Dignifying Dementia (16 page)

One day he whispered to me that Sylvia was a “thief,” and I should “fire” her. We didn't.

By the way, Jim never learned names: Sylvia was Mylvia, Jennifer or Mary; Carrie was Marrie for a while, I was Sean.

Often, after Carrie had given him a shower, he would say, “Oh, it's you,” or when I walked back into the room, he sometimes welled up with tears and uttered a full sentence, “I didn't think you were coming back” – whoever I was. At times, Sylvia-Mylvia couldn't extricate her hand at the end of her shift, and Jim would say, “Don't go.” But, although certainly less frequently than with our first helpers, there were occasional notes in the log indicating that Jim wouldn't cough because he said, ‘The French don't cough', or ‘He slipped because he didn't want to bend his legs.'

One Saturday morning, when Jim had reacted particularly badly after trying a dose of Seroquel, I think, now contraindicated for victims of dementia, he threatened to kill me. I called to speak to our neurologist, and the physician covering for him suggested we consider trying a special unit at a teaching hospital. I had never heard of it. He went on to explain that it had been created by a neurologist who had specialized in dementias. He had developed the unit to help determine which medications worked with individuals suffering from the disease.
Was there still hope? Had we forgotten to try something? Would something help?

So, on Monday, I phoned our neurologist to ask his opinion. He said, “It can't hurt. Nothing else seems to be working.” I called the unit and explained Jim's behavior to the social worker in charge. He told me that Jim would stay about a week to give the staff an opportunity to evaluate him and to determine what might work. I didn't like the idea of leaving him in a strange place at all, much less for a week, but our neurologist had suggested it might help, so I decided to try.

I desperately wanted to believe that the physicians in the unit could help, but I should have trusted my instincts. I had shopped for physicians but hadn't learned to ask for second and third opinions. I had absolute trust in physicians' knowledge of illnesses and medications, and despite their occasional interpersonal and communications skills believed they were careful and had taken an oath to do no harm. I was my father's and grandfather's daughter and granddaughter after all. And my Dad's conservative first prescription for almost anything illness-related was invariably, “Take an aspirin and take a shower.”

At the breakfast table, I explained to Jim that we were trying something new because the neurologist thought it might help his Parkinson's. Saying “Parkinson's” was better than “cancer of the brain.” Jim looked at me and said, “Thank you.” I cannot forget the gentleness of that thank you. In fact, nothing anyone has said from that day to this has helped me forgive myself for leaving him at the unit; every day that I looked at Jim afterwards, I was heartsick.

Carrie and I labeled his clothes; we packed and drove, stopped at a Subway restaurant for lunch on the way and arrived at the hospital. The intake process included an interview. Because the questioning bewildered him, and he was unable to participate, Carrie took Jim for a walk.

I answered their questions, explained his behavior, his probable diagnosis of Lewy Body Dementia and emphasized his drug sensitivity. I figured they knew all that; they had the records, and they were physicians after all – at a teaching hospital.

After the meeting, we unpacked Jim's few things, put them in the dresser and bathroom of the twin-bedded room he would share with another man. Jim was wild-eyed when we left, and Carrie and I returned unhappily to Hilton Head. She made it clear that she wasn't happy I had taken him there. The facility was beige, cold, antiseptic, dimly-lit and decorated in metal and linoleum. For me, the physical appearance was reminiscent of
One Flew Over the Cuckoo's Nest
.

That night I called to find out how he was and to ask for their fax number, because I had typed up a sheet describing Jim's personality and his likes and dislikes. They had given me his patient number, so the next two nights, when I couldn't sleep and called to find out how Jim was doing, they told me what percentage of his food he had eaten and that he had participated in some “pine cone” activity. I was amazed. I felt hopeful. They told me I could visit him on the weekend. I brought him a crabmeat sandwich from Subway. When I arrived, Jim knew me and introduced me as his “wife.”

But, on my next visit, all was not well; he looked awful. He was bent over and drooling profusely. One of the staff members told me that there had been some kind of altercation between Jim and his roommate. The other man was wearing Jim's belt, and Jim's glasses were missing. We found his glasses in the other man's pocket. The staff assured me that they were making headway but that Jim had been combative. I thought, “Take a demented man and put him in unfamiliar, clinical surroundings with strangers and have him lose his possessions, what did they expect?”

BUT I left him there. I called the neurologist and asked if he might stop by to see him. He did. Carrie drove up to see him. “I am a mess,” he told her. I wanted him out.

On Thursday when I drove up to bring him home, Jim didn't greet me at the door; instead, he was sitting on a sofa all bent over. He was lethargic and wearing his hat. A social worker and a psychiatrist met with me and told me that they needed to keep him a few more days. I didn't know what to do. I told them he looked awful. They said he looked like that when he was admitted. I said, “No, he didn't.” Apparently I was co-dependent and in denial. Feeling desperately alone and overwhelmed and not possessing the science of a physician, I agreed to a compromise and let him stay one more night.

On my first visit, they had pulled him away from the door; now he was compliant and complacent. On the drive back, I phoned the pharmacist and asked about the two drugs that Jim had been given: Haldol and Zyprexa, both antipsychotics. “Are they titrating the dosage too quickly?” she asked. I asked her the meaning of “titrate.” “Trying to find the optimal dosage,” she said.

When I got home, I phoned the psychiatric social worker we had met in Lenox. She said, “Let me do some research.” I called the psychiatrist I had begun seeing. Both of them assured me that Jim would sleep it off and be OK in the morning. I slept fitfully. No one I asked seemed to know the effect of antipsychotics on Lewy Body Dementia patients; it didn't matter; the damage had already been done.

The next morning, when I was in my psychiatrist's office, he took a call from the social worker at the unit. He said, “Jim is being admitted to the Acute Care Unit (ACU) at the hospital. He is dehydrated, running a fever and rigid.” I tore out of the office, drove too fast and arrived as an ambulance was leaving to take Jim to the hospital. When I saw him in the back of the ambulance, I was relieved to see that smile and that his eyes were clear, but all was not well.

When Jim was admitted to the ACU, a charming, red-headed nurse with an Irish lilt greeted him, and Jim looked happy. He was given Amantadine, to attempt to alleviate some of the rigidity that had occurred as a result of giving him antipsychotics, and he was being treated for possible Neuroleptic-malignant Syndrome (NMS), a life-threatening disorder that can be caused by reactions to those types of medications. Jim was treated and survived. He remained in the hospital over the weekend, while I slept in a recliner by his bed. I left him only to buy sandwiches, toiletries and smoothies.

But now he could not walk unassisted; he needed to lean on the tray table when the aides and nurses moved him across the room.

When I went back to the unit to collect Jim's clothes, a nurse did ask, “How is Mr. Tierney?” “He's alive,” I snarled. By then, I had learned that had he not been treated so quickly, he might not have been.

Our neurologist visited Jim in the ACU, assuring me that the physician handling Jim's case was excellent. When Jim was discharged, he was wheeled out of the hospital with a 6” neck brace and orders for a walker. He wore the brace once – on the drive home. The physical therapist had stuffed a washcloth over the front edge of the brace to absorb the drool. Would it have been kinder if Jim had died that day? He had so little happiness in his life, and what little joy he had was taken away from him with his head bent over at close to a right angle.

Once we were home, I felt sick whenever I looked at Jim with his head bent like that. The man with those gorgeous blue eyes could no longer lift his head. The man who had walked erect, who had delighted in looking at the water, at the horizon, at dolphins leaping 30 feet from shore, the man who selected a condo that looked out at the intracoastal waterway, could no longer sit on the porch and see the view. The man who loved to walk, even in his demented state, had rigid legs and an even more inflexible body. The man who had slid into a bench at a Subway restaurant could no longer make that simple maneuver. He had more difficulty getting in and out of a car or a chair and in and out of a shower.

The once fastidious man now dripped food on his clothes. The first day he dropped coleslaw on his shirt was the last time he ate it. The man who still enjoyed eating broiled fish with a fork at a restaurant needed to eat finger food like fried scallops or calamari. If the food fell on his lap, dinner was over. He would get up from his chair and leave. Unable to tilt his head back, he could no longer drink from a cup or a glass. He needed a straw. He couldn't watch television. He was harder to shave. He developed irritations under his neck. He was unable to see out the windshield of the car or where he was walking.

Not too long after, we were outside strolling a bit and met someone we knew. Jim couldn't lift his head. I almost wept when he said to her, “Nice shoes.”

He hurt. Only when he lay down did gravity allow his head to fall back. After a night's sleep, when he sat up, his head was up, and he could look you in the eye, but not for long. His head would begin to droop within a minute or so. At first we encouraged him to lie down on the sofa during the day to give his neck a rest. We gave him one-quarter of the lowest dose of Vioxx or baby Tylenol for the discomfort. We tried massage. We tried acupuncture. We tried physical therapy; the therapists recommended neck braces, but the collars frightened him, and the braces they offered were either too confining or too narrow to be of any use. And, of course, when a therapist came too near him, he yelled “Help, police.”

One day when he was lying on the sofa, I said again, “I am so sorry about your neck.” He looked at me and said clearly, “Sue the bastards.”

With his head bent the way it was, he could see every spot on the carpet. One day I called to check in. Sylvia said with a laugh, “I can't talk now. Jim has me cleaning the floor.” He saw every shadow or crumb. For anyone to talk to him, we either had to bend over or kneel down and look up at his face. If you stood next to him, with his head bent the way it was, he couldn't see who you were and frequently lashed out with his fists. Was this faceless body a potential threat?

Our neurologist tried different medications to undo the damage, but Jim couldn't handle medications. Any dose high enough to help might have created problems because of his drug sensitivity. Then our neurologist tried Botox injections into Jim's neck muscles. I prayed. I hoped. It was a dreadful procedure. Jim didn't understand what was happening and became frightened. The result of the injection? Nothing. Not true, his head sagged even more until the Botox wore off. In essence, Jim was never able to lift his head and was more rigid for the remainder of his life. What we could do was try to make him comfortable.