Hello, Everyone:
Sorry my first post is so long, but I have so many thoughts and feelings about my grief experience that I feel compelled to share. I lost my beloved father two days after Christmas, 2014. My mother died two months earlier in October, but I was much closer to my dad. I was raised by my father and grandmother after my parents divorced when I was five years old. I was my dad's caregiver. I also cared for my grandmother, my great aunt and my great uncle over the last 34 years.
On December 18, 2014, shortly after midnight, my dad was admitted to the hospital for shortness of breath, wheezing and low oxygen saturation. At first he semed to be getting better with oxygen therapy, but then later that day he suffered a massive heart attack. Ten days later he died of respiratory failure caused by Congestive Heart Failure, Acute Renal Failure and Pneumonia of Unknown Etiology. He was 86. I watched him die for 36 hours in "Comfort Care" at the hospital. It was the first death I had ever witnessed and the hardest thing I have ever had to do, aside from having to carry on without him. I am my father's only daughter with no husband or children. Most of my friends and relatives live far away so they could not be with me and my dad during this difficult time. When I looked out the hospital window as day turned into night, I felt detached -- like the world was foreign to me and as if I wasn't connected to it anymore. Through the night I listened to my father's labored breathing in the dark. I felt helpless because there was nothing I could do to save him. He was sedated on a morphine drip so he could not communicate with me. During the last twelve hours his respirations became agonal (Cheyne-Stokes). The nurses said he was not in pain, but the sound of his breathing and the mottling of his skin gave me the impression that he was suffering.
I loved my father more than anything in this world. I lived with him for 55 years so the loss of him is devastating to me We both grew up in the same house and we were both raised by my grandmother so that made us even more similar in our outlook. As long as my dad was around I was happy (most of the time) and could face anything, but now I have no one I can trust so completely. I am suffering from insomnia, anxiety, anhedonia and loneliness. For the first time in my life I am seeing a therapist who says I have Post Traumatic Stress Disorder. I went once to a drop-in grief support meeting but it was cancelled because of low attendance. There were only four of us and they wanted a minimum of eight persons.
I am struggling with guilt, because I worry that it was something I did or something I failed to do which caused my father's death. My energy level was low during my dad's final weeks at home, because I had developed chronic bronchitis. I'm normally pretty healthy -- I haven't been bedridden since I caught a bad flu in 1979 (knock on wood). I feel bad that during this rare time that I got sick is when my father died. I wasn't bedridden -- I was well enough to still care for him, but one evening, to make preparing dinner easier and faster, I cooked him a steak, a small piece. He complained that it didn't have salt. I didn't normally cook steak for him or add salt, because of his salt restricted CHF diet. He didn't like the salt-free spices; I had tried so many of them. I didn't even keep salt around to avoid temptation, so I gave him some parmesan cheese to sprinkle on the last forkfuls of steak. I thought a small amount wouldn't hurt him. Later that night he had shortness of breath and was admitted to the hospital for the last time.
He had been briefly hospitalized two weeks earlier for the same symptoms which were diagnosed as pneumonia of unknown etiology. He was sent home with a prescription for the antibiotic cefpodoxime proxetil. However, the hospital lab failed to do a sputum culture, even though the samples had been collected twice and I had reminded both the doctor and the nurse that a culture should be done to know which pathogen was causing the pneumonia. I couldn't understand why I had to tell them. The last time he was in the hospital for pneumonia they did a sputum culture without my having to ask. The doctor said that it was "disconcerting" that the lab did not do the sputum culture, but he still sent my dad home with the antibiotic script after just three days in the hospital. By the way, a woman in the waiting room told me her father had also been sent home too soon with a perforated bowel!
Since pneumonia and congestive heart failure tend to look the same on x-rays, I think it was actually heart failure that caused his lung congestion but I didn't question the diagnosis, because my dad had had pneumonia (staph, non-MRSA) six months previously and had recovered with bipap therapy and antibiotics. They never figured out what caused his pneumonia this time, because nothing was cultured from his sputum during his last admission. He tested negative for TB as well after three days in isolation. I believe the powerful IV antibiotics he received in the hospital, both vancomycin and levaquin, may have caused his kidneys to fail, since he already had chronic kidney disease. Why would they give him such powerful antibiotics if the sputum didn't culture anything?
If it was heart failure, then I worry that it may have been the parmesan cheese that worsened it. I had let my guard down, because at his last doctor appointment his GP told him that my dad had beaten his diabetes through his good diet. So I occasionally let him have more of his favorite foods, like raviolis, veggie pizza, spaghetti and meatballs, and chocolate cake. If we kept the portions small enough he could get by without aggravating his CHF. Comfort foods made him feel better, but too much was dangerous. Sometimes I felt like a killjoy, warning him not to eat too much of his comfort foods. Early on we had learned that just a bologna sandwich could send him into heart failure. I was between a rock and a hard place.
Two years earlier, thanks to improving his diet, he had recovered from gangrene on his toes caused by peripheral arterial disease. His surgeon called his recovery a miracle -- she had previously thought he'd need to have his leg amputated below the knee. She said I was obviously taking very good care of my dad and that made me proud. My dad had multiple hospitalizations, but in between his quality of life was still relatively good for his age, considering all the health issues he had.
I also feel guilty that I wasn't with my dad the night he had his heart attack, because nobody told me he had suffered a heart attack until later. It was a silent heart attack. They just told me he was going to be given bipap therapy to help with his breathing. The bipap had helped him recover from pneumonia six months earlier, so I was optimistic. Since I had been up all night with him the night before, I decided I would get some sleep and see him in the morning. That morning the doctor called to tell me my dad was suffering too much from shortness of breath, that the bipap therapy had failed to help him, so he was going to be sedated and placed on a ventilator. Naturally, this came as a shock to me, but I didn't know enough about what being on a ventilator is like -- I just hoped and prayed it would save his life and be only a temporary intervention.
While my father was on the ventilator, the hospitalist first suggested Comfort Care. She said my dad had had multiple admissions and wasn't getting better. I told her that his quality of life between hospital admissions was still good. He could see, walk, hear, enjoy movies and music, converse, laugh, read, even do light chores on good days. He had recovered from other crises -- he just needed a chance. I started to worry that they weren't going to do their best to save him, because it would be more cost effective to terminate his life.
As if I weren't under enough stress, there was a nurse from hell in the ICU who kept talking down to me. She called me a five-year-old in terms of my medical knowledge, compared to the nurses and doctors. I'm not a trained RN, but in 34 years of caregiving for four relatives in succession, I have done a lot of research on their behalf. I've also taken some pre-nursing classes in college. Still. I didn't want to rattle her ego, so I said, "You certainly know what you're doing." She replied, "Yes, I know my s***!" At one point she told me, "What would you rather have, someone who knows what they're doing or someone who is "touchy-feely"? I replied I'd rather have both. She answered sharply, "Well, you can't have both!" I asked her if it would be contra-indicated to place an extra blanket on my father. The blankets were thin and the room was cold. Knowing how arrogant this nurse was, I was careful to phrase it as a question, not a demand. Still, she got flustered and said, "If you place too many blankets on him, his temperature will rise and then we'll have to give him more antibiotics." He didn't have a fever and he felt cool to the touch. The nurse lectured me with a sarcastic tone, "You may have taken care of your dad at home, and I'm sure he's a wonderful man and all, but he is in a different world now!" I replied that I was just trying to advocate for my father because he can't speak for himself. She reluctantly brought the blanket and proceeded to drape it over the top of his head. Since my father wasn't used to sleeping with his head covered, I asked a male nurse permission to move the blanket to cover his body. This nurse misunderstood me and brought more blankets, which further irritated the nurse from hell. I'm not Asian, but she mentioned Chinese families who demand six blankets on their loved ones, even when they have a fever,
One thing she told me that disturbed me more than anything else was that she said her religious beliefs didn't approve of keeping people alive artificially! My first impulse was to ask the Intensivist to have her reassigned, but he wasn't available. Then I remembered what my father had told me about not making waves, because he might be the one to pay for it. I was afraid the nurse would pull the plug on my dad, in accordance with her belief system or as revenge for my complaining about her So I kept quiet and even asked her permission to dim the lights, so she could enjoy her power trip. Later I saw her moaning in the hallway that people don't understand how much work a nurse has to do. An older nurse replied, "Sorry, that's part of the job!" Luckily, I only had to deal with the nurse from hell for two nights. This may sound paranoid, but I wonder if part of her job was to help convince me and others that Comfort Care is the only ethical alternative. Belittling my knowledge may have been a ploy to reinforce the argument in favor of Comfort Care.
During the period that my father was being weaned off the ventilator, I found him awake and alone in the ICU, looking distressed. He wrote a note on a piece of paper that read, "Help Me". He wanted the ventilator tubes removed from his throat. At first I thought he wanted to die, but he didn't want to die, he wanted the tubes out -- he didn't think he needed the vent anymore. I managed to convince him he had to wait until the doctor determined it was safe to remove the tubes. He settled down but I had never seen my normally stoic father looking so utterly forlorn. It was heartbreaking! He asked me to bring a handheld battery-operated fan from home to cool him off -- even though he had no fever and the room was cold, he felt unusually warm. He wanted me to direct the air flow to his face, because it helped him breathe. Using an eraser board he told me he loved me, and I told him I loved him, something we said to each other every day at home. I know my presence brought him comfort and that is a great consolation to me, but the images of his suffering still haunt me.
That night I stayed with him all night and I was glad that I was able to advocate for him. When he couldn't sleep I called a very nice nurse who gave him Fentanyl which put him to sleep right away. Twice he needed it to sleep. When he awoke, my dad asked me if I had slept, because I tend to suffer from insomnia. I had nodded off in the chair. I told him the nurse said we were both out like a light. Daddy always worried about me. He was so cute. On Christmas Eve, he was off the ventilator and it looked like he was recovering. He told me, "You see how much I need you?" I replied, "I need you too! That's what love is all about." The ICU nurse told me my father was doing better than yesterday. He said I should go home and get some rest, that he would look after my father and call me about any changes. The nurse was compassionate and I trusted him to take good care of my dad, so I went to bed, hoping for a Christmas miracle.
I awoke with a feeling of dread. On Christmas morning, I found my father in respiratory distress, the oxygen cannula had fallen out of his nose and he was begging for air, water and God's mercy, over and over. His oxygen saturation had dropped into the low 80's. No one was helping him, and this was in the ICU! When my father saw me he thanked me over and over -- again it broke my heart to see him suffer so much! I got a nurse to put an oxy-vent mask on him and increase his oxygen. He shouldn't have been switched to the cannula, because he was breathing through his mouth. The nasal gastric tube was blocking his airway. After that I knew he could not be left alone. Thank God I had slept the night before, because that helped me stay awake with him for the next 36 hours.
A couple of days before, I had reassured my father that there was a closed-circuit tv camera watching him in the ICU. He waved his hand in a dismissive gesture as if to say, "They're not watching me." I should have taken that as a warning. Still, I needed to sleep and there was no one else to stay with him through the night.
I'm so grateful that my half brother, a Critical Care RN, and my niece arrived at the hospital on Christmas Day. The hospitalist told us my dad's kidneys were no longer responding to diuretics and his creatinine level was rising daily. When I asked about loop diuretic braking and suggested they try a different diuretic, nobody even knew what braking is. I had asked the nephrologist about aquapheresis and he said they didn't offer it and that he needed full dialysis. The hospitalist said my dad was too weak to be moved. She seemed more like a robot than a human being. She said there were only two options, a heart operation or Comfort Care. If he had the operation he would need to be put back on the ventilator and placed on dialysis, which might kill him because the volume fluctuations would stress his heart. The doctor said his heart was not able to perfuse his lungs and kidneys properly, because of mitral valve regurgitation, enlarged left atrium, arrythmia with a blood clot, and blocked vessels. He had been diagnosed with advanced heart disease several years earlier but wasn't considered a good candidate for surgery then; now at 86, after his massive heart attack, his chances were even worse. She said his heart's ejection fraction was 15%, barely enough to sustain life. Mercifully, his heart attack had been silent so he didn't have chest pain, but respiratory distress is bad enough.
My niece and I tried very hard to convince the doctor to consider other options to no avail. My brother the RN said Comfort Care would save Dad a lot of suffering. My brother and niece started crying. I was still in shock, but broke down over the phone to my best friend in Cincinnati.
I can't help but wonder what if he had received more aggressive treatment for CHF two weeks earlier instead of the doctor assuming it was pneumonia, and sending him home with just an antibiotic, would my father still be alive? Even if he had pneumonia, was giving him those nephrotoxic antibiotics warranted without knowing which bacteria was causing it?
The same doctor during my dad's previous hospital stay had encouraged him to select a DNR status. He said if my father wasn't going to have a heart operation, then he "should be consistent". I explained to him that my father was being consistent -- he didn't want chest compressions because they would break his ribs, and he didn't want surgery, because they would break his sternum. My father wanted to live, but the doctors at a different hospital had told him he was not a good candidate for heart bypass surgery. My dad didn't want stents, because he didn't want to take blood thinners -- he had a high risk for gastric bleeding. Several years ago, daily aspirin for his heart and H. pylori had triggered a slow bleed in his stomach which caused him to lose a third of his blood supply. His mother had died from internal hemorrhage from coumadin even though she had regular protime tests. My father was willing to try the ventilator, if necessary, to give him more time to recover. He had beaten the odds before. He was a fighter, literally -- he had boxed for the Golden Gloves in the Army during the Korean War.
I got the impression that the hospital wanted to phase my father out, because of his age. The lab not doing the sputum culture two weeks earlier, even after I had reminded the doctor and the nurse, is highly suspicious.
The hardest part was when my dad asked me if he was going (dying). I told him that the doctor said his heart wasn't doing too good and he needed an operation. I wanted so much to soften the truth, to give him some hope to cling to, but I needed to know his wishes. He didn't want to go back on the ventilator and he didn't want to stay weeks or months in the hospital recovering from open heart surgery. Two years earlier he had spent six weeks in the hospital just recovering from a botched toe amputation. When a follow-up surgery was scheduled, the surgeon postponed it from the morning to the afternoon -- my dad was not given anything to eat or drink for 22 hours! Thank God, the nurse cancelled the surgery when my dad started vomiting from low blood sugar. If he had had the surgery that day, he might have aspirated while under anesthesia. Naturally, this and other adverse hosptial experiences undermined my dad's confidence in having major heart surgery.
I hated the idea of giving up on my dad. My purpose in life had been to try to get him well, but I also didn't want him to suffer. A respiratory therapist told us that a lot of his patients were living vegetables on respirators because their families wouldn't let them go.
My father said good-bye and thanked everyone present, my half brother and his wife, and my niece. He said to tell his family and friends he loves them, thanks for everything and God bless them. Then he started praying. I told him he had nothing to worry about, that he was such a good, kind man all of his life that God would surely welcome him into Paradise. I reminded him that the priest had already given him the Anointing of the Sick while he was under sedation. His soul was pure and he would go straight to heaven. He thanked me. I had called two priests hoping one of them would comfort my father now that he was conscious, but one never returned my call and the other said he would send a different priest who works at the hospital, but he never showed up. More regret there. For Comfort Care, my father was moved to a private room and placed on a morphine drip. I missed all the monitors, which I used to fixate upon, looking for the slightest sign of improvement. Thankfully, the morphine and removing the NG tube helped his breathing, and there was a brief time when he seemed his calm, adorable self once again, except he was very weak. Again he started praying for God's mercy until a male nurse told him, "God is good, my friend." That seemed to reassure him. I treasure his last peaceful moments, before he lost consciousness. I told him where there is life there is hope and that I couldn't wait to get him home so I could take care of him. He nodded. One of the last things he said to me was that Michael was going to get tired (taking care of him). Michael was the RN who had saved his life two years earlier by calling off his surgery after my dad had been starved for 22 hours. Unfortunately, Michael was working on a different floor. It really is the luck of the draw -- if you get good hospitalists and dedicated, compassionate nurses, your chances are much better. As my father lay dying, my brother and I prayed and read passages from Scripture. I didn't know if he could hear me at this point, but I told him I loved him and thanked him for being such a wonderful father all of my life. I had told him these things before. I held his hand. People say that hearing is the last thing to go, but I hope to God that his soul was outside his body so he could view his physical suffering with detachment. The nurses told me he was not feeling pain, but how do we really know? One nurse noted that he was calm, compared to some patients who appear agitated even when on morphine. My brother had to go home to sleep so I was alone again for the last few hours. After 36 hours of keeping vigil with my father, I couldn't help but doze off for a few moments. That was when my father passed away. It was as if he had waited for me to fall asleep before he departed. A nurse said she saw him draw his last breath. One of the nurses was crying. I cried when the doctor confirmed his death. I had already cried several times before my father died, but quietly, so as not to upset him. I'm glad it was the nicer hospitalist who was on duty that early morning, and not the "robot". My father was my best friend, my hero, the one person who cared about me as much as I cared about him. Almost every happiness in my life was linked to him in some way. We were so close we sometimes could read each other's thoughts. Our interests, values and opinions were so similar we were practically clones, but like all human beings we sometimes disagreed. There were unkind words I wish I had never said in anger or just because I was tired. I always asked forgiveness right away, but I wish I hadn't taken his forgiveness for granted. He wasn't perfect either, but he was the kindest person I ever knew. I wish I had complained less about my problems and just been happy he was with me. I loved him so much and I did a lot for him. I know I made him happy most of the time, but I'm still tormented by guilt feelings. I also feel so sorry for every sad thing that ever happened to him, even things that happened before I was born. I have to remind myself that he had lots of happy memories. He felt lucky to live during the Golden Age of movies and music. He enriched other people's lives by broadening their cinematic and musical horizons. Since my dad died seven weeks ago, I haven't even been able to watch tv, because it makes me miss him too much. I can't listen to the music we both loved without feeling sad and anxious. Movies and music used to be our refuge -- now even thinking about all the things we enjoyed together makes me impossibly sad. Right now my life feels pointless without him. I'm afraid of spending the rest of my life alone. People tell me I'm free now and on the brink of an exciting new era. But I would gladly give up my freedom for the rest of my life, if I could only have my beloved father back. People tell me he led a full life -- but how do they know that? For most of his life he was blessed with good health, good looks, strength and character, but he never travelled much or had as much fun as he deserved. He was happiest at home, but I wish he could have had a fuller life. I feel guilty that I never learned to drive -- I might have been able to give my father a more full life, if I had bought a car. My dad stopped driving when I was 9 years old, because he accidentally hit a dog which had run in front of his car from between two parked cars. When relatives used to call and tell me about all their fun road trips, it made me envious. I sometimes complained to my father that I wished we had something fun to look forward to. He replied, "Is fun so important? When I'm gone you'll be able to have all the fun you want." I answered, "But it won't be fun without you." Now I get invitations from friends and relatives to do fun things, but it's not fun for me without my dad. I wonder where were these people when my dad was alive? He could have used a little fun, too, once in a while.
I know this post is way too long, but it helps me to write about my loss and talk about it. Unfortunately, the therapy sessions seem too short and I can't keep burdening my friends and relatives with my grief, because they have their own lives to deal with. Few people can understand how hard it is for me to lose my father after living with him for 55 years. My heart goes out to all of you who have lost loved ones. I hope you are healing as I hope to heal.
