Dignifying Dementia (21 page)

Life was complicated too by the threat of hurricanes. Because the climate in Hilton Head is temperate, with the exception of hot, humid days in the height of the summer or a cold snap in January, Jim could be taken out in the fresh air – no snow, no ice. I could get around, and ‘help' could arrive – no blizzards, no subway breakdowns, but Hilton Head is a barrier island, and we had the potential for evacuation.

Jim and I had evacuated twice because of the threat of hurricanes in 1996. We had booked a room, left early and driven ahead of the traffic to a motel in Macon, Georgia. By the time we arrived, every room was reserved. As people arrived, we heard about the traffic buildup on the island caused by the lines of cars filling their gas tanks. The police had opened more lanes leaving the island, but traffic crawled. So the thought of having to evacuate Jim in his condition was a nightmare. The hurricane season runs from June 1 to November 30.

Many people from Hilton Head choose to evacuate to Atlanta, but even when Jim had been ambulatory, we would never have been able to make the five-hour trip – he would have been too confused. Once he could no longer walk, we would have to maneuver him into a car, drive, move him into a hotel room and care for him – incontinence, feeding problems, bathing and all.

To discuss my fears, I met with the Emergency Management Coordinator and asked him what to do if we had to evacuate the island with Jim this ill. He said, “Don't do what so many people do – drive to Atlanta or Statesboro. Just get off the island.” He showed me contour maps of Hilton Head Island. A major hurricane with a storm surge would cover it. I repeated what someone had asked, “Why do we have to evacuate? We live on the third floor.” He explained, “Water is heavy. If windows break and water comes in, floors collapse.”
Why had we chosen to live here!

“Go to Ridgeland. It averages 65 feet above sea level. While you will get the wind and the rain, you won't drown.” Ridgeland is only about 35 minutes west of Hilton Head, off I-95. It wouldn't have been a pleasant drive, but we could have made it if we had to. He added, “Go during the voluntary evacuation, or you'll be stuck in traffic.” A ‘voluntary' evacuation is what it sounds like; it is a choice and is earlier than the ‘mandatory' evacuation. However, leaving early would mean that Jim would have to be away from his known world for longer. He may not have understood that this apartment was his home, but those surroundings appeared to be familiar to him. He seemed to have a sense of where his recliner was, bathroom was, or front door was. At times he pointed to where he wanted to go. And leaving for longer also meant more food and more supplies.

Prior to meeting with the coordinator, I had visited motels, including one in Georgia. I had hoped that by driving over to introduce myself and by explaining the situation, the hoteliers would give us a room before the rest of the evacuees from Florida or Georgia, but I had no assurances. When the coordinator suggested I go to Ridgeland, I drove up I-95 and visited a sturdy little one-storey brick motel. I was thrilled and relieved when the owners promised we could have a room if we had to evacuate. What a relief! During one particularly ‘active hurricane season,' I made a reservation, and, as the storm track altered, I moved the date, then called again and finally cancelled. The owners understood and refused to accept any money for the inconvenience I had caused them.

Each June in preparation, I packed a box of food filled with prepared tuna, summer salami, Newman's Own lemonade, canned peaches, anything that didn't require cooking and left it sitting in the corner of the kitchen ready for a quick getaway. I filled the trunk of the car with a transport chair and bought extra supplies: Jim's underwear, wipes and gloves.

But I never would have been able to evacuate with Jim alone. One year, Carrie offered to let us stay at her house. But her family rotated care for her father, so the next summer was her turn. Then Sylvia agreed to evacuate with us, but in her case we needed to bring her niece and her godnephew, so we would need more than one room at the motel. One year Sylvia chose August for her vacation, almost the height of the hurricane season. Within days of her return, a storm barreled down on her own family, and she couldn't make contact with them.

Without the coordinator's support, I might have had a nervous breakdown. He would call my cell phone to say, “Don't worry” or “Consider the possibility of evacuation on Friday.” He always added, “Don't worry until I tell you to.” And, if I called him, he'd say, “Are you watching
The Weather Channel
again? I told you not to do that.” I promised I wouldn't. I thanked him by writing an article in the local magazine.

Would we be able to get Jim in the car and drive to the little motel room? How would he handle being in a strange room in a hotel with thunder, lightning and wind? One year, when the outside of the condo was being painted, and the workmen had placed plastic sheeting over the windows, Jim became frightened by the strange shadowy figures outside on the porch. Another source of anxiety was the fireworks on the Fourth of July.

As Jim weakened, the hurricane evacuation worry changed. Would we be able to manage to move him in the transport chair? Would we be able to move him if he were lying down? I researched buying a van. But it was prohibitive to buy one in the case of one evacuation. I called a van taxi, but the driver said he had to take care of his own family first, and once he left the island, he would not be permitted to return. I called the hospital and the Red Cross. Both said, “Bring him.” But, when pressed, neither knew exactly where their shelters would be and how they would move invalids. Ah, the joys of living on a barrier island with a man suffering from dementia! Fortunately, we were spared. But the tragedy in New Orleans taught us all that having a plan is imperative.

If throwing out cancelled checks was hard, letting go of our king-sized bed was impossible for me. Even though we had had the 24-hour experiment with the hospital bed, thanks to hospice, I refused to give up sleeping in the same bed. The aides were not pleased with me. No question twin beds would have been easier for everyone, because we could walk around the bed to adjust Jim and his pillows or stand on either side to help him sit up. But every once in a while at night, Jim reached out his a hand to hold mine, and I was not giving up those moments – infrequent as they were. Sometimes when I reached over to change the soggy burp cloth under his neck, he would swat at me, but it didn't matter. We were in the same bed, I could feel his warmth, hear his breathing, shift a pillow, or move him if he began to choke.

In time I had no choice. We had to get twin beds. Carrie took the king bed. It had to be, because it was too hard to turn him, change him, adjust him, and make up the bed which had to be done at least daily and usually more often.

Actually those were some funny scenes. When he could no longer walk, we had to transfer him from the recliner to his transport chair to his bed. While Carrie and Sylvia could transfer him single-handedly, Denise and I could not. We could roll his chair close to the bed, bring him to a standing position, swing him around and seat him on the side of the bed, and lower him slowly to a prone position. But if we sat him down too close to the end of the bed, his feet would hang off the end when we laid him down. So, standing on either side of the bed using all our strength, we pulled him up by gripping the sheepskin on a count of three. On some evenings, Denise and I were drenched in sweat trying to pull him up, and we laughed with relief when we succeeded.

While we didn't purchase a van, having sheepskins for Jim was just one of the many items we needed to buy. Sheepskin is soft and thick; it absorbs sweat, reduces pressure and wicks urine away. His illness was expensive; the aides were not the only cost. For us, Medicare covered only a few items. At least medical supplies were tax-deductible. To keep costs down I bought in bulk, comparative shopped online or set up automatic deliveries. I also took advantage of a $500 reimbursement for supplies or respite from a local advocacy group.

Jim wouldn't have been pleased by what we spent on him. For years he had scolded me for buying him books, a new shirt or sweater. One day when he was eating his mini-waffles with his fingers, I asked if he wanted more. He didn't respond. I brought him more anyway. He looked at me and uttered a phrase I hadn't heard for years. The last time was probably after I bought him a book that he had seen reviewed in
The Times
. He said, “I can't tell you anything.”

To understand the costs associated with dementia, it helps to understand some of the symptoms: incontinence, swallowing, drooling or potential problems like bedsores. And, as Sylvia used to say, “You are damned if you do, and damned if you don't.”

Like most of the drugs that he had been given, solving one problem invariably created another. For example, when we brought a transport chair into the house, it scraped doors, doorjambs or walls, which meant that walls and doors eventually needed repair. We also needed to remove doors. To make the chair comfortable and to avoid pressure sores, we bought gel cushions, pads and sheepskins. In other words, while we needed the chair, it created its own problems.

Jim struggled with urinary and fecal incontinence. In New York, his overzealous bladder had become the focus of his attention. We were always on the lookout for a hotel or a store with bathrooms. In the South, we could drive to restaurants or movie theaters with bathrooms.

We had seen a urologist, but having a cystoscopic exam frightened Jim. The doctor recommended Detrol for an overactive bladder but said, “Jim's muscle spasm is so severe, he will require such a high dose that it will affect him cognitively.” In essence, treatment for the spasm would affect his mind. “Damned if you do, ...”

While we bought a portable urinal to keep in the car, finding incontinence underwear became the priority. The type I bought resembled his former underwear. When Jim opened the first package, he said, “Thank you, my darling girl.” Those pull-ups cost about $150 a month. I went to the supermarket or pharmacy and filled the trunk with bulky packages. I read the label, called customer service and discovered that the underwear could be shipped to us by the case automatically along with other supplies.

Jim had all manner of incontinence underwear. Some was designed for the daytime, some for nighttime. I bought absorbent pads, which weren't absorbent enough, so I bought briefs that were designed more like diapers, but the plastic irritated his skin, so I bought powders and creams to alleviate the itch. As he became more ill and barely moved, we bought mesh pants with pads, which were easily removed and not made of plastic.

I went online and researched other companies that could supply us with what we needed. Once in a while, when I was more depressed than usual, I would go to the LewyNet website. Long ago, I had ceased looking for cures and treatments. I did find an experimental study being conducted in California. I called and learned that IF Jim were accepted, we would have to fly out west and live there – and I could barely get him to the door.