William Shakespeare, the playwright, was one of the most intuitive and astute observers of the human race. A careful reading of his body of plays – especially the histories and the tragedies – show an author who intimately understood human nature and human folly at their very core manifestations.
In King Lear, one of Shakespeare’s most gut-wrenching plays, Shakespeare gives us an in-depth look at what dementia – and, most likely, based on the symptoms, Lewy Body dementia – looks like in action in his portrayal of King Lear.
The summary of King Lear is fairly straightforward. King Lear, a monarch in pre-Christian Britain, who is in his eighties and aware of his own cognitive decline, decides to abdicate the throne and split the kingdom among his three daughters, with the promise that they will take care of him.
The first sign of Lear’s dementia is his irrational criteria for how he’s going to decide which daughter gets the largest portion of the kingdom: not by their abilities, strengths, rulership experience, but by which one professes the greatest love for him.
His two oldest daughters are duplicitous and try to outdo each other with their professions of love for their father (they don’t love him, but they want the lion’s share of the kingdom).
King Lear’s youngest daughter, who genuinely loves her father and who is his favorite, gets disgusted with the whole thing and refuses to play the game.
King Lear, in a sudden fit of rage, then disowns his youngest daughter completely. When one of her friends, the Earl of Kent, tries to reason with the king, King Lear banishes him from the kingdom.
King Lear’s youngest daughter then marries the king of France and leaves King Lear in the hands of his two devious older daughters.
Both daughters are aware of King Lear’s vulnerability because of his cognitive decline and are intent on murdering him so that they can have everything without the responsibility of having to take care of him. They treat King Lear horribly in the process of formulating their scheme to end his life and be rid of him.
The youngest daughter comes back from France to fight her sisters, but loses and is sentenced to death instead.
While she is awaiting execution the two older sisters fight over a man they both want. The oldest sister poisons the middle sister, who then dies.
The man the two sisters were fighting over has been fatally wounded in battle and he dies (but he reverses the execution order of the youngest sister before he dies). After his death, the oldest sister commits suicide.
Meanwhile, the youngest sister is executed before the reversal order reaches the executioners. And King Lear, upon seeing his youngest daughter dead, dies too.
Woven throughout the plot are signs that King Lear has dementia, that he knows something is cognitively wrong, and we watch him actually go through the steps of dementia throughout the play.
King Lear exhibits deteriorating cognitive impairment, irrational thinking, sudden and intense mood changes, paranoia, hallucinations, and the inability to recognize people he knows.
Lewy Body dementia seems to be evident in King Lear’s conversations with nobody (he thinks he sees them but they aren’t there) and the sleep abnormalities that are brought out in the play.
A few poignant lines spoken by King Lear give us a glimpse:
“Who is it that can tell me who I am?”
“O, let me not be mad, not mad, sweet heaven
Keep me in temper: I would not be mad!”
“I am a very foolish fond old man,
Fourscore and upward, not an hour more or less;
And, to deal plainly,
I fear I am not in my perfect mind.”
“You must bear with me:
Pray you now, forget and forgive: I am old and foolish.”
Everyone around King Lear knows he’s not himself, including his deceptive daughters, who note after he disowns his youngest daughter, how bizarre his behavior was toward someone he loved so much and how quickly his temperament changed. King Lear see
As the play progresses, King Lear’s dementia continues to be revealed in his frequent rages against fate and nature, in his disregard for personal comfort or protection from the elements, and in his eventually having fewer and fewer lucid moments in which he recognizes people and knows who he is.
If you haven’t read King Lear in a while or you’ve never read it at all, it is an entirely different experience to read it now with the knowledge of dementia as a backdrop. It’s even more tragic than we even imagined.
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.”
There is no cure for dementias or Alzheimer’s Disease. Once the journey begins, its course is downhill, sometimes gradually, sometimes rapidly, but always in decline.
There may never be a way to prevent these neurological diseases from occurring before the damage is done – I’m going through several neurology-related courses right now and the professors teaching these courses readily admit there is more about the brain’s chemistry, physical structure, communication systems, and function that is not known than is known – but once dementias and Alzheimer’s Disease have begun to damage the brain, there is no remedy.
The brain is a unique organ in the body in that once cells in the brain die, they do not regenerate themselves. They’re dead and gone.
The neurological damage of dementias and Alzheimer’s Disease cannot be reversed.
So when Mama’s diagnoses came in late July 2010, I had a unique and personal perspective on what that meant for her and for me. “Mid-to-late-stage vascular dementia and mid-to-late-stage Alzheimer’s Disease” from the psychiatrist at the geriatric psychiatric hospital that Mama was in after her meltdown on July 10, 2010 didn’t surprise me. But I knew there was no cure, no going back, no fix.
I transitioned, probably more easily than most family members who hear this for the first time, to “what can we do to stabilize?” The psychiatrist assured me that stabilization was possible, but it would take time and tinkering with the medicines that the symptoms of dementias and Alzheimer’s Disease demand.
I was almost convinced that nothing could turn around the psychosis that Mama was experiencing in full throttle in those days. I realized my own helplessness to help her and make it better for her. I experienced a lot of guilt and inner turmoil because nothing I was doing was working and I knew how much she was suffering and how afraid she was and it was all out of her control and my control.
I was also extremely sad. This was not the mama who had, with open arms along with my daddy, brought my sisters and me into their home through adoption, loving us with a fierceness and tenacity that we struggled with at times but also realized over time was the real deal. This was not the mama who opened her arms, her heart, her door to me when life was banging against me and threatening to destroy me. This was not the mama who put up with me and loved me in spite of myself, at times, unconditionally.
How could I not do the same for her after all she (and Daddy) had done for me? They loved me in spite of myself. How could I not love Mama in spite of herself? This was a no-brainer for me.
It was during the geriatric psychiatric hospital stay that I learned about many of the most-commonly-used medications used to control and improve the symptoms of dementias and Alzheimer’s Disease.
All the medical professionals involved in Mama’s care were very careful to tell us repeatedly that the medications they were trying with Mama were controlling symptoms only.
I gave Mama Clonazepam only twice in two years (it knocked her out and I didn’t like the side effects, but it was for extreme agitation and there were only two times when she was agitated to the point of fearing for her heart health, that I decided to give it to her). The rest of this combination of anti-psychotic, anti-depression, anti-anxiety regimen gave Mama a better quality of life from near the end of July 2010 until her death on August 14, 2012.
With the exception of SeroquelXR.
Just after Thanksgiving 2011, Mama awoke one morning with tardive dyskinesia. At the time, I didn’t know what it was, but Mama was scared (and so was I as I watched the involuntary movements that rhythmically were going through her body).
I got Mama to the ER, where a nurse practitioner, who refused to listen to me (and the nurses who were with Mama and me and with whom we were talking to all day) for eight hours, was convinced that the tardive dyskinesia was Mama’s pacemaker going haywire.
So we waited all day in the ER for a cardiac consult that tested Mama’s pacemaker and confirmed it was working properly and not the problem (which I’d been telling the nurse practitioner all day because we’d just had it checked the week before).
Finally, the nurse practitioner decided to admit Mama, and late-stage tardive dyskinesia was diagnosed with the culprit being SeroquelXR.
Mama had Lewy Body dementia as well. It was not diagnosed (a firm diagnoses cannot be made without an autopsy of the brain, but symptoms are quite obvious while our loved ones are living), but I’d seen it, not knowing what I was seeing (I began researching it after Mama’s full-blown symptoms starting appearing in January 2012), just after Mama had gotten out of the geriatric psychiatric hospital when we were going to doctors’ appointments together.
Anti-psychosis drugs and Lewy Body dementia don’t mix well together. Mama was fortunate that she was able to stay on SeroquelXR as long as she was, and for that I am thankful. But we reached a point where we had to choose between mood and hallucinations/delusions.
I chose to help Mama with her mood. I knew I could handle hallucinations and delusions (although, in reality, what I thought I could handle still turned out to be surprising and perplexing, causing me to have to scramble to try to adjust with honesty and integrity even when things got way out of my comfort zone), but I could not handle Mama’s mood swings with these diseases.
So we (the hospitalist and I) went with Depakote Sprinkles (100 mg, 3 times a day – I could mix it with foods and drinks and make it easier for Mama to take) with the hospitalist telling me that Mama’s hallucinations and delusions would come back.
They did, but they were not particularly scary for Mama (I think because I was there), but they often threw me for a loop initially. I’m probably the least spontaneous person on the planet, so adjusting to these was particularly hard for me, but eventually, I got better at dealing with them and easing Mama’s mind. A new normal for both of us.
These medications that Mama was on are not the only ones used to treat the symptoms of dementias and Azheimer’s Disease, but they are the most common in the mid-to-late stages.
In the early stages, Aricept is commonly prescribed. From everything I have read and heard, it’s efficacy is limited. I believe that this is because by the time most people are diagnosed with dementias and Alzheimer’s Disease, they are already beyond the early stages of the diseases.
I would caution all of us as caregivers to make sure our loved ones are not over-medicated. Many of the anti-psychotics and anti-anxiety drugs can anesthetize our loved ones to an almost-coma-like state, which is not what we or they want or need.
We are their advocates. We are the only people who can fight for our loved ones medically. We have a responsibility to make sure our loved ones suffering from dementias and Alzheimer’s Disease have the best quality of life they can have for as long as they can have it. This is our obligation to them.
So unless anti-anxiety drugs are absolutely necessary and unless morphine and its derivatives and cousins are absolutely necessary, please don’t give them. They deprive our loved ones and they deprive us of quality time in the face of these terminal diseases. Nobody wants that.
There are medications that I haven’t talked about in this post. If you want to know about any medications that your loved ones may be taking, please comment here or email me at firstname.lastname@example.org. I’ve researched many, if not all, the medications used to deal with the symptoms of these diseases, so I’ll be happy to help you with any questions you may have.
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.