Dignifying Dementia (15 page)

Leaving the apartment and getting in and out of the car was always a crapshoot. Jim might leave the apartment, or he might not. If he did, he might get in the elevator or not, or climb in the car, go for a drive and then get out. Or he might walk to the car and refuse to get in, or he would walk to the car, stand by the open door and then close it, or get into the car and refuse to get out, or walk to the car, get in, get out and stand by the door and refuse to budge; he wouldn't get in, and he wouldn't walk away.

The seatbelt offered another challenge; sometimes he held onto it and would not let it go. Five or 10 minutes might pass. Sometimes we offered him something else to grip, and he would release the belt – sometimes.

Once with Carrie standing beside him, I tried an experiment. Jim was standing by the open door refusing to budge. Always the gentleman, we had learned that he would wait for us to go out the door first. Was he waiting for someone else to get out of the car? I walked around to the driver's side and got in. Then I clambered over the console and climbed out the passenger's side. Once I was out, he promptly walked away from the door. When we wanted to leave, I reversed my trip; I got in on the passenger side, climbed over the console and into the driver's seat.

That routine worked for a while. My climbing in the car first increased the odds of Jim's getting in the car; however, getting to any place on time or at all became increasingly difficult, and Jim wouldn't wait. If we were going to a restaurant, once he was in the car, I would call ahead to order food, so it would be ready and waiting on our table when we arrived. Sometimes the order became ‘take-out,' because he refused to leave the car.

When Jim held onto the seatbelt, we had to wait him out because his grip was powerful. So, too, when he grabbed our wrists; we were ‘handcuffed,' until he was willing to let go. Several times, when Sylvia, another dedicated member of the team who joined us a few months after Carrie, sat on the floor beside him, she would ask me to get his drink or dessert from the kitchen, because he had her in a wristlock which always seemed like “Don't touch me.”

One morning, he grabbed my wrists and held them for almost 45 minutes. The more I tried to extricate myself, the tighter he held them. I waited for Carrie to arrive. When she did, she distracted him and freed me.

Unlike some Alzheimer's victims, Jim didn't ‘sundown,' the term for increased confusion in the afternoon experienced by many dementia sufferers. In fact, he was more confused in the mornings. I used to think he was more agitated because he was still in a dream when he woke up. But what did I know?

One morning he hurried out of bed because he was frightened. I understood the words “murder,” “victim” and “water.”

Wondering about the cause of the distress was pointless. His morning confusion usually meant I was thrown out, grabbed, shoved, wrist-locked or “fired.”

One morning I saw Jim grab Carrie by the collar of her shirt and hold on; then he grabbed her hair and would not let go. Carrie was imperturbable. She extricated herself from his powerful grip and walked away. She waited a few minutes and then walked back into the bedroom. She smiled. He grinned and said, “Hi! Oh, it's you.”

Then, we found dear, dear Bertha, who came on the weekends. What a sweet person! While Bertha understood the illness, she had worked in nursing homes where the clock established the routine. But Jim was at home to give him flexibility, to give him a choice. Jim got up when he woke up. He ate when he wanted to and had a refrigerator stocked with his favorite foods. He could shower as often as he wanted. If he walked into the bathroom removing his clothes, no argument, he got his shower. He could go back to bed or take the spread off the bed and lay it by the sliding doors.

On Saturday mornings, Bertha looked heavenward if Jim said “Hi” to her, as if to say, “Thank you, we are going to have a good day.” No matter how damaged he was, he was still the boss. He seemed to need to be in control or tried to be in control of what little he could, and when he was upset, he tore sheets or blankets. Bertha was patient and understanding, but he could be a handful. Bertha was remarkable! She worked until the very day she couldn't work any longer.

When I went to Bertha's funeral, I was convinced that a Baptist funeral was the proper send-off – the singing, the wailing, and the agony, so different from Jackie Kennedy's appearing to hold in her emotions behind her black veil.

Jim was raised in Ireland as a Roman Catholic. He believed in God, but he didn't go to church, except as a visitor to the great cathedrals like Notre Dame, St Patrick's, Wells Cathedral or the Pro-Cathedral in Dublin.

Early in our relationship, Jim had said, “If I am dying, get me a priest.” That remark was a directive. Jim wasn't dying rapidly; he was dying slowly from a neurodegenerative disease. Occasionally he said, “I am an old man,” or “I am dying,” or “I don't want to die.” I remembered Jim's remark and thinking that it might alleviate some of his anxiety, I decided to talk to a priest.

Hilton Head had several Catholic churches, and the Director of the local Alzheimer's organization suggested I speak with Father McCaffrey. I mustered my courage, because I wasn't even sure how to make an appointment with a priest. I found the phone number, made the call, and, lo and behold, Father McCaffrey answered.

He said, “Can you come right over?” I said, “Yes,” and I did. I found him intimidating, but also charming and funny. I explained that Jim was demented, what he had said to me all those years ago and that he used words like “dying” and seemed frightened. Father McCaffrey said, “This is easy. Tell him you met a priest-educator who will come over to perform the Sacrament of the Sick.”

As I left his office, Father McCaffrey said, “May Yahweh bless you” and laughed uproariously.

I had no idea whether such a visit would serve any purpose, but I hoped on some level it might touch Jim, so I alerted Carrie to the upcoming visit. Carrie explained to Jim that a priest was coming. Bear in mind, we never knew what Jim understood, but on that day, Jim walked to the front door and locked it.

But later, when Father McCaffrey came, Jim sat in a chair while the priest got down on his arthritic knees, performed the sacrament and anointed Jim with oil. Jim must have understood something, because he repeated, “Thank you, Father. Thank you, Father.”

As I looked on and saw Jim's tremors increasing, I suggested to Father McCaffrey that Jim was becoming agitated and couldn't handle any more. Father McCaffrey wanted to give him Communion, but it was too much. Jim was done, so the priest left. Carrie had prepared a snack for Jim, which was sitting on a dish on the kitchen counter. He walked into the kitchen with her, looked at the lox and cream cheese sandwich, grinned and said, “Is this Communion?”

I went back to Father McCaffrey's office to thank him and to tell him the story of the lox and cream cheese – which he loved. He told me that Jim was entitled to a Mass and a Christian burial and gave me contacts for the two funeral homes on Hilton Head. When I asked about cremation, he explained that it was perfectly acceptable, but he admonished me, “Do not divvy up the ashes among nieces and nephews; body and soul are to be reunited in heaven, and all the parts should be together.” Even though we were having this dreadful conversation, Father McCaffrey kept it light, and once again when I left, he expressed his hope that Yahweh might bless me.

Father McCaffrey and Father Laughlin came back a few weeks later to give Jim Communion. Jim seemed bewildered, and I was concerned it was too much for him; I could only hope their visit helped.

After their visits, I visited a columbarium behind another Catholic church, but I couldn't imagine being buried with him in a Catholic cemetery. At the time I had become clinical and had distanced myself from the situation; there were no tears. I phoned one of the funeral directors whom Father McCaffrey had mentioned and drove out to meet him. He was a charming man who explained that much of his business was “shipping.” He said people ‘stop,' and it was his job to send their remains wherever they were supposed to go. He showed me a set of niches and told me to call him anytime, if I needed him.

I knew I didn't want to scatter Jim's ashes, although I had arranged for my father's to be strewn off Long Island. Dad was a New Yorker after all, but I regretted the idea that there was no place to imagine him – to think about him. I had the same problem with my mother. I didn't want her ashes in the ocean. A woman I knew said, “I want my ashes in the bunker near the 18th hole on the golf course because my family will always find me.”

That wit I no longer had. I needed to imagine Jim in a place I could visit or visualize. Until Father McCaffrey's admonition, I had thought about putting some of his ashes in the places that he loved, but I didn't. I bought a niche for him and one for me, and signed on the bottom line. I forgot that Medicaid allows you to keep enough money to pay for most burial arrangements. Once again, I had been profligate.

Almost euphoric for having done something, I called my daughter in Portland and said, “Hey, you owe me big time.” “Why?” she said. “I have just made our funeral arrangements.” All she said was, “Hilton Head?” I guess you can't win for losing. I hadn't thought about it. What I knew was that I had dealt with the inevitable. That night, I actually dreamt that I was in the niche looking out at the view; it was strange imagining my remains where I had ‘stopped.'

When Jim was unhappy with whoever was caring for him, he closed the door to the bedroom, moved furniture and then sat in his chair. But if he was with a smiling, patient, laughing person, like Carrie, he was relaxed and laughing too. But he fired everyone at some point or told them to “get out” or pushed them out the front door. Just in case, a neighbor made us a ‘pick,' so we could get in the bedroom, if Jim wanted no more of any of us and locked himself in.

After Bertha died, we had to find someone else to help on the weekends. Again we searched, tried and failed. But we had met Sylvia, and she eventually became available. She too was patient and attentive but not as familiar with the disease as Carrie, so at first when Jim called her a “liar,” she seemed to personalize his remarks as I had, but she learned quickly that it was pointless.