Dignifying Dementia (12 page)

Inside a store, his behavior was equally unpredictable; while I was at the checkout counter, credit card in one hand, emptying the cart as fast as I could with the other, he might bolt for the door. When I was at a teller's window or at the post office counter, he would demand to see the manager. I completed my transactions as fast as possible to catch up with him, steer him back to the car or simply walk after him.

At home, he followed me everywhere. If I talked on the phone, he talked to me simultaneously. If I needed a few quiet minutes to sit, or write or complete paperwork, there were none. I couldn't concentrate. The checkbook was unbalanced. My last entry on my Quicken software was months earlier. I mailed letters without stamps, put the wrong checks in envelopes, paid the wrong amounts, wrote checks, put them in stamped envelopes and forgot to mail them, so I was assessed late charges. I sorted through a pile of papers and found unmailed letters and a two-year old check I had failed to deposit. Jim's behavior was ‘quixotic,' and I was in a state. Because I couldn't stay on hold with a customer service representative at Blue Shield or Medicare, I found a woman who ran a small business helping people file insurance claims. I registered with her, and she handled that chore for us.

Poor Jim was so confused. One quiet afternoon, we drove to the local Barnes & Noble because it offered a familiar layout and also was a place to walk, no longer a place to buy. We strolled around the store, and when we were done, I asked if he wanted to go to Pier One, which was next door. He said, “You mean in Dalton?” Dalton? Barnes & Noble was next door to Pier One in Dalton, just north of Lenox. We were in Hilton Head at the time.

Besides the bookstore, another familiar place to go was the local deli. We had eaten lox and cream cheese on rye there for years. On one particular visit, Herman, the owner, joined us and regaled us with stories about the old days in the Bronx. Jim listened, seemed to understand and laughed. Then Herman finished his sandwich and got up from the table. We finished ours. I paid, and we walked to the car. I opened the passenger's door for Jim; he climbed in, and I walked around and got in the driver's side and helped him with his seatbelt. As I buckled him in, he looked at me and smiled. “That was fun,” he said. Then he paused, continued staring at me and asked, “But who are you?”

My heart sank. His not recognizing me was happening more and more frequently; he would look frightened, or stare at me and then dart away. And my saying, “I am Elizabeth, your wife,” was a waste of time! I was sick at heart and personalizing his rejection.

How could he not recognize me? Not only did he not know me, I had become a group of strangers – some disturbing, others benign. The ‘driver' of the car – me – was one person. The person in the kitchen another, and the one in the front room of the apartment, the one with the computer, seemed to be the “manager” or “supervisor” – the least amiable of the bunch. When we were standing in the living room, he would look toward that room, lower his voice and ask me, “Where is SHE?”

Shortly thereafter, we were going to take a walk. We left our apartment and proceeded along the walkway down the stairs to the second floor. But, instead of going down the stairs to the first floor, Jim suddenly turned back along the walkway to the apartment door directly below ours. We lived on the third floor. We were standing on the second floor in front of the apartment door that looked exactly like ours, except it was #202 not #302. Jim turned the knob of that door. It wouldn't open. And no one was home. I told him that he was turning the knob of the wrong door, but he continued to turn it, and the more he tried, the more frustrated he got. I stood beside him. I walked away. I came back. I watched. I explained that our apartment was one flight up. He didn't listen to me. Eventually, I walked down the stairs to the first floor and yelled up, “Jim, come on down. That's not our apartment.” He wouldn't budge. He continued trying to open the door of the second floor apartment door, which would not open. I walked back up to the third floor and shouted down to him. Then I walked down the stairs to the first floor again. What should I do? What could I do?

I was stunned watching my adored husband. What had happened to him and to me? Once again, I told him that he was at the wrong apartment. He yelled at me, “Get up here, Frank.”

Our condo was in a gated community, so, in desperation and with a sense of humiliation, I used my cell phone to call Security and explained what was happening. A guard drove over. I couldn't hear what he said, but he spoke softly to Jim, who smiled at him and walked without hesitation back up to the third floor. “Frank” lacked that touch.

To date, my education about dementia consisted of what I had been taught at the Memory Disorders Program, from the doctors whose advice ranged from not buying a boat, going to comedies instead of tragedies or saying that Jim would become more tired. I remained uneducated about the disease and its progression.

I remembered a book that a social worker had suggested years earlier for my mother to read. At the time, I had only skimmed it. I bought another copy of the classic,
The 36 Hour Day
.

In search of answers, I found and went to several meetings of the local chapter of an Alzheimer's support group, but more often than not, I was the only person at the session run by a social worker with an, ‘Oh, dear, I am so sorry' voice. I wanted to say, “Instead of feeling sorry for me, help me. Make him better. Help me help him. Tell me what to do. Make him remember me. I can't bear this, and I can't believe it. Help. I don't know what to do.” I didn't. I saved my rants for elsewhere – in the shower, in the car, on the street – anytime. However, at the support group, I learned the word, ‘respite.' I stopped going to the meetings because it was too stressful to leave Jim alone in order to have someone tell me I needed a ‘break.'

I tried to learn what to do by watching him. For example, we had two large built-in mirrors in the apartment: one was along a section of wall, the other a wall-to-floor mirror behind the bathtub. I had noticed Jim seemed upset by the reflections at sunset, or by the light when he walked by those mirrors. What was he seeing? How did he interpret what he was seeing? Did he recognize himself? Was it someone else? I covered both mirrors, one with a drape and the other with a shower curtain. It seemed to help.

I stopped watching television on the day he yelled, “Fire!” He had been in the bedroom, and the flickering lights reflected on the wall in the living room must have frightened him.

I also had noticed that, when Jim walked around the apartment or outside, from time to time he raised his foot to take a bigger step, as if to avoid something in his path. I paid more attention. The bigger step seemed to occur when there was a shadow, or a different texture or color on the ground or floor. At home I tried full spectrum light bulbs, hoping that they would make a difference. I couldn't do much about shadows of clouds or trees on the grass; however, I removed the patterned bathroom mats and replaced them with a big, slip-proof, solid-colored mat that matched the color of the bathroom floor and the carpet. It seemed to help. While I worried about the possibility of his slipping, with incontinence, ‘washable' also mattered.

I also stopped speaking so quickly with him and learned to wait for him to process what I was saying. I would say or ask something slowly, then wait and watch his face for an answer or a reaction – no more quick decisions or brilliant repartee.

While Jim didn't always know my face, he always recognized voices on the telephone. I would hold the receiver to his ear; he would hear the voice and say the correct name. A friend of mine had been diagnosed with Alzheimer's; her husband noticed that she, too, recognized voices on the phone.

So, when Jim was particularly upset because he had no car, no home or no money, I would phone one of his children or our accountant and put Jim on the line, hoping that a familiar voice might ground him. By the end of the call, he was usually calmer.

His son, Kevin, called him once a week without fail. Jim immediately recognized the voice and said, “Kevin,” and then chatted away – often unintelligibly. One time after finishing the call, and I had hung up the phone for him, Jim said “Good man”; another time, he said, “Good-bye, Son.”

Kevin visited once a year. The first year, when Kevin walked in, Jim's smile lit up the room. We all went out to lunch and then for ice cream. The next year, when Kevin came, we tried the same thing, but Jim would not get out of the car. The following year, there were no more car rides. Instead, Kevin helped the aides and sat by his father's recliner and held his hand, while Jim muttered in a language largely unfamiliar to us all.

Jim's behavior was becoming more aberrant and for longer periods of time, and I didn't know what to do. No longer good days and bad, it was good hours and bad ones, good minutes and bad ones. He was normal or abnormal, calm or agitated.

He said, “I have no money.” He said, “I have no home.” Someone was being “murdered.” He ripped the bedding. He moved the furniture. He hid his glasses, wallet, belt, shoes under the bed, in his dresser drawers, in the closet or in his pockets. People were stealing from him – including me. Apparently, strange people surrounded him. He threatened me when I didn't return the “stones.” His clothes weren't his. “I can't wear these,” he said, “they belong to O'Neill.” He needed help; he no longer knew how to use the shower. He frequently shouted for the police. He was leaving home – to go home. One night he got up and packed a shopping bag with a pair of shoes, some incontinence underwear and a belt and headed for the door to “catch a plane.”

One morning he broke my heart yet again, when he ceremoniously handed me his precious Ferragamo loafers and said, “Thank you.”