While I have been more acutely aware for quite some time of the areas of misleading and harm that Goldacre spotlights in this book because of my own experience as the medical advocate and primary caregiver for one of my parents and my subsequent extensive research into Big Pharma, Goldacre digs into the details and presents scary and compelling evidence of the total corruption in the industry. Continue reading
This is the fifth installment in a series of posts that includes a brief excerpt from each chapter as a preview of You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease.
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.
Although lying and dishonesty in this step is overwhelmingly encouraged by support groups and resource books – they call these “fiblets” – I am adamantly opposed to any kind of dishonesty with our loved ones with dementias and Alzheimer’s Disease.
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.
This series begins with the forward to the book and an explanation of why I wrote this book and why you should read it.
The steps in the journey through dementias and Alzheimer’s Disease are presented sequentially in the order in which they actually appear in the course of these neurological diseases.
There are no other books that literally walk through each step in sequential order as they emerge in the journey through dementias and Alzheimer’s Disease.
Additionally, there is no other book that discusses:
- The process we as caregivers acknowledge each new step – there is an acceptance period that we have to go through
- The process we use to guide ourselves and our loved ones with dementias and Alzheimer’s Disease through the recognition phase of each step
- The concrete, loving, and practical information on how we should respond and how we can help guide our loved ones’ responses
These are the things that make You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease unique and stand alone in the plethora of books about dementias and Alzheimer’s Disease.
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).”
This article from Science Daily about verbal abuse and its negative influence on the quality of life among the elderly really struck a nerve in me. This is one of my soapbox issues about the care, the honor, the respect – and the increasingly appalling lack of it – we as a society give to the elderly among us.
The old adage “sticks and stones may break my bones, but words will never hurt me” is the one of the most pervasive lies that’s been perpetrated since it was first said in an old English nursery rhyme. The reality is that physical pain heals to one degree or another, but the pain of verbal abuse never heals. Words, once spoken, remain with us until we draw our last breaths.
Just because our loved ones may be experiencing dementias, Alzheimer’s Disease, or other age-related illnesses that impair them neurologically and/or physically does not mean they are oblivious or immune to the tone, the quality, and the veracity of our words.
That is why I wrote “Is It Ever Okay To Be Dishonest With Our Loved Ones Suffering With Dementias and Alzheimer’s Disease?” condemning ever being dishonest with our loved ones, a practice often advised when dealing with our loved ones with dementias and Alzheimer’s Disease.
I caught a lot of flak for that post and got a lot of excuses and justifications (just an FYI: if you have to make excuses and justify behavior, then it’s a good sign that it’s wrong and you know it’s wrong and you are consciously choosing to do what is wrong anyway) as to why being dishonest was okay.
It did not and does not change my position and the reality that being dishonest is not okay ever. Dishonesty is a moral failing at its core (we should strive never to be dishonest with anyone about anything), but it is an equally unacceptable form of verbal abuse for our loved ones suffering with dementias and Alzheimer’s Disease.
Dishonesty is just as much verbal abuse as yelling, demeaning, cursing, and talking about our loved ones as if they weren’t there. Even if they don’t understand the full meaning (and really, who knows how much intuition and understanding is there, but inaccessible in terms of articulation?), our loved ones still react to and fear verbal abuse. Just like each of us does.
Be kind. Be gentle. Put yourself in their shoes and ask “how would I want to be treated if this was me?” Be honest, but do it with love and tenderness. Let your tone always be one that comforts them. It takes effort. It takes self-control.
Sometimes it takes deep breaths and counting to whatever number you have to until you’re ready. That’s on each of us. Because we know better and can do better, while our loved ones don’t and can’t, especially with neurological deterioration.
I’ve been in enough nursing homes and assisted living facilities to see a lot of verbal abuse up close and personally.
It triggers a protective nerve in me that makes me want to go up to those who are doing it and say “You want to pick on someone? Bring it on. But don’t you EVER speak to any of these people, who could be your father, mother, grandfather, or grandmother like this!”
If I could save everyone who has ever experienced this at the hands of a caregiver, I would.
I can’t. But I urge all of us make sure we’re not guilty.
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?
The unequivocal answer is “No!”