King Salman’s ascent to power is essentially a coup from rival family factions in Saudi Arabia. Alastair Crooke wrote a two-part insightful look into Saudi Arabia’s history in terms of the fundamentalism versus modern fight that has Islam as its backdrop: Part 1 and Part 2.
King Salman and his family (many of whom he has already put into power in direct opposition to King Abdullah’s express wishes for the new government) are much more closely tied to the very strict and fundamentalist Wahhabi sect of Sunni Islam than King Abdullah and his family.
These closer ties to Wahhabism could mean earthquake-like shifts in the geopolitical dynamic in the Middle East and with the West in very quick order.
But I cannot help but wonder how King Salam’s dementia will factor into the mix. My educated opinion is that King Salam will simply be a figurehead with the other people who’ve been brought to power making the actual policies and decisions.
And that’s very, very dangerous for everybody involved.
This post includes an excerpt from chapter 4, which discusses in detail the fourth step in the journey through dementias and Alzheimer’s Disease where visual and auditory perception is affected, resulting in hallucinations.
This chapter shows how these hallucinations present themselves, what the impact is on our loved ones, and how we as caregivers should respond to them both medically and personally with kindness, gentleness, and honesty.
When we practice dishonesty of any kind, we destroy our character and our trustworthiness. Our loved ones entrusted us with their lives. Lying to them breaks that trust.
And once dishonesty becomes a habit in one area because it temporarily makes a difficult situation – hallucinations, for example – seem easier, we will eventually, by default, begin to employ it as our response in other areas of our lives where and when difficulties arise until it affects every area of our lives. That’s how we peeps work, unfortunately.
I know this fourth step will catch us and our loved ones off guard as it emerges, but this chapter offers practical and accessible information to navigate this step successfully.
Excerpt “Chapter 4: ‘When Men on the Chessboard Get Up and Tell You Where to Go'”
“Well-formed and insightful hallucinations (either manifestations of things and/or people who are not there or the perception that still objects are moving) are overwhelmingly prevalent in our loved ones suffering from Lewy Body dementia, where Lewy bodies are present in the temporal area of the brain (particularly in the amygdala and parahippocampal regions).
The amygdala is linked to aggression and emotions, and is involved in emotional learning, forming long-term memories, and the hormone secretion (along with the pituitary gland) that tells the adrenal glands to release the copious amounts of adrenaline associated with the “flight-or-fight” response to fear, anxiety, and panic.
The parahippocampal (surrounding the hippocampus) region of the brain is responsible for encoding and retrieving memories of landscapes and scenery (faces and facial recognition happens in the fusiform gyrus region of the brain).
Early hallucinations are often seen in short-lived episodes of delirium that are triggered by stress (hospitalizations are the most frequent source of this kind of stress and the subsequent episodes of delirium).”
For many of us as caregivers for our loved ones with dementias and Alzheimer’s Disease, we choose to enter into the agreement to care for them willingly, without any compensation (we don’t expect it), aware that, in the majority of situations, we will carry the responsibility with little to no help from others and that it’s a lifetime 24/7 obligation that we’re inextricably bound to until our loved ones die.
We also enter into an implicit ethical agreement with our loved ones when we assume responsibility for their care. We promise implicitly that we will be honest and trustworthy, that we will be supportive, that we will be comforting, that we will be loving, and that our loved ones will want for nothing.
As our loved ones with dementias and Alzheimer’s Disease – parents, grandparents, etc. – did for us when we were babies and children, we promise that, with as much equanimity as possible, we will bear the burdens, carry the worries, handle the vacillations of change, and never abandon them.
The way I always look at this is that our loved ones (our caregivers) when we were babies and children didn’t know what they were getting into. They could not have possibly imagined or dreamed the things we would say, we would do, and sometimes the trouble and mischief we could find without even trying.
And, yet, for most of us, they hung in there with us, even though it was sometimes hard, sometimes maddening, sometimes frustrating, and sometimes almost unbearable (especially in the teenage years). They didn’t put us away some place, complain about the fact that no one in their families was helping out, or scream and rant and rave about us to other people (well, maybe they did to our friends’ parents when they were alone and traded horror stories about all of us, but we never saw any of evidence of that in their treatment of us).
By agreeing to be caregivers for our loved ones with dementias and Alzheimer’s Disease, we agree to do for them what they did for us. To complete the circle of life as we switch roles with them as they begin their exit from the stage of life.
How well are we living up to our agreement in all the areas that we agreed to?
Sometimes it’s necessary to just step back and evaluate the agreement we made, why we made it, and whether we are fulfilling the terms that we agreed to.
I know these diseases take a heavy toll on more than just our loved ones. I walked this journey side-by-side with my mama for several years, at first not realizing fully what Mama was experiencing, and then once I did, dealing with it and Mama according to the terms I’d agreed to.
I had my moments of anger, frustration, impatience, and fear, but overwhelmingly what I experienced was fierce protectiveness, deep compassion, strong empathy, and unconditional love. No matter what I was going through, I knew what Mama was going through was worse. The more fragile her own position became, the stronger mine became to be her comfort, her safety, and her rock – even if, at times along the way, she wasn’t, because her brain was betraying her, able to recognize that.
It was never about me. It was always about Mama. Keeping that at the front of my mind and heart at all times helped me be there 100% all the time to do whatever needed to be done to help her.
This is an imperative mindset for us as caregivers. It’s a rare mindset because it has largely disappeared in the general population that has wholeheartedly embraced the “it’s all about me” mindset.
We live in a society that has become increasingly self-absorbed, self-centered, selfish, and whiney when even the littlest of things don’t go our way. We live in a society that is easily offended and gets hurt feelings on the turn of a dime, that is quick to give up on things and people when the going gets a little rough, that is all too ready to walk away from anything that poses a threat to our comfort zone or might require a little extra work to sustain. (The irony is that this same society expects from us the things it is unwilling to be, do, or give.)
But, as caregivers, we have chosen to take the road far less traveled by. The one that says we’re in it for the long haul. The one that says our skins are thick enough that we learn not to take the effects that our loved ones with dementias and Alzheimer’s Disease exhibit personally. The one that says we love and we care to the end. The one that says we never walk away.
It’s not a road that many are willing or able to walk. But for those of us who have walked it and are walking it to the end, we find that the rewards and the lessons and the love we acquire as part of the journey are priceless. And our loved ones find in us relentless champions, unsung heroes, faithful friends, and beloved spouses, children, grandchildren, nieces and nephews who show them we love them by who we are and what we do.
So let’s never forget the promises we made, the pledges that we made, the trust, integrity, and honesty that we committed to be worthy of when we chose to care for our loved ones. Always remember that they are counting on us to honor those and if we fail them, then who will step in and fill the gap?
I’m actively involved in several online support groups for caregivers and sufferers of dementias and Alzheimer’s Disease.
Again and again, when caregivers post about issues and problems they are having in their roles as caregivers for loved ones who have dementias and Alzheimer’s Disease, I see in the responses, from other caregivers, the overwhelming advice to tell “fiblets” to handle the tough issues or problems.
I have noted that none of the dementias and Alzheimer’s Dementia sufferers in these groups offer this advice. Instead, they stress telling the truth at all times because as loved ones who are suffering with these diseases, they want to know the people they’ve entrusted their care to are being honest with them.
It is only the caregivers who suggest being dishonest and deceitful.
I’d never heard the term “fiblets” until I joined these support groups, but I know what that means morally and ethically. It is a synonymous term for an equally ubiquitous term in the general population: “little white lie.” (Lies, by the way, are lies. All the minimizing adjectives in the world do not change the bottom line of being dishonest and deceitful.)
Each time I see the word fiblet, I physically and mentally cringe. Partly because of the “it’s okay” mentality of those suggesting being dishonest by a labyrinth of excuses and justifications that, in the end, ring hollow.
And I cringe partly because of my own internal rejection of the morality and the ethics of being dishonest with anyone, no matter what his or her current neurological/mental/physical state. Beyond my foundation of absolute right and wrong that says that all dishonesty is wrong, I see the practical and detrimental effects of this practice in the relationships involved.
If I, as a caregiver for a loved one suffering from dementias and Alzheimer’s Disease, am willing to be dishonest about routine matters (e.g., “Dad left the house,” when Dad is actually there or Dad is dead, “I called the doctor,” when in fact no call was made, or “your brother/son was here yesterday,” when he was not or is dead) with my loved one(s), then how can I be trusted, in a general sense, and by my loved one and everyone else in my life, to be honest about anything else?
I destroy my credibility one lie at a time. And I create, in my own mind, each time I am dishonest, a myth that it’s okay, that it’s the easiest way, and that it’s necessary. And, I also am creating a habit that will automatically default to dishonesty any time I face a difficult situation in life. At some point, down the road, I won’t be able myself to know what is true and what is not because of all the lies I’ve told before.
So, not only have I broken the trust of my loved one(s) who’ve entrusted their care and their lives to me, but I have also broken the trust of everyone else in my life.
So, is it ever okay to be dishonest with our loved ones suffering from dementias and Alzheimer’s Disease?
This is a very personal and interesting article. I know my strengthening faith and God’s intervention, profound and miraculous at just the right time, guided me through this journey with Mama and I also know that Mama’s very strong faith guided her in the journey as well.
There wasn’t a day when the 5th commandment, which I call the “bridge” commandment because it applies to both our physical parents and to our Father in heaven, didn’t present itself prominently in my mind. I have always told God that I don’t want a long life (the promise of the 5th commandment obeyed), because a long life is no guarantee of a quality life, but that I want a life that eventually reflects Him completely.
Although I made my mistakes, had my shortcomings, and let Mama down at times along the course of her time and my time together as mother and daughter, just as I’ve made and make my mistakes, have my shortcomings, and have and do let God down at times as He and I have walked and walk together on our journey as Father and daughter, my hope is that the sum total of the balance sheet shows that I took (and still take) the 5th commandment seriously and there’s a positive balance at the end of my time on this earth.