Dignifying Dementia (10 page)

That final summer of 2001 in Lenox was tragic. While we had made the drive north, it was only a matter of weeks after our arrival before Jim became profoundly confused. He didn't know he had a right to be in his own apartment, and occasionally he didn't know me. On some days he let me know I frightened him. Other days, he put his wallet, razor and glasses in a plastic bag and carried them with him all day. He was becoming ‘paranoid.'

Another day, we drove to a dermatologist. During the entire trip, Jim kept turning around to look in the back seat for the person he believed was sitting there and who was not. He was ‘hallucinating.'

He continued going to his appointments with the Professor, but he rarely spoke anymore. When the Professor asked him where he lived, Jim said, “Yonkers.” His body was suffering, too. He seemed more rigid and his tremor more pronounced.

Because of his increasing stiffness, I encouraged him to come with me to a gym to walk on a treadmill. He did a few times. I even tried to have him work with a personal trainer and to try some yoga. But he could not follow directions, so that was that.

One evening, before going to Tanglewood – which we still did – he asked me, “How will the ushers know which seats are ours? How will the ushers know our seats?” He repeated the questions over and over again. I didn't know how to talk to a confused man. He was anxious, and we had the ‘conversation' for over half an hour.

Once again I bought box seats for the final concert of the season, Beethoven's
Ninth
. I finally grasped the fact that our lives were changing irrevocably. What I knew for sure was that we weren't coming back North. I fought back tears, as I listened to the Boston Symphony and looked at Jim beside me.

I also realized that I could not make the drive back south alone with Jim in his current condition. I needed help. He was too agitated. I asked friends, but the timing wasn't convenient. Then my neighbor offered, but she needed to wait for a few weeks, and we were already seeing snow flurries, so I called a friend in Boston. I asked, “If I fly you back, would you drive south with us?” Maggie said, “Yes.”

We picked the day, packed and began the drive. For the first five hours, Jim was his old self, and I was feeling foolish about needing someone to come with us. We stopped for coffee along the New York State Thruway. Jim and Maggie actually chatted about politics – slowly, but they chatted. We climbed back in the car and drove on to Allentown where we stopped for lunch, but this time, when he got back in the car, he became fearful. “Where are we going? Call the police. Turn around. We are driving the wrong way.” He was panicked. He calmed down when Maggie reached between the seats and took hold of his hand.

I didn't know what to do.
Should I turn around? Should I go forward?
I gripped the wheel. I tried to talk to him rationally. I continued driving.
North or South? Lenox or Hilton Head? Small apartment or bigger apartment? Snow or sun?
I decided to drive to the sun, the warmth and the additional space.
Do I drive all night? Can I drive straight through? What will he do, if we stop?
I was scared.

The closer we got to Washington DC, the more agitated he became. He was waiting for “orders.” I wondered why. Could it have been because I had turned on the TV on September 11, and he had watched the towers collapse? That morning he had sat glued to the set with tears rolling down his cheeks. What had he understood? Now he seemed paranoid. Were the images still in his head? He used words like “power” and “control.” I couldn't understand. He spoke of “them.” I had no idea who “them” was. Maggie kept holding his hand.

We needed to stop, so we found a Cracker Barrel. What would he do? He got out of the car as calmly as you please. He went to the men's room on his own. We got a bite to eat. He was fine. Then we got back in the car to leave, and he stared at me and said, “You stole my money! What did you do with my money?”

Again Maggie held his hand and assured him that he was OK. At this point he made an introduction. He looked at me and said, “This is my wife.” He was introducing Maggie, as his wife, to me.

Maggie held his hand for the next several hundred miles. With my heart in my throat, we stopped for the night; once again, he climbed out of the car as if everything was fine. We went to the restaurant; he ordered a hamburger, and after dinner, we went to our rooms. I was afraid to be alone with him. Maggie was in the adjoining room and told me to phone her if I needed help. Jim climbed into bed in the strange room and fell asleep; I climbed into bed and stayed awake.

The next morning I was tired and ached from the tension. I drove to Hilton Head and parked outside our condo. Jim opened the car door, got out, went right upstairs to our apartment, took the key, unlocked the door, walked in and headed for the bathroom. He knew where he was. I, on the other hand, was exhausted. We never went north together again.

Now paranoid and delusional, Jim was also having spatial problems. He seemed to have difficulty differentiating between a hole, a dark space or a shadow on the floor; he urinated in the wastebasket rather than the toilet. He was increasingly and more frequently ‘paranoid.' Believing people were stealing from him, he hid his wallet, his glasses and his Ferragamo loafers. Later in his illness, he would still hide them, but in plain sight – on the floor at the foot of the bed.

By now we had another new internist. As compassionate and helpful as our previous one had been, Jim could not, and would not, sit in a waiting room for an hour and a half to see him. The new internist met Jim and recommended that we try Paxil for his anxiety. Once again, the Paxil made him more anxious and more paranoid. I assumed and hoped, like the doctors, that perhaps some small amount of some medication might help him, but one part of a tablet invariably told the whole story.

Because the Parkinsonism caused him problems with his movement and rigidity, I asked the internist for a referral for Jim to have some physical therapy, hoping that it might help, even though going to the gym had been a bust. Thankfully, the doctor did and also referred him for occupational therapy as well. That failed, but his meeting with the physical therapist was a resounding success.

His physical therapist, Denny, was a retired marine, and they hit it off instantly. We went to the Rehab Center three times a week. Denny gave Jim some simple exercises like walking on the treadmill or riding on a stationary bike for a few minutes. Denny was friendly, patient and persistent, and Jim was completely at ease. They also walked on uneven ground together to help him maintain his balance. Happily, I wrote a story for a Savannah paper about Denny's remarkable career change.

During the visit in which the new internist had written the prescription for Paxil and for rehab, with Jim within earshot, it was suggested that it was over and that I should put him away.

It's over? Put him away?
I still hear those words. Whatever “IT” was, “IT” wasn't over. I adored this man.
Over! For better or for worse, … in sickness and in health.
This man being talked about and apparently dismissed was my husband. “Put him away”? Well, that was another matter altogether, one that I hadn't thought about, and Jim had asked several times, “Do I need a home?”

That night and the next and the next, I thought about what had been said.
Was that something I should consider? Would Jim be better off in a facility? Would he get better care than I could give him at home? Would a nursing home be a safer environment for him? Would he be happier?

I was familiar with facilities like that. My dad had lived in a nursing home for years. My grandmother had lived in a retirement home, too, and I knew people with family in nursing homes. I dismissed with contempt the first part of the statement about it's being over. But I said to myself, maybe, maybe I should try ‘putting him away.'

The opportunity arose to try a facility when Jim went through another bad patch; he was so confused I had taken him to the local hospital again, thinking naïvely that trained medical professionals might help him better than I could. He was admitted. I could have stayed overnight with him, but I didn't know I had that option. Once he was settled in his room, I left him alone and went home. What was I thinking!

When I returned at 6:30 in the morning, a nurse said, “Mr. Tierney got out of bed and was walking around the corridors looking for his wife.” “Why didn't you call me?” I asked. They had no answer to that. The solution? They gave him Ativan for sleep. And they gave this confused, drug-sensitive, ambulatory dementia patient more than one dose. When I arrived, he was in bed – out cold. When he finally came out of his drugged state, he could barely sit up, much less stand, and, when he did, he managed to climb out of bed, moving like a drunk and promptly urinated on the floor.

This was the morning that the social workers from the different nursing homes and assisted-living facilities were scheduled to evaluate him. When they came into his room, what they saw was a helpless man who could barely stand; the assisted-living residences rejected him. In fact, only one skilled nursing home accepted him.

Because he was being discharged from a hospital directly to a nursing home, Medicare paid the charges. A courtesy van took us to the facility. Everyone was gracious. I was feeling hopeful. Maybe a ‘home' would be better for him. The administration understood we were ‘trying it out' for two weeks.

Jim was given a pretty room with a couch for me. I slept when Jim did, woke up quietly around 3:00 am, tiptoed out to go home, shower, change and return by 4:00. I selected his meals from a list of splendid choices. We were served at a long table in a private dining room where other patients ate as well – unaided. Jim only said, “Hello.”

But why did they wake him by turning on his lights at midnight to check on him? Why were breakfast, shift change and shower all scheduled for 7:00? The staff could only do so much, so I helped him shower, dress and go to the breakfast room by 7:00. I thought, “What is going to happen if I am not here to help?” Meanwhile, Jim kept saying, “I want to go back over the bridge.” True, I understood that he needed time to adjust, but what was I doing? How long could I keep driving back and forth in the middle of the night to be sure that he was showered, dressed and ready for breakfast? And, no surprise, the staff readily accepted my help.

For Jim to remain Medicare-eligible at the facility, he needed physical therapy, and he refused it. Quite simply, he would not participate, unless the “leader,” Denny, approved. Denny did not work at the nursing facility; he worked at the Rehab Center. Jim was adamant; the leader had to approve. Clearly, he wasn't going to meet Medicare's requirements.

During the week, a minister came into Jim's room, sat down on the sofa beside him and patted his hand. “You are a Catholic, aren't you?” he said. Jim looked down at the hand resting on his own, lifted the man's hand and removed it, then graciously said, “Excuse me, my wife and I are late to lunch.” Jim took my hand and walked me out of the room with the bewildered minister looking on.

Jim didn't meet Medicare's requirements at the time; he wanted to go home, and I was pooped. I had gone home as usual in the middle of the night, but this time, I had delayed my return until mid-afternoon. When I returned, Jim was packing and wanted to go back “over the bridge.” We went home. I had tried ‘putting him away' – for all of a week.

After our sojourn I was more determined to maintain Jim at home, to give him care and security and whatever modicum of joy I could. Being at home meant no schedules and no other residents. He could wake up when he wanted, take an hour to eat, or start a meal and finish it later. He could eat what I knew he liked – fish, seafood and more fish. He could shower when he was ready – once a day or twice – and have one-on-one care.