You see, my father was a narcissist. He was intelligent. He was a man of science. In his mind, he was the greatest human who ever lived. And he was not afraid to disparage anybody who would suggest otherwise — especially his own family. My wife loves to watch the show The Big Bang Theory. I can tolerate it a bit, but not back-to-back-to-back episodes as she can. You see, Dr. Sheldon Cooper has the personality of my father. I see so much of my father in that character that I cannot watch it for very long. I do not find his antics amusing at all. If Dad had not been my Dad, I would have left years before I did. Sheldon Cooper and I would never have been friends.
My father disparaged me like Sheldon Cooper disparages Howard for not having his doctoral degree, or Leonard’s mother disparages Leonard for his adolescent quirks during his formative years.
But, still, Dad was my father. And I loved him and miss him greatly. But I am also angry at him. He made Mom’s life miserable for many years. He could not be bothered to be at her bedside when she died. It was not about him, so he did not care. His dementia-addled brain conjured up an imaginary murder of Mom and made it the primary topic of conversation every time I visited him, all Summer long.
We affectionately refer to Mom as St. Barb for all the crap that she had to put up with, without kicking him out of the house. I wanted to be able to grieve for Mom, but I could not. I was exhausted from taking care of a man who didn’t believe he needed my help, who put me down constantly, who was constantly angry that someone had killed his wife of 66 years and he could not even convince his only son and his only daughter that her murderer needed to be found and brought to justice.
Dad never studied religion. He had never read the bible. He had never looked up “death” or “dying”. He had no idea what was coming. My sister prayed that he was not going to Hell for how he treated us and especially Mom. Even I offered up a prayer or two. For all his faults, he had never beaten us; he had never sexually molested us; he had never left us to starve or locked us in a closet. He was not violent. He was just misguided, and we blame his mother for that. His mother treated his father just as Dad treated Mom. And Dad was an only child. No surprise there.
Hallucinations
If you search the Internet for death and dying; for signs to watch for; for symptoms, etc., you will quickly come across the subject of hallucinations. So, before I launch back into my story, I want to talk about hallucinations for a moment.
Hallucinations are sensations that appear real but are created in the mind. Experts in death and dying tell us that patients experience hallucinations in the hours and days leading up to death. What those experts are actually saying, is that the patient experiences something that the experts, themselves, cannot see or hear.
The “experts” have no way of determining that what the dying patient sees, is not happening. Instead, they choose to call them hallucinations and proclaim that they are not real. But they could not possibly know whether the experiences were real or not.
The “experts”, in their search for facts, could even hook up electrodes to the patient that could detect chemical changes in the patients’ brains during a hallucination. Unfortunately, no matter how thoroughly they research the subject, they cannot be certain that the trigger, for those chemical changes in the brain, was not external stimuli. In other words, it is certainly possible that what the experts call hallucinations, are just a misunderstood mechanism that allows the dying patient to talk to God.
Hallucinations can be streaks of color, or a confusing mess of something that a patient cannot make sense of, or something that they clearly understand and recognize. To clearly understand and recognize a hallucination, a person needs to understand what they are seeing.
Wednesday, August 28th
Dad’s first hallucination was on Wednesday. I had been out of his bedroom talking to my sister on the phone. It was after I had heard his death rattle. He was awake and lucid; I suspect that he had been to the bathroom. I walked into his bedroom and he turned to look at me. Then he turned back to the wall beside his bed and said to me:
Dad: “Where’d all the people go?”
I responded: “Dad, what people?”
Dad: “There, beside the bed. There was a whole row of people sitting there. They were talking among themselves and looking in my direction and pointing. Now they’re all gone.”
Me: “Dad, did you know any of them?”
Dad: “No.”
Me: “How would they have gotten into your bedroom? I have been in the house this whole time. And where would they have gone? How would they have gotten out?”
Dad: “I don’t know. It is the damnedest thing. I know it sounds crazy. But they were there. I swear.”
The experts say that dying patients often see hallucinations of loved ones before they die. But Dad did not know them. And even though he had bad cataracts, he could see them clearly, which is suggestive of something being made up by his mind. So far, I am not swayed. This by itself is not going to make me change or ignite an epiphany of faith.
I told Dad that my sister was coming. She would be there Thursday night (Friday morning) at about 1 am. We talked for a bit. He tried to drink a few things, but everything kept coming back up. After a bit, he was exhausted, so he went back to sleep.
Thursday, August 29th
All-day, Dad would wake up, try to drink a bit, try to go to the bathroom, and then ask if my sister was there yet. He was waiting for her. He struggled to get to the bathroom repeatedly. I saved his life 3 times in 5 minutes when I caught him as he fell as he tried to walk back to bed after going to the bathroom. He screamed at me for helping him. He insisted that he could do it on his own. By the end of the day, he was so weak that every trip to the bathroom was followed by a nap before he could return to bed. He would fall asleep on the toilet, or sitting in a chair, or on the foot of the bed, halfway back to bed and sleep for up to an hour before completing the 10 to 15-foot walk back to bed.
Friday, August 30th, 1:00 am
My sister and her husband arrived from Colorado. Dad woke up and was very animated as he talked with my sister. He told her that he loved her. He told her that he loved me. He never told me that, though. Knowing him as I did, I guess that would have to be enough. We all sat with him and talked until he had no more strength.
After a couple of hours, we tucked him in and then positioned ourselves so he could not get out of bed without our knowledge.
Around 4:30 am, he was grabbing his penis and squeezing it, like a little boy who must pee very bad. After watching for a bit, I realized that he had to go to the bathroom but lacked the energy to get out of bed. I grabbed an empty half-gallon milk jug from the trash, rinsed it out thoroughly, cut out the top and fabricated a urinal out of it. I taped all the openings so it would not cut him. I took it to him and pushed it into his hands and told him what it was. He used it properly but was only able to produce a small drop of urine after about 30 minutes of trying.
My sister sat with him for the rest of the night and I went to my bed.
8:00 am
I got up and went in to check on Dad. He was awake and animated. He was talking about the journey that he was going to be taking. He pointed southeast and said he was going that way, and up. He repeated it. Again. And again. And again. He grabbed his flashlight and tried fervently to get somebody’s attention until they had passed. Then he would settle down. And a few minutes later, he would stop talking to us and try again to get somebody’s attention. Repeatedly he did this, for about 4 hours, until he was too tired to keep trying. He asked us for some water, but he put it down without attempting to drink anything, and he never asked for it again.
Dad was talking about going on a journey. He was dying. And for the first time in his life, he saw death as a journey, not an end.
So what I want to know is this: if dying is actually a journey, not an end, and Dad never had faith, and never studied religion or spirituality, and disparaged anybody who had faith, and now Dad was talking about going on this same journey…………….
Who Told Him?
If what he was seeing was just a hallucination, then I want to know: who told him that death was a journey? Who told him that he was dying? Who told him to let go?
I believe that what Dad was seeing was real. I do not believe it was something conjured up by his dementia-addled, starving, brain. Somebody, or something, told him he was going on a journey. He did not tell them they were wrong. He believed them. He was awake and lucid with us while he was telling us about the trip he was going on. “I’m going that way (he’d point too) and up (and he’d point at the ceiling with his flashlight.) He would wrench his head and neck to look up at the a spot on the ceiling, like he was peering into a void a few feet from and above his bed. It was not a hallucination. He was seeing something that we could not see, and he was attempting to interact with what he saw. He was smiling. It was the last time I would see him smile. And it was the first time I had seen him smile in weeks.
I could believe that he was just having a hallucination, an imaginary dream while he was awake if it weren’t for the fact that he was talking about the same things that people of faith talk about when they’re dying. We did not tell him about that. And nobody else was there that could have. That means that what he was seeing was actually happening. And even with his dementia, he understood it.
This is one of the things that has helped me to find some faith. But this by itself was not the only thing. One more magical moment was yet to come.
Most of the rest of Friday, August 30th was spent with him being agitated and awake. His breathing changed to a very fast, very shallow breathing pattern. I tried to match his breathing but got so light-headed that I had to sit down. He was practically panting. It seemed to me that he was very anxious or, perhaps, scared.
When we would sit with him, and hold his hand, and talk with him, his breathing would settle down. He would try to talk, but his mouth was so dry that he could not. After a while, his anxiety would return, and he would be back to panting.
Saturday, August 31st
By Saturday, he could no longer talk. His tongue was stuck to the bottom of his mouth. He could only make noise from the back of his throat. It was not discernible as speech, but through his motions, he was able to make us understand. We repeatedly told him that we loved him, and it was time for him to go be with Mom. He would squeeze our hands when we were there. Or pat our hands with his other hand as he always did with my sister when he was trying to comfort her.
Saturday was a very long day. My sister drew the short straw after he had his first bowel movement in the bed. She cut his underwear off from him and threw them away, and then cleaned him up. Dad gave her the dirtiest of looks after that. So, the next time, it was my turn. He was not happy with me either. I talked to him directly into his ear to be sure he heard me:
“Dad, you cleaned my ass when I was a baby when I couldn’t do it for myself. Now it’s my turn to take care of you because you cannot do it yourself.”
After that, he did not react negatively to me cleaning him up. He needed to be cleaned every 7 to 10 hours. Maybe he lacked the strength to show contempt. Maybe somebody on the other side told him to play nice. He had not had any solid food in 11 days. I was amazed that he even had to go at all.
Sunday, September 1st
At this point, a patient under the care of hospice has been given morphine to settle them down. Without hospice Dad is flailing around on the bed. He no longer grunts or makes any kind of sound. His eyes are glazed over — probably from being so dry. I changed the battery in his hearing aid and put it back in his ear. We thought that maybe he would be able to hear us. He was still panting. He was breathing exceedingly fast and shallow.
During most of Sunday, he was comatose. We had learned that if we squeezed his hand and he squeezed it back, he was conscious. If his arms and/or legs were moving around and he did not squeeze our hand, then he was unconscious. And if his arms and legs were still and he did not squeeze our hand, then he was probably in a coma. He spent most of the day on Sunday panting hard but comatose.
Our friends, the housekeeper and her husband stopped by in the afternoon. Her husband is a minister. He conducted Mom’s burial service. I asked him to say a prayer for Dad. I was barely able to contain my tears as he spoke.
In the late afternoon, we could see Dad’s body shutting down. His feet and toes turned black. He completely lost control of his bowels and they drained for more than a half-hour. Finally, we cleaned him up again and put a diaper on him. We knew we were getting close to the end. We did not think he had the energy to keep breathing so hard and fast.
My brother-in-law went to Wendy’s to get us some dinner. When he returned, we checked on Dad, before heading out into the kitchen to eat. We went in and squeezed Dad’s hands. He barely squeezed them back. We talked to him. We told him we loved him. We told him that we would be okay. We told him that Mom was waiting for him.
Pleading
And then something weird happened. By this point, his hand squeezes were barely noticeable. His energy was gone. But suddenly, he raised his hands high above his body. One hand searched for the other hand, and then carefully he interlocked his fingers. Once his fingers were interlocked, he raised his arms high above himself and pumped them up and down a dozen times. From our vantage point, it looked like he was pleading with someone. That is not something that I had ever seen Dad do before in his life. He would never have pleaded. He believed he was always right. It was always his way or the highway. Pleading was completely out of character for him. We were not touching him when he did this. We do not believe he knew we were there with him. Then, slowly, his hands, with the fingers still interlocked, settled back down across his chest. And we wandered out into the kitchen to eat some dinner.
My sister went back to check on him after a couple of minutes.
She called me: “You better get in here. Something has changed.”