Dementia shows no mercy. There is no cure, little dignity and hope is about as thick as the atmosphere on the moon. I was given sage advice by a doctor. “Don’t attempt to bring them into your reality.” After many years of coping with my parent’s dementia I knew exactly what she meant, but I wonder if people new to Alzheimer’s recognize the depth and wisdom packed into that statement.
Dementia as a language is usually spoken in the afflicted person’s native tongue. Context and meaning often take a walk on the wild side. For the non-afflicted who live with Alzheimer’s patients, understanding this language involves listening intently to random strings of thought and a good deal of intuition. Patience is imperative and curiosity helps. Those not comfortable with the concept of make believe are in for a rocky ride.
The following are the rules of engagement as I’ve come to understand them;
Do not attempt to be right; you cannot and will not ever win an argument,
give up right now
give up right now
Seriously, so what? Even if you could possibly win, your victory will be forgotten faster than you will be able to gloat. If pride and intellectual superiority do not allow you to just let it go you better take a long hike and not look back. Remember; being right is not always smart. If you are able to say with sincere conviction “I’m sorry, I forgot you left your baby on the moon, my bad!” then don your gorilla suit and shake your booty. You have passed your first initiation into conversing with a deeply afflicted mind.
Unburden yourself with the concept of truth
As Americans who read newspapers and watch TV we all know that truth is a highly malleable concept. Silly putty really, an invention of those who need to be right, possibly an idea forgotten before the Bible was even finished. Demented people don’t lie, they just make stuff up. The statement, “I don’t need to take a shower since the President is on his way to get me and I can’t be late,” does not need to be corrected. That would be the same as explaining to children that the books you read to them are blatant lies. Underscore that with a promise to punish them for believing in nonsense and you’ll be well on your way to comprehending the futility of verbally disagreeing with Alzheimer’s folks. “Oh come on, you don’t even know the President,” will be met with anger or tears. “That’s right, being clean is the American way so let’s hurry you into the shower before he gets here,” is far more likely to achieve positive results.
What you know will be adamantly ruled out; in fact you are the crazy person
It’s pretty clear when you become crazy to a demented person. A long, blank stare follows what you have just said, which means your words are not computing. “Nooooooo! Did you just go number two in your pants again???” can be met with a look so full of incomprehension that you will want to pull your own hair. Dinosaurs needed a second brain to control their tails but humans don’t have that luxury. When communication between the mind and nether regions breaks down you will be the first to know, but the person in diapers may be the last. “Okay Mom, its time to meet the President, let’s get you in the shower.”
Zen is perfected by the neurologically impaired; the sands of reality are ever shifting
With no way to learn anything new the past and future are compressed into the seconds of the present. “Don’t touch that or you will burn yourself” is a logical attempt to explain an unpleasant consequence. Sadly instructions are forgotten between dropping something and the time it takes the object to hit the floor. Stay in the moment. Find your center. Something along the lines of “Please go find your baby before dinner,” is more likely to keep hands away from the stove than a thoughtful lesson on the subject. When they return holding a pillow and a banana all you need to say is, “You have a very pretty baby.”
Time travel is possible
A happy pink light fills the room and memories of swirling around a dance floor wrapped in a handsome soldiers arms take center stage… seconds later, shrieking is heard. “Who is that old man?” Dad, the man she imagined she was dancing with sixty years earlier had just walked in the room, now an old, unrecognizable stranger. Mom’s time machine is currently broken down somewhere in her twenties.
Observe the spoken word as a highly flexible concept
See words as something that can be thrown in a blender then poured through a defective sieve before attempting to discern their meaning. When the language centers become damaged speech takes the quality of Dada poetry. When Mom first started babbling incoherent ideas and could still hear herself not making sense she looked at me with sincerity and said “I can’t believe a word I say anymore!” I hugged her and reassured her that she would always be my Mom. I promised to take care of her and that is the primary reason I’m still here. She is no longer aware that she doesn’t always make sense or that she even has kids, but hugs still work.
Have fun, conversations can be hilarious, relax and go with the flow
Endlessly repeated questions can drive the most level headed person to distraction. Try to give a different but honest answer each time. This exercise keeps your brain on its toes and helps ward off the fury of supreme annoyance that lurks on the horizon most days. It is exhausting to make yourself behave cordially when a tsunami of aggravation pounds your limits. Reward yourself often for making this astonishing effort, it is one of the hardest things you will ever learn to do well. Mom asks if she can help me about 5,000 times a day, although filling a glass of water is an impossible task. Once I asked if she could give me a million dollars because that would certainly help and she said she would check her pockets. After feeling around she informed me with genuine remorse, “Honey, I don’t have any pockets.”
Words can be devastating over and over again
If you can’t say something nice cultivate painless ways to bite your tongue. Dad cannot stand that Mom believes her Mother is alive. He definitely has to be right. Her Mother died twenty years ago, but every evening my Mom is still convinced she is going to go home to her Mother. Referred to as ‘sundowning’ the term describes heightened strange behaviors as the sun sets. Dad spends a good deal of time correcting Mom by shrieking “YOUR MOTHER IS DEAD!” As if yelling will finally get through to her. Mom collapses in a tearful heap since her mind is hearing this news for the first time. I could not convince him to stop. Moments later, all was forgotten and the scene was repeated. I used to take her for a drive and promise that Granny was away for a little while and would come to visit us soon. I told myself that Granny was a ghost who hovered around when the spirit moved her, you know, to stay in touch with reality while I was fibbing to Mom. She has finally reached the stage where she believes that Dad is a big fat liar and the news is no longer devastating. The day she announced, “That old man doesn’t know anything!” I sighed with relief. Long live Granny!
Tone of voice is crucial
A voice dripping with honey is most effective, where almost everything else is perceived as intentionally cruel. Demented people have no problems haranguing you with guilt to punish you for causing them pain. “I should just disappear and then what would you do?”, “I know how much I’m hurting you just to be alive!” and “Who wants me anymore?” are the answers I get for rolling my eyes in a moment of frustration. Do not take words at face value, avoid getting caught up in their emotion and refrain from believing that Alzheimer’s people are evil or it will just drive you crazy.
Give up all expectations
Let them go, the sooner you send those troublesome ideas to the vapors the easier your life among scrambled neurons will be. Do not expect to be understood, remembered or thanked. Be grateful for the opportunity to learn a new language, to rise above yourself and to give unselfishly every minute of your day. Oh, and don’t forget to have a life, get some sleep and take care of yourself. That part will be a lot harder to accomplish than you think.
The following are my favorite pictures from a hike in Las Trampas Regional Park last week, a lovely place new to me and one I’ll return to soon for necessary moments of bliss. I love my new camera! With 42X zoom so much of the world is closer. There is much in life to be grateful for. I’m missing friends on Molokai this week (you know who you are!) While there are plenty of remote trails to explore, I don’t know anyone to go hiking, out to lunch or have coffee with in this town. Actually I do, but they no longer remember me. Talk about expecting too much.
Happy 4th of July!! Keep smiling :)