Ziskind.com > Writing > His Story: Morris L. Ziskind > Chapter Nine - His Final Year

His Story: Morris L. Ziskind

Chapter Nine - His Final Year

I started interviewing Dad January 4, 2000 when he was 85. His health was seriously declining. Normal pressure hydrocephalus (NPH), the illness that had plagued him for 11 years had taken a serious toll on his body. The triad of symptoms typical of this disease, in which fluid builds up on the brain, had overtaken him. He could not walk and could only stand for a few moments with a walker and assistance. He was incontinent. His cognitive functioning had seriously diminished, particularly his short-term memory. Only with a full time home health worker, Ann Tukei, six days a week, with others filling in on weekends, was it possible for him to live with Mom in their independent living apartment at Bedford Court, Silver Spring, Maryland, about a forty-minute drive from my home in Virginia. He probably suffered from depression as well.

Years ago he had rejected the only known treatment for NPH, the surgical insertion of a shunt from his brain to drain excess fluid. He felt the potential risk was too great as research then indicated the shunt only worked for a minority of patients. There was no other treatment so he no longer saw a doctor to monitor the progress of this disease. His distrust of doctors continued and I am not sure that he ever really accepted the diagnosis.

The family worried about his lack of interest and engagement with life and cajoled him to see a few doctors for treatment with mood disorder medications. Sometimes we felt he was in improved spirits under the influence of these medications, other times it was not so evident.

He spent his time sitting staring at the TV. When asked, he struggled to tell you what he was watching. When family or friends were around he sat passively listening, rarely participating in the conversation. Only reminiscing seemed to engage him. So, starting in January 2000, I decided to visit him weekly, at a time my mother was out of the apartment, to reminisce. I would tape record our conversations and later transcribe them into the story of his life. I hoped he would take interest in the project, read the transcriptions, and help edit them. While he seemed to enjoy my visits, to my knowledge he was never up to reading the transcriptions. He enjoyed having them read to him by my mother and Ann. I continued these weekly visits through May 2000. At that point other pressing family concerns dominated my time and my father's decreasing mental acuity made the interviews unproductive. When I asked him questions about his role as a parent, for example, after a few moments he would begin talking about himself as a child. He was unable to hold on to the time frame of the question. I was familiar enough with his life story at this point to realize what was happening. I think he was somewhat frustrated as well so I stopped formally interviewing him and just visited with him.

On August 7, 2000 we moved Dad to the nursing unit ostensibly for a two-week trial. My sisters and I felt meeting Dad's needs and demands was too draining on Mom who was recovering from recent surgery and was about to undergo radiation therapy. Ann was scheduled for a needed vacation. So the health care unit, which required a minimum two-week stay, seemed appropriate.

Dad did not adjust well. At one point he created such commotion that he was sent to the emergency room at Montgomery General Hospital until they could get him calm enough to return to the facility. He was moved to a private room in the nursing unit because his outbursts were disturbing his roommate. Dad would yell, in his still booming and intimidating voice, making demands and expressing his unhappiness at being in the nursing unit. We continued to provide a private home health care worker in an attempt to make him more comfortable, but with Ann on vacation Dad not seem comfortable with these women. He needed to be sedated to keep his outbursts from disturbing the other patients. His physical and emotional state further deteriorated as the sedation left him drugged. He sat in an uncomfortable looking, severely hunched over position. He seemed unaware of his awkward position, but because of it eye contact with him was impossible. Ann returned from her vacation, but when the two weeks were up he was no longer able to return to his independent living apartment.

Over time, with help from the nursing unit doctor, the nurses, and especially the soothing presence of Ann, Dad became more comfortable in the nursing unit. He no longer needed to be sedated. When his medications were finally appropriately adjusted he was able to sit up straight. He would listen when I came to visit but did not interact much. There were moments when his humor and sparkle returned but they were few and far between. At times he was lucid and would ask cogent and appropriate questions. Other times he was confused and uninvolved. We all felt guilt and doubt as to whether we had made the right decision to move Dad to the nursing unit. At one point Mom said in retrospect, we never should have taken him downstairs. "Dad was vibrant, strong, and, of course, stubborn. Now he is mashed potatoes."

In September we located a young neurologist whose office was in a nearby building so I could just wheel Dad over in the wheelchair. Trips via vehicle were now a major undertaking. We thought this doctor could advise us on appropriate medication so Dad would not be so heavily sedated. When the Dr. asked Dad why he was there, Dad indicated that I was the patient. His mind had retreated to the days of my youth when he and Mom would take me to the doctor. When questioned by the doctor Dad did not know the date or who the President was but attempted to cover for his lack of knowledge. "I'm retired so I don't need to know the date. What do you expect from a 90-year-old man?" The doctor provided a false ray of hope; however by our second visit it was clear the doctor had nothing to suggest.

Dad's appetite declined dramatically and he lost considerable weight, at one point weighing in the low 150's rather than his normal of 180 pounds. Then, when he was given an appetite stimulant, he was insatiable, eating everything in sight. Eventually his appetite and posture returned to the point where Mom could take him to the regular dining room (as opposed to the nursing unit dining room) where he would eat dinner with her and occasionally one or two Bedford Court friends. Mom kept the hospital bed we had rented for him to use in the apartment to make it easier for the aides to get him in and out of bed, but he never reached the point where he could return to their apartment.

On one of my visits in September I read to him from The Meadowlands, a book about the area in which we had lived in New Jersey. It was lunchtime and he was eating in his room rather than the dining room. He was not eating well so I teased him that I would only read to him if he ate. He seemed to enjoy my teasing and laughed. I commented that we had come full circle from the days of my childhood when Mom and Dad needed to urge me to eat. There he sat in his wheelchair with a large blue terrycloth bid, wearing adult diapers, toying with his food while I read to him and urged him to eat. Full circle indeed!

Apparently the sedentary elderly have problems with bowel functions in part because their digestive tract (the intestine) losses shape and resilience due to the lack of physical activity. Dad was no exception and many of my phone calls to Mom were concerned with Dad's bowel habits. So here in his declining days his children were concerned with his basic needs, just as he had been when we were children and dependent on him and Mom.

Thanksgiving was the first time in memory that Mom and Dad did not come to our house. Dad was not up to the trip, nor as we had learned the previous year, was our bathroom wheelchair accessible. A narrow room, there was simply no way to give him the assistance he needed in the bathroom. Mom decided her place was with him. The day after Thanksgiving I visited Mom and Dad with our two adult sons, Ben and Jeff. Dad was in great shape. He was alert, outgoing, and talked and joked with the boys. He still had his sense of humor and he looked great.

On December 14, 2000 Mom called to say Dad was in Montgomery General Hospital. He was having unexplained intestinal bleeding. Dad had no idea he was in the hospital. When I explained why he could not have anything to drink he understood and immediately forgot he was thirsty. In spite of it all Dad was concerned about me and asked me what I wanted to watch on the TV that was in his room. He was even-tempered and calm, even though he did not understand where he was and why.

I stayed for a few hours and felt rather guilty leaving him. Dad was asleep and the nurses were very gentle and effective. I hoped he would sleep through the night and all would be fine, but feared that if he waked and was disoriented and disruptive they might give him Haldol, a medication given to calm disruptive patients, which he had been given his last hospitalization. I feared if he needed to be sedated it might precipitate another decline in his health. However I decided to go home and take my chances.

Dad needed occasional sedation during his week stay at the hospital despite the fact that we had begun to provide around the clock coverage - Mom stayed with him during the days, I did the evening shift, and Ann stayed with him overnight. He would wake up disoriented and begin shouting and disturbing everyone on the hospital floor, as well as making his own recovery more unlikely.

After a few days of tests his hospital-appointed doctor, Dr. Ninala identified three concerns: his heart and the mild heart attack he had, gallstones (coincidentally the surgeon who did Mom's recent surgery was treating him with medication) and his unidentified G. I. Bleeding. His heart attack made any gastroenterological procedures to identify the cause of bleeding too stressful. He was too weak to do surgery on the gallstones. The plan was to keep him comfortable and stable and send him home to the nursing unit at Bedford Court, which occurred on December 21.

Unfortunately Dad was in terrible shape when he got back to Bedford Court. He was delirious, apparently from all the sedation, yelling at Ann, which always upset Mom. It was very difficult for Mom to accept him in his diminished state, particularly when he was delirious from all the sedation.

When I visited Dad during the first week of January, his doctor was concerned, as we were, that Dad was overmedicated. Dad was unresponsive, again sitting in that uncomfortable hunched over position that he had been in after being heavily sedated when he entered the nursing unit.

A Washington Post article about educated patients hiring private duty nurses when they go in the hospital, especially for surgery, prompted a discussion with Mom that if she or Dad once again needed to go to the hospital, we would be ready to provide around the clock care.

Unfortunately we would have to implement this plan too soon. On Wednesday January 17, 2001 at six P.M. Mom called me quite distraught. The nurse at Bedford Court had wanted to send Dad to the hospital the previous Monday, but Mom had resisted. Dad was being given oxygen at Bedford Court yet was still struggling to breathe. He had not slept for two nights and was agitated. I urged Mom to send him to the hospital.

Mom told me later that when the ambulance arrived to take him to the hospital, Dad told the driver, "This is it." Mom was not sure she heard Dad correctly but when she asked the driver; he would not confirm what Dad had said.

I arrived at the hospital after 7 as he was being checked in. The emergency room was overflowing but they soon evaluated him. Ann arrived in a couple of hours. Dad would periodically get agitated, shout "YO," and struggle to breathe. He said he wanted to get out of there. He would then settle down, breathe more calmly and doze off for a minute. Then the cycle would repeat.

Dad was admitted to the hospital. I had previously taken Mom back to her apartment. I returned to the hospital, took Ann back to Bedford Court as well, and returned again to the hospital and waited until Keller, Ann's friend, arrived to provide the overnight coverage for Dad.

When I left, he was sleeping. Those few minutes in the emergency room when Dad was awake and distressed would turn out to be the last time I would be with him when he was conscious. About 4 A.M. Thursday January 18, Keller reported he awoke and was quite loud and distressed. They gave him a sedative to quiet him and he slept.

I arrived at the hospital on Thursday about 7 PM to relieve Ann who had been with Dad all day. I would stay until Sarah, our night shift aide, came. Sarah and Keller would cover the night shifts. Mom would be free to come to the hospital when she wished, but ended up staying most of the day.

The hospital-appointed doctor again turned out to be Dr. Ninala. He generally did his rounds in the early evening so I felt lucky that I would be able to talk to him when I was doing my shift. Dr. Ninala told me that Dad had CHF (congestive heart failure) with fluid on his lungs. They were medicating/sedating him to keep him relaxed. They were monitoring his heart enzymes, as there were indications he had another heart attack. Dad had internal bleeding of undiagnosed origin but gallstones were a possible cause. Since his urine output was low, he was being monitored for renal problems. The doctors were not sure there were not other problems as well. Dad was getting morphine for pain and Respiratol sedation.

When I asked him directly, Dr. Ninala would not say Dad's situation was life threatening. He indicated it was not as serious as Dad's hospitalization a month earlier.

The past year we had struggled with Dad's medical care. His regular physician did not do hospital calls. We were left to accept whomever the hospital assigned. I was relieved to see the familiar, kindly face of Dr. Ninala, who seemed to care about Dad, was very patient, and took all the time I needed to answer my questions. The down side was that Dr. Ninala was not forthcoming. He was evasive and covered his answers with vagueness. At first that seem reasonable. Later on, however, even when asked specifically whether Dad was terminal and whether I should tell my sisters to come, he refused to answer directly.

I felt positively about the hospital. Many of the nurses recognized Dad from his previous visit and some even recognized me. Nevertheless, despite my confidence in the staff I had to keep telling myself that having another specialist opinion was pointless. Even if Dad survived this hospitalization, what would his future hold?

The night nurse, Mary Ellen, was very helpful. She spoke very highly of Ann's caring for Dad. Many sitters, the nurse said, just watch TV, read the paper, and press the buzzer when there was a need.

As Dad lay asleep and I talked to nurses, therapists, and doctors, I wondered whether Dad understood what we said as we talked about him? I decided to be more careful not to sound negative or gloomy about his prospects in his presence, even if he was sleeping. He was fighting for his life, even if his life was nothing like what it once was. However it was becoming clear that Dad was slowly dying. He was strong, both in will and body, but his body was failing. I thought that he would survive this hospitalization but be weakened even more.

When I arrived at the hospital late in the afternoon Friday January 19 Dad was resting peacefully, often with his mouth open, looking very much weaker and less vital than the night before.

At the prompting of Mom I asked the evening nurse, Mary Ellen, whether we should get a respiratory specialist for a second opinion. She offered that I should quiz Dr. Ninala as to what his expectations were. Dad was not getting medication or nutrition. Would he recover or were we just waiting for the inevitable?

When Dr. Ninala arrived for his evening hours, he agreed to put in a nasal feeding tube, which he said could be removed if Dad awoke. After a few days we could consider a gastric tube. Dad had apparently had another heart attack. When I asked the Doctor he told me Dad was not being sedated. He was asleep or in a coma - the distinction was unclear - because he was so sick. The morphine he was getting for pain would make him sleep but not continuously.

Mary Ellen said she doubted any gastroenterologist would do the surgery to put in a gastric tube, as Dad probably could not handle it. So we waited to see whether Dad would wake up.

While it appeared that nothing else could be done, Dr. Ninala definitely was not a proactive type and seemed to wait for me to make suggestions. I had been in constant contact with my sisters. I was relieved when they decided to come to Maryland, which would give Mom and me someone to share the responsibility of knowing the questions to ask and making any necessary decisions.

Friday January 19 saw no significant change. Dad's color was a bit better and his breathing a bit calmer. He moved his arms a little and opened his eyes, but did not see. When I asked Dr. Ninala directly whether Dad was terminal, he was evasive. On the other hand, the respiratory therapist said Dad was doing "Cheyne-Stokes" breathing, with intermittent stopping of breathing followed by short periods of fast breathing. He said the normal course of events was for the length of the stoppages to increase until the patient eventually stopped breathing. The hospital staff knew Dad did not want to be resuscitated.

My sister Carrie arrived mid afternoon on Saturday January 20. The gastroenterologist told Carrie Dad had a few more days. Now we "officially" knew. We began to discuss moving Dad to Hospice or bringing him home to Bedford Court to die. Jan and Charl arrived Sunday January 21. We took turns in the crowded hospital room. Dad looked good, but of course was still unconscious.

We made arrangements to bring Dad back to Bedford Court the next day, Monday. A nurse told Jan that he might not survive the night. None of our regular aides were available so a new aide was to spend the night with him. I worried that he might regain consciousness only to see a stranger after all the days of twenty-four hour coverage by those who knew him.

Dad remained unconscious through the night, only to die Monday January 22, 2001 about 10:53 AM. He never regained consciousness after that first night in the hospital. Mom was with him at the end, holding and caressing his face.

Next: Chapter Ten - A Son's View of His Father | Index