Many of these toxins, including the beta amyloid proteins associated with Alzheimer’s Disease, if not removed, are directly responsible for neurological damage and decline, resulting in eventual cognitive impairment and dementia.Continue reading →
“War is hell.” General Sherman Tecumseh Sherman (1820-1891), who led Union forces through the South during the United States Civil War, made not only this insightful observation on the nature of fighting wars, but also added “War is cruelty, and you cannot refine it;…”
The ultimate purpose of war is malevolent: to maim, to injure, to destroy, and to kill to force one group of people to surrender to another group of people. Continue reading →
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.
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.
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.
This post begins a series that provides us as caregivers a perspective into the behaviors of our loved ones with dementias and Alzheimer’s Disease that I’ve never seen discussed anywhere else.
I’m a big-picture person. I believe that there are tangible connections among things for everything and everybody.
In other words, nothing is random, even if it appears that way. There’s a logic to everything and everybody. However, the only way to find the order and the logic is to back away from the immediate present and abandon the tendency to believe that it exists in a vacuum.
Nothing and nobody exists in the vacuum of a moment in time. Everything and everybody is the sum of their parts over a continuum of time.
By looking at the whole picture of our loved ones’ lives – life experience, temperament, and personality/quirks/flaws/foibles (which we all have, by the way) – we can gain insight into how those factor into the behaviors we see in their journeys through dementias and Alzheimer’s Disease.
Knowledge is power in this case. Because if we understand what factors of a lifetime are driving the behaviors we see, then we can find ways that are beneficial for us and for our loved ones to respond to those behaviors.
I will be the first to admit, from personal experience, getting our responses consistently right is not easy and, at times, because our own emotions (especially as children or grandchildren dealing with parents and grandparents where the landscape, even in the best of circumstances, is complex and complicated) are intimately involved, we will fail. We will fail miserably.
But, as with anything else in life, we have two choices after we fall flat on our faces. We can either quit in defeat or we can get up and try again with more resolve to move forward successfully.
It’s my opinion that a substantial part of the fatigue that we experience as caregivers for our loved ones with dementias and Alzheimer’s Disease is not physical, but instead emotional and mental.
And the resolve to not quit emotionally and mentally in going through this journey with our loved ones is a significant contributor to that fatigue.
Do it anyway. For them and for ourselves. Because when we stand alone at the end of this journey we will find out that we gained more than we lost.
We will know ourselves better than most of us probably really want to know ourselves.
We will find strengths that we didn’t know we had. We will be surprised at our endurance and the levels of adversity we had to persevere through.
But we will also find our weaknesses and we will see our shortcomings. A lot of these come to light in the years that follow the journey through dementias and Alzheimer’s Disease. They come to the forefront of minds slowly as we consider and reflect on the journey.
As painful as that is – and it is very painful – it is positive. Because once we see areas where we need to change, we have the opportunity to change. We have the opportunity to continue to reap the benefit of growth.
That’s why I personally advocate remembering, examining, and considering the journeys we’ve been through with our loved ones. Some people are not able to do that and that’s okay, but personally for me, it has been an unparalleled period of change and growth in my life.
Life experiences factor significantly into the behaviors of our loved ones with dementias and Alzheimer’s Disease.
Because short-term memory is impacted more than long-term memory and the core of our perspectives on life are formed during the early years of our lives, the life experiences of the first twenty years of our loved ones lives seem to drive some of the behaviors we see.
For example, my mom’s mother died when she was three days old. Her 78-year-old grandmother and 80-year-old grandfather immediately took Mama and her dad – an absent binge drinker under stress (he disappeared for several days after his wife died while the maternal and paternal grandmothers fought over custody of his daughter) and a World War I veteran whose lungs had been permanently damaged in a mustard gas attack in France – into their lives.
Although Mama was loved, it was an unsettled start to life with constant moves and frequent absences of her father (hospitalizations at the VA hospital, drinking binges, and a few arrests for public drunkenness).
When Mama was five, the fragile environment of love began to disintegrate.
Her grandfather, her best friend and trusty ally, died. A year later her father succumbed to pulmonary disease.
The memory that haunted her most of her life was the 30 minutes or so before her father died. He told Mama he wanted to talk with her, but she wanted to go outside and play with her cousins. Her father kissed her and said, “Go ahead.”
That was the last time Mama saw her father alive and her guilt over not knowing, because she was six years old, that he was dying and not staying with him when he wanted her to followed my mom all her life.
Shortly after her father’s death, Mama was sent away from the family she knew and loved to live with an aunt she didn’t know and who didn’t want her. For the next 12 years, Mama endured hell on earth. She was all alone in the world. She was mistreated, lied to, and stolen from.
Mama finally escaped and was able to overcome a lot of adversity to become an incredibly accomplished woman and the mother that I loved with all my heart, the wife that my dad cherished and was completely devoted to, and the friend that so many people loved and cherished.
But the road to becoming those people was strewn with a battle to overcome fear, anger, resentment, and bitterness, which Mama finally did in late middle-age. But the one thing Mama never completely overcame was her suspicion that people couldn’t be trusted and, given the opportunity, they’d take advantage of her.
When Mama’s dementias and Alzheimer’s Disease were in full bloom, those life experiences of her first 18 years were primary factors in her behaviors.
The loneliness came back. The fear came back. The anger came back. The bitterness came back. The resentment came back. In full force.
And her normal tendency toward being suspicious of everyone as a possible threat to take everything away from her blossomed into a full-throttle paranoia that I wouldn’t have believed unless I’d been the one who’d seen it and been on the receiving end of most of the time.
All of these things took me by surprise because they all came at once in high gear. I was overwhelmed and unprepared emotionally and mentally to deal with the onslaught.
At first I blamed myself. I kept wondering – and looking for – what I had done or said to trigger Mama’s behaviors. Every place I even thought there was a possibility that something I’d said or done was the trigger, I changed immediately.
But Mama’s behavior didn’t change. In fact, it got worse.
It was hard not to take it personally. There were many times when I’d walk away to defuse the situation and just sob because I didn’t know what to do and I couldn’t help Mama.
But I thought about the whys of Mama’s behavior day and night as I searched for answers and ways that I could help. And in the process, I found compassion, empathy, and patience.
Why? Because I realized my mom was that scared six-year-old little girl who had her whole life ripped apart and thought she was all alone in the world. And that six-year-old girl knew what lay ahead in the next 12 years of her life and she was determined not to let it happen this time because all of the emotions associated with that were front and center.
My understanding of how my mom’s life experiences were factors in her dementias and Alzheimer’s Disease gave me insights into why she was doing what she was doing and into ways that I could tangibly quiet her fears and soothe – not entirely – those raging emotions associated with the most disruptive time of her life.
So I urge all of us, as we’re able, to go back over our loved ones’ lives and see where the connections are, even as far back as early childhood, that factor into the behaviors we see as they walk the journey through dementias and Alzheimer’s disease.
I promise you that it will be worth it not only for us as caregivers but for our loved ones as well.