HER SMILE SAYS A THOUSAND WORDS.
It is hard to wake up one day and realize your mom has slipped. It was not just one day she was good and then next she was worse. It happens over many days and months, and it is not until you go back and recap, that you realize the change. If you are just joining this journey, my 80-year-old mother has Alzheimer's and currently lives in a memory care facility. Head back to my website to read more about mom and me.
I guess that is true about a lot of things. But, when it comes to human nature and our ability to adapt and change, most of the time, it is a subtle difference each day that, in the end, evolves into something bigger.
Mom's brain is continuing to deteriorate. How fast? No one knows. We don't get MRI scans monthly or have a foolproof way of measuring the changes happening in her brain. We can't draw blood and analyze the white blood cell count or another blood test to determine how things are changing. So all my family has to go on is our observations and the little communication mom can give us.
But she is changing, of course she is; this disease has no cure. But I guess I was expecting it to be different. Honestly, I was not sure what to expect. I mean, yes, I have a broad sense of how this disease progresses and the path to the end is pretty mapped out. But when you get down to the micro-level of the progression, it is so different person to person. So how will mom progress? I don't know exactly, but I can tell you what has happened.
For starters, Mom is much quieter. She used to chatter on and on, never making much sense. She continues to do that nonsense chatter, but it is much less frequent. The best way to describe her speech is gibberish. The words themselves are actual words but the sentence makes no sense. For example, sitting outside looking at the blue jay eating from the feeder, she pointed and said, "That, terrible, it can be, see, yes that goes, there see." The best thing to do is agree and let the babbling continue. She is trying to tell me something and a calm agreeable response keeps her engaged and connected.
When she is engaged and talking, her facial expressions are a more accurate representation of her thoughts. You can tell by her hand gestures and movements what she is talking about or needs. Not all the time, but if you pay attention to the environment around you, Mom makes the same expressions she has always made. A roll of the eyes at a resident acting a bit agitated or scrunching her nose and lips when something isn't going right. It is fascinating to me. These are little actions I paid no attention to for years of my life, and now they are so valuable. But I did not memorize these expressions or nonverbal cues mom has had all her life. They were just a part of the whole package. And as this package starts to unravel from the inside out, these ingrained little movements have become so important.
Think for a second about you and all the fascinating different expressions or movements that are so "classically" you. Or picture your parents, spouse, best friend, or child and take away all the words and watch their face and hands. So much can be said without even opening your mouth. A turn of a shoulder, tilt of a head with a sideways glance, or even an extra-long hold of a smile can communicate so much if you just let it.
Over the last several months, she is talking less and I have had to rely on her facial expressions more. Additionally, she'll stare off into space more easily and it happens more frequently. Lost in her world, I can bring her back with a gentle nudge or touch her back, and the babbling will start again.
Some visits will be full of gibberish and laughter. Those are the best days when all the stars align. Her medication is perfect, the weather is just right, the time of day is spot on, and she slept and ate well. She can be chatty and so fun to be with it. It fills my bucket to the brim.
The fascinating part for me is the juxtaposition between those moments and her quieter moments. You go between moments where she makes eye contact and recognizes you with a smile and a twinkle in her eyes, then to a distraction in the room, which sends her far away into her world. I don't know what's happening and which neurons are firing and which ones aren't; nevertheless, I could stare at her in awe for hours.
If you watch her face, you can see that she knows you. There is so much in a person's face, so much life and love and sadness. Watching her smile that causes her eyes to twinkle, the lift of a cheekbone, or the retraction of her lower lip, she is communicating. So much can be said by one's face and Mom is no different. When I walk in and get her attention, I pull down my mask and smile, and you can watch the transformation take over her face. You know she knows you. You know she loves you, and the fullness and love wash over her and me.
I could sit and wallow in all that is lost. All the memories she does not have, all the lost life, or I can find joy in the little things left. Fully knowing they will not be here for long. It is that mind shift that I think is so necessary for those affected by this disease. You have to meet your loved ones where they are at this exact moment in time. Find joy in what they can give you right now. Thinking of the past and what they should have, could have, would have been, will only lead to anger and sadness, resulting in a missed moment, a missed smile or touch of the hand conveying so much love.
A family can enter their loved ones into studies or change their diet and work with different medications and supplements. Those things are justified, valid, and worth exploring. We tried it all for mom, but in the end, and at this time in history, the disease will win. You have to accept that fact. The medical advances on the horizon are exciting, but it doesn't change my situation or the present time for all those fighting this disease. Ugh… such a downer. It can be so depressing, but I encourage those affected by the disease to refocus their energy on what is there and what your loved one can give you at this time.
In making this mind shift, I have learned so much about myself. I have learned so much about my parents, both mom and dad. I have witnessed weaknesses in the strongest of humans and grace when I have least expected it. I have become comfortable in silence and tuned into nonverbal communication so much more than ever before. I know things will not always be this way, and change is inevitable, but my eyes are wide open, and I continue to work on breaking down my internal barriers so as not to miss the little things present in Mom's life.
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