September 21st, World Alzheimer’s Day

ID Collaborative blog post

When I was 12, my grandmother lived with us for a summer while we were trying to find a good nursing home for her that had an available room. She suffered from Alzheimer’s disease. After living with her sisters in Melbourne, FL for years, they could no longer care for her in the ways she needed. That trademark “forgetfulness” had grown into bouts of fear, confusion, and disassociation.

My bedroom had a pair of twin beds, so she slept in my room. I barely got any sleep the first few days, as she kept me up all night claiming that tiny dogs were stealing money from her purse on top of the dresser. As much as I tried to convince her that they weren’t there and that everything was alright, I couldn’t. After a few unsuccessful nights of attempts to calm her, I decided to play along. I swatted at the “dogs”, shooed them out of my room, and pretended to lock the door. Immediately, she breathed a sigh of relief and went back to bed. The next morning, she tried to make my bed while I was still in it –trying to smooth out all of the “lumps” in the bed. Rather than convince her that I was still in the bed (i.e. I WAS the lump), I reluctantly rolled out and started my day. Through a series of similar situations that felt more like improv class than everyday life, my sister and I quickly came to realize that whether or not someone with Alzheimer’s seems attuned to the present reality doesn’t matter much in terms of how you interact with them at that moment. Their reality – whether it’s based in events from childhood or 10 years ago or even the present – is the only reality they can experience at that time, & we just have to acknowledge it and play along.

What you may not know is how widespread the effects of Alzheimer’s are. Most of us are familiar with loss of memory, speech, and/or literacy. Unfortunately, many other parts of the body are directly affected by this disease as well. These patients battle arthritis in their extremities, painful neuropathy in their feet (inducing that familiar “shuffling” versus walking), irritating background noises constantly humming in their heads, diseases of the eye like macular degeneration and glaucoma, depression, agitation, shortened attention span, and yes, forgetfulness. Most of us couldn’t perform our everyday tasks or remember how to get from point A to point B if we simultaneously dealt with all of these issues either.

Luckily, multiple organizations exist dedicated to medical research and providing caregivers with the resources they need to look after those afflicted with this illness. On September 21st, World Alzheimer’s Day, organizations around the world concentrate their efforts on raising awareness about Alzheimer’s & dementia. According to the Fisher Center for Alzheimer’s Research Foundation, someone develops this heartbreaking disease every 68 seconds. Researchers predict that by 2050, 16 million Americans will have Alzheimer’s. It’s the 6th largest cause of death in the United States these days, and physicians are dedicated to finding out more about how we can better treat and even prevent this illness from robbing our minds and eventually our bodies. Here’s a link to more information on what they’re doing: https://www.alzinfo.org/articles/world-alzheimers-day/

In reading articles about Alzheimer’s and Virtual Dementia Tours, studies show that the best way to calm our loved ones and keep them on task is to be their constant cheerleaders. Moving forward with this knowledge, let us not set our sights on who they used to be, or who we want them to be. We must meet them where they are – which may be different every day, but it’s the only place they can be. They don’t have a choice. We do. Let us choose to be empathetic, to be present, and to be their supporters when our patience is stretched and our hearts are heavy. This will create one of the few realities that you and your loved one can experience together, on the same page, in the same moment. Let us support research to treat & prevent this crippling disease. Let us live in the present while fighting for the future.