Today is the second anniversary of my mama’s death.
I miss her. But my love, care, and concern for her well-being outweighs my own pain and loss. Because her journey through vascular dementia, Lewy Body dementia, Alzheimer’s Disease, and congestive heart failure is over and she sleeps peacefully, awaiting the promise of total healing in the resurrection.
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.
My memoir about my parents – who were both orphaned at very young ages – and their life together, which included adopting my sisters and me, and then Mama’s journey to the end last August, Fields of Gold: A Love Story, has been published and is now available for purchase.
I wrote this memoir in about six weeks just after Mama died, first to preserve our family stories for my sisters and me and her grandchildren, but then it evolved into a full-length book that chronicled our lives from beginning to end – at least for my parents – and I hope will live on as a tribute to their legacy and a reminder to each of us of the legacy we are now responsible for carrying on and passing on to the next generations.