Living with Lewy Body Dementia: Meme’s Story Part 8

Good morning, afternoon, evening or whatever time you’re reading this. If you are just tuning in, I am writing about my paternal grandmother’s mental decline with dementia in order to raise awareness about the disease and its effect on the person and caregivers. You can find the other seven parts here.

In the last part, I recounted a not so pleasant visit with my grandmother in a nursing home, where she was placed in January of 2022. The experience is still difficult for me to talk about. Yet, when we visited her a week later, it was almost as if those horrible things she had said were forgotten (at least by her). She was the complete opposite, telling my sisters and my father how much she loved us and misses us. There were moments that I began to see the real her, but alas, she was hallucinating during most of this visit. From chatting to people that weren’t there to believing the stuffed dog we gave her was real.

A couple of weeks after our terrible visit which I recounted in the last part, it seemed that all had been forgiven and forgotten by her. I craved to hug her and hold her hand, since she would let me this time.

Yet, I overlooked these hallucinations, as they seemed to bring her some comfort. I had finally accepted long ago that this was our family’s reality now. The grandmother I loved was slowly fading away, but I just took joy in the fact that she was not being the hateful, spiteful woman I encountered weeks prior.

Now, I do need to make something very clear. While it now FINALLY says in her chart that she has some form of dementia, we still don’t know exactly what type it is or what is causing it. Remember that I did say that Alzheimer’s Disease is one of the most common causes. However, in this part, I will be talking about Lewy Body Dementia.

You look forward to the good days when visiting someone with Lewy Body Dementia. Although as the disease progresses, they will have more bad days than good. Yet, it was a good visit since she was being nice and not saying hurtful things. Although she still was hallucinating; something that I’ve gotten used to.

I’ve got some limited experience with dementia before. My maternal grandmother Patricia, “Pat,” or “Mamaw” as my sisters called her, died of the disease. And her symptoms started out very similar to Meme’s. She was hallucinating that she had several cats in her home or that my sisters and I were playing in her backyard, when we were really at home. Then, she started being unable to tell the difference between hallucinations and reality. She’d sleep all day and be up all night trying to fix coffee or go through her kitchen cabinets. My mother frequently spent the night with her and my grandfather until they both were placed in nursing facility (as my grandfather was in poor health to take care of her).

So, if you remember my last couple of parts talking about my paternal grandmother’s symptoms. My family and I knew when she started hallucinating that this was textbook to how my maternal grandmother acted at first. And though I don’t have a degree telling me how to diagnose someone with Lewy Body Dementia (LBD), I truly believe that this is the type of dementia my grandmother is currently battling.

What is Lewy Body Dementia? Basically, abnormal deposits of proteins or the fancy term alpha-synucleins build up in the brain. These deposits are called Lewy bodies and affect changes in mood, thinking, and behavior. This is according to the National Institute on Aging. The cause is again unknown, which makes it difficult to understand how to treat or cure the disease. There may also be a genetic factor that passes through families, but the jury is still out.

Alzheimer’s statistics for Arkansas from alz.org

More than 1 million people in the United States are facing dementia right now. The disease again is progressive with no cure. I did mention in a previous part that it is like a roller coaster filled with good days and bad days. And as the disease progresses, there will be more bad days than good. This is something my family has noticed when we go and visit her. The bad days are starting to outweigh the good.

There are a range of symptoms for this condition, which I will recount here.

Visual Hallucinations: I could write a book about all the things my grandmother has seen, smelled, or talked to. She even tried to attack one of them. 80% of those with LBD experience these. Sometimes this means they later cannot recognize faces of their loved ones and may mistake a coat rack for a person.

Delusions: Again, I could go on about some of these. Mostly these consist of loved ones not loving her or believing family members are out to get her. She has also believed she was kidnapped several times.

Movement Changes: She frequently has what I call “nervous energy” where she will pick at her clothes, phone cord, or jewelry. Sometimes this can cause issues as she ended up with an infection for peeling the skin off her finger. And of course, infections make dementia worse.

Sleep Disorders: This was the first symptom my sisters and I noticed a couple of years before her hallucinations started. We couldn’t sleep in the bed with her as she frequently acted out her dreams while asleep. The constant movement was hard for us, and I frankly don’t understand how someone can truly rest with that.

Now, I know what you’re probably asking now. How is dementia treated? Well, there are three medications approved by the FDA to treat the symptoms by increasing chemical messages in the brain as the build up of those proteins slows those messages. Melatonin may also be good to help with sleep disorders. Anti-psychotic medications should be avoided as they may make symptoms worse or even be fatal. Opiates should also be avoided. This information I got from the Lewy Body Dementia Association website. I’d have to do more research on how effective these medications are and such.

In the meantime, I will try and enjoy the good days with my grandmother. And I will continue to raise awareness of this disease, not only for my paternal grandmother, but also in honor of the maternal grandmother I lost to this disease.

Arkansas has been deemed to be a “dementia desert,” by the Alzheimer’s Association. It doesn’t have enough neurologists to care for patients with dementia. About 10 neurologists for every 10,000 patients. And not to mention that nursing facilities may not have the adequate training, and that there is a staff shortage.

Yet, it is difficult and sad to see the one you love suffer. My grandmother has frequently called to wonder where we are and where she is at. Sometimes she is scared because she wakes up and is somewhere else. I hope in my heart to keep the good memories of her alive. And if she’s got some funny hallucinations going on, it’s better to laugh than cry.

Part 9 can be found here.

I’m also raising money for the Walk to End Alzheimer’s Event held in Jonesboro, Arkansas on October 15th. Please consider donating to our team page. I’m also selling bracelets for $5.00 each, with the money going toward the Alzheimer’s Association. You can find the etsy listing here.

To all those fighting Dementia and Alzheimer’s,

All My Best,

Kelsey ❤