Imagine you’re at a party with friends when everyone decides to play charades. You’ve never really been very good at the game, but you join in, hoping your team members will be able to guess your word when it’s your turn.
Some of your friends have a knack for this game, using animated faces and contorted bodies to elicit the right response. Guesses are made for words such as ‘computer’, ‘jellybeans’, ‘marathon’ and ‘pocket change.’ Then it’s your turn. Everyone cheers you on as you draw the word ‘giraffe.’ Easy enough, right? You signal to your team that it’s one word and you try to lengthen your neck with hand gestures and somehow show spots all over yourself. None of your teammates seem to know the answer. They’re all smiling at you, but they haven’t a clue what you’re trying to get them to guess. You’re running out of time and your mind draws a blank. But it isn’t a mental hiccup. It’s a vast blankness that you’re submerged in and you can’t think of anything if your life depended on it. Time is up and you turn the card around so everyone can see the word ‘giraffe’ on it. Scores are tallied, another team wins, and everyone begins talking again and laughing.
Now imagine that you walk into the kitchen and try to join the conversation but for some reason, you aren’t able to speak. You attempt to utter a few words, but nothing comes out. The hostess asks if you need a drink refill and your tongue is so tied that you resort to nodding. It’s as if you’re still forced to play charades. What is going on?
You can hear conversations and words being tossed in the air all around you, but you can’t touch them. You grasp for them, but they elude you. You begin to panic a little. Am I having a stroke? Is this a seizure? Did someone spike my drink? On the outside, you’re still smiling. But on the inside, you’re trying to move through this mental inertia as if you’re drifting in the ocean searching for land. You don’t like this feeling. Where did your words go and when will you get them back?
This is what it feels like for some people in the later stages of Alzheimer’s. They’ve participated in thousands of conversations throughout their lifetime, but now their words escape them. They know what they want to say, but when they open their mouth, the well is dry. They become anxious and frustrated, desperately wanting to be heard and understood.
When my Father’s words started slipping, he would make a joke of it. He might say, “My tongue got wrapped around my eye tooth and I can’t see what I was saying!” But as his words slipped further, I wondered what I could do. Do I guess the words he’s trying to say or do I just sit patiently and wait on him as long as it takes for those words to come? What if they don’t come? Even if I can’t make sense of what he’s trying to say, there is something I can do to help him.
Imagine that you’re back at that party, still tongue-tied. You don’t know where your words went but while you’re trying to find them, a friend approaches you and notices that you’re struggling. She makes eye contact with you and asks if you’re OK. She stands there patiently and waves off those who try to engage her in a different conversation. She’s planted herself in front of you and you can tell she’s not going anywhere.
Even if you couldn’t find your words, your friend’s body language communicates volumes. The same holds true with people who have Alzheimer’s. If I sit patiently and wait on my Father, no matter how long it may take for him to finish a sentence, and if I make eye contact with him and smile at him, giving him my full attention, then I’m letting him know he is loved and accepted. Regardless of what happens to his words, he knows that he matters.
The fact is, everyone matters. Those who have words and those who’ve lost theirs.