Dad's transfer from North Fulton Hospital to Emory Geriatric Center's Budd Terrace left Mom emotionally stranded. Her need to be with him, to protect him from harm, fueled a constant worry about how to get rides to and from the hospital and what she might find when she got there.
The 45-minute drive to Budd Terrace was far outside the range of Chambrel's transportation service, and although there was an extra-fee option in case of emergency, Chambrel could not spare a vehicle for three hours a day to drop Mom off at Budd Terrace every morning and pick her up every evening, which is what she wanted. Both my brothers worked. At that time, Jim had a three-hour daily commute into the city, and Tim was managing a project in Florida.
There was no public transportation accessible from Chambrel, and no taxi service in the area. Limosines were prohibitively expensive, and staying in a hotel indefinitely, with the cost of meals and twice-daily taxi service, on top of paying for the cottage and the house, was out of the question.
Still, Mom insisted she had to be with Dad all day, every day. My brothers and I did all we could, but some days we failed to do what was needed. Our conversations were filled with frustration and guilt.
I thought my arrival in Atlanta would help. Even though I could not drive Mom back and forth to Budd Terrace for medical reasons of my own, I could arrange transportation every day, or at least explain why it was not possible. And, I could comfort Mom and figure out what my brothers and I needed to do next. That was the plan. But by the time I arrived, Mom was so stressed about the situation, nothing I did seemed useful to her. "I can do that myself," she would say. Or, "I'm used to doing things myself." She had slipped behind the wall that so often separated her and Dad from me and my brothers, and from the rest of the world. She needed help, but all our efforts seemed to count for nothing - unless we could reunite her with Dad, Mom would have no peace.
The first time I visited Budd Terrace, Dad was sitting in a wheelchair parked in a large common room with a few other patients, most in wheelchairs, and a handful of guests like Mom and me, standing around looking uncomfortable. There were several rectangular wood tables in the area and a few heavy, mismatched wooden chairs. All the furniture was sticky to the touch. The paint and linoleum were dingy and institutional. The air smelled of urine mixed with disinfectant.
An L-shaped counter in the corner of the room furtherest from the tables and chairs, marked the nurses' station. Most of the time, no nurses were visible; they gathered inside a small office behind the counter, out of sight of patients and guests, unless someone walked up to the counter or called out for help from the main room.
I found Dad slumped over in his wheelchair. His trousers were stained and several sizes too large. A button was missing from his shirt. He had lost weight. His skin tone was gray. Medications had deadened his spirit. When he finally lifted his head and opened his eyes to look at me, I hardly recognized him, nor him me. Mom was right to be worried.
When I asked which drugs Dad was getting, a nurse said Seroquel and Ativan along with his heart medication. I looked up both drugs and voiced concerns about the use of Seroquel. I thought it might be the cause of his twitching, which I had never seen before. Eventually, at the family's insistance, staff stopped giving him Seroquel. The doctor ordered Risperdal instead. The twitching stopped, but Dad's agitation increased.
I asked about the progress of his hip rehabilitation. A nurse said they had been taking him to physical therapy, but he was always asleep during the appointments - someone would wheel him upstairs, leave him in the hallway sleeping in his wheelchair, then bring him back after the appointment - so he was making no progress. The whole reason for being there was to get physical therapy. "Couldn't they schedule him at a different time of day?" I asked. The nurse didn't know.
When Dad was awake, he always tried to get out of his wheelchair and walk. Attendants would tell him to sit down, over and over. When he refused, they would take his arm and push him back into the wheelchair, repeating, "Sit down." The nurse told me it wasn't safe for him to stand, so I did what the attendants did, not knowing what else to do. "Sit down, Dad." Sometimes he would grab my arm and dig his nails into my skin. One of the nurses, who had always been arrogant when I asked questions, seemed to enjoy my anxious reaction. She would watch me struggle to calm Dad and smile disingenuously. "Oh, do you need help?"
None of the staff welcomed visitors. My questions were always treated like interruptions in a daily routine that ran like a closed system.
Spending hours on end at Budd Terrace, I came to know most of the patients on Dad's floor. I best remember a small, silent woman who spent each day sitting and watching for her friend. Her hair was never combed; her dressing gown was hospital issue. Her body made a fragile C-shape in the too-large wooden chairs. She seemed to recognize me sometimes, but when I spoke to her she never responded. Her eyes were unchanging - soulful and sweet. I felt as if she were seeing everything from a distance or through a veil of thoughts she would never articulate. Her friend was a stooped, elderly woman with long grey hair. She would enter the common room from one of the adjacent halls, touching the walls to guide her way. The younger woman would get up and take her blind friend by the hand. Then, the two of them would walk the halls together, staying close to the walls, whispering to each other. Their friendship was the only comforting sight I saw in that strange, cold place where time stood still.
During the first week of my visits, Mom introduced me to a wheelchair patient, a lady about my age who had broken her ankle and was in for rehabilitation - like Dad. The lady's children worked, and could only visit in the evenings. But rather than leave their mother unattended, the children had hired a companion to stay by her side 24 hours a day, like a bodyguard, to be sure she got what she needed. The lady had nothing good to say about the care at Budd Terrace. If she depended on the nurses, she believed she would never get well. We briefly considered hiring a companion for Dad, but at a minimum of $360.00 a day for a "sitter," it was not possible.
Most of the patients were asleep in their wheelchairs during my visits, no matter what time of day. Mom would wake Dad up as best she could and wheel him around, talking to him, trying to keep him alert to his surroundings. But, it was difficult. He was always groggy, and seldom spoke except to say, "no." His overall health and ability to communicate had declined so much and so quickly, I couldn't figure out what to do next. The situation seemed hopeless.
Attendants sometimes dressed Dad in other people's clothes and once tried to give him another patient's dentures. They lost his hearing aid; it was never found. We knew Dad was getting no physical therapy, and his medication doses were increasing, because his agitation was increasing. The weight loss continued. He was dying in front of our eyes.
One afternoon when Mom and I were at Chambrel, we received an emergency call from Budd Terrace. Dad had been rocking his wheelchair from side to side. It had turned over on him. The caller said he was bruised, but otherwise uninjured. Mom was impossible to calm. She insisted we get to Budd Terrace right away. I tried everyone and everything I could to get a ride or a car, but I failed. Finally, I called Jim as a last resort, knowing how difficult it would be for him to help, but having exhausted every other possibility. I told him Mom was a wreck, but he said "no." When I insisted, he hung up on me. We didn't speak again for two years.
Mom didn't get to Budd Terrace that night. The next day during our visit, I asked to see the head nurse to discuss Dad's condition. She calmly explained that Dad had Alzheimer's, and that he, like others with the disease, suffered from episodes of "sundowning," which accounted for his agitation. It was the fault of the disease, not the medication. She said he would not get better and that I would have to find a way to accept his condition.
I researched Alzheimer's, Seroquel, Risperdal, Ativan, Budd Terrace, hip replacements, brain damage, dementia - everything - anything that might help me understand what was happening to Dad. I did not accept the nurse's bleak outlook.
One thing was certain. We had to get Dad out of Budd Terrace, or he would be dead soon.