Monday, August 20, 2012


I've never enjoyed the distorted perspective provided by carnival mirrors. Most film clips that include such a glimpse also include knife-wielding psychopaths in hot pursuit of some terrified innocent. Just thinking about it creeps me out.

My personal experiences in front of those things have been equally unnerving. Fun for a moment, these mirrors disturb the norm, displaying fat views, elongated and crooked views, and rendering one's face unrecognizable. Their humor comes from disorienting the viewer who can walk away at will.

But what if you can't? What if who you see and who you are is a toss-up every day? What if some days, you look in the mirror and see a 78-year-old woman whose clearest memories are rooted in sixty-year-old experiences? This is Mom's world. This is the carnival mirror known as dementia.

I spent last Thursday with her, attending to her bills. Her budget is a working crisis nestled in a life in perpetual crisis. She lives on a decrepit 17-acre farm with about 60 residents--a motley assortment of goats, chickens, geese, two mules, a pregnant mini-horse and ancient gelding. These are her children. Her children have now become her parents.

Not every day is bad or hard. Some days, days when things are rolling along according to her routine, she does great. She's funny, kind, generous, and caring. Some people look at us on our weekly "dates" and smile as mother and daughter make the rounds at WalMart, the pharmacy, and the park. She retells her favorite old stories from childhood, I tell her stupid jokes, and we generally wind up oohhing and ahhing over the spread at Mom's favorite Chinese Buffet.

Bad days don't have to be whole days. A single event or question can throw her off her game, or trigger an unpleasant memory that will consume her and throw her into a burst of anger. I've come to realize that anger is generally an expression of fear, and so we start un-threading the day to discover the source of that fear.

Some people grow impatient with Mom--people in line at the grocery who slump across their carts as they watch her struggle to write a check, forgetting the date, asking the clerk to repeat the total several times, looking to me for reassurance.

Some stare at her severe make-up and black polyester wigs. She's a beautiful woman, even at 78, but her look has undergone some curious cosmetic enhancements. She now draws thick, Groucho Marx-style eyebrows in black eyeliner which we replace regularly, along with a few tubes of difficult to find bright orange lipstick. She can't discern a clean shirt from a soiled one any more, but she becomes insulted and indignant with I point stains out to her, so I have learned to flatter her into changing, with comments like, "It's such a pretty day. Let's dress up. Go put on that pink shirt."

Some people take advantage of her. A thief stole replacement checks from her mailbox, requiring us to close her account and open a new one. Even though we chose the exact same check pattern and style, the confusion of making the change overwhelmed her. We sat in a customer service rep's office to make Mom comfortable. She later told my brother she was in an attorney's office, and that they took a lot of pictures of her. I realized later that she had been quite upset by the many security cameras placed inside the bank. To her, she was being photographed like a convict.

Some people pity her, and us. The bank personnel were overcome with empathy as she begged them not to close her account. They tried a dozen ways to explain how this was for her good, but in the end I realized another painful thing--we'll need to assume legal control of Mom's affairs soon.

It's a hard road, a road most of us will be on someday, either as the caregiver, or the patient. It's hard to prepare for this time, for the interruption it creates in the lives of all concerned. Two good books on the subject are "The Thirty-Six-Hour Day" which is a good guide for caregivers, and "Still Alice," a novel written form the perspective of the dementia victim. Both were recommended by good friends. One is also going through this journey with her mother. Talking and sharing helps.

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