The “Roller Coaster” of Dementia: Infections and Delusions: Meme’s Story Part 3
This is a continuation of my medium series on 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 and Part 2 are located at the aforementioned links.
In the previous links, I have described the beginnings of my grandmother’s dementia from her hallucinations to her anosognosia, or her lack of awareness of her condition. It is here that I will be describing opportunistic infections, and their effect on Alzheimer’s and Dementia patients and delusions.
There are different forms of dementia with Alzheimer’s disease being the most common cause. Other causes include Parkinson’s disease, traumatic brain injury, or strokes. Types of dementia include vascular dementia, Lewy body dementia, frontotemporal dementia, and mixed dementia. At this point however, my grandmother had not received a diagnosis from a doctor on either counts. But, my family had a pretty good idea of what Lewy body dementia looked like as my maternal grandmother died of the disease.
Lewy body dementia frequently causes hallucinations and problems with focus and memory, along with acting out one’s dreams, and having tremors. We had witnessed my grandmother fit the bill of all these symptoms. But, she was stubborn and didn’t want to go to the doctor for a diagnosis, out of fear of what they would say….
After my grandmother’s last episode of calling the police because of “intruders,” my family just went back to pretending things were normal. My father brought his mother coffee and breakfast in the mornings; I spent the afternoons with her, and sometimes ate supper with her. We pretended as if what she was seeing was real. And these hallucinations only happened about once a month. We’d get calls about random things happening in her home or that someone was “visiting” for the day. I had my own mental issues going on, so I didn’t visit as often as I would have liked to.
On the day that I did visit her, we discussed having Christmas Eve at her house. My family frequently had a Christmas get-together there. But, because of Covid-19, we hadn’t done one in about two years. My sisters and I decided that we would help her clean her home and cook dinner for the family. During these decisions, I had an odd premonition and my eyes started watering. I excused myself to the living room and stared at my grandmother’s Christmas tree. (Yes, she kept it up year round; less work to do). A wave of dread began to wash over me, and I began to pray. Please Lord, let me have Christmas. Let me have Christmas. I wasn’t sure what came over me, but I knew that our grandmother didn’t have much time left. I knew her brain was slowly dying.
And so, for about a week and a half, my sisters and I helped clean her home. I decorated as I hadn’t before: stringing lights on her atrium, hanging Christmas cards, and setting matching napkins and placemats. I wanted everything to be just perfect when the family arrived. But, a day or two before the family was set to show, I noticed my grandmother getting a bad cough.
I wasn’t sure what came over me, but I knew that our grandmother didn’t have much time left. I knew her brain was slowly dying.
Thinking it was nothing, we made kielbasa, her famous macaroni and cheese, dressing, ham, cranberry sauce (easy, because it was in a can), and she made four pies (we wanted to help, but she was stubborn…) So, the day came and went with the family eating and opening their presents. My sisters and I cleaned up and went home, waiting for Christmas day. That night, I went back to her house to return a dip bowl. As I knocked on the door, she opened it and staggered to her kitchen chair. She said she couldn’t breathe, so I raced and fixed up her home oxygen concentrator. Once I got her to her chair in the living room, I kissed her goodnight and hoped she be better by morning.
But, by the next day, she could barely speak or stand. My father called to transport her to the hospital…the day after Christmas. As I watched the ambulance drive away, I knew that things would never be the same. My premonition was coming true. And things got worse at the hospital, where she was diagnosed with bacterial pneumonia and bacteremia. She called me claiming she was seeing birds and snakes in her room. My father watched his mother have full conversations with her husband, who died 25 years ago. By the time she arrived home, things began to get much worse. One day she would be doing well and talking normally. The next, she would be hallucinating all the time and being unable to move without assistance.
It is for this reason that Lewy body dementia is called the “roller-coaster” disease. The patient frequently has good days and bad days. There is no cure, but my family always looks forward to days if they are good. Unfortunately, for three long weeks, my sisters, my father and I took care of my grandmother who now needed 24 hour care. She couldn’t use the bathroom without assistance, she became lost within her home, she hallucinated frequently.
(I couldn’t even list all the things I chased around the house for her…)
I watched my husband experience a decline in cognition followed by a period of what seemed like improved function only to plunge again into confusion with more frequent hallucinations,” says one caregiver newly acquainted with Lewy body dementia (LBD).
Another thing we soon realized was that any infection, no matter how big or small, only made things much worse. A urinary tract infection made the hallucinations worse. A thrush infection had to be treated as it made its way down her esophagus. These are what doctors deem “opportunistic infections” as a compromised immune system has a hard time fighting them off. Dementia affects brain cells, so it affects the immune system. Small infections can become dangerous in these patients and even result in death.
And as these infections came and went, so did my grandmother’s mood and delusions. My father took most of the brunt of these vicious attacks. My grandmother claimed my father was trying to kill her because he was sorting her medicine (as he had done for a long time). She also claimed he was having an affair with a ghost (yeah, I don’t know how she thought of that one). When she fell one early morning, my father had to call family members to get her out of the floor. (She wouldn’t let him come near her.) She chased him (quite quickly, albeit with a walker) out of her house to get the (censored) out, and never return. Of course, by the next day, she had forgotten or didn’t remember what had transpired. Because she cannot hear, she frequently assumed people were yelling at her. Because we couldn’t see hallucinations, she yelled at my sisters and I that she wasn’t crazy.
We knew that our grandmother wasn’t in her right mind; she couldn’t be. She would never speak the way she had to my father nor my sisters. Yet, it still hurt to hear those words coming out of a person who had raised you, and who you idolized. I imagine it was worse for my father; it was his mother saying these things after all! We knew this couldn’t continue this way; I knew the stress of it all would eventually kill my father. Like I said, things have a way of working themselves out, for good or ill. What transpired next was the next shoe hitting the floor (at this point, I was beginning to wonder how many shoes were there?!).
My father and my sister drove by my grandmother’s house one morning as my sister need to go to work. I was working from remotely since the pandemic began. As their car drove past, they noticed her front door was wide open and unlocked. My father entered the home with my grandmother screaming that people were out there stealing her truck. “I went out there and got the title to show them it belongs to me.”
My grandmother claimed my father was trying to kill her because he was sorting her medicine (as he had done for a long time).
We knew that this meant she left her home (at God knows what hour) in the freezing January wind for…nothing. So many things crossed our minds. What if she fell and froze to death? What if she left the house entirely? What if she went missing? A final check up to the doctor and hospital visit ended up taking care of these worries…
~Part 4 found here.~
Useful Caregiving Websites:
Alzauthors: https://alzauthors.com/
All-Alzheimer's: https://all-alz.com/
National Institute on Aging: https://www.nia.nih.gov/health/alzheimers-caregiving-caring-yourself
Sources:
Mayo Clinic, “Dementia,” accessed March 22, 2022, https://www.mayoclinic.org/diseases-conditions/dementia/symptoms-causes/syc-20352013.
Alzheimer’s and Dementia Weekly, “Lewy Body Rollercoaster,” May 12, 2014, accessed March 22, 2022, http://www.alzheimersweekly.com/2014/07/lewy-body-rollercoaster.html.