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.

Back to Basics

Mom and I had a good laugh last night. The temperature in our area reached well over 100 degrees, but, with the help of thermal windows and curtains and several area fans, our house stayed reasonably cool until mid-afternoon. I have the thermostat set at 80 degrees, which is a little above my comfort zone, but it is more economical and keeps the air conditioning from totally freezing Mom out.

After dinner, during Mom’s favorite show, Do You Want to be a Millionaire, I got up to offer ice cream to her and Don. As I turned to face her, saying, “Do you want...,” my eyes took in her sweatshirt hood pulled up over her head and I stopped short. She looked so diminutive in the chair that all she needed was a fur lining to her hood and she would have completed the picture of an elderly Eskimo hunched in our living room. I couldn’t help but think that her wanting ice cream at this point was out of the question.

I started laughing and so did she, but she hastened to ask me, “Do I want ice cream?” Then, without any pause as I nodded, “Yes, I want a maple nut ice cream cone if you have enough.” She assured me that the hood was just to protect her ear from the cold air coming out of the register across the room and that she was, otherwise, comfortable.

Ice cream cones have curative powers, after all; especially for children and grandparents. That is a known fact at our house. Remember how Betty loved hers? Even Alzheimers couldn't obliterate that memory. Our kids sure seemed to understand their value at a very early age, as our little redhead can attest below. (Notice that it is a grandparent who is indoctrinating her.)

Have you had your ice cream cone for the week? Life will be much sweeter if you do so quit being such a stuffy grown up and go have some fun. Put the world on hold for five minutes, sit in your favorite spot, get your hands and chin sticky with your favorite flavor, and see if you can’t relax a little and see things from a different perspective.

It is SO worth it!

Treasures

I ran across this picture the other day. I believe it was taken with Betty’s camera and Jeremy must have been the photographer (how fortuitous, eh?) Dated June of 1997, I remember it being taken, although it seems like a century ago.

We had barbecued in our backyard and eaten outside on the picnic tables. I believe we might have been celebrating Father's Day, but mostly we were just enjoying having Don's folks visit us after returning from their winter in Arizona. As usual during family gatherings, we took turns taking the photos, making sure everyone’s camera had its turn immortalizing the moment. Many times Dad and I have wished we owned Kodak stock because of our tendancy to memorialize everything!

Although we all automatically assembled and posed until the last click, we often would have loved to forego the inevitable ritual. Now, however, I am really thankful to have these frozen memories to stumble upon.

My first, knee-jerk reaction is usually to think of how things have changed since the picture was taken. Kids have grown and moved out into lives of their own, Don’s folks have both died, and our hair is a little bit whiter. This time, however, I can’t take my eyes off of Betty. I don’t remember why she was laughing while the rest of us seem to be patiently waiting for her to get back into the shot, but look at how she is leaning back, fully enjoying her mirth. So different from the way I last saw her after Alzheimers had stolen her joy.

This is the Betty I want to remember. The real Betty, my friend. If we hadn’t taken those few precious seconds to pull out our cameras, I might have forgotten this ordinary moment that is such a treasure to me now.