Where Is Your Whisper?

The following little Greek video from Jean shares what someone affected with dementia might want us to know if they could step outside themselves for a moment. Watching it brought back a flood of feelings and thoughts that must now tumble over themselves to spill out through my fingers onto the keys. Please bear with me...

Many of us have been touched in some way by at least one form of dementia, watching helplessly while someone we love struggles with memory loss, slowly losing the words that could maintain a spindly bridge of understanding. For me it has meant standing on the shore as a child while watching my grandmother float away after several strokes, reaching out to my father as he worked so hard to mentally stay with us while emphysema robbed him of breath, holding my mother-in-law’s hand as we watched her very essence fade before us, and now sadly dreading the weekly decline that I see in the once-lively face of a neighbor.

Dementia, particularly Alzheimers, is a mean disease that clogs the brain, chokes memories, robs emotions, and stabs the very hearts of those left behind to watch its progress. Its victims become at first confused, then frightened, and, finally, silent. There are medicines available that slow its progression and research that brinks on prevention and cure. Until that time, however, it is important to remember that there is always grace.

Born and raised in this American society of independent thinkers and problem-solvers, it took me a while to realize that I could not fix my loved ones. How many times did I patiently, and sometimes not so patiently, try to explain and re-explain what pills to take, how to wash hands or pull up the covers, or why pushing someone down the stairs was not a good idea? Finally, in a moment of grace, I realized that learning was not possible; my friend could not be fixed. The best I could do was analyze each situation and find a temporary solution that might help us both feel less frustrated. I began to hand out each pill to be swallowed, hold her hands in mine under the running water, tuck her in at night, and ask the doctor for medicine to ease the aggression. When she couldn’t remember, I repeated; when she was afraid, I consoled; when she forgot the words, I prayed her prayer aloud and we were both blessed.

This is grace: an unearned gift from God that makes all the difference in the world. To anyone who has just slammed against the wall of Alzheimers, I offer you this ray of hope as you pick yourself up, dust yourself off, and brush away the tears. There is a gift within this loss. Grieve the person who is slipping away, but don’t miss out on this chance to love them more than you ever have before. They need you. They are children, now, who cannot learn, cannot explain, and do not understand why. They need you to make them feel loved and safe. Don’t be afraid; you can do this and you will never be sorry. When you need it, grace will come and you will all be twice blessed.

And for goodness sake, keep your sense of humor! My fondest memory is of Betty animatedly conversing with the lady in the mirror, telling her one day how pretty she was and how glad she was to see her. Poignantly sad, yes, but that is still one of the good memories that balances out the painful ones. If you can’t laugh with a mother who turns herself upside down on the sofa so she can see someone behind her, or who giggles and talks nonstop in rhymes for a week, you will never survive and neither will they. I firmly believe that the moment that they step into heaven, memories released from a mental prison, they will be laughing along with you and marveling at how you stuck with them and gave them dignity and love even when they couldn’t ask.

Although it seems like the person you loved is already gone and only an empty shell is left, I found that they really are still in there somewhere and spending time with them will sometimes reward you with a fleeting glimpse of their spirit. Out of the blue Betty’s eyes would suddenly sparkle as she’d point no where in particular and say, “you know...” like she was in the middle of a conversation. And you know what? Somehow, we did know.