Tag Archive | Going Gentle Into That Good Night book

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 8 Excerpt

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseIn this ninth 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 eighth step in the journey through dementias and Alzheimer’s Disease.

This post includes an excerpt from chapter 8, which thoroughly discusses how to acknowledge, recognize, and respond to the eighth step in the journey through dementias and Alzheimer’s Disease: wandering and wanting to go home.

This chapter discusses in-depth the reasons that wandering and wanting to go home are part of the eighth step in the journey through dementias and Alzheimer’s disease. It also discusses practical, real-time, and loving ways we as caregivers should respond and help our loved ones as we navigate through this step in the journey.

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, Chapter 5, Chapter 6, Chapter 7, and, with this post, Chapter 8.

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 8: ‘Can’t Find My Way Home’”

“Wandering is the next step of the journey our loved ones with dementias and Alzheimer’s Disease go through. Wandering can be characterized by endless walking within the safety of a house or facility, but more often it is characterized by going outside and either walking or driving (if our loved ones are still driving) aimlessly until our loved ones are lost and either can’t or don’t know they need to or how to come back.

There are many stories of elderly people with dementias and Alzheimer’s Disease who were wandering on foot or in a vehicle who died before they could be located. These people have been hit by vehicles while walking in the middle of the street, walked into woods and gotten lost, or have driven vehicles off the road over embankments or into bodies of water.

Often, the impulsive nature of wandering – a sudden need to be stimulated or being on a mission to go somewhere or find something – leads our loved ones with dementias and Alzheimer’s Disease to just pick up and go, often without adequate clothing in cold weather, and often in the middle of the night.

Wandering may be tied to visual hallucinations as well, especially if the visual hallucination is of a loved one. When that person leaves, our loved ones may want to follow and go with them.

However, the main impetus of wandering seems to be rooted in the desire to go home. Our loved ones with dementias and Alzheimer’s Disease begin talking frequently about wanting to go home – even if they’re in a home they’ve lived in for many years – and wanting to find loved ones, many of whom have been dead for years.

It’s important to understand the context of where our loved ones with dementias and Alzheimer’s Disease are neurologically and memory-wise. While dementias and Alzheimer’s Disease affect short-term memory and inhibit new memories from being formed, long-term memories are and stay, for most of the duration, intact. And those long-term memories are where our loved ones begin spending a lot of time.

Therefore, home, for our loved ones is most often their childhood or early adulthood homes, and those homes and the people who were there are what our loved ones are looking for and where they want to go.

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 7 Excerpt

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseIn this eighth 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 seventh step in the journey through dementias and Alzheimer’s Disease.

This post includes an excerpt from chapter 7, which provides a comprehensive look at how to acknowledge, recognize, and respond to the seventh step in the journey through dementias and Alzheimer’s Disease: sleep changes and disruptions.

This chapter shows that changes to sleep patterns and sleep disturbances, which includes sundowning, are all part of the seventh step in the journey through dementias and Alzheimer’s disease.

This chapter also discusses how this step impacts our loved ones and us as caregivers and the practical, real-time, and loving ways we as caregivers should respond and help our loved ones walk through this step in the journey.

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, Chapter 5, Chapter 6, and, with this post, Chapter 7.

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 7: ‘Don’t Know If It’s Day Or Night’”

“Changes and disruptions in sleep are the next step in the journey our loved ones go through with dementias and Azheimer’s Disease. Included in this step is a phenomenon called sundowning, which we’ll explain the logic and science behind.

But first we need to talk about the science of sleep. All humans have a 24-hour internal clock that is known as our circadian clock (the term circadian rhythm refers to any biological process that completes a 24-hour cycle).

This clock, shown below, is a complex and coordinated system of neurology, hormones, environmental factors, and routines that are established from the time we are born.

circadian rhythm sundowning melatonin going gentle into that good night

Everyone’s circadian clock is unique, but each follows the general pattern shown above. In fact, the clock shown above is the ideal and the circadian clock that humans basically followed until the Industrial Revolution took place in the late 18th and early 19th centuries.

Since the full transition into the Industrial Revolution, human life and the adherence to this natural circadian clock has been altered and challenged because one of the side-effects of the Industrial Revolution was the development of artificial lighting (gas in the 19th century and electricity in the 20th century), which enabled lighting to be available 24 hours a day.

This was the byproduct of greed that served the captains of industry well (instead of limiting work hours to daylight hours only, artificial lighting enabled factories, foundries, mining operations, etc. to operate on a 24/7 schedule), but the human race definitely got the short end of the stick here.

Because the body is designed genetically, neurologically, hormonally, and environmentally to function in sync with the 24-hour circadian clock shown above, disrupted sleep and sleep deprivation has a chaotic effect on the body, even in otherwise-healthy people.

Time and again, science and medicine have shown a significant increase in accidents and serious injuries among shift workers who work at night. This includes not only production workers, but also professionals such as medical personnel. There is also a considerable amount of evidence that shows night shift workers are much likely to be injured or killed in driving accidents because they have a higher incidence of falling asleep behind the wheel going to and from work.

The most disruptive shift to the human body is the graveyard shift (usually 11 pm to 7 am). By the time these workers start their shift, the body is fully prepared (the hormone melatonin relaxes the body and mind for sleep beginning around 9 pm) to sleep. Forcing the body to do the complete opposite of what is it naturally designed to do is often counterproductive and very destructive to human health.”

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 6 Excerpt

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseIn this seventh 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 sixth step in the journey through dementias and Alzheimer’s Disease.

This post includes an excerpt from chapter 6, which provides a extensive look at how to acknowledge, recognize, and respond to the sixth step in the journey through dementias and Alzheimer’s Disease: sudden and dramatic mood swings in both directions.

This chapter shows that frequent, unexpected, and severe mood mood swings are the sixth step in the journey through dementias and Alzheimer’s disease. This chapter discusses how this step impacts our loved ones and us as caregivers. It also discusses practical, real-time, and loving ways we as caregivers should respond and help our loved ones traverse this step in the journey.

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, Chapter 5, and, with this post, Chapter 6.

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 6: ‘How You Suffered for Your Sanity’”

“Dramatic and sudden mood swings are part and parcel of the journey through dementias and Alzheimer’s Disease, and they begin to materialize during the step of paranoia, but they can continue throughout the course of these diseases.

There can be several triggers for these mood swings: environmental, physiological, perceptual, and neurological. Sometimes all of these can be in play at the same time, but normally the trigger is singular.

Let’s take a look at each of the areas that can trigger a mood swing in our loved ones suffering with dementias and Alzheimer’s Disease and how we can respond to and/or eliminate them.

  1. Environmental changes are often the trigger for sudden and dramatic mood swings. These can include something as seemingly simple as moving something out of a familiar place or having our loved ones in a setting they are not familiar with. It can also include the presence of strangers (or people they don’t remember) and it can include being asked to do something new or unfamiliar.

    For example, one of the most common instances of these kinds of mood swings is with medical personnel. Most nurses, nurse practitioner, physician’s assistants, and doctors have stories about routine care they were providing for a patient with dementias and Alzheimer’s Disease that quickly deteriorated into yelling, screaming, aggression, and sometimes even physical assault.”

“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.”

Going Gentle Into That Good Night – The Book is a finalist in the SeniorHomes.com Best Senior Living Awards 2014

Thank all of you who have voted so far for my book, Going Gentle Into That Good Night BookI wanted to pass what I learned on, so I wrote Going Gentle Into That Good Night .

It’s a finalist in the SeniorHomes.com Best Senior Living Awards 2014 books categories.

A panel of judges will determine the SeniorHomes.com expert winner, but your votes will determine the People’s Choice winner. Voting is open until May 12, 2014. So, if you haven’t had a chance to vote yet, I’d certainly appreciate you doing some research into my book and giving me a vote if you think it’s a good offering in this category.

Going Gentle Into That Good Night – the book – is a finalist in the SeniorHomes.com Best Senior Living Awards 2014.

Delusions, Suspicions, and Fears in Alzheimer’s Disease and Dementias

Today’s post will discuss the psychotic manifestations of the brain damage that occurs in dementias and Alzheimer’s Disease. These, in my opinion, are the ones that are the hardest for us, as loving caregivers, to understand, anticipate, and manage.

I think part of the reason delusions, suspicions, and fears resulting from dementias and Alzheimer’s Disease are so difficult to be on the receiving end of is because they often can be sudden, random, and transitory, so they have the effect of keeping us, as family, friends, and caregivers constantly off-balance.

And that’s not comfortable for anyone as a constant state-of-being, since a sort of everpresent anticipatory anxiety is a common side effect for those of us on the receiving end.

For several months in 2010, as my mom was experiencing these in full-throttle, it seemed like my heart was constantly about ready to beat out of my chest as we went through this together. Sometimes it was because I didn’t know what I was walking into and other times it was because of what I’d just experienced. But it was nonstop for the duration.

One of my mom’s biggest fears after my dad died was that I would die before she did and she’d be left, in her mind, alone. Although I constantly reassured her that she didn’t need to worry, there were times in 2010 when I thought her fears might just come true.

Before we identify some of characteristics of the common psychoses associated with dementias and Alzheimer’s Disease, it’s important to understand what they are.

Delusions and hallucinations are not the same thing. Hallucinations are part of the visuoperception disorders that were discussed in “‘I See Dead People’ – Vision, Perception, and Hallucinations in Alzheimer’s Disease and Dementias.”

dementia Alzheimer's Disease delusionsDelusions, on the other hand, are persistent untrue beliefs not substantiated by facts or evidence. In our loved ones suffering from dementias and Alzheimer’s disease, these delusions often are accompanied by paranoia. And, frustratingly, there is no amount of logic, evidence, persuasion, or proof that is effective to counteract the delusions.

It’s important to note, though, that the influence of delusions waxes and wanes with our loved ones, and sometimes may not be present at all. I found with Mom that hers were worsening and more pervasive as her sleep patterns got more and more disrupted

The most common negative (not all delusions are negative) delusions among our loved ones suffering from Alzheimer’s Disease and dementias are:

  • that everyone is stealing their money, valuable items, and important documents
  • that everyone is lying to them
  • that everyone is abandoning them
  • that everyone is against them
  • that everyone hates them

These delusions actually create the other two psychoses of malignant suspicions and irrational fears.

Mom exhibited all of these before medication (SeroquelXR was a life-saver for her and me until the tardive dyskinetic effects related to her Lewy Body dementia prevented her from being able to take it anymore), and the belief that people were stealing things from her was the first to emerge.

It’s interesting to note that some delusions have a factual foundation in our loved ones’ pre-dementia and pre-Alzheimer’s Disease lives.

Mom actually had experienced theft of money (an insurance policy her dad had left to pay for her college was stolen by the aunt who was her guardian after his death) and a chest of items he and her mother had left to her (by the same person).

So, even before the dementias and Alzheimer’s Disease started taking their toll on her brain, Mom had a heightened fear of people stealing from her and taking advantage of her.

So when she began moving things – and this moving things got more frenetic as the damage from these diseases increased, so it just exacerbated everything and was a losing battle for me to try to keep up with – and then forgetting where she moved them, she immediately started accusing people of stealing them.

At first, her accusations were against other people, but eventually, she became convinced that I was the thief of everything, including her money (which I had no access to) and everything she misplaced.

I will never forget a Sunday afternoon a few weeks before her psychiatric hospitalization when my sister called to tell me Mom said she’d been at the hospital all the night before. I knew it wasn’t true, but my sister urged me to go back for a third time that day to Mom’s apartment and check on her.

I pulled into the parking lot next to a police car that was running and my gut told me that Mom had called 911 and the police were there because of her. Someone met me at the entrance and said that she’d called the police to have them arrest me for stealing her money.

suspicionsFortunately, the policeman just sat and talked with Mom and realized what was going on and got her calmed down and by the time I saw her, she was out of the delusional episode and tearfully welcomed me and said she loved me and asked me to forgive her.

Her tears always broke my heart and there was nothing to forgive, because I knew it wasn’t her fault, but my reaction was more a sense of helplessness to do anything about what was happening to her brain and the realization that it was bigger than both of us.

(Fields of Gold: A Love Story and Going Gentle Into That Good Night are two books I’ve written that detail different aspects of the details of how this unfolded. 

Fields of Gold: A Love Story is the history of my dad and mom [much of what explains my mom’s background that led to her behavior and thinking as vascular dementia, Lewy Body dementia, and Alzheimer’s Disease affected her brain] and us, me included, as kids and our lives together. It is a story of love, of commitment, and of endurance. For all of us. I recommend it because I chronicle so much of the last years of Mom’s life, and for all caregivers, this will resonate, but more importantly, hopefully it will help you.

Going Gentle Into That Good Night is the big-picture overview of caregiving for loved ones who are suffering from Alzheimer’s Disease and dementias and my general offering of the lessons I learned in the process with Mom. This blog is a direct result of that book, so I can fill in the specifics, the details, and hopefully encourage and help you.)

After that Sunday, though, the delusions took over and every day until her hospitalization was like a siege. There were moments – and even a morning after a week of pure hell that I’ll never forget – of love and lucidity, but they were few and far between.

She was convinced I was stealing from her, that I hated her, and that I was purposefully hiding things in her apartment so she couldn’t find them.

Some days I spent hours trying to find things – sometimes successfully and sometimes not – and give her proof that nothing was missing and that I loved her.

But Mom simply, because of the dementias and the Alzheimer’s Disease and the ravaging effects that they were having on her brain, was unable to be persuaded that what she believed wasn’t true.

The one thing that always stung me most, however, was when I’d tell her that I loved her and she’d angrily say “Don’t tell me that! You don’t love me! It’s not true!”

And although she seemed to be doing everything she could – again, she wasn’t aware of nor was she responsible for this – to push me away or to push my buttons so that my behavior would validate her delusions, all I could see was the scared little girl who had been left all alone at the age of six and, instead of being angry or quitting her, compassion and mercy took over and all I wanted to do was protect her and love her and make it all okay.

fearsAnd here is where I’ll offer some advice from my experience with delusions, suspicions, and fears. I’m not saying I always handled it with grace, but that was always my intent, and, most of the time, I did okay.

The first thing is to not take it personally. The reality is that delusions are the product of damage to the brain and mixed up memories of a lifetime and, as hurtful as the accusations and the strong negative reactions can be, they’re not really about us in the present.

The second thing is to remain calm. Reacting emotionally to or arguing with our loved ones suffering from delusions, suspicions, and fears actually heightens the suspicions and fears and in a strange way validates, for them, that their delusions are true.

It’s hard to stay calm, but it’s absolutely essential that you do. An even, reassuring tone of voice, deliberate and smooth movements and gestures, and supportive and encouraging words will not stop or change the delusions, suspicions and fears, but they will help.

If the situation escalates because of your presence, leave.

But not without being sure to tell our loved ones that we love them and we’ll see them later. I don’t care what kind of reaction that elicits – because it usually is negative – but it lets our loved ones know we’re not abandoning them.

And, then come back later, and start over. Repeat as often as is necessary.

The most important things, in my opinion, that we can do is to be loving, be patient, be merciful, and be compassionate. You and I have no idea of the tumultuous mental landscape that our loved ones with dementias and Alzheimer’s Disease are living with.

It’s beyond comprehension.

There’s a sense, for our loved ones, of the knowledge that they’re “going crazy,” and yet doing anything about that is beyond their control. It’s sad, it’s scary, it’s depressing, and it’s lonely.

Love, patience, mercy and compassion given and expressed unconditionally and continually will not change the reality of what these diseases are taking from our loved ones, but they will be the greatest gifts that we are able to give and will ensure that our loved ones can count on us to be there and give them these things, no matter what else happens, as they and we walk this journey together to its natural conclusion.