Gracious heavens above, it’s been a year and a half since I wrote. That makes me so sad, after reading the last post I did — there’s so much rich detail in it about our day-to-day lives! I love reading it. That sounds ridiculously pompous, doesn’t it? I don’t love reading it because it’s a WORK OF ART or anything, believe me — but I forget so much about what goes on around here, almost as soon as it happens…this has always meant to be a diary for us to read when the kids grew up and I hate that I’ve dropped the chain. I am moved to do better and will really try.
Much has happened in the past 18 or so months and I will try to sum up the highlights in a subsequent post. The most important news I have to report is the death of my father on May 11th.
(What follows is a detailed account of Dad’s last month. If you’re not up to it, feel free to skip to the TL; DR at the end. 🙂 )
It is as fresh to me today, on June 3rd, as it was the day it happened. Actually, more fresh now that the shock of the event has worn off. I started crying when I typed the last sentence of the previous paragraph. When does the crying stop, I wonder? Three weeks out is too soon to hope for that, I suppose.
My Dad was 73 on the day he died, would have been 74 on June 27th. We should have been able to expect 15 more years out of him, were he to follow the pattern of his own father, who only died seven years ago himself, well into his 90s, and active (and living on his own) until the last three or four of those years. A few things shortened my Dad’s life: he smoked for most of his 73 years — only quitting maybe five or so years ago? — despite a heart attack 25 years ago when he was told if he continued to smoke, he was destined for more heart trouble. Though he never had the subsequent heart attacks that his doctor had predicted, three years ago, after a routine exam, it was discovered that he had heart blockages. His doctor ordered immediate bypass surgery. Dad started doing research and decided that he was not going to be able to survive an open heart surgery (his last hip replacement was the year before, and it literally almost killed him: his lungs were in such terrible shape and he had been diagnosed with COPD a few years before) and decided against surgical intervention. I cannot tell you how much this decision terrified me. For a month after his decision I lay awake at nights, waiting, and dreading, the phone call that I knew was to come at any moment, telling me that he had suffered a massive heart attack. But my Dad continued to do research, and put himself on a strict vegan diet. This lifestyle change was ENORMOUS for him. This was a man who loved his steak and potatoes and bourbon and now he was limited to beans and grains and vegetables. He stayed on this diet for over three years, with negligible cheating, and dropped over 60 pounds. And for all of that time he had no heart issues. When that man put his mind to something, it was done.
Despite the change of diet, his heart was not in good shape. He managed his condition with clean eating but of course he did not heal it.
And he had perpetual hip problems, stemming from a car accident he had before he married my Mom, where he was thrown from a car that subsequently rolled over his hip. He eschewed the physical therapy he was ordered to do at the time, which may be partly why he ended up with a series of hip replacements that started about fifteen or so years ago. The last hip part he had put in ended up being recalled, as it was leaching cobalt into his bloodstream. Having this heavy metal in his bloodstream would, eventually, fatally poison him. He had to have it replaced or face dying a painful, terrible death. But the surgeon and anesthesiologist refused to do the surgery with his heart in the shape that it was. The control was taken out of his hands and he was forced to have the bypass surgery he had done so much to avoid. This bothers me so much about his eventual death — that it came as a result of someone and something making him undergo a surgery he had previously decided not to have done.
This is a lot of detail to go into, but it’s important to me, because I’m so angry that he was forced into having this heart surgery by a mistake made by the manufacturers of the hip part he was given. I’m so angry that the control was taken away from him, because it was so important to him that he make these decisions for himself and he was so proud of his progress on that very, very difficult diet he was on for so long.
His heart surgery was done in July of last year, and as we all could have predicted, it took him weeks and weeks to even get to the point of recovery where he could be released from the hospital. Even after that, his lung capacity was so greatly diminished that, as the days went by, he was relying on higher levels of supplemental oxygen for longer periods of time. And ancillary health problems started causing more trouble: a hernia, an aneurysm…issues snowballed. His last hospitalization was in April, and it was the third time he was hospitalized after his surgery in July. This last time, his blood oxygen levels had dropped precipitously, he had lost the ability to walk by himself (or, really, at all), and he had had a few dangerous falls that had done some significant damage. His doctors admitted him to the ICU. I drove to Arkansas on the third day he was in the ICU, and when I walked in the room, he was sitting up in his bed, the TV on, with a newspaper open in front of him. “Hi, Hon!” he greeted me, cheerfully. That was a month before he died. Everyday in the ICU, his lungs got a little worse, and the oxygen supply system got a little more intense. He started out with a nasal cannula, the little tube that hooks into your nose, which doesn’t obstruct your speaking at all. When he left, he was on a BiPAP machine, a continuous oxygen mask that basically breathes for you — it’s one step up from being ventilated. It’s loud, and horrible, and dried his poor throat and mouth out horribly, and he had trouble communicating with us while wearing it. At the beginning, we could still understand him — he might have to repeat something several times, but we would always be able to understand what he was asking for.
He was in the ICU for three weeks. He seemed to be making progress for a bit, and they even moved him out of the ICU one night — it was one of the nights I was staying with him, and it was a terrible night. Something about the move prompted a steep decline in whatever progress he had been making and he had a scary time in the early morning hours where his oxygen dropped significantly and they could not get it back up to the safe region. By 9 am, they had moved him back down to the ICU. I think that was the turning point. He would have a good day here and there after that that would get our hopes up but about a week later, the palliative doctor met with us and told us that hospice was our only option at that point. Even then, I did not believe her. All I could think was, you do not know my father. You have no idea what he is capable of. Regardless, there was nothing more they could do for him at the hospital, and we made arrangements to take him home.
[Side bar: he had a terrible nurse the day we met with the palliative doctor. I had asked her if we had an option for an air mattress, because I had read it was better for avoiding bed sores, and she impatiently replied “I don’t know. We don’t usually get requests like that for patients that are in your dad’s condition,” and after she heard me talking to the social worker about Dad having a good day the day before and how hopeful it made me she came in and said, “I don’t want you to think that just because a patient has a good day his condition isn’t serious.” I politely ignored her on both occasions. When we got back from talking to the palliative doctor, my eyes were red and swollen, and Dad asked where we had been. I stupidly answered that we had gone down to the cafeteria for coffee. Mom wanted to speak with his personal doctors before talking to him about what the palliative doctor had told us (we had never met with her before, had no previous experience with her, and wanted to verify the information she was giving us). He behaved oddly after that and, finally, told us that the nurse had told him, after we left the room, that there was nothing to be done for him, that we were meeting with hospice to discuss end of life decisions. To my Dad, it seemed like this was all being done behind his back and that information was being kept from him. It was a horrible, horrible moment for all of us — but mostly for him, because he felt betrayed. To this day I cannot fathom what would make a person behave so meanly. I still need to sit down and write a letter to the hospital. It wasn’t enough that he was dying — she chose the one moment he was alone in the three weeks he was in the hospital to tell him he was dying. It still fills me with rage.]
For the three weeks he was hospitalized, my brother and I traded visits back and forth to make sure he was never alone in the ICU. The nights were very hard; you averaged an hour or two of sleep per night, and it was just too much for mom to do that more than once a week. I feel so grateful that we were able to do that, and so appreciative especially of Andy, who has a very important, very stressful job that he took much time off of in order to be present for Dad. And of course grateful to Justin, who shouldered so much while I was gone and also took off a ton of time when I needed him with me. I got back to Little Rock the Monday that Dad was brought back home, and walked in on him as he was settling in to the hospital bed in the living room. He wanted me to push the giant hospital bed out of the living room, down the hallway, and into the den, where water damage to the wall had been repaired while he was hospitalized! I had to explain that I didn’t think I would be able to maneuver that, which made him surly, but I went and took a video of the wall to appease him. He was very alert, though communicating was getting increasingly difficult. I can’t quite put into words how stressful it was to have him trying to tell me something, ask me something, or ask me to do something for him, when I couldn’t understand him. I have never felt that level of stress before. I wanted so badly to get what he was saying and every time I had to ask him to repeat it one more time the frustration and despair on his face would increase. More and more, he would just give up, his shoulders slumping as he waved me away. It killed me. KILLED me. Those were some of the worst moments of my life.
He kept us busy all week, and we slowly figured out some food that he showed an appetite for — some of those fruit purees in the fancy baby food section of Target. He could only eat and drink thick liquids, which made it difficult to find things that were palatable. He developed a craving for Coke — mixed with the ThickIt mixture to make it thick enough so he would not aspirate. I had never seen him drink Coke before, but he was guzzling it down. I think it probably felt really good on his poor, dry throat. His appetite for liquids and food slowly diminished as we neared the end of the week. Still, when the hospice nurse came to see us on Thursday, Dad was grilling her on when he could get a motorized wheelchair and later that day, tried to talk me into helping him sit up on the edge of the bed. “If someone can stay alive using sheer will power,” I said to Mom, “then he is going to outlive us all.”
There were signals that his oxygen intake was getting worse and worse. One night, when we had an aide staying the night to give me a chance to try and get some sleep, he sent her up to wake me up twice. The first time he told me he thought the oxygen machine was broken. I checked all the connectors, confirmed it was working, and went back to sleep. The second time, it was around 4 am, and when I came down to see what he needed, he just stared at me mutely. I jokingly said, “Did you just want to see my pretty face?” and he nodded his head and said, “stay.” I think he was starting to get scared because breathing was starting to become a real struggle, even with the mask. At that point we decided to stop having the nurses stay overnight so we could be there with him.
Thursday night he had terrible pain, shooting up from his back into his shoulder and neck. They were almost spaced like labor pains — they would strike and he would moan and yell, then they would subside. This went on for about an hour as Mom and I gave him one dose of pain medicine then, just an hour later, another dose, twice as much (as instructed on the label). Finally, after another half-hour had passed, he slipped into a restless sleep, but the pain seemed to have subsided.
Andy came down to Little Rock that Friday to spend the weekend, as did his girls, and Justin and the kids came as well. Saturday was a terrible day. I don’t know what happened, but I suspect it was related to a precipitous drop in Dad’s oxygen levels — I checked it several times over the course of the day and it was reading between 50% and 60%, which seemed impossible, because I don’t know that he would have even been able to be conscious at that level. But he almost wasn’t: he was having terrible muscle spasms that sent his arms flying out violently, to the point that we had to stand by his bed for hours, holding his arms tight. He was talking, underneath the mask, not the careful, over-enunciated words he used when he was trying to communicate with us — he was saying whole sentences, whole paragraphs, talking rapidly, sometimes making eye contact with us, sometimes not. I was tortured with the thought that he was trying to tell us that he had had enough: the hospice nurse had spoken to him just days before about the option of taking off the mask and letting go of the struggle; he had seemed, at the time, to vehemently reject that option, but what if the pain of the night before and whatever he was going through now had changed his mind? Andy felt, strongly, that wasn’t the case. I tried to ask Dad, flat out, if that’s what he was saying, and though he seemed to listen to my question, when he responded, it was with the same fast delivery that I had no hope of understanding. Eventually, the pain meds kicked in, and he fell into an exhausted sleep.
Sunday, he was like a different person. He was alert, had no pain, and was responding to all of us. At one point, he took my hand in his and brought it up to his oxygen mask. Astonished, I said, “are you kissing my hand?” And he nodded his head. Before Andy left to go back to Fayetteville, he repeated the gesture with him. I was left shaking my head, thinking, boy, and I thought we were about at the end of the road yesterday. What a difference a day makes.
Later that evening, Dad started scratching about his head, face, and neck. It was obvious that he was experiencing itching underneath the mask, especially, and it was so hard to watch his hands fly up to the mask in his sleep, meet the plastic of the mask, and fall, dejectedly, back at his side, only to have the futile gesture repeat itself again and again. I racked my brain, trying to figure out what could be causing the itching. We had changed the pad between his nose and the mask — could he be allergic to that? I changed it back to a plain band-aid, no change. I was ashamed we had made no attempt to shave him up to that point — maybe his beard was causing the itching? Finally, I called the hospice nurse and asked if I could give him some Benadryl. I had read that the Oxycodone he was taking could be causing the itching and Benadryl was suggested as a remedy. She expressed doubt that it would do much good, but I was desperate to give him some relief, so I ran to Target to get the liquid form (he couldn’t take pills at that point). As it turns out, Dad hated the bubblegum flavor of the Benadryl and I wasn’t able to get much of into him, so it did absolutely no good…finally, after watching him struggle for another hour, I gave him another dose of the pain killer (within the prescribed limit) and finally, his arms stayed still at his side as he finally got some sleep. (After he died, I told the Hospice nurse about the itching. She said it is often a sign of renal failure. His urine was terribly dark that morning, so dark that at first the aide thought it was blood. It seems that renal failure might have been what was happening that night.) It was not a restful night for him. When he would fall into a deep slumber, his mouth would go slack, and would slip beneath the seal of the oxygen mask, setting off the alarm on the machine. This happened every 15 minutes throughout the night, and I would have to get up and re-attach the mask, which would startle him; his hands would fly up and fend me off until I whispered “Dad, it’s Lara, I’m just fixing your mask.” There were a few times I thought maybe he was trying to ask me something but I just patted him and crawled off to bed, and he would go back to sleep. This haunts me. Was he asking for water? Was he worried about breathing? Honestly, I feel pretty sure that he was so under the influence of the pain killers that he was not lucid enough to ask for something, but what if he was? Every other night, I wouldn’t have gone back to the couch before I made sure he didn’t need anything, but this night, I was so tired, and so tired of not being able to understand what he was saying, that I took the easy way out.
Monday morning, Mom came down at about 8 am, and I crawled back up to bed to try and catch another hour of sleep. I woke up around 9:30, took a shower, came downstairs, and ate breakfast. I didn’t spend any time with him at all; both the hospice nurse and the aide that we had hired to help us had shown up, and they were in the living room, giving Dad a bath and changing his sheets. I had just started a text to Andy to tell him about the difficult night when the hospice nurse came in to ask if our main hospice nurse, Dede, was on her way over. I told her she said she would be by sometime that morning, and the nurse told me to call her to come right now. “What’s wrong?” I asked, immediately terrified, and she told me that his gaze was fixed, breathing shallow. I ran into the living room to see Dad staring to the right, as though he was looking out the window. I wish I had run to him and grabbed his hand at that moment. I have a horrible suspicion that he was already slipping away, and that was my last chance to whisper how much I love him in his ear. But instead I went back in the kitchen to call Dede; I had the absurd thought that I didn’t want to worry him by having him overhear me telling Dede to come RIGHT NOW. Mom was crying in the kitchen and I said, come in, let’s be with him, and she and I went and held his hand. She was overcome, and was having a hard time standing up, and I told her that we needed to talk to him, that he might still be able to hear us. And I told him how much I loved him; that I was so lucky and happy he was my father; that his mother and brother and son were waiting for him; that he had fought so hard, but he was tired, and it was time for him to go, and we understood that. His eyes were closed at this point. I called Mom’s sisters, who all came over. Dede had still not arrived. The nurse continued to take his pulse, and said she could get a pulse in his neck but not his wrist. I suspect she was not getting a pulse in his neck but I don’t think she was allowed to tell us he had died so she fudged a bit on that. The oxygen pumping into him made it difficult to see whether he was breathing at all anymore. We still stood around his bed, prayed, and sang “Christ the Lord is Risen Today,” his favorite church hymn. Dede arrived, listened to his chest, and gently confirmed he was gone.
I don’t know how something can be completely expected and an utter shock at the same time. He had half convinced me he wasn’t actually dying. He was very effective that way. And, after all, doctors had been wrong about him many times before.
I wonder if it’s easier or harder to deal with this situation when the ill person acknowledges that he is dying? I would have liked to have had a conversation with him where I told him how much I loved and appreciated and admired him, all my life, but it felt like a betrayal to have that conversation, given his adamant refusal to admit he was dying. It seemed like to talk that way would have not been supportive of his idea that he could make it through this rough patch. And now I’m left with all of these things that I have to just trust that he already knew. I’ve decided that this is the way it should work: a person dies, and in about three days, you get fifteen minutes with them to say all of the things that you realize are important.
TL; DR: my Dad died on May 11th. I’m pretty sad about it. I’ll probably write more on this subject as the days go by because it’s in the forefront of my mind right now. Feel free to skip if it bums you out.
There’s a lot to say about the kids, too, of course; a year and a half is a third of their life at this point! But I needed to get this post written before going on to other things.
If you’re reading this, thank you. It was good to get it off my chest. See you soon.