Hallucinations and Anosognosia: Meme’s Story Part 2

I am writing a medium series on caregiving and raising awareness of Alzheimer’s and Dementia. My paternal grandmother, affectionately named, “Meme” is 90 years old and is currently battling this illness. Her cognitive abilities started to decline and she started hallucinating in August of 2020, about eight months into the Covid-19 pandemic in the United States. These hallucinations and delusions became more frequent and things came to a head in February of 2021.

Part 1 can be found at this link.

Alzheimer’s is a brain disorder of an abnormal buildup of proteins around brain cells causing dementia, or cognitive impairments in mood, language, and memory. These impairments interfere with daily living, with the later stages including difficulty swallowing, talking, walking and fighting off infections. There is no cure.

My sisters, my father and I would visit our grandmother often, even during the pandemic. My grandmother has had a slew of health problems from kidney failure and heart failure to thyroid and potassium problems. She had pacemaker surgery, knee surgery, and progressed to slowly using a walker. Just things happen to your body when you get older. However, she physically never showed her age. I guess that’s why it was difficult to confront the possibility of her cognitive decline; as she always looked at least ten years younger to me.

But, because of her physical decline, my father would make her breakfast and they’d have a chat over morning coffee. He would also make sure her medicine and pills were organized correctly in her weekly organizer. My sisters and I visited her every other afternoon and sometimes had supper with her. It was during these visits, starting in August, that my grandmother began hallucinating.

Hallucinations (both auditory and physical) are a common part of Alzheimer’s and Dementia disease.

At first, it was just a minor thing here or there. It was always confined to her television set. She would get upset when a plane would fly overhead or she would see people that were not there. Sometimes these hallucinations were good, such as seeing a cat and bird on her television. Other times, these hallucinations were violent. One day, she had called everyone, including my father about what happened one night. A man on her television had murdered several people and was watching her. She explained (in complete sincerity) that he threatened her life and she wanted to call the police.

One thing we noticed; these hallucinations frequently occurred in the evening and at night. She had either fallen asleep or was about to fall asleep. And that brings me to sundowners. This is a pattern of “sadness, agitation, fear, delusions and hallucinations that occur in dementia patients in the late afternoon, evening, and night. The exact timing and behaviors differs from patient to patient.

For our grandmother, it meant that she grew increasingly paranoid, anxious, fearful, delusional, and had auditory and visual hallucinations. And this condition grew worse later on (but more about that later).

I’ve said this before, but she knew that she might be seeing things. One day, she told her brother, “I’m seeing things, like animals and people walk down my hallway at night.” I froze. So, the hallucinations were not just solely appearing on the television. They were becoming more real. She then said, “that’s one thing I never wanted to lose is my mind.”

And that’s one of the sad truths. Doctors still don’t agree with what exactly causes Alzheimer’s and Dementia to occur. Nor do they agree on what causes sundowners, although there are different theories out there. The brain is a complex thing and people don’t choose why certain things happen to their body. They don’t choose to have things like Alzheimer’s or cancer. Things just happen, but their is no cure for Alzheimer’s. And I won’t stop being an advocate until a cure is the reality.

She then said, “that’s one thing I never wanted to lose is my mind.”

Anyway, for some time she was able to make the hallucinations go away. And for a while, that worked. She would tell me stories of waking up and seeing a boy; then she would close her eyes and open them and the boy would be gone. As anyone who has ever gone through caring for someone with Alzheimer’s, I knew that it wouldn’t last. By February of next year, the next shoe dropped.

My grandmother called the cops about someone breaking in on her. I later came to see police and first responders often at her home. Ironic, that she once became a part of the cop dramas she loved so much (Bones, Castle, and the Rookie were her favorites.)

She called the police and told them that two women were breaking in on her. They were messing with her electricity and stealing her things. We didn’t know about this until around 2:00am when the cops knocked on our door. They asked if our grandmother lived a house down from us. My father replied yes, it was his mother.

They explained what happened and asked if she had Alzheimer’s. At this point, my grandmother wasn’t diagnosed. But, we did mention the possibility with her hallucinations. The two men explained further: my grandmother threw clothes on top of these perpetrators and asked the officers to arrest them. But, there was no one there. My father got dressed and went down to her home. She pleaded with the officers that the fugitives were still in her home somewhere.

So, the officers searched high and low in her home to search for the perpetrators, but they assured her they were already gone. That night was one of the first times my father had seen his mother become aggressive. She was furious that the officers didn’t arrest the women that were “standing right in front of them.” And she became even more furious with my father for taking her pistol. (My grandmother frequently carried a pistol in her beside drawer for protection). She couldn’t understand what was happening and why no one would believe her. The age of telling the difference between reality and a delusion was gone. And this was only the beginning of what was to come.

She couldn’t understand what was happening and why no one would believe her. The age of telling the difference between reality and a delusion was gone.

This is because parts of the brain are dying, which leads to another cognitive problem with Alzheimer’s disease. It is called “Anosognosia” (uh·no·suh·know·zhuh). This is a lack of awareness in their condition and true abilities. “Imagine someone having a stroke with a paralyzed left side, but truly believing they can walk with no trouble.” “Or imagine having all kinds of almost accidents while driving, but believing you can drive fine.” Again, scientists don’t have a full picture on what causes this, but there are different theories out there. Studies suggest it occurs because the temporal lobes on the right side of the brain are deteriorating, which deals with problem solving and understanding context.

There are different forms of anosognosia, with some patients being selective of their true abilities. For example, my grandmother understood that she was having some trouble walking and swallowing. She had no awareness of her hallucinations or delusions. At this point, the delusions had not started yet.

My family believed that she was in denial of losing her mind or just being her regular stubborn self. My grandmother is a tough old bird and what I would like to call an independent Isabel. She frequently wanted to still cook and clean for family get-togethers (even though my sisters and I said we’d do it all.) And she would frequently try and give us money for cleaning her house or wanted to pay my dad for getting her groceries or medicine. My grandmother hated getting older and not moving around like she was used to. She told me stories of getting up at 5:00am as a housewife and mother, volunteering to cook for family weddings and celebrations. So, I know that it was killing her to have to solely be dependent on her son and granddaughters.

But, this later aggressiveness wasn’t her stubbornness or denial of her age. She truly believed what she was seeing is real. Therefore, she lacked understanding about her own brain and that we couldn’t see what she was seeing. And is to this very moment. It was this anosognosia that made caring for her all the more worse. My father suggested her making an appointment with her doctor to speak about seeing people within her home. She frequently refused, stating that she wasn’t a child and “was not crazy.” I would frequently hear this phrase over and over in days to come.

So, I know that it was killing her to have to solely be dependent on her son and granddaughters.

My grandmother frequently needed help sorting through her medicine, in this example of a pill organizer seen here. My father had to write down her medications and times to take on a list. It got to the point that every Sunday, my father had to help her sort her medication.

How do you help someone who is in this condition where they frequently see and hear things that are not there? One of the biggest is to not argue nor try to convince the person that what they are seeing is not there. You should only intervene when the senior’s safety or the safety of others is jeopardized. My father intervened by taking her pistol, which she frequently asked to have back. He couldn’t risk her discharging a loaded weapon at something that wasn’t there. Or worse, risk any visitors’ safety if they became a hallucination. So my father relented (in a way). He gave her another gun with no bullets at all in the barrel. So, she went back to sleeping with her “gun” within her room as “normal.”

With hallucinations on the television, my sisters and I just frequently nodded along and said “Ok.” Sometimes this worked. Other times, my grandmother knew by our vocal tone that we were not seeing what she was seeing. And she frequently questioned our sanity or eyesight. Other hallucinations, we attempted distractions, either by asking a different question or changing the subject completely. Again, these hallucinations were not very frequent and only happened occasionally. But, we all knew things could get much worse within a second. The best way that I can explain caring for someone with dementia is that you are on a speeding train with no idea who is driving it nor any idea of how long the ride lasts until it crashes or comes to a halt.

So I frequently pleaded and prayed to God asking why this had happened. Our family had already gone through so much with the Covid-19 pandemic, with my mother’s stroke, and my mental breakdown (story for another time). Then, I came to the conclusion that it doesn’t matter why. This was just another obstacle our family had to confront in the best way we knew how. We tried to do our research on the disease, but were not prepared for the draining days that were to come.

I mentioned that I prayed to God as I do believe in a higher power. (I’d be lost in this world without this faith; not trying to alienate any one who doesn’t believe.) My family knew Alzheimer’s and Dementia are fatal. So, I prayed to just have at least one more Christmas with my grandmother. In a way, I did. But, more on that to come. No, my grandmother is still very much alive. (Not to worry). It’s just strange that life sometimes has its own way of sorting itself out.

Part III is found here.

I hope I can continue to raise awareness to this disease and to show other family members and caregivers that they are not alone. ❤

Sources:

Northwestern University, “When They Don’t Know They Are Ill.” New York Times, January 22, 2014, accessed March 16, 2022, https://www.proquest.com/docview/2213882439/abstract/5C8658A1E3B64DD6PQ/1?accountid=8363.

Alissa Sauer, “Anosognosia & Alzheimer’s: What You Need to Know,” Leisure Care/Senior Living Blog, July 8, 2021, accessed March 16, 2022, https://www.leisurecare.com/resources/alzheimers-anosognosia/#:~:text=Defined%20as%20the%20%E2%80%9Clack%20of,,%20Huntington's%20disease,%20and%20stroke.

Mark Sollito, “Understanding and Minimizing Sundowners Syndrome,” AgingCare.com, October 5, 2021, accessed March 16, 2022, https://www.agingcare.com/articles/sundowners-syndrome-133187.htm#:~:text=Known%20as%20sundowners%20syndrome,%20or,both%20patients%20and%20caregivers%20alike.