Monday, August 22, 2011

Alzheimer's Strips Away the Map that Leads Us Home

I remember one of the last days of my grandmother’s life, spent in a hospital bed in a private room, close, narrow, and cramped. Cool green walls closed in upon me. Grandmother slept most hours in a drug-induced peace, her back curved, knees bent, her head resting on one arm, one hand gripping the aluminum rail. Waking, she labored to lift her shoulders, raise her head. I moved to help her, to comfort her, and she spat mucous from corrupted lungs into my hand. Then, her throat clear, she whispered, “Help me go home,” and let her body sink back into the bed, a groan rising from those cancer-stricken lungs.

Mother was away, taking care of Dad, and I was on duty, an eight-hour shift, one-third of a day after day shared with two other people, neither one family. I pushed back the nausea and dread, but I held close her words, the last that she spoke to anyone.

To which home did she long to go? An ethereal home or the one from her childhood? The one she made with her first husband, the simple one she had shared with her last husband, the boat dock where she fished most weekends, or the assisted living home where she had most recently lived? Or did she ask me to help her find her way back to memories and language? Grandmother had Alzheimer’s, too.

Recently, I accompanied Mother to several doctors’ appointments. She told them, regardless of their specialty, that she needed a way back to the time when she could remember, when she could form words and calculate numbers. She wants to know the things I know, and she wants to be able to do things I know how to do.

Mom, who prepared nutritious meals from her early teens until the age of 81, no longer remembers to eat, what to eat, how much to eat, or if she’s eaten. She likes ice cream and brownies; she loves cabbage. She no longer recognizes popcorn or likes it, a change that took place in fewer than 90 days. She cannot read menus. She cannot push buttons to make a microwave hum. She needs suggestions and guidance, caregivers and helpers.

Mom, whose home was spotless, no longer sees any problem with eating from a spoon, running it under cool water, drying it with a towel, and putting it right back in the drawer. She does not see cobwebs in corners, dust on baseboards, lip-imprints on glasses, or spots on the tile. Someone else has to clean her house for her, and she gets grumpy when I tell her to put her dishes and utensils in the dishwasher.

Mom, who remembered every appointment, every medicine, every incident--from her own filtered perspective, of course--can no longer tell you which day of the week it is, which companion was in her home just a few hours ago, what television show she currently watches, or her own birthday. She relies upon others with a strong dose of suspicion. She tells herself and me that everything will work out, then asks where she put her money or whether I have paid her bills or what the workman said about the condition of some faucet or icemaker.  And she asks me over and over and over and over. I pat myself on the back for repeating myself over and over and over and over without snarling, snapping, or ‘tude. I use the same soft, neutral tone each and every time because to do anything less or more would be to alarm an already alarmed woman, alarmed because words and numbers and present and past are slipping out of reach even as she claws at them.

This is, I believe, the greatest cruelty in Alzheimer’s: it takes away home, and home is where we all long to be.