During Lenten season the spring before my mom was diagnosed with Alzheimer's, someone draped a simple purple stole over the Cross at the front of our church's sanctuary. The first Sunday of Lent we found our seats in our pew at church, and as soon as Mom looked up she became very upset by the fact that the stole did not hang evenly. It wasn't supposed to be even; it was arranged artfully so that one side hung about a foot higher than the other. I explained this to her repeatedly, but each week she would become oddly disturbed when she focused on the stole. "It should be even!" she said angrily. "I don't know what they think they're doing."
This was one of the early signs of Mom's dementia, but in the seven years since her Alzheimer's diagnosis her upset over small things that are not as they should be has remained.
"Would you straighten the window shade...the print on that white board is smudged...one slat in the blind is bent...can you turn that cushion on the couch so the design is right side up...." Mom surveys her world from beneath a ferocious frown and makes comment on things that aren't quite right.
If there were a list of rules for caregivers, "Don't take things personally" would be ranked at the top, and is certainly the caregiving rule I break most often. It is unfair for me to respond as though Mom is deliberately being hurtful when I know that her behaviors are dementia related. And yet, I work hard to keep Mom's environment pleasant, and it seems to me that she spends an unreasonable amount of time commenting on small things that aren't quite perfect. I can't help but feel a little hurt when she seems to constantly focus on things that are wrong instead of commenting on things that are right.
However, there is a cognitive basis for this behavior. Dementia patients have a tremendous struggle to make sense of the world. So many things are difficult for Mom to understand; her questions reveal the depth of her confusion: "Why am I here? Who takes care of me? I know you are Linda, but who is your husband?" In the face of so many confusions, the ability to notice small things becomes like an anchor she can cling to. Mom knows that writing is easier to read if it is not smudged. The shade should not be crooked. The pillow looks better right side up. She comments on such small things because these are things she knows, and on a deeper level, I think her attempts to put small things to rights reflect her ongoing struggle to make sense of a world that is increasingly incomprehensible for her.
I'm praying today for patience and understanding as Mom works hard to set her crooked world to rights.