lewy Body Dementia – Part 1

Lewy Body Dementia (graphic courtesy of the Lewy Body Dementia Association - http://www.lbda.org/)In 2015, a significant amount of research was dedicated to better understanding what I believe is the least understood of the major types of dementia. That type of dementia is Lewy Body dementia.

This post will will begin to summarize the findings of this latest research in way that is both accessible and will hopefully better educate us as caregivers of loved ones with Lewy Body dementia. Continue reading

The Fallacy of “Silver Bullet” Solutions to Dementias and Alzheimer’s Disease

There are no silver bullet solutions for dementias and Alzheimer's Disease. Believing otherwise is both ignorant and dangerous.There are no “silver bullet” solutions to the growing epidemic of dementias and Alzheimer’s Disease among the human population

Almost daily, there are reports – from the internet, which is a numbers game in terms of reliability and accuracy of information (the more hits a site gets, the higher it appears in the search engines), not an indicator of expertise and factual information – of “silver bullet” solutions to these neurological diseases.

I suppose, because of the devastating effects of the journey through dementias and Alzheimer’s Disease that our loved ones experience and we, as caregivers, intimately deal with as we go through the journey with them, that we all our susceptible to a measure of magical thinking that leads us to even remotely consider or believe the most outlandish – and patently false – claims that a solution will reverse or cure these irreversible and incurable neurogically degenerative diseases.

What makes me angry about the “silver bullet” solutions that keep cropping up is that they prey on the vulnerable (and that includes us, as caregivers), giving false hope and, often, reaping a huge monetary reward (if they’re selling the “silver bullet” solution) at our expense.

This conduct is shameful. This conduct is cruel.

How can we as caregivers avoid falling into the “silver bullet” solutions trap?

We must thorough educate ourselves about dementia and what's true and what's not.First, we must educate ourselves and study diligently to learn and know the facts about dementias and Alzheimer’s Disease. We must understand the physiology, neurology, and neuroscience of the brain.

Going Gentle Into That Good Night has many, many articles that detail, from a layperson’s point of view, each of the dementias, including Alzheimer’s Disease, as well as factors in their development and the prominent indicators of each type of dementia.

you-ought-know-dementia-going-gentle-into-that-good-night-book-coverSecond, we must understand dementias and Alzheimer’s Disease in terms of their steps and what to expect in each stage and how to walk with our loved ones with these neurological diseases through each step

This is not the oversimplified stage progression that the Alzheimer’s Association (which does not include details of exactly what happens in a detailed and sequential way and nor what and how we caregivers successfully navigation through the journey of these diseases).

Without a deep and thorough understanding of how dementias and Alzheimer’s Disease begin (often decades before any overt symptoms appear), progress, and end, we will be susceptible to the false information and misinformation of “silver bullet” solutions, which will do neither our loved ones or us any good, and will only add additional unnecessary suffering to our journeys through these neurological diseases.

Ignoring or avoiding this aspect of our educational process will not make the development of the development and progression of dementias and Alzheimer’s Disease go away. Instead, it will only make the journey for our loved ones and us as caregivers harder, more painful, and more sorrowful than they should be or need to be. The choice is ours.

Discern between credible information and uncredible information about dementias and Alzheimer's DiseaseThird, we need to become experts at discerning credibility and balderdash in the information coming at us.

I see articles all the time (not in just discussing dementias and Alzheimer’s Disease, but everywhere in life) from websites that are clearly not credible – look at the website name first and that will give you good insights into the quality of the information source – (and the information is misleading, at best, and totally false, at worst) presented and endorsed by a surprisingly high number of people as “truth.”

That is because of profound, and in many cases, willing ignorance. We, as caregivers for our loved ones with dementias and Alzheimer’s Disease, cannot afford to be ignorant about these neurological diseases.

There are plenty of snake oil propagators and sales people on the web. They want you to believe them either because they want to make a name for themselves or they want your money. Or both.

It’s that simple. We must be vigilant to not fall for the snake oil propagators and the snake oil sales people. We – and our loved ones with dementias and Alzheimer’s Disease – will be the losers in this equation. Always.

Humans have an unbelievable capacity for magical thinking in spite of the facts and evidence to the contrary right in front of them.And, fourth, we have to recognize our own capacity for magical thinking. Even as children, we have an innate capacity to believe things that are unrealistic or untrue, but they are how we want them to be.

That is part of being human. While there is an aspect of this ability that feeds imagination and creativity productively, the majority of it leads us to the unhappiness of disappointment, disillusionment, and denial of what’s right in front of our faces.

That does us no good and it does our loved ones with dementias and Alzheimer’s Disease no good. In fact, it does us all a lot of harm in the long run.

We must be willing to confront these neurological diseases head-on, realistically, without the blinders of illusions and false hopes hindering our competent, compassionate, and loving care for our loved ones with dementias and Alzheimer’s Disease.

Our loved ones are depending on us to do this. They deserve our best and most-well-informed efforts on their behalf because they’ve placed their trust and their lives in our hands.

What will we do?