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Monday, August 5, 2013

Alzheimer’s Diary: A wife’s plea rings clear – ‘Don’t you dare laugh at him. Don’t you dare!’

Ginger Sanders has been sharing her painful journey through advancing Alzheimer’s with her beloved husband, John. As a result, she has connected with others who are also experiencing the same pain. One of those is Donna St. Clair of Virginia and this is her story:

“We should take this, too,” he says of the squeaky, ancient golf bag pull-cart that he is placing in the back of the pickup truck.

Yesterday’s torrential rains have caused our first-ever leak in the unfinished portion of our terrace level. Bruce has helped – tried to help, actually – as I have hauled out boxes, canned goods, old photos, junk. There are assorted pieces of oak flooring, scrap lumber and stuff, including an old wooden microwave stand that my grandfather made for me long ago, now in a shoddy state of disrepair and misuse. After the sorting of useful versus useless is completed, the latter items need to be put in the truck bed for the trip to the dump.

Bruce wants to help, which means that in addition to my own chores, I must monitor his every move and give step-by-step directions: “Pull that oak board out… walk up the steps to the first floor … now go out the front door … put it in the back of your truck ….”

God, how I hate every minute of this. The wet basement is bad enough, but what I really can’t bear is the up-close reminder of how impaired he really is. On an average day, it’s a trip to the store … maybe a program at a museum or library … lunch … old M*A*S*H episodes … The Weather Channel … small talk.

On an average day, I can almost fool myself into thinking that he is not so bad, really. Now, however, at the moment that life becomes task oriented, my husband’s damaged brain goes into overdrive – and he looks at me with that confused, helpless look. Often, he wanders the floor with his hands folded into little balls across his chest, watching me work. I have never yet managed to figured out whether he is glad I can do the things he can no longer do … or sad that I have to do them. Maybe both.

But now, we are seat-belted into his new red five-speed Toyota truck, bound for the dump. He is driving. Per doctor’s orders, he’s still good to go with me beside him … in the neighborhood … in the daylight … in the sunshine. The latter part is a stretch today. It is beginning to drizzle again. I turn on the wipers. He has no clue where they are. I glance over as I always do, sure that my arm is a quick reach to the ignition, just in case I need to execute an emergency turn-off. So far, so good.

As the crow flies, our dump is only two miles away; three-and-a-half via the slow back road. By the time we get there, the heavens have opened again. Bruce stops his truck in front of the main dumpster.

“You stay in the truck,” he says gallantly as he exits. “I don’t want you to get wet.”

That old familiar lump wells up in my throat. With the few brain cells he has working anymore, a bunch of them still yearn to protect me.

“You’d better ask the manager which bins to put this stuff in,” I remind him through the window.

“Oh, it’ll be OK,” he says, grabbing the golf bag cart and heading to the nearest dumpster.

“Doesn’t go there!” I hear the Voice shout from inside the manager’s nearby hut. “Use a blue bin over there.”

I see Bruce and his cart turn in the rain and head in the direction of the blue bins, clear across the large dump lot. The rain has begun to pour. I consider scooting over to the driver’s seat and following him over in the truck. Not sure what to do – it’s that preserve-his-independence argument that plays out in my head on an hourly basis. I sit. Bruce stops, turns and looks back in the direction of the manager’s voice.

“The blue bins!” the Voice shouts again, over the rain.

Confused, Bruce turns and heads directly for a brown bin, now running as the rain cascades around him.

“I said the BLUE bin!!” the Voice bellows. And the unspoken words might as well have been added:

You idiot.

For a moment, time stands still at the dump. The people from two other pickups and one commercial truck all turn in slow motion to stare in Bruce’s direction. Pitiful, wet, confused old man, standing in the rain with a golf bag pull-cart in his hands, trying his best to figure out where to go, what to do. A bystander finally points a finger in the right direction. Bruce turns and follows obediently. The others smile and shake their heads.

My hand is on the door handle. In two seconds I have gone into full mommy-mode, with a good dose of school teacher thrown in for good measure. I am going to hop out of this truck and take somebody to task, by God:

“Don’t you laugh at him. Don’t you even look at him. What you see isn’t who he is. You can’t even imagine who he is. He knows more about U.S. geography than George Washington, Thomas Jefferson, and Lewis and Clark combined. He’s had pilots compliment his innate sense of navigation from air to ground. He can mow grass, braid a little girl’s hair, and fix a Crockpot full of spaghetti, all at the same time. He’s hiked the Grand Canyon twice … walked 109 miles across Scotland. He’s a wine snob. Ask him about the history of the Cajun people. The Navajo. Melungeons – bet you’ve never even heard of them. He’s ravished me in hotels across North America,  Mexico,  the Caribbean,  the UK, Europe. Ravished, I tell you. You see a pitiful old man in the rain – but that is not who he is. Don’t you dare laugh at him. Don’t you dare.”

No, I don’t say it. I sit, dry and obedient, in the red truck with my heart breaking open like it does several times every day.

Bruce throws his pull-cart into a blue bin, turns and runs back to his truck, throwing a hand up in the air to give a guy-wave to the men on the lot. Again, they shake their heads. Pitiful old man in the rain.

I am reminded of the mother who takes her handicapped child to school on the first day, hopeful that people will be kind and caring – but fearful that they will not. The world looks different when your loved one is the one that people point at.

I complain sometimes that Bruce seems to never want me out of his sight, but perhaps that is not the whole story: the real truth is that I am growing more and more reluctant to have him away from me.

I am the only one who still sees who he was – despite who he is.

Although Ginger is a vice president of sales for a renowned antimicrobial company (SAS Global Inc.), her main objective is to stymie the onslaught of Alzheimer’s on her husband, John. Ginger lives with her husband and three dogs on their farm in Lawrenceburg. A dedicated family person, she and her husband have 11 grandsons. Ginger Sanders is a transplant from South Carolina and a product of the University of South Carolina where she majored in the English Literature. She has taken on the fight of Alzheimer’s to win and help others as they struggle through the quagmire of this disease. She can be contacted at ginwsanders@gmail.com.

Read more of Ginger’s diary entries



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