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“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 5 Excerpt

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseIn this sixth installment of brief excerpts from each chapter in the book You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease, we look at the fifth step in the journey through dementias and Alzheimer’s Disease.

This post includes an excerpt from chapter 5, which provides a thorough look at how to acknowledge, recognize, and respond to the fifth step in the journey through dementias and Alzheimer’s Disease when paranoia emerges.

This chapter shows why and how paranoia is part of the journey through dementias and Alzheimer’s disease, the impact it has on our loved ones, and how we as caregivers should respond to them both medically and personally with kindness, gentleness, and understanding.

This fifth step requires a lot of love, a lot of commitment, a lot of sheer determination, a lot of perseverance, and a lot of courage on our part as caregivers because this, of all the steps, can be most brutal emotionally to us personally because it will literally chew us up and spit us out on a continual basis all the way through it.

This chapter offers practical and accessible information to help us and our loved ones navigate this step successfully and intact.

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 series continues with the inclusion of excerpts from Chapter 1, Chapter 2, Chapter 3, Chapter 4, and, with this post, Chapter 5.

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:

  1. The process we as caregivers acknowledge each new step – there is an acceptance period that we have to go through
  2. The process we use to guide ourselves and our loved ones with dementias and Alzheimer’s Disease through the recognition phase of each step
  3. 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.

going gentle into that good night divider

Excerpt “Chapter 5: ‘Confusion Never Stops, Closing Walls and Ticking Clocks’”

“Pervasive paranoia is the next step in the journey of dementias and Alzheimer’s Disease. At some point, hallucinations and paranoia tend to overlap – the hallucinations, especially if they’re scary will elicit panic and anxiety – but paranoia eventually stands on its own as a distinct step in the journey.

Paranoia has a complicated root system that we’ll break down into its components so that we understand why it occurs and what it looks like.

  1. One of the roots of paranoia in our loved ones with dementias and Alzheimer’s Disease is confusion and fear. There is self-awareness, at this point, within our loved ones that something is really wrong. They don’t know what it is, but the feedback around them, spoken and unspoken, tells them that they can’t trust themselves. 

    Persistent hallucinations leave them with blurred lines between what’s real and what’s not. Constant corrections to the information our loved ones believe is true creates widening doubt. Repeated proofs that disprove what our loved ones believe to be accurate create insecurity. 

    All of this also creates anger and fear because humans are wired to trust themselves – their reasoning, their assessments, their intuitions, their processing of the external world – more than to trust any other human being. When that innate ability is constantly challenged and proven faulty, it’s scary and it is infuriating.”

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 4 Excerpt

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseThis 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:

  1. The process we as caregivers acknowledge each new step – there is an acceptance period that we have to go through
  2. The process we use to guide ourselves and our loved ones with dementias and Alzheimer’s Disease through the recognition phase of each step
  3. 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.

going gentle into that good night divider

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).

limbic system structure you oughta know going gentle into that good night books

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).”

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 3 Excerpt

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseThis is the fourth in a series of posts that includes chapter excerpts from 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 3, which comprehensively looks at the the step in the journey through dementias and Alzheimer’s Disease where communication difficulties arise. It discusses the kinds of communication problems that arise and how we as caregivers can help our loved ones bridge those gaps.

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:

  1. The process we as caregivers acknowledge each new step – there is an acceptance period that we have to go through
  2. The process we use to guide ourselves and our loved ones with dementias and Alzheimer’s Disease through the recognition phase of each step
  3. 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.

going gentle into that good night divider

Excerpt “Chapter 3: “’Don’t Think I Know What to Read or Write or Say'”

As more cells die, the functions that these areas of the brain control become more profoundly affected. Language function is controlled in a deeper portion of the temporal lobe, so in the case of just Alzheimer’s Disease, communication problems might not show up for a while.

However, if our loved ones are suffering from other dementias, such as vascular dementia which causes clusters of cell death through the brain, even the innermost parts, because of a stroke or chronic small-vessel ischemia (usually the result of mini-strokes or transient ischemic attacks, also known as TIA’s), then communication problems may occur sooner.

Regardless of how long it takes, communication problems are the third definitive step in the journey, whether it’s a short step or a longer step.

Communication problems in dementias and Alzheimer’s Disease include fall under the general term of aphasia.”

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 2 Excerpt

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseThis is the third in a series of posts that includes chapter excerpts from 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 2, which comprehensively discusses the step where our loved ones with dementia and Alzheimer’s are aware that something’s wrong neurologically, but they don’t know what and the internal and external conflicts that presents for them and us.

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:

  1. The process we as caregivers acknowledge each new step – there is an acceptance period that we have to go through
  2. The process we use to guide ourselves and our loved ones with dementias and Alzheimer’s Disease through the recognition phase of each step
  3. 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.

going gentle into that good night divider

Excerpt “Chapter 2: ‘There’s Someone in My Head, But It’s Not Me'”

“In this stage of dementias and Alzheimer’s Disease, where mild cognitive impairment is more obvious, but the extensive neurological damage characterized by the later steps in these diseases has not yet occurred, most of the time our loved ones will function fairly normally and will be lucid.

However, they have an, sometimes quite acute, awareness of their own mental slippage and that something is not quite right. In other words, they are aware they can’t remember things, they are losing things, they are having trouble following directions, and they can’t seem to hold on to new information for any length of time.”

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 1 Excerpt

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseThis series of posts about You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease began with the forward to the book and an explanation of why I wrote this book and why you should read it.

This post will include an excerpt from chapter 1, which thorough covers the first step in the journey through dementias and Alzheimer’s Disease, which is mild cognitive impairment (MCI).

The title of the book, as well each chapter title, may, depending on your age and musical tastes (mine run toward eclectic, alternative, and indie) sound familiar.

That was intentional on my part for two reasons.

One reason is because music is a universal language, and music can often be comforting to our loved ones with dementias and Alzheimer’s Disease.

The other reason – one that caregivers do continually – was to look at something familiar in an entirely different context that broadens our relationship to and with it. If you’re familiar with these lines (a list of the song titles and artists for each song line/chapter title is included at the end of the book), you will never listen to these songs the same way again after reading this book.

And that’s the point: life is never the same after our loved ones and we have gone through the journey of dementias and Alzheimer’s Disease. Everything changes, including us.

Most of the changes are personal, internal, and deep. They should be positive in terms of growth in love, compassion, empathy, care, concern, gentleness, kindness, patience, and self-control.

But they will also reflect a greater recognition and understanding of a hostile world that needs change (we have faith that change will come) and a greater awareness – and peace with – our own frailty and mortality as mere humans who only dance on this earth for a short while.

And, on the other side of the journey, we often find ourselves mostly alone, except for a few along the way that we know or befriend who have or are sharing the same journey, in the changes to who we are and how we view the world and how we view life.

That’s not a criticism to those who haven’t been through this journey – and we pray they don’t have to go through it, but we know the odds are not in their favor – but simply a statement of fact.

It’s sad at times and painful at times, but it’s the reality that, for now, we have to live with and move forward in spite of.

going gentle into that good night divider

Excerpt “Chapter 1: ‘I Don’t Remember, I Don’t Recall'”

“Because it affects short-term memory, mild cognitive impairment affects the recent past and the present.

What does this look like in practical terms?

  1. Repeating things in conversations, stories, and writing

    This manifests itself in telling the same things over and over, and with each retelling, it’s as though it’s the first time telling it. It is very similar to the effect of a scratch in an old vinyl record, where that point in the track gets replayed over and over until someone goes over and physically lifts the needle up and moves it beyond the scratch. However, with our loved ones, it’s rarely that easy or that simple.

  1. Frequently losing and misplacing things

    We all, from time to time, pick things up, get derailed in going from point A to point B, laying the things down somewhere in between, and then having no idea where we put them when we finally get to point B. However, with mild cognitive impairment, this becomes normal.”