There’s Always a Bridge
I recently read a short article by Gene Candeloro. It is simply and understandably entitled, Anger. It’s a response to the situation he is going through with his father who is suffering from Alzheimer’s. Reading this inspired me to start typing away about my own experience with my mother who died of Lewy Body Dementia.
Lewy Body is sort of like Alzheimer’s and Parkinson’s combined into one awful curse. It’s difficult to witness. Perhaps the only silver lining is the fact that its not as long-lasting as Alzheimer’s alone. That might sound harsh, but when you watch someone you love suffering like that, you only want it to stop.
I didn’t have a great relationship with my mom throughout most of my life. Growing up, she wasn’t an easy person to live with, as she suffered from severe bipolar disorder and this was before the good medications were invented. I would later be diagnosed with the same by the time I hit my 30s — though, I had it all my life. My family was keen on denial, and I was no different. I didn’t want to admit I was mentally ill, and I also didn’t want to admit to the onset of my mother’s dementia. At 72, she seemed a little too young. I was never able to accept that she was getting “old” anyway. In my mind, I kept seeing her stuck at age 45. And then it all happened so quickly. In fact, it was immediately after my dad’s death.
They were living in Las Vegas at the time. When my dad passed, I had to pack up my mom and move her to Los Angeles with me. I didn’t have much space for her, but I didn’t know what else to do for the time being. My brother and I were preoccupied with burying our dad, bombarded with logistics of transporting his body, tending to checking accounts, dealing with forms, creditors, phone calls — all those blessed distractions that seem to get you through the darkest parts of a profound loss.
Despite all that, I should have seen the signs with Mom, especially on the day of my dad’s funeral. After the service, everyone gathered at my brother’s house for the wake, and in the midst sitting near my mom to have coffee with a few other guests, she looked over at me like she’d never seen me before in her life.
“You look almost exactly like my daughter,” she said.
I nearly shit. What on earth?
Later, she gave me an abominable snow job about how she was not “losing it” and convinced me that she was just high on tranquilizers that day. I believed her and let it pass. My mom was always a great con artist. She used to talk her way out of traffic tickets all the time.
But then the signs got to be too much to ignore. Yet, I did the worst thing I could have done. I let her live on her own, and I will regret it for the rest of my life. Before I was able to see she was starting to forget things, I let her talk me into getting her own place. I set her up about a mile away from me and I checked on her frequently — usually every day, but sometimes, I had to work. She once wanted a ride to the Foot Locker and I told her to wait a day, but she was too impatient and decided to go without me. This was before I took her car keys and driving privileges away from her, because the Foot Locker was 3 miles away, yet it took her over an hour to get back home.
Because she couldn’t drive anymore, she got addicted to the Home Shopping Network and started buying practically everything they made available, often buying the same things twice. One day, I found a purse she bought: a hot-pink faux leather “hoochie-mama” bag embellished with rhinestones and sparkly mirrored buttons. It was a loud, gaudy piece of fright. I became increasingly concerned, and repackaging to return all the items became a full-time job too.
By the time she started having bathroom accidents, I was trying to figure out a solution to her living situation, but that’s when she took her dog for a walk one afternoon and fell head-first into a neighbor’s raised gardening bed made of bricks. Her accident was so bad, she needed reconstructive surgery on her cheek. After that, her dementia exacerbated at an accelerated rate.
The surgeon told us that patients over 70 could change forever after being under anesthesia. What?! (Your mileage may vary.) They never seemed to mention that part.
She was then transferred to a rehab facility, which was, if you ask me, a real shit hole, and leaving her there only increased her level of paranoia. She’d always had a good sense of humor, but that began to disappear too, though at first, she said every day there seemed like a “Seinfeld episode.”
In her sound and lucid moments, she expressed her fears about losing her mind for good. I’d tell her, “everything is going to be okay.” What else do you say to someone when the outlook is so grim? But I promised her I would remind her I loved her every day, whether she knew who I was or not.
As it turned out, we had to bust Mom out of the rehab. My brother had to pay the EMTs to take her to his house instead of returning her to the rehab after having a minor procedure done at the hospital. The drivers kept saying they could not possibly do such a thing until his offer reached a dollar amount where they suddenly could. We did this because the rehab kept making excuses to keep her in a room shared with seven other patients, keeping her weeks beyond what was reasonable. No one was actually caring for her. They just wanted to charge the insurance company. (Beware of these places. There are plenty of them.)
Getting old and sick is hard. Being sick with dementia is even worse. Everyone suffers. Everyone experiences such enormous loss. If you don’t have patience, get some, because you’ll need to develop it. However, I learned boundless lessons from my mother during this time — lessons about love and who we are as humans. Surprisingly enough and as odd as it may sound, I learned that we are not our memories, despite what other people may think to the contrary. We are who we are because of our experiences, not the memories themselves. Above all, we are human, and being human is about experiencing connections to other humans in the here and now.
It’s a lot more awful for us when someone we love forgets who we are, and not so much for our loved one who doesn’t (or may not) know what’s happening to their brain. But what always stays intact are our core connections: our basic communications skills and responses to being cared for, holding hands, music, art. Everyone responds to those things, and every human being needs love and contact. And that’s what matters.
When things got worse, my mom was hardly communicative at all. She got to a Parkinsonian state; her face was stiff and grimaced, her eyes tightly closed. I remember how painful it felt to look at her hands, how they’d clench. During times I fed her, she’d all but stopped speaking. She rarely acknowledged communication, and only occasionally answered to yes or no questions. However, if I said, “I love you,” she never failed to answer, “I love you too.”
There is always a bridge.
Despite everything, love really does conquer all. My mom taught me this when she wasn’t even sure who I was to her. So, I was sure to thank her before I lost time with her completely. I could tell she felt acknowledged and loved, and somewhere in that interaction, there was peace for both of us.