This is lifted from an article Barb’s doctor sent to me. The writer captures the situation flawlessly.
Step into her world. She is still there.
Sometimes you wonder, don’t you? If she were still the one you knew and loved, why would she look at you that way, so blankly? How could your face and touch be so unfamiliar to her at times, when it used to be so comforting? After all you do to care for her, why on earth would she lash out at you, why would she insult you and try to hurt you? How could anything, even this, make her forget you? And why does she always look for home?
You’ve tried to bring her back, to lead her by the hand to life with you again. There are those moments, those awakenings, in which you feel you’ve broken through. But then it returns: the drifting back into the fog of unawareness. And the spark is gone.
Her world is sometimes one of darkness, of wandering, of isolation. She often sees and experiences things she should recognize and know, but cannot understand them. Warped perceptions of reality close in on her existence, at times evoking panic and fear. She tries to escape to something she knows, something which will comfort her and give her peace. But every door leads only to another unfamiliar room, cluttered like a patternless gauntlet. Her life seems like a room with a keyless, locked door.
But yet you know some seed of her must still be there. You see it at times, beautiful and true. May’s rose is a still a rose in December, is it not? Do petals touched make the plant? Does blossoming perfume make the flower, or something more? Is a garden loved in winter as in spring?
How can this loved one be reached? You know her soul’s light still burns. Can dementia’s frozen walls be broken so that hearthside warmth of home again is known? —thanks, Dr. G.
“Hi, my name is Larry and I’m a control freak.” “Hi, Larry!” responds the very large group in unison. The electricity in the room could power a well-manicured subdivision. Deed-restricted, of course. But, we are not here to confess faults. This is a rally of dedicated survivalists. Control Freaks Anonymous.
I haven’t controlled anything since 2007. I barely control my bowels. In CFA we all have a loved one who lives with Alzheimer’s disease. We’re all family members who raised children and took vacations and went to church and to ball games. Most of us have grandchildren. And we all live bizarre lives. Lives that often look normal, but are completely out of control.
Some at the meeting are genuine control freaks. They’re scattered throughout the audience and sit sobbing. The rest of us are just plain folks who are losing touch with reality. We’re caregivers for a loved one living with Alzheimer’s and we don’t know what’s going to happen from moment to moment. Heck, we’re not even sure of what happened just a minute ago.
Every month for two hours we gather to pretend we have a life. We proudly call ourselves control freaks the way a kid might call himself one of the superheroes in The Avengers. In fact, we are simply survivalists.
The worst thing that can happen to a survivalist is to be defeated by a threat. I have never faced a challenge I could not overcome. By working with God, or with friends; or with doctors or with Google, I always knew I would control the situation and survive. But that was until this control freak survivalist came face to face with Alzheimer’s disease. This enemy straight from hell was a game changer. It’s pure kryptonite.
At the CFA meeting we proudly tell lies. One man had a chat with his wife at breakfast. Another found his shoes where he always leaves them. A wife turned off the TV and took a walk with her husband. A lady’s mom phoned her just to talk. The group claps loudly at each story.
Finally, the meeting is over. We fold our chairs and put them back in the little storage room. This one act seems like pure joy. We hug one or two, say goodnight and make our way to the parking lot.
The memory lingers:
“Hi, my name is Larry and I’m a control freak.”
somewhere there’s eerie laughter.