Help is Available to Pay for the Medications Our Loved Ones With Dementias and Alzheimer’s Disease Need

Sep17

On top of the devastating neurological, physical, and emotional toll that dementias and Alzheimer’s Disease have on our loved ones, the cost of care – hospital equipment, adaptive devices, supplies, and medications – even when we as caregivers are carrying a fair share of that burden is often financially overwhelming.

Most costly, especially for our loved ones who depend on Medicare (and, hopefully, a Part B supplemental policy and a prescription plan), are the prescription medications used to help manage symptoms and behaviors associated with dementias and Alzheimer’s Disease.

Very few of these medications have generic equivalents, so there is no other option but to buy the Big Pharma patented – and outrageously expensive – medications.

When our loved ones with dementias and Alzheimer’s Disease who are covered by Medicare hit the “donut hole” of coverage, the prescription costs go through the roof because they are billed at full price.

However, there are options available for assistance with paying for these medications all year round.

I’ll summarize the options here:

Do your homework before filling the prescriptions. Big-box retail stores like WalMart and Sam’s Club (Costco and BJ’s as well) have more affordable prices than stores that are specifically geared around selling medication (CVS, Walgreen’s, etc.). Independent pharmacies may be able to give a better price as well.
If the PCP prescribes a medication that the insurance plan doesn’t cover, you can appeal for coverage.
1. The insurance plan will send a letter of denial.
2. Make sure that the PCP provides documentation that the medication is medically necessary.
3. Contact your state’s regulator to ask for a free independent medical review.
Financial assistance may be available.
1. NeedyMeds is a national non-profit organization that helps connect people with financial assistance.
2. Other non-profits who may be able to help with financial assistance for prescription medication are: Partnership for Prescription Assistance, Patient Services, Inc., and Patient Advocate Foundation’s National Financial Resource Directory.
3. Financial assistance – and sometimes free medications – is also available from pharmaceutical companies for medications that are still patented (there are no generic equivalents).

A note from my own experience will save you a lot of time, aggravation, and trouble. Having a PCP or a geriatric psychiatrist deal with the pharmaceutical companies for assistance with patented medications will get the fastest and best results.

The pharmaceutical companies have applications for assistance that the PCP or geriatric psychiatrist will provide. You will have to provide income statements, Medicare expenses already paid, and other expenses related to care. Include everything!

The PCP or geriatric psychiatrist will submit the paperwork and if it is approved, the medication will be sent to them and dispensed from them. The good news is that once you’re in, you don’t have to redo the paperwork again.

Another thing to be aware of is that these programs are not designed just to assist the most economically-disadvantaged members of our society.

The middle-class, which is the largest segment of American society, is feeling the financial squeeze on all fronts more than any other group (and if we are taking prescription medication, we can use some of these resources too for financial assistance to help pay for them). Even though our loved ones with dementia and Alzheimer’s Disease may have pensions, Social Security, and Medicare coverage, the costs of living – and dying – are far outpacing what they have coming in each month.

So this is a potential lifeboat to keep them as financially solvent as possible, while ensuring that they have the medication they need.

Profiles in Dementia: Miss Daisy of “Driving Miss Daisy”

Sep15

Driving Miss Daisy, the 1990 Academy Award-winning movie, is one of those rare movies that is both expansive and intimate as we take a journey through 25 years of the elderly life of Miss Daisy.

Miss Daisy, portrayed by one of the finest actresses I’ve ever seen, Jessica Tandy, is both a student and an educator (she’s a former schoolteacher) in this multilayered drama that takes her and us through the sweeping political and social changes in the three decades following the end of World War II.

The unlikely, and initially unwanted, relationship and friendship that develops between the 72-year-old lively and independent Miss Daisy and the calm and steady Hoke Colburn, portrayed by Morgan Freeman, who is hired by Miss Daisy’s son, Boolie, portrayed by Dan Akroyd, as Miss Daisy’s driver after she wrecks her car for a second time in a short time span is both poignant and endearing.

Although they come from completely different worlds in every sense of the word, they learn a lot from each other and they grow because of each other.

When Hoke comes in one morning after 23 years with Miss Daisy and finds her frantically running around the house because she believes she’s late for school to teach her students, he calls Boolie, who immediately puts Miss Daisy in a nursing home.

Hoke, who now depends on others to drive him around, isn’t able to visit Miss Daisy often, but he goes to see her in the nursing home when he gets the chance.

Boolie has a mostly hands-off relationship with his mother: he loves her and takes care of the practical things she needs, but she’s mainly a nuisance who often gets in the way of the rest of his life. Watching their interaction – and the lack of time Boolie has for Miss Daisy – is reminiscent of what many of us see in our own family dynamics with caregiving in general.

Hoke, on the other hand, is nurturing and compassionate and provides the time and the companionship that is missing from Boolie’s relationship with his mother.

We see the difference in these relationships with Miss Daisy, as well as the rapid decline of dementia, near the end of the movie when Boolie and Hoke go to see her in the nursing home on Thanksgiving Day.

Miss Daisy looks and acts like a shell of her former self. She is unable to communicate and doesn’t seem to recognize either Boolie or Hoke.

Boolie makes quick contact and disappears, while Hoke goes in to the dining room to sit with Miss Daisy while she mostly doesn’t eat Thanksgiving dinner.

Hoke talks with her, both about the past and about his present life. He notices that a piece of pumpkin pie sits in front of Miss Daisy uneaten.

Sensing that Miss Daisy may not remember how to eat the pie, Hoke cuts it into pieces and feeds it to her. We see just the briefest of sparkles return to Miss Daisy’s eyes as she savors each bite and the brief glimpses of recognition Miss Daisy has for her old friend Hoke even through the mostly impenetrable walls of dementia that have enveloped her mind.

I highly recommend Driving Miss Daisy. It is a tear-jerker at unexpected places throughout the movie, so grab the tissues because you’re going to need them, but it’s well worth it.

Profiles in Dementia: King George III (1738 – 1820)

Sep8

King George III was the monarch of England from 1760 to 1801 and the first King of Great Britain and Ireland from 1801 until his death in 1820.

For the United States of America, King George III played a prominent role in both establishing colonies here and instituting the unpopular policies, particularly with regard to taxation, that caused the colonies to rebel, declare their independence from England in 1776, and led to the Revolutionary War that handed the British an unthinkable defeat.

He was known both in England and in the colonies as “Mad King George.”

King George III came to the throne in 1760 at the age of 22, but as early as 1765, he showed signs of cognitive impairment. Although his cognitive decline was gradual and his “mad” bouts were episodic for the next 30 years, King George III showed every sign of neurological decline associated with dementia, as the times when he was completely incapacitated increased and worsened during those 30 years.

King George III’s neurological condition was advanced enough by 1788 that Parliament passed a regency bill to be able to quickly and immediately hand the reins of government over to his son, George IV, at any time.

Although King George III managed to hold on to power in name only for another 23 years, his dementia was so pronounced by 1801 that he was largely unable to govern.

More likely than not, King George III had frontotemporal dementia (an early-onset dementia) and that was responsible for the erratic and irrational behavior that characterized his “madnesses” that are recorded in both the histories of England and the United States.

The damage appears to have been slower than most instances of frontotemperoral dementia, but it is easy to see the the progression of the journey he traveled through dementia.

It is also entirely possible that King George III had developed other types of dementia as he aged. Some of the historical accounts of his later years suggest that King George III also had vascular dementia and Alzheimer’s Disease.

One of the interesting things that occurred to me is the question of whether the United States of America would have ever existed as an independent country if King George III had not had frontotemporal dementia.

While it’s conceivable that at some point the United States would have sought independence as a nation in its own right, you can’t help but wonder if it might have been delayed for decades or even a century or more and it might have been under more peaceable conditions had King George III not been on the throne.

Dementias affect everything and dementias change everything.

For most of people, the sphere of influence affected and changed is relatively small.

In the case of King George III, it affected and changed the world.

Insights: How Temperament Factors Into Dementias and Alzheimer’s Disease

Sep1

In previous posts, we’ve looked at how life experiences and personality, quirks, foibles, and flaws factor into dementias and Alzheimer’s Disease with our loved ones.

In this post, we’re going to discuss how temperament factors into these neurological diseases and how we as caregivers can respond effectively and lovingly to provide balance and still meet the basic needs that our loved ones’ temperaments require.

For the purpose of this discussion, we will look at the big picture of temperaments and the two most dominant categories that each of us falls into: extraversion and introversion.

There are 16 distinct variations of these two temperaments (eight in extraversion and eight in introversion). (You can take free temperament test online to see which variation your temperament is.)

All of us fall into one of those 16 variations (for example, I have always and continue to test out as an INTJ). How we fall into them is what makes each of us unique (for example, I range between 92% and 100% for introversion every time I take the test and I suspect that variation depends on the amount of recharging solitude I have immediately had when I take the tests).

Temperaments are, in my view, a function of genetics. In other words, it’s hardwired in us before birth by DNA (nature).

Unlike other things about humans that are more fluid and can change over time, there is little to no effect from external influences that alters our temperaments.

Extroverts in a family that is more introverted don’t become more introverted, no matter how much pressure, spoken or unspoken, is applied to make them less social and more quiet.

By the same token, introverts born into a family (and into the Western world that places a very high value on extraversion) that is more extroverted don’t become more extroverted.

If anything, extroverts and introverts become even more extroverted or introverted because of the pressure applied because it conflicts with who they are at a very core level.

Whether our loved ones with dementias and Alzheimer’s are introverts or extroverts will be a factor in both behavior and socialization as they go through the journey of dementias and Alzheimer’s Disease as well.

But equally important is whether we as caregivers are introverts or extroverts and how we may need to step outside our natural dominant temperament characteristic to ensure the needs of our loved ones are met.

Extroverts with dementias and Alzheimer’s Disease will continue to crave being social and being with and around people on a regular basis. However, because as neurological changes progress, it is not uncommon to see increased conflicts in social situations (arguing, verbal fighting, anger, etc.) or exaggerated – and sometimes inappropriate – efforts to be the center of attention.

Introverts with dementias and Alzheimer’s Disease will become even more introverted as neurological damage progresses. They will tend to isolate themselves as completely as possible, become completely withdrawn, even from loved ones, and often become completely uncommunicative before they actually lose the ability to speak and communicate.

Neither of these scenarios is good for our loved ones, so it is incumbent upon us as caregivers to try to achieve and maintain as much of a healthy balance for them to meet their needs as is feasible and possible.

In my opinion, this is one of the hardest areas to negotiate effectively and well, and it also requires the most finesse and empathy.

This is especially true if our loved ones and we have different temperaments.

My mom and I were good examples of almost diametrically opposite temperaments. Mama was an ENFP and I am an INTJ. We both had intuition (N) in common, but we were total opposites in every other way, temperamentally.

From day one of our lives together, these differences in our temperaments were a constant source of clashes and contention between us, especially in the early years. Mama would push me continually to be more extroverted and I would push back equally or more tenaciously against it.

Mama would cajole, threaten (and usually follow through because punishment was a better option for me than doing something I could not abide the thought of doing), plead, try to reason, and try to entice me to be more extroverted in a social and a public sense. It never made sense to her that it was agony for me and it literally drained me of all energy and patience.

Ironically, neither my mom and dad (who was also more extroverted than I was, but was an INFJ, so he understood me somewhat better) stopped me at home when I would go off by myself to be by myself, just to get away from everyone else when I was younger and to read, draw, or write when I was older.

But they were both concerned about my lack of desire and enthusiasm to engage in group social activities and to spend a lot of time with other people doing “fun” things. I’m sure there were many bedtime discussions between my parents about me and whether this was normal or was cause for concern.

But eventually, we all sort of adapted (Mama never completely quit trying to push me toward a more extroverted temperament, but when I would finally have a meltdown of yelling and tears in frustration – and sometimes from too little solitude too often – Daddy would intervene and persuade Mama to give me some breathing room and let me regroup, which always worked) and we figured out how to live with and love each other in spite of our differences.

As Mama’s cognitive impairment worsened over the last eight years of her life, she continued to be social and seek social activities and environments. However, as the neurological damage deepened with her, the level and number of conflicts with other people increased.

In the year and a half before Mama was diagnosed with mid-to-late stage vascular dementia and Alzheimer’s Disease, Mama’s relationships with everybody – including me – were much more contentious and much less harmonious.

On a daily basis, Mama would tell me about some dust-up with somebody. Mama had always been a bit on the scrappy side – not in a negative way, but she wasn’t afraid to take people on if they were wrong or she was protecting herself or her loved ones – but she also, because of her intuition, was able to see even the orniest of people objectively and still manage to interact in a positive way, for the most part, with them.

However, as Mama’s paranoia increased, her objectivity decreased and she began to see just about everyone in a more sinister light and as potential enemies. As a result, her social interactions, which she craved, became increasingly tense and hostile.

Just before Mama’s diagnoses and the medications that would balance out the most extreme aspects of the behaviors associated with dementias, Mama exhibited the behavior of an introvert like me.

With a profound hearing loss, Mama depended on hearing aids to connect with the world. Mama would always put her hearing aids on very soon after waking up in the morning so she didn’t miss anything.

In the few months before the inevitable crash that landed her in a geriatric psychiatric hospital, Mama often wouldn’t put her hearing aids in until late in the morning or early in the afternoon.

Mama also started isolating herself, spending the majority of the day in her apartment alone except for the time I spent with her each day.

As I went through her desk and computer when I was trying to make sense of where we were and what I needed to do when she hospitalized, I found that she’d spent a lot of time trying to write, either longhand or on the computer, and as I went through everything, I could see evidence everywhere of steep neurological decline.

It alarmed me to see the rapid progression over a few short months. I can only imagine how much more it must have frightened Mama because she didn’t know what was happening and yet she was aware that everything seemed to be quickly slipping away.

The right combination of medications brought Mama back to her true temperament and it was a relief to me and, I suspect, a relief to her as well.

She was once again involved in a lot of social activities during the day and not only did Mama thoroughly enjoy them, but other people thoroughly enjoyed her (she’d always been the life of the party and a welcome addition to any social gathering).

I made sure to encourage as much social interaction as Mama was up to and I made sure that whatever she needed to be a part of those activities she had. I would often join her in some of them, in spite of my natural aversion to that, because I knew Mama liked having me there with her and I knew that my being there made Mama feel safe.

When Mama came home to live with me, I had to continue to go outside my comfort zone to make sure she had enough social activity and interaction to thrive with her temperament. And, while it was hard at times on me, I never regretted doing that for her.

As the end of Mama’s life was drawing near and she began not knowing who I was on a regular basis and was often unable to recognize people she had known for a long time, I began to cocoon us.

The reasons were because it bothered Mama when she didn’t know people and, because they were strangers, Mama would get fearful (except for me – even when she didn’t know me, she wasn’t afraid of me and she felt safe with me).

So I began keeping the number of people with whom Mama and I interacted small and consistent so that the odds were good that Mama would remember them and so that she would not be scared.

To this day, I struggle with whether I did the right thing by Mama by doing this.

Logically, I know it was the absolute right decision because I didn’t want Mama to feel unsafe or scared.

But emotionally I question whether I should have taken the chance that Mama might have a good day and be glad to see longtime friends.

I still don’t know the answer. That will be just one more of those lingering questions that I’ll probably revisit with no resolution until the day I die.

Global Dementia Report for 2015 Released

Aug25

The infographic above was included in the World Alzheimer Report 2015: The Global Impact of Dementia, released on August 24, 2015.

Dementias of all kinds are on the rise, despite pernicious and false claims that the rate of dementia diagnoses is stabilizing.

With an increasingly toxic planet – air, water, food, soil – our bodies and our brains are suffering irreparable damage over time, and dementias are the neurological manifestation of that damage.

Additionally, we have developed lifestyles – processed and fast foods with chemicals, too much salt, and too much sugar, neurologically-altering drugs (prescription and illegal) that have become the rule, not the exception, and increased alcohol consumption and abuse – that are harmful to our bodies and our brains, resulting in the dramatic rise in both physiological diseases and neurological degeneration.

With technology addiction and sleep disorders/deprivation layered on top of these, we, as a society, are choosing to further increase the odds of our widespread development of dementias.

And to top it off, the general population is getting older – Baby Boomers are about to bust all the rest of us in their old age – and medicine continues its march toward quantity of life (age) instead of quality of life (health).

With all of these factors in play, the reality is that most of us don’t stand a chance of not developing some sort of neurological impairment. It may not be full-blown dementia, but most of us are at high risk.

In some of these things – lifestyle, technology addiction, sleep habits, quality of life versus quantity of life – we have complete control. Our previous habits may have already done irreparable damage, but we have the choice today to say “Enough already!” and change.

But will we?

The pessimist/pragmatist/realist in me says most of us won’t.

I watch myself making every change I can and I watch most of the world around me continuing – even increasing speed and intensity – headlong into the very practices and behaviors we have complete control over that will lead to cognitive impairment.

I have sounded the warning here many times. But I realize that I’m just talking to myself. Nobody else cares, it seems.

At times, I wonder why I care if nobody else does. Talking to yourself is a waste of time, so I often wonder if I’m just wasting my time with this blog. Maybe I am.

But I keep doing the blog because if it helps just one other person on the planet, then that’s one person out of 7.5 billion people that I’ve been able to serve and if I stop, then I stop serving. My conscience and who I am won’t let me do that.

And even if nobody wants to hear it now, maybe in a few years, when I’m dead and gone, and their families are watching them go through the journey of dementias, their families will find this blog and it will help them.

If I leave a legacy, this might be it. I don’t have high hopes for any legacy. People are so hedonistic and narcissistic now that they don’t pay any attention to anything serious or important. I can only imagine that will get worse in the future too.

But even if there’s no use for this information, at least I know I’m doing the best I can to pay what I’ve learned forward and try to help others. The choice of whether they want to learn or ignore is theirs, not mine.

C’est la vie.

Remembering Mama – August 14, 2015

Aug14

Three years ago today at 5:50 pm, my mama’s journey through dementias, Alzheimer’s Disease, and congestive heart failure ended.

With Mama’s death, like my daddy’s death almost 17 years ago, each anniversary seems like yesterday and forever at the same time.

But I’m thankful for the memories to help me try to cope with the permanent voids of their losses in my heart and in my life and I’m thankful for the hope that I’ll see them again whole and healed.

I promised you and Daddy both that I’d be there. God’s willing and so am I. So even on the days when it feels like life is just unbearable torment I continue to put one foot in front of the other with God’s help, enduring, persevering, and continuing to grow in that faith and walking toward fulfilling that promise, even if it doesn’t look like it and nobody else can tell.

But you, Mama, and Daddy would know if you were here and you’ll know when I’m there. That’s often the only comfort I have these days. And maybe that’s all I need when I can see that comfort through the pain. I know it’s worth it because I watched you and Daddy and I learned from both of you.

So I’m remembering you publicly today, Mama, just like I do privately every day of my life. I love you. I’ll see you soon.

“The Tale of Dueling Neurosurgeons” by Sam Kean – Book Review and Recommendation

Aug12

For those of us who are dealing with the effects of cognitive impairment and physical neurological damage in our journeys through dementias and Alzheimer’s Disease either as caregivers of loved ones or as actual participants, The Tale of Dueling Neurosurgeons: The History of the Human Brain as Revealed by True Stories of Trauma, Madness, and Recovery by Sam Kean should be on our reading list.

Each chapter covers a section of the brain, its functions, and how defects change not only that section of the brain, but the behaviors associated with it.

Reading this will give us some excellent insights into the behaviors we see when dementias and Alzheimer’s Disease are present. I always believe that our ability to help and respond well and lovingly with any health issue, including neurological decline, is directly proportional to how well we understand what is happening and why.

My Goodreads review:

“Sam Kean has done a great job of not only showing the history of neurosurgery (all the way back to the 16th century) but also how a handful of people in the space of about 400 or so years discovered key basic biology and functionality of the brain.

Historically, brains have not been treated well and people with neurological defects (birth, genetic, or circumstantial) has fared even less well. Reading this, you can’t – unless you have no heart at all – feel anything but a whole lot of empathy for the people whose neurological defects gave us more understanding about how the brain works.

Except for the discussion of kuru in Papua New Guinea. If getting completely grossed out in detail is your thing – it still makes me shudder and I skimmed over the worst of it as soon as I read the first offending description – you probably won’t mind. I mind. A lot. It’s just too yuck for words.

Otherwise, a very well-written engaging and informative book. And it’s accessible and conversational.

As much as I love the study of neurology and neuroscience, as I actually do biology and medicine, I apparently, though, still have that little glitchy hangup with the dissection/surgery/”Ewwww…I have to touch THAT?” part that goes along with it.

That’s too bad, because except for that, this would have probably been my actual calling in life (there, Daddy, I said it…I’ll tell you in person when I see you again.)”

“Being Mortal” by Dr. Atul Gawande: Book Review and Recommendation

Aug6

After watching PBS’s Frontline program “Being Mortal” with Dr. Atul Gawande, I knew I wanted to read this book with the same name.

It didn’t disappoint. Having intimately walked through aging and the end of life with both of my parents up close and personally, I could nod my head at much of what Dr. Gawande said about life and medicine as it exists today and how it should be instead. Surprisingly, I found some comfort in knowing that my parents and I – although many times it seemed like a David and Goliath battle – together took the right and the best approach toward both.

Everybody should read this book. It highlights one of my mantras about living: quantity doesn’t equal quality and in the end, if there’s no quality, there’s no life.

We Americans especially are on this eternal quest to cheat aging (and spend who knows how much money on one gimmick after another to try to sidestep it or avoid it altogether), so we ignore the inevitable fact that this body is temporary and it starts failing us gradually and slowly from the day we are born.

And because we ignore the aging process, we do not plan and are not prepared – nor, for the most part, is society – for the changes that need to be made, while preserving independence, vitality, and purpose, when we reach the point of physical breakdown where we need help.

We Americans also have been so removed from the process of dying that we literally treat death as an abnormality instead of the expected and intended end of all humans.

Medicine has accommodated this and public policy and insurance companies have thrown their support behind this quest for “a little more time.” What buying a little more time has cost us is a lot of money, more harm than good (the cure is often far worse than the disease), and the loss of quality of life.

Dr. Gawande refocuses aging and end of life through a difference lens. He poses the questions most people, including medical professionals, don’t want to ask, but should ask. And we should answer.

Some of us will die suddenly – the reality is that no death is unexpected, because that’s the end game for all of us. Even if we die suddenly though, there are many things we need to have in place to make our deaths as easy on whoever will be taking care of our affairs afterwards as possible.

If we die suddenly then we may be too young to have to plan for aging well. But many of us will live long enough to come face to face with the aging process. Without a plan, all bets are off.

If we want control over how our lives go when we age to the point where we need help and we want control over how our final years, months, weeks, days on this earth unfold in terms of what’s most important to us (family, friends, faith, being at home, etc.), then today is the day to start thinking about it, plan for it, and make our decisions known to everyone who needs to know.

Insights: How Personality, Quirks, Foibles, and Flaws Factor Into Dementias and Alzheimer’s Disease

Aug3

This is the second post of a series that provides insights into the behaviors we often see in our loved ones as they – and we as caregivers along side them – walk through the journey of dementias and Alzheimer’s Disease.

In the first post in the series, we discussed how our loved ones’ life experiences factor into a lot of the behaviors we see as they travel the road through dementias and Alzheimer’s Disease.

In this post, we’ll take a look at how personality, quirks, foibles, and flaws thread their way through a lot of the behaviors we see in our loved ones with dementias and Alzheimer’s Disease.

It’s important to understand this and to be able to recognize this because it can help us respond both more accurately and more compassionately and gently to the often baffling and frustrating behaviors that emerge as these neurological diseases progress. In other words, it gives us a context to both understand the behaviors and to minimize or eliminate, in some cases, the effects of the behaviors.

I group personality, quirks, foibles and flaws together because they’re so intertwined in what makes each of us the unique person that we are that to separate them would be like looking at a single piece of a puzzle instead of the whole puzzle.

They also represent both the positive and the negative, the humorous and not-so-humorous, the normal and the eccentric (spoiler alert: there is not a human being on the planet who doesn’t have eccentricities – some of us just hide them better than others), the sane and the not-so-sane aspects that make each of us human and each of us unique.

All of these get exaggerated in one way or another with dementias and Alzheimer’s Disease.

Sometimes that’s okay. Sometimes that’s not.

If an endearing aspect of these gets more endearing, we tend not to appreciate it as much as we should.

However, if an annoying or obnoxious aspect of these gets more annoying or more obnoxious, we as caregivers will, at times, wonder if we will survive the journey we’re sharing with our loved ones intact and in one piece mentally and emotionally.

Personality is generally defined as the unique way each of us consistently thinks, feels, and behaves throughout the course of our lives.

Some aspects of our personalities are dynamic to some degree, changing as we mature and age or because the things we experience and encounter through the course of our lives, but the core of our personalities – the nuts and bolts of who we are at a stripped-down level – tend to be static.

Some of this core personality is genetic – nature – and some of it is early (first five years) environment/experience – nuture.

And this is the part that identifies us uniquely throughout our lives, because it is always there regardless of where we are, what what we’re doing, or who we are with.

Some of our core personality traits can be very good. If we tend to altruistic, optimistic, and malleable, those traits show up early and last even through the journey of dementias and Alzheimer’s Disease.

But even these positive personality traits can be a liability as neurological decline progresses.

If our loved ones tend to be generous and always doing for and giving to others, they very often might give away a lot of money or very valuable things to other people without understanding the financial hardship these losses may incur – and which are often unrectifiable – which may affect their own care.

Additionally, these kind of traits can make our loved ones easy prey for unscrupulous people to take advantage of them and perhaps wipe them out financially.

Other of our core personality traits may present challenges to those around us all our lives. If we tend to be angry, stubborn, and self-centered, for example, these traits also get worse with the progression of dementias and Alzheimer’s Disease.

Unfortunately, it seems that most of us humans – and I will include myself in this (I’ve always said that if I ever develop dementia, they just need to put me down right after the diagnosis because I will be a gazillion times worse than any of the worst horror stories I have heard along the way about the negative side of dementia, and I don’t want anybody to have to deal with that) – have more negative core personality traits than we do positive.

When we have our full cognitive abilities, we have the ability – if we’re aware of these negative core traits and we don’t want them to have a detrimental impact on our relationships – to mute or override them in our interactions with other people.

However, once cognitive decline has progressed far enough to be seen behaviorally, the filters that we used to mute/override these negative core personality traits disappear as does the ability to know that we need to moderate them. And all bets are off.

Some of our core personality traits are so much a part of us that they are us. In other words, we can’t step back objectively and in clarity and self-awareness see them and remove or change them.

This is, in my opinion, just default programming (it may genetic or environmental or both), but no matter how much we try – and some people don’t try (I am always trying to consciously avoid my own, but a lot of mine is already in play before I even know that I’m supposed to be avoiding it – it is one of the things about myself that drives me crazy) because they don’t know and/or they don’t care – it’s there anyway.

These things get exaggerated with the progression of dementias and Alzheimer’s Disease and they can be the some of the most taxing things we as caregivers can deal with because we don’t have the ability to neutralize them in our loved ones with logic, reason, and rational thinking.

I have a very good friend whose father has vascular dementia. He is very demanding, always right, often the misunderstood victim, as obstinate as the day is long, and fighting against anything that takes away any of his independence.

My friend’s dad lost his driver’s license over two years ago when he was pulled over on the interstate for driving against traffic during the day. Fortunately, the police got him off the road before anything bad happened, but my friend’s dad has obsessed angrily about losing his license and not being able to drive since then.

His obsession with being allowed to drive ranges from conspiracy theories – the police, doctors, and his daughter have conspired unjustly against him to keep him from driving – to getting a new glasses prescription (“now they’ll give my license back”) to the humorously absurd (“everybody drives the wrong way down the interstate at least once”).

Additionally, because not being able to drive has made him more dependent on others, including his only daughter (who has a large and dependent family of her own), he expects everyone to drop everything they’re doing and take him where he wants to go when he wants to go and gets very angry if they can’t or won’t.

As his daughter and I were talking about his behavior, she said that her dad had always been narcissistic and demanding, even before any signs of cognitive decline. The world had always revolved around him so dementia has made this aspect of his core personality even worse as he loses ground neurologically.

Foibles, quirks, and flaws are, in many ways, extensions of personality.

The things that make us just slightly off-kilter (quirks) and perhaps are even “cute” or teasingly tolerated can really go off the rails quickly as dementias progress.

Foibles, which are inherent minor weaknesses, like the tendency to laugh at inappropriate times or to chatter incessantly, also become exaggerated during the journey through dementias and Alzheimer’s Disease. These also can be real testing points of our patience as caregivers because there are no boundaries around them for our loved ones as there were when there was no cognitive impairment.

And flaws (examples would be things like argumentativeness, impatience, quick temperedness, aggression, etc.) also become more exaggerated as the journey through dementias and Alzheimer’s disease progresses and there are fewer and fewer inherent abilities for our loved ones to use to practice restraint.

Flaws are perhaps the most scary and the most dangerous aspects of personality that we as caregivers may have to deal with. Because the executive functions of reason and rational thinking are absent in our loved ones, so too is the absence of the understanding of consequences of actions (behavior), which is a restraint in normal cognitive functioning.

Therefore, for example, if our loved one has the flaw of being quick-tempered (which has the emotional component of lashing out either physically or verbally or both if not restrained), there is real possibility of physical injury or death (especially if anything that could be used as a weapon is within reach) by our loved one because they are only able to be in the moment and cannot foresee or even understand the long-term consequences of their actions.

This is why having the insight into the personalities, quirks, foibles, and flaws of our loved ones and how those are manifested in their behavior is so important for us as caregivers.

We can mitigate the possibilities of really tragic outcomes in the worst-case scenarios and we can also come up with effective strategies for neutralizing – it will be temporary at best and we’ll have to do it over and over (this can be a very frustrating part for us) – the behaviors in the moment to make them less disruptive for both our loved ones and for those of us around them.

Do Good Grades and a Complex Career Lower the Risk of Developing Dementias?

Jul22

A recent dementias study made the news with the assertion that it appears that people who make good grades in school and who have challenging and complex careers may have a lower risk of developing dementias.

I don’t agree with this at all.

I also think it gives false hope to all of us not yet showing signs of dementias.

Dementias are complex neurological diseases. Their development includes innumerable factors – most of which we don’t even know – that are involved in their genesis at the organic level (technology overload and addiction, which is rampant now, is definitely one of many lifestyle factors that are inorganic and not even included in the equation).

The reality is that I’ve known quite a few people in my life with dementias, including my mom.

They were excellent students and had very complex and demanding careers, along with personal lives that were filled with learning new things and sharing them in a way to put those things into practice.

Application is the complex side of learning.

There are some people who learn for the sake of learning, but they never do anything with it or figure out how to actually apply it in their lives, so it quickly goes away.

The people who learn and then do something with that learning – application – retain the knowledge and grow in it.

Some of those people that I’ve known, including my mom, were scientists.

Some were multicultural historians and linguists (a study was done that suggested that being bilingual lowers the chances that you will develop dementias).

Some were teachers.

Some were accomplished musicians (there was a recent study that suggested that playing a musical instrument insulates you from dementias).

Some were engineers.

None of these people were slouches as students or in their careers.

In other words, the majority of the people I’ve known with dementias were at the top of their fields academically and professionally, and it didn’t make a difference.

We humans cling to false hope and what we want to be true because it’s easier than admitting how much we don’t know and how much uncertainty lies in not knowing. It’s a form of self-deception that we all are susceptible to.

The best we can do is educate ourselves about dementias. Then we do the hard part of applying that knowledge and making the changes we have control over (lifestyle is a huge factor) immediately to protect ourselves as well as we are able.

How do we do that in practical terms?

Education is the point of and the reason for this blog. I have developed and written and continue to develop and write posts so that this is an exhaustive and comprehensive educational resource on the types of dementia and on practical and in-the-moment caregiving.

There is not another blog out there that looks at these neurological diseases from a big picture aspect – covering all the dementias – and gives caregiving information that people can use today in appropriately responsive and loving caregiving for their loved ones.

Education is also the point of and the reason for the two books I’ve written on practical caregiving and practically understanding, walking through, and responding to the steps of the journey through dementias and Alzheimer’s Disease that we walk with our loved ones.

I urge all of us to know the facts and not get caught up in studies that promise things that are not provable or that are suspect.

Dementias are big-picture neurological diseases with a lot of unknowns that come into play for them to develop. Instead of focusing on a particular type of dementia, focus on what all dementias look like in real life.

Educate yourselves on real life caregiving and how to improve on being loving, kind, and gentle caregivers who also maintain the dignity and independence (as much as safety will allow independence) of your loved ones.

Educate yourselves on what steps you can take to eliminate some of the known factors in your own lives. Then apply that knowledge and eliminate them.

The reality is that the brain is the most complex system in the body and our insights into it have barely scratched the surface of what there is to learn about this incredible control center each of us have been given. The reality is that we will never understand it completely in a comprehensive way.

But Going Gentle Into That Good Night takes the comprehensive approach and, as much as can be understood about dementias from all the possible angles provides that information to you as a resource.

Take some time to read the posts listed on the right sidebar.

There is a search button at the top. Use it to search for topics you’re interested in.

If you don’t see a topic you’d like to see covered, send an email with the topic and, if it has merit, then it will be researched and discussed.

This is our blog. Your participation and input is valuable. I look forward to hearing from you.

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this: