by Ginnie Horst Burkholder
Hurricane Ike reached his tempestuous tentacles all the way up to Ohio, and on a Sunday evening at 8:30 we found ourselves without power. I was prepared with small amounts of water and a four-battery flashlight. With my pioneer heart and long ago camping experience I felt prepared and unalarmed. Besides, the power would be back on soon.
We are on well water, so I rationed out what was stored in the pipes of our old nine-foot, floor-to-ceiling house. Tap on to get fingertips wet. Tap off. Soap the fingertips. Tap on for a two second rinse. Tap off. We did this for the first morning. That day I bought a dispenser of baby wipes and, supplementing our needs with those, we never ran out of water at any of our faucets. It was like the Biblical woman and her oil. I kept thinking that each time we used it would be the last, but it never was, even after one of us would forget and turn on the tap like there was an endless supply.
Early the next morning came a phone call. Adult day care would not be open. My experience with camping didn’t coincide with my experience with dementia, but I had a couple errands to run. In a car, Nelson is either entertained or lulled to sleep. I stretched the errands to include lunch with my sister and her husband, who also were without power, so that we had a full day’s agenda on the road.
At my friend Jane’s house there was power. One of the errands was to stop there and pick up a battery-operated lantern. This was to take the place of three night-lights – one near Nelson’s bed, one in the hall, and one in the bathroom. I slept better that second night, knowing there was more than the full moon shining through naked windows to illuminate trips to the bathroom. Still, minimal light adds to dementia’s nighttime confusion, and cleaning up bathroom misses without water and with very little light is at the top of my avoid-when-possible list. My pioneer spirit was wavering but still, I never questioned that the power would be back.
Jane graciously agreed to have Nelson with her while I went for a quick walk by the lake. The word around town was that it could be a week before everyone had power. The electric companies had sent workers to Houston and were short-handed here. I wanted to take advantage of any chance at respite I could get.
On day two I struck gold! I remembered the spigot at the bottom of the hot water heater. One screwdriver turn and I had a pan of clear tepid water for washing dishes. Then, at my sister’s house, the power came back on, and they offered us their generator. For several hours that afternoon we fired up their generator to do laundry and get the freezer and fridge back on track. We stepped over power cords strung through the house, endured the exhaust, and listened to the heartbeat of the generator that made it all possible. I was ready for normalcy.
After three nights and almost three days, the power came back. We now have a seemingly unlimited supply of water. The lights in every corner are available to illuminate the evening routine and to accommodate nighttime needs. The refrigerator is doing its job and keeping everything at the right temperature. The toilets flush. We are able to return to our normal.
I think of nearly twenty years of living with Lewy Body. If only we could know that someday the lights will come back on for Nelson. But those are electrical circuits that no power company in the world can fix. Those are connections that we have no hope in our lifetime of repairing. Ike was a huge inconvenience. But inconvenience doesn’t begin to describe the impact that Lewy Bodies bring to the human brain and experience.
A few hours before the power came back, I watched a convoy of trucks with our electric company’s insignia roll by our home. I felt a surge of hope and relief just knowing they were finally in the neighborhood. Sometimes it seems that the resources for prevention, treatment, and cure of Lewy Body, are all in Houston taking care of cancer or some other more recognized disease. I long for the day when a convoy of resources brings hope to those who have lost their power because of Lewy Bodies. It is after all, the second leading cause of dementia.
Thirteen years ago when Nelson was diagnosed I would speak of his disease as “Alzheimer’s” because no one knew what Lewy Body Dementia was. Even many doctors and nurses had not heard of it. Now I call it what it is and try to educate each person even if only to say it has features of both Alzheimer’s and Parkinson’s. On our day of errands, Nelson’s knees collapsed under him while we were walking into the office to get his eyes checked. A customer offered her assistance, and then, after we had him in a wheel chair, she told me she was a nurse. I told her his diagnosis, expecting the usual blank response. She surprised me by saying she knew what it was. There is some progress.
Recently a friend returned to church for a visit from Arizona where she and her husband had retired. She lost him three years ago to a diagnosis of “first Alzheimer’s and then Parkinson’s.” As we talked, I suspected LBD and promised to send her a brochure. “It described him exactly,” she wrote back to me.
The word is leaking out, but we need a flood. I now give brochures about Lewy Body to everyone who has anything to do with Nelson’s care. I don’t have hope that the lights can ever come back on for Nelson. But I can work toward the day when our grandchildren, or perhaps even our children, can grow older knowing that they will not be stripped of their power.
© 2008 Ginnie Horst Burkholder
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