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.
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.
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.”
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.
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.
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.”
If you are a caregiver at home for a loved one suffering from dementias and/or Alzheimer’s Disease, I strongly urge you to take this class. It’s free (health professionals can pay a nominal fee to get a certificate and CEU credit for the course) and it’s got a lot of really good information.
Before I talk about the stress effects on our loved ones who suffer with these neurological diseases, let me talk about the course itself. The approach for care being presented by the course is, unfortunately, in my opinion, still largely confined to the halls of academia.
I have never seen the comprehensive – and sensible and workable – and integrated approach to care that is patient-centered this course emphasizes being done in practice in professional (physicians, nurses, hospitals, etc.) and community-based (assisted living and nursing home) environments.
That, in my opinion, is a major shortcoming and flaw in American health care and in the way America treats its elders – as a business commodity off which they make large profits with little effort and little concern, instead of as people who’ve given the best years of their lives to others – their families, their jobs, their country of residence (federal and state taxes, social security, Medicare, etc.) – and who should now be treated with dignity, honor, and respect.
Ironically, though, it is among the individual caregivers of loved ones at home that you see this model that John Hopkins is outlining for care of elders with Alzheimer’s Disease and other major neurocognitive disorders in practice. Not all, but in some.
I certainly know this model was the one I used with my mom. She was the priority. Not me, not anything else, and maintaining her dignity and showing her unconditional love, honor, and respect was paramount. I enforced it with the health care professionals on our team, and those who didn’t or wouldn’t make Mama the priority and treat her with dignity and show her the honor, respect, and love that she deserved were quickly fired by me.
(Most of our team was wonderful, by the way, as individuals; my biggest challenge was always getting and keeping everyone on our team on the same page, and that will always be the biggest challenge for the team leader-caregiver.)
This post will talk about the physiological cycle of stress and the effect of what can become continual stress on our loved ones with dementias and/or Alzheimer’s Disease.
I will also briefly list some of the stressors that our loved ones face. In subsequent posts, I will give some tips and guidelines on how we, as caregivers for our loved ones, can reduce or eliminate some of the stressors that we have control over to alleviate as much as is within our power the sources of stress for our loved ones with dementias and/or Alzheimer’s Disease.
I had to, through observation and trial and error, learn a lot of this on my own with Mama, but because she was my priority, and her comfort, safety, and care along with the continual assurance that she was very much loved were paramount, I took the time (one of three key components missing in a lot of caregiving – the others are patience and slowing down to our loved ones’ paces) to figure it out.
The physiology of stress begins in the brain as a chemical reaction to a demand (real, possible, or perceived) that exceeds a person’s ability to adequately cope.
Stress initiates survival-oriented behavior, which is necessary for surviving acute danger. The neurological response is to turn off the prefrontal brain cortex, which is responsible for intelligent and insightful behavior because we don’t have time to reflect on a course of action in the face of an immediate threat. Instead the “survival centers” in the midbrain take over and cause the brain to react instantly in an instinctive way (the fight-or-flight response associated with lots of adrenaline being released).
The picture to the right shows the brain in low and high survival-behavior modes. Note the “holes” in the second image of the picture. These are not actual holes in the prefrontal brain cortex, but are areas which are inactive. That’s about as good a visual of stress’s effect on the brain as you can get.
In every situation where we feel stress, the following reactions occur:
Cognition is disturbed and can be impaired
Emotions are disturbed and can be impaired
Behavior that may adversely affect well-being
An example of cognition being disturbed and impaired is that often in the most intense moment of a stressful situation a condition I’ve always heard referred to as “brain freeze” (inability to think, remember, recall anything for a short period of time) can occur. The brain just locks up. For those of us who are not cognitively-impaired already, that’s a scary situation. Imagine how much more frightening it is for our loved ones who are cognitively-impaired by these diseases.
We have all seen and experienced the intense emotional disturbances and impairments of stress. One example is uncontrollable sobbing. Another is ferocious anger. Like cognition, this emotional disturbance and impairment is even more magnified in our loved ones when they experience stress.
An example of behavior that may adversely affect well-being on the extreme end would be suicide. However, other examples might be throwing things, flinging our bodies against something repeatedly, and self-injury like hitting ourselves or cutting ourselves with a sharp object.
This may seem incomprehensible to someone who’s never had unrelenting and long-term stress so strong that it literally creates an insurmountable and continual deep inner pain that will not go away, but this behavioral aspect seeks to override that internal pain with physical pain, which, in general, is much easier to deal with and is short-lived. However, the results can be devastatingly permanent.
For those of us who are not cognitively-impaired, getting past the action stage of the behavior component is a matter of the ability (and sometimes this is just sheer force of will) to wait it out until it passes (it’s brief, but in times of stress, will recur frequently). For our loved ones suffering from dementias and/or Alzheimer’s disease, many times this ability has either been compromised or lost.
We all know people who do well, most of the time, with a lot of stress and other people who do poorly, most of the time, with even a little bit of stress. Most of how we respond to stress depends on the coping mechanisms we’ve developed over time.
One of the immediate coping mechanisms is the ability to determine whether the stressor is real or perceived. If I see a car going 70 mph heading toward me on a sidewalk, the stress is real. However, if I believe – but don’t know – that something that would negatively impact me could happen, the stress is perceived.
Like my mom, perceived stress is something I – and maybe I’m the only one left now that she’s gone, because it’s not something I hear other people ever talk about – really struggle with and my coping mechanisms are not as good as they should be, although I’m trying to work on improving them.
Mama and I were very different in temperament in some ways, but this is a trait we unfortunately share – Mama because of her experiences, especially during her childhood, and me because I need a plan, need to clearly see the plan, and need to be able to execute the plan, and when periods of life hit where there’s no visible plan and I’m in what feels like interminable limbo hell, I get stressed to the max.
A lifetime of chronically high stress levels combined with poor coping mechanisms is now being linked, by scientific research, to a risk of developing vascular dementia (the result of strokes and TIA’s) and Alzheimer’s Disease. One of the responders to stress is a hormone produced by the adrenal gland called glucocorticoids. Repeated exposure to glucocorticoids accelerates the aging process of the brain and damages and shrinks brain tissue, which is clearly seen in Alzheimer’s disease.
This gives me more incentive to quickly and drastically improve my coping mechanisms (and I admit, so far, I’m failing way more than I’m succeeding, but I’m determined to make this happen) because I know that Mama’s poor coping mechanisms to stress played a role – not the only one – in her development of vascular dementia and Alzheimer’s Disease.
As our loved ones become more cognitively-impaired by these diseases, more and more things of everyday life become stressors (real or perceived) and their anxiety-tolerance thresholds get lower and lower, until almost anything can be a source of stress.
Since we know one of the results of stress is cognitive disturbance and impairment, stressors for our loved ones with dementias and/or Alzheimer’s Disease create even greater cognitive disturbance and impairment, in the form of more confusion, more agitation, more anxiety, more restlessness. There can be a serious and sudden decline in cognitive function because of a stressor that we may or may not be aware of. In addition, we see the emotional and behavioral disturbances and impairments in exaggerated form as well (crying, yelling, hitting, biting, and pacing are common emotional and behavioral manifestations).
However, a lot of these stressors are easily remedied or eliminated, which we will discuss in the next few posts on this topic. For now, though, I’ll list of some of the most common stressors that we’ll be looking at:
General physical health
We’ll begin next week looking at these specifically to see how they can be stressors and what we, as loving caregivers, can do to remedy or eliminate them as stressors for our loved ones.
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, 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.
Fortunately, 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 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.
And 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.