End Of Life Trauma – Starting At The End
October 2021
I will start off with the end and then take you through the process of how we got here. My wife of 36 years passed away on July 14, 2021. Yeah, we had our spats like all married couples did, but she was quite literally the love of my life.
She was also the foundation for me dealing with the hearing world and coping with being an Aspie. I am just not sure if she is replaceable in that area? Her advice to me toward the end was to “chill out and be patient”. I will try to heed her words every day.
This In-Depth report will tell you about a very traumatic two-and-a-half-month period leading up to the end and how I coped, and maybe more importantly, didn’t cope, with what was thrown at me. This story will be in a narrative/ journal style as if it were happening now.
I am doing this because I was almost totally unprepared for what was going to happen, and I hope by giving you my story, you will be a little more aware of these types of end-of-life issues if you should have to face them.
The ER
I feel like I aged five years during this time. My head is still spinning at a feverish pace. I can tell you up front that this was for the most part far from a pleasant experience. Yeah, some made the journey a little more tolerable, but some compounded the unnecessary pains. And then the pandemic, even though it was winding down, presented its own problems.
It started out on the last day of April 2021 when my wife said she did not feel good and needed to go to the hospital. That alone was not an unusual event for her. She had been on a downhill path for at least a couple of years. On the thirty-minute ride to the ER, she got worse, the pain was becoming unbearable. When we arrived, she was taken immediately to a room and after about an hour and a few tests, the ER doctor came in and said they couldn’t find the reason for the pain. When I told her that she had already had three previous heart attacks, the doctor seemed unfazed. She said that the tests were negative for any cardio problem and advised my wife to see her doctor within a week.
As we were going home, she had another “event”. I was turning the car around to go back to the hospital, but she absolutely insisted that we just go home. We got home about midnight and pretty quickly went to bed. I am a sound sleeper, but at about 3am she aroused me to say that she couldn’t move and was in intolerable pain. The ambulance came about ten minutes later, and she was rushed back to the hospital. I came along after in my car and found her in the same condition as when she was at home. What seemed like hours, but was probably not more than twenty minutes, a doctor, not the same one as earlier, said she had had a very severe heart attack.
At that point, I had my first of many Aspie meltdowns. I shouted
“Why didn’t you find this three hours ago!”
It was then that I remembered the vials of blood on a tray during the previous visit. It struck me as strange that they were there throughout the entire time. Why weren’t they sent to the lab? When I mentioned this during the 3am visit, I was told that they were likely a second set of blood draws, just in case they were needed. It sounded like a lame excuse, but I let it stand as the truth. To this day, I question whether that explanation was really valid.
Of course, this time she was sent almost immediately to the cath lab. After two hours there, at 5:00am, the first of many doctors came out and said her heart attack was severe, but there was a reasonable chance that she would survive this episode.
Pandemic Rules
After my wife’s two-week hospital stay the COVID pandemic was beginning to ease up. Most businesses in my area had dropped the mask requirement for vaccinated people. We were vaccinated in early March, so most of our fears were moot by this time. But it seems the hospital was far more cautious. After being in the hospital that first day for 20 hours not knowing whether she would live or die, I finally had to go home and get a few hours of sleep. It was only after I came back that I found out about the “visitation rules”.
I was told that I could only visit once and if I left I could not return until the next day. This proclamation caused meltdown number 2, it would by no means be the last. Being an Aspie there is a direct path from my brain to my mouth, so I let them know what I was feeling.
“You mean to tell me that if I leave and later that day my wife nears death, I can’t be by her bedside!!”
The receptionist was shocked by my words and likely by the level of volume. I guess I need to stop here and explain a little about post-lingual deaf people. I was forty years old when I lost the last thread of hearing, so I had a strong hold on speaking. But when you are deaf, the level of speech is pretty much unknown. I have learned over the years that I speak rather loudly because the vibrations from my voice are about the only way I know I have said anything. When I get emotional, even that level goes up! Another thing is that I am speaking from memory, as I can’t really hear my own voice. Over the years, I have been slurring more and more so the silent syllables, for instance, those with a “t” or a “k” become the same sound. Even Siri has a hard time telling which is which for me.
Ok, now on to the story.
The totally shocked receptionist blurted out, “I don’t make the rules, all I do is enforce them.” So, as a result of this insane rule, I spent many hours a day in the hospital prison, so to speak. It was only after my dearly beloved was finally taken off the critical list that I managed to get more than a handful of hours of sleep in a given day.
I want to finish off this episode of the story on a little lighter mode. Some of you who have visited my “About Me” page know that I have a goatee; I have had it for about fifteen years now. But, after so many hours masked up, my goatee looked like Medusa’s hair. After I had had about 4 hours of sleep in two days, I decided to shave it off but started on a new one the next day. It took about three months now and my beard is almost back to normal.
Doctors, Doctors, Everywhere
This is the story about doctors and my interactions with them during the first two weeks of my wife’s two-and-a-half-month ordeal with end-of-life issues. I will start off by telling you that it was an extremely confusing process.
On the second day at the hospital, I met with the first doctor. He didn’t give me his name or why he was her doctor. I didn’t recognize him. He told me that my wife had a severe heart attack, but she would likely recover. But, he also told me that during an MRI, they discovered that her gall bladder was so full of stones that they could not get an adequate view and that it was likely infected. The only thing I concentrated on was the guess that she would recover.
During her two-week stay, I’m pretty sure I met with at least 10 different doctors who claimed to be taking care of her. Some said she would recover, and some said she would not have much of a quality of life if she did survive. One glaringly absent doctor was her PCP (primary care physician). I was later told by a patient advocate that the PCP is not normally notified until after she is released from the hospital! I was under the impression that the PCP would be consulting with other specialists, but he would be the one to take the options to my wife and me. After all, he is the “primary care” doctor. But he was nowhere to be seen during this entire process. More on that later…
It turns out that there were actually two different groups of doctors involved, one for her heart problems and one for her gall bladder, which was infected. Her gall bladder got so bad that one of the ten doctors said he would not be surprised if she developed sepsis from the bladder infection and died.
I finally figured out that the ten doctors were actually from the two specialties, with five doctors in each group. It just seemed like Keystone Cops, I never knew what to expect when I met the “doctor of the day”. I found out that the average surgeon in this regional group does only one round of hospital visitations a week, and he covers the people he operated on and also those for the other four in his group.
After a while, I just got tired of trying to figure out if this doctor was an optimistic one or a pessimist. When she was released two weeks after the heart attack, it was to a rehabilitation center, which was just a different name for a nursing home. That would be the beginning of the real horror story.
The Nursing Home
Before I get into the main topic of this part of the story, I need to fill you in on some of the things that brought it on. After two weeks in the hospital, part of it trying to stabilize my wife’s badly damaged heart and another to fight the life-threatening gall bladder infection, they deemed her stable enough to go into a “rehabilitation” center. The question was, could I get her into a good one? Short immediate answer, NO.
With some help from the hospital patient advocate, I learned that there were no vacancies in any of the reputable facilities. That left the county nursing homes, and given the horror stories about the pandemic in nursing homes, that scared me. But I just didn’t see an alternative. I chose what I thought was the best of the two homes in our county and then took her there after her hospital discharge. The home was built about 20 years ago, but when we got inside it looked like twice that age by the wear and tear of the place. All the very minimal furniture was full of scratches and dents.
When we got to my wife’s assigned room, it had a small rollout-type bed and a small table with a couple of drawers. That would be her abode for the coming weeks. Her roommate insisted that the room be at 80 degrees, as she was cold otherwise. She was the long-timer there, so she got her say. That first day would be the last time I saw the inside of the facility, that is except for the last day. I visited her daily, but we had to meet outside under a small portico at the rear of the building.
But the surroundings were not her major complaint. It was the dispensing of medications that riled her. One aide said she would get the medication for her, but most often it was close to shift change and that just didn’t happen, but possibly written that it was.
My wife is used to sleeping in a chilly room in the 60s so, needless to say, she got little sleep while she was there. The food that was delivered to the room to be eaten sitting at the side of the bed most obviously came from a can.
I need to stop here and come to the defense, at least minimally, of the facility. It is a well-known fact that 80% or more of most nursing homes are funded by Medicaid, and that just isn’t enough to provide anything more than what I saw. Medicare pays more but only for a given period of them, then the bill becomes the responsibility of the patient. When those personal funds are exhausted, then Medicaid kicks in and the cycle is complete.
When my wife was originally admitted, the staff decided that she needed 4 – 6 weeks of “rehab”. After week three, she simply couldn’t tolerate it anymore, so I took her home with the promise of a weekly visit of a traveling nurse. That would start the next phase of this story.
When she got home,
she made me promise that she would not die in a nursing home.
I promised her that that would not happen. Little did I know how difficult that was to keep… more on that later.
At Home Care
After three weeks in a rehabilitation/nursing home, my wife absolutely demanded that she go home! She simply could not tolerate another day in the nursing home. At that point, it was either going “against medical advice” (AMA) or somehow convincing the staff there to authorize a release. At first, they were not inclined to release her, but finally understanding how adamant she was, they reluctantly did so. If we had left, AMA help wouldn’t be provided any longer. We would be on our own! With authorization, a visiting nurse would visit a few times a week to check on her.
I was very hesitant about taking her home as I knew if she should fall I would be unable to get her up. But, homeward we were bound. At this point in time, she was totally dependent on a walker to get around. Even with that, it was to move ten feet and then rest for a minute or so before continuing from the living room couch to the bathroom. That was her primary destination throughout the day.
It was during this home time that she became unable to eat at all. Even a swallow of food soon came back up. This was not a sudden event but was the culmination of the three weeks of gradually losing the ability to eat. By now, she had shed almost 20 of the 40 lbs she eventually lost over these 78 days. Another item that became quite unmanageable was her meds. She was on 23 medications. Keeping them all straight and trying to get them down her throat was the ultimate challenge.
Getting an appointment to see her PCP proved almost impossible. I pleaded with them to see her as quickly as possible, but they insisted that the best they could do was three weeks in the future. I finally got her in within a week. But even when he examined her, he seemed more concerned about a particular blood test than her inability to eat. Her starvation never came up until I did so. Of course, this triggered yet another Aspie meltdown. I basically told them if they did nothing that I would go down the hall and do a sit-in at the doctor’s office that does endoscopies until they put her on the schedule. The endoscopy was finally scheduled in a week. In the meantime, another five pounds were lost…
The one high point during this round of trauma was the home aide nurse who visited twice a week. Zach was so concerned that he contacted the PCP and told him of the urgency of the situation. He did everything he could to bring her condition to the attention of the caregivers. He seemed to be about the only person who really cared that she was spinning around the drain. Without him, I’m not sure I could have coped with this period of her trauma.
This homestay lasted two weeks. It was then the inevitable occurred. She fell going into the house after one of the many doctors’ visits. This resulted in another visit to the hospital, where kidney damage was found as a result of the fall.
The Final Hospital Stay
As I previously mentioned, my wife took a fall when coming back from one of the many doctor’s appointments we had during this period. I don’t know the number of appointments we had, and I really don’t want to take the time to figure that out. But, as a result of the fall and her being in week 3 of being unable to take nourishment, she was again in the hospital.
She had now lost 25 lbs in two months. I don’t really remember which group of doctors were in charge of this round, but he didn’t mince his words with flowery hope as some others had done. He told us that if she had any possibility of recovering, she would need to have a feeding tube down her throat. My wife was immediately against a feeding tube, but I told the doctor that we needed to discuss this alone before deciding.
At this point, she had multiple problems: severe heart attack, badly damaged gall bladder, inability to swallow, kidney damage, severe pain, anxiety, and depression. If it had been me, I would have given up much sooner, but I didn’t tell her that. She needed to make that decision on her own. She decided to refuse the feeding tube and to put a DNR (do not resuscitate) order on her charts. The doctor who was one of the few who seemed to really care about us said that without the feeding tube, she would not likely last no more than two weeks, so he was recommending hospice.
It so happened that the nurse who was also there knew that there was a bed available in a facility equipped for hospice. Within four hours, she was on her way to the “Hospice House”. This was the first time her eventual demise really struck me, so of course, I had another Aspie meltdown. But, it was really more from relief than panic, as the previous ones had been. I simply had trouble accepting the fact that the love of my life, the person who loved me despite all my problems, was going to die soon. How could I live without her!
Hospice
We are closing in on the last few parts of this “End Of Life Trauma”. I hope this series is at least a little helpful to you in understanding these matters. While I had some exceptional support during this “Hospice” period, it was one of the most stressful things I have ever had to deal with in my life.
As I already mentioned, one of the few doctors who really seemed to care much about my wife as a person and all her suffering managed to get us into a hospice facility within hours of my wife refusing the feeding tube. He told us that she would likely last about two weeks. At the time, I had assumed he also relayed this info to the hospice facility.
My wife was in the hospital for four days before that. The usual myriad of tests were performed, and almost everyone was focused on curing her of her many maladies. But there was one doctor who recognized how much she was suffering. He was one of the brave ones who gave us the facts.
She was taken by medical transport from the hospital to the Hospice House, and I followed along in my car. When I went inside the facility, I was very impressed! She was in a large single room with a couch for my future naps and big windows with beautiful views. The staff was small but very supportive of her and my needs. One of the first things they did, which was common for most of these types of facilities, was to start administering morphine to eliminate her now constant pain. They told me I could stay as long as I wanted during my visits and could come anytime, day or night. Given all the pandemic rules at the hospital, that impressed me, but then the hidden things started happening in the background. On the third or fourth day, a social worker showed up as she was sitting on the side of the bed. The social worker made some comments that my speech-to-text app didn’t pick up, but she had a frown on her face. It would be a few more days before I discovered what that was all about.
About one week into the expected two-week stay, I was informed that she would have to leave that facility. She just wasn’t dying fast enough! Of course, that brought on yet another, and perhaps my biggest Aspie meltdown. I blurted out that the doctor clearly said she would likely survive two weeks, so why were you kicking her out after only one! It seems the social worker had decided that she wasn’t as sick as the doctor said. No one came right out and said that, but it is what I inferred.
Of course, that led to another Aspie meltdown, which was the most severe one I had during this period. I’m sure I was screaming at this point, as I just didn’t have a clue on what I could do now. I couldn’t take care of her by myself, and I solemnly promised she would not die in the county nursing home. I saw this as an impossible situation!
I really don’t know how it happened, but a few hours later, Jessica showed up and gave me a path forward. She said that there was a possibility that my wife could live out the remaining days of her life in what I knew was a well-respected retirement community where she was employed.
When we talked, it was just she and I talking in a private room. Due to my Aspie traits, I am not all attuned to reading people’s feelings, but Jessica patiently listened to my uncontrollable ramblings. That alone meant everything to me. So many others before had kept a “professional” distance, as they had probably been trained to do. I could tell that Jessica was filled with empathy, unlike anyone I had encountered during this period, and maybe ever. I felt I finally had someone who completely understood my grief. That meant the world to me.
She explained that there were several options available. I won’t bore you with those details but will say that I chose a one-bedroom apartment that was currently available as where my dearly beloved would spend her final days. Jessica worked with the hospice organization to have a hospital-type bed delivered to the apartment. On the final day at the Hospice House, the medical transport arrived, but I learned via a text message from Jessica, that the hospital bed was not yet in the apartment! I, as emphatically as I could, said my wife would NOT leave the Hospice House until a bed was in place at the apartment in my retirement community. I just had visions of them putting her on the floor and rushing out! Fortunately, it was less than 30 minutes before Jessica again texted to tell me the bed arrived.
I came to the apartment ahead of the transport, and Jessica was already there to meet me. She had everything in place and explained that there would be 24-hour assistance for anything my wife would need. Nurses during the day gave her the “by mouth” morphine to keep her pain down, and I would do the nighttime regimen.
Even though Jessica was actually the RN administrator, she made frequent visits to the apartment to make sure our needs were being met. My wife would be there for nine days before she passed, and Jessica was frequently there, including the time when the love of my life actually died. She was there to hold my hand and to console me. That meant so much to me.
The Final Week
I’m sure most people think of hospice as that short period that ends the suffering of terminal patients. I will try to explain that this description is simplified at best, and actually somewhat misguided.
As my wife continued her final eight days in hospice at our new home at the best senior community in our region, she was without pain because of the regular doses of morphine that the day staff nurses and I were giving her. She was also getting an anxiety med that calmed her somewhat. But she still remained scared to death, thinking that she was dying. Also, being the stubborn independent that she was, she hated the fact that she couldn’t even go to the bathroom without help! Toward the end, she couldn’t even turn over in her bed without assistance. These things hurt her tremendously.
As the week progressed, her hands and feet began to turn blue due to low blood flow. On the fourth day, she pretty much lost contact with reality. In some ways, that was a relief in that she at least didn’t suffer mentally. By the sixth day, I had pretty much given up hope of being able to even tell her again that I loved her or to really say goodbye.
And then, what seemed impossible suddenly happened!
I walked into her room on the seventh day, and it became very obvious that she was back! Her eyes were once again able to focus, and she even managed to carry on a conversation with me via sign language. That had been shut down days before. I had so much to tell her, and I didn’t have a hint as to how long she would remain lucid. I found out later that this phenomenon of a sudden burst of energy before death is somewhat common and is called. “Terminal Lucidity”.
I told her that I loved her more than anything I could express and that I just didn’t know if I could manage without all the help she provided me in the hearing world. As a response to these words, she gave me two pieces of advice that I will remember forever.
Chill Out
Be Patient
I seem to constantly get upset about things that I can’t do anything about. Politics is the main antagonist in this area, but there are many others. I just have to learn to either ignore those things or quickly brush them off.
Plainly speaking, patience has never been a strong suit for me. Amazon, with its one or two-day delivery, has caused this to go Uber with almost every other business I deal with. Of course, I am also impatient with myself, thinking I have to get everything done now. No eating, no sleeping until it is done. That’s part of my Aspie traits that I may not be able to conquer! 😎
Getting back to the terminal lucidity story, it lasted for about a half hour before she went back into oblivion. It was after this talk that Jessica told me she would likely die in the next two days. Sure, enough, she took her last struggling breath about twenty hours later.
When she died, it seemed like the world had also ended for me. But Jessica was there to hold me and let me babble on. Just being there meant the world to me. In the following days, she repeatedly searched me out to make sure I was OK. She still, even after two months, checked on me via text messages.
I want to summarize the whole end-of-life experience with as few words as possible. It was 78 days from the love of my life’s heart attack until she took her last breath. Looking back, due to the severity of the heart damage, it was a foregone conclusion from the beginning that she would die from it. Most of the doctors during this drama would not relay that info; they continued to hold out hope, even though it would never likely come. To me, that unnecessarily stretched out the dying process. Even hospice had its cruel moments. The “She is not dying fast enough” was the epitome of that for me. For my wife, it was probably the mental torture of those final days.
I don’t want to leave this series on such a dreary note. Some went way beyond their job description to help both of us through this painful process. I will always remember them and ask God to bless them for their acts of mercy.
Freeing & Strangling, At The Same Time
I thought I would give you this epilogue to expand the story on the final week of the trauma of my wife’s death. I know this story is mostly unique to me, and maybe I am penning it more for my benefit than yours, but I can see something similar possibly happening to you. So, maybe my “lessons learned” can be helpful for you.
When the death process finally played out, it was, in a sense, freeing. My wife spent 78 days in great pain and utter anxiety. To finally see that last breath was, in a sense, freeing for both of us. She was finally without pain and anxiety. I was done with by far the most stressful period of my life.
I survived that time but not without numerous Aspie meltdowns. They would come several times a day during those last 9 days. Without the help I got during that time, I’m not sure what would have happened. I was as close to being totally overwhelmed as I have ever been.
By the time my wife had gotten into the second hospice, which would later become my future home at the retirement community, she was pretty much unable to do anything for herself. She was in her fourth week of not being able to hold down any food. She had lost over 30 lbs in sixty days. She was unable to go to the bathroom herself, and due to my twenty-pound weight limit for lifting, I couldn’t help her with even that. She simply got weaker and weaker as those nine days progressed. The beginning of the last week brought on the most tragic condition. She was unable to sign to me what she wanted me to know, and her speech was too slurred to make lip-reading possible. So, even though I was with her constantly, we could not communicate any more than at the most basic level. That made those days totally frustrating for me and utterly anxious for her. Her anxiety grew so severe toward the end that she began to reject everything I was trying to do for her. That almost destroyed me! I had so many meltdowns that I didn’t even know if I wanted to live anymore!
The staff during her final nine days did everything they could, but couldn’t be there 24/7, and even if they were, I don’t know how much they could have done for her. Even though she was in hospice and fed almost continuous doses of morphine, those last days were tragic for both of us.
I didn’t try to write this story until now, three months later, as I don’t know if I could have done it any sooner. It brings back some of the worst days of my life. But I think that now that I have the words out, it will help me heal a little more and move on in this grieving process.
I really didn’t feel that I could actually take a breath during the month after her death. It took more than three months before I could manage to move beyond this period of my life.
Now, it is on to what I want to make of the rest of MY days…
Postscript:
It’s been almost 4 years since I penned this story. I still think of my wife daily, but I have managed to move on to other, much more pleasant things. I still have a small picture of us in our second year of marriage on my bedside table that I say good morning to almost every day.
RJ's Corner 