Finding the Strength to Say Goodbye

One morning in December 2009, my phone rang at 8:00 a.m., but I reached over and hit “view later” on the call setting. I hadn’t slept at all the night before, on a red eye back to Milwaukee from Los Angeles, and wanted to get more sleep. I had a bunch of “Nutcracker” rehearsals and performances coming up, as I was still a busy freelancing violinist.

Finally, I woke up enough to reach for my phone and check it for messages. There was one from my parents’ neighbor Dave. I listened, bolted out of bed, and dressed quickly. My return phone call left a message: I’m on my way.

I found my way to the Froedtert Hospital emergency room, and they told me where to go from there. Milwaukee has a huge medica#616057l complex – finding your way is challenging for any medical problem. I finally got to the stroke center, and my father’s room.

I walked in, greeted my mother and Dave, sat on the bed and looked directly into my eighty-nine year old dad’s eyes. There was a universe in his cornea, but no recognition as he stared directly back, searchingly, into my eyes. Dave described in detail what had happened: a fall at around 5 a.m., my mother’s phone call to him, the emergency team, the trip to the hospital. The doctors hadn’t given him any stroke medication, because they weren’t certain when the stroke had occurred, and knew he had a heart condition.

My mother sat crumpled in a chair. She was in the beginning stages of dementia, and was having a lot of trouble processing this latest development in her life. She looked small and defenseless.

My parents and I had had a lot of trouble communicating in the past several years. They had never really understood my marriage, and after my children were grown, dropped any pretense of approval. They just couldn’t let go of their disappointment in my adult choices, and I couldn’t bear defending them, over and over again. So I took a break from the constant judgment.

However, my dad had worked really hard at getting us all back together in the past year. He came over to my house and practically broke down the door, not meaning to be forceful, but trying to reconnect. He took every opportunity to tell me he loved me, and he encouraged my mom (who with her dementia wasn’t so sure about me) to embrace our relationship. He was so motivated, that in looking back, I wonder if that was the last thing he felt he really needed to do.

I sat with my mother for a while, and we talked about what to do. Mom thought she should sleep there at the hospital, so we ordered a cot. We talked to the nurses, we talked to the physical therapist, we talked to the guy who takes blood. All the while, my dad lay there, not talking, not responding. I walked my mom down to the nurses’ station, so she could see where it was. She was lost, that much was clear.

Hours passed. Where was the damn cot? We can’t tell you, the nurses’ station said. It’s first come, first serve. The cots get ordered, get used, need to be cleaned, then sent out again.

Well, I can’t leave my mother here with nowhere to sleep, I thought. She can’t stay alone at her house given her state of mind. My husband Larry was just ending one of his many trips to Vietnam, but would not be back for several days, so she could sleep in our bed. After waiting the entire day, my mother was exhausted. So, for the first of many nights, she came home with me.

~

The next day, Mom and I were sitting in my father’s room, and we talked about relatives who should be notified about his condition. My mother said she would need to call my Auntie Jean, who had died about a year before.

My father, without any hesitation, said, “Jean’s gone.”

My mother looked at him in surprise: “Really?”

He nodded. “Jean’s gone. Everyone’s gone.”

Mom looked at me. “I had forgotten that.”

The doctors, who traveled in teams of six, would arrive daily to check on Dad. Dr. Patel, Dr. Book, Dr. Binder (their obvious leader) and others. They would arrive en masse looking efficient and eager, and would ask Mom, me and my dad questions. (As Froedtert is a teaching hospital, those in training follow their instructors everywhere.)

Someone asked my father if he had any concerns, and he replied, “I’m concerned about being indicted for fraud.” He had not done his taxes for the previous year, due to his dementia, and this was at the forefront of his concerns. We all tried to suppress a surprised laugh at his response, but I knew he had struggled to get his taxes done, and somehow that worry had stayed with him.

There were physical therapists, language therapists, and an occupational therapist and psychologist. We met with a large group of them when my father was discharged to the sub-acute care center, which was intended to handle his rehabilitation. By then, he had had a second stroke, and was not making significant progress.

When he arrived at the sub-acute place, aka the Lutheran Home, he was checked in and then examined by another physical therapist. That day, my father was walking by himself; it was probably the last time I would see him do this. He did go for a walk with my son Aubrey the following day, and he tried to escape out of an unauthorized door, to the dismay of the staff. Several alarms apparently went off as Aubrey stood baffled as to how to keep his grandfather out of trouble.

My father started going downhill significantly from this point. He was obsessive about clothing – putting it on and taking it off – and made several attempts at escape. They put him on a concoction of drugs to ease his considerable anxiety, and the result was an almost comatose person who still tried to escape. He was much calmer when we, his family, were there, but we couldn’t be there all of the time.

Aubrey and our younger son Galen were home for the holidays, so we visited him one morning as a group. Dad had decided not to stay in his room, but went a couple of doors down and got into that bed. The staff seemed okay with this temporary change of quarters, and even brought his lunch tray to the new room. We stayed and kept him company while he ate his lunch of chicken, potatoes and carrots. He ate hungrily until the food was almost gone, then started burping. The burping changed to retching (he even said “Dammit”) and pretty soon, a lot of phlegm and food came up again.

My father stopped eating after that. My brother flew back into town, and we met with the staff for an update. The news was not encouraging. The staff said that Dad did not respond to any of their requests, and they took that to mean he didn’t understand what they were asking. They said his progress had stopped, and he was actually going backwards. They were going to recommend he be taken off the sub acute care, which meant an end to the Medicare support he had been getting.

This was a blow to all of us. We talked about it the next day in my father’s room, because we had seen him do things these people said he couldn’t do. For instance, they said any reflex reactions were basically gone. But when we had entered the room that morning, he had reached for his glasses and put them on. As we discussed this, I said that maybe he was not cooperating with the staff for a reason. My father, who we thought was dozing, suddenly jerked his head up, pointed his finger at me and nodded.

To my brother, the fact that my dad was still exhibiting some awareness meant we should continue to try and see if we could get another evaluation, and that meant trying to prolong his life in order to have that done. He flew back to New Jersey, but was determined to figure out why my father had stopped eating and reacting. After thinking about it, he called and said he thought we should have a neurologist brought in for a second opinion. Since Dad had stopped eating at this point, that would involve an external feeding tube to keep him alive. My sister Barb and I balked; that’s exactly what Dad specified he hadn’t wanted. We gently suggest this.

Rick, in his grief, was insistent. He called the Lutheran Home to arrange it. The nurse on duty took the matter in hand. After a brief discussion, she said,

“Your father isn’t dying because he’s not eating. He’s not eating because he’s dying.”

This statement finally made sense to Rick, and he willingly, though reluctantly, gave up the idea of prolonging a life that was over.

Hospice was ordered for Dad, in this case a team of two workers, a middle-aged woman and young man, and they came in on a Sunday morning to the center to meet with Mom and me. They were a godsend: compassionate, warm, knowledgeable, and with a welcome sense of gentle humor. They gave us some wise advice: don’t talk about something you don’t want your father to hear in front of him. They also told us what to expect at the very end, if we were there.

“Sometimes, the person chooses to die alone. Don’t take that personally.”

Before we left that day, there was something I wanted to do. I went into Dad’s room, where he lay, apparently asleep, on the bed. I sat down on the bed and took his hand.

“Daddy, if you need to go, I will take care of Mom. You don’t need to worry about her. I love you.”

There was no response from him. I drove Mom back to the house, where she and my cat Rosa took a nap on the sofa. Rosa had been her constant comfort since Mom had moved in with me, and now sat on Mom’s chest with her nose almost touching Mom’s.

A few hours later, the center called to say Dad had died. I went to tell Mom, and gather Aubrey and Galen for one last visit.