I more or less gave up blogging a few years ago. FB replaced it. But since my dad died on 10/8 (one week ago today), I feel that I might need to start back up again. I have things to say. A lot. So here goes. I will start with how we got to where we are now, which is my dad no longer being of this Earth.
My dad did not always make the best decisions. But during the last year of his life, I was there for him a lot. He needed me. He could not keep track of his many, many ailments, so I was the one who talked to doctors, nurses, etc. Frustratingly, he had two (main) competing health issues: congestive heart failure/blocked arteries for which he was told in November 2019 he needed open-heart surgery within a few months, and hematuria. For months, urology was afraid to put him under to figure out why he had blood in his urine, and cardiology did not want to operate on a man who was losing blood. I spent a lot of time going back and forth with those people. Then stupid COVID came. My husband would often ask me why I took so much responsibility for my dad's health, but I feared if I did not, then dad would not make or get to appointments or give docs the right info. Almost every time he had a new stay at the hospital or a new nurse, they almost always said, "Your dad said to just talk to you because you know his health better than he does."
On the 4th of July, my dad was life-flighted from Indiana Hospital to Shadyside. He was put on a ventilator. I feared we would lose him then. That was the first time someone (a nurse, in this case) asked me what to do if his heart stopped. It was an easy decision to make; he was always very clear about wanting to live. But it was still sobering and scary. That was also the first time my dad got confused at the hospital, and I learned about ICU delirium. I think of that as the beginning of the end. The "pre-beginning" happened in late May, when he fell, could not get up, and called the ambulance. He was in the hospital for a few weeks then and followed that up with about 1.5 weeks in skilled nursing. He mostly recovered then, though, at that time, we found out his prostate cancer had returned. But that was not his biggest issue; it was still his heart. But he was never the same again after the early July hospital visit.
In later July, things got worse. He was in skilled nursing from his early July hospital stay and was having trouble with his catheter and in a lot of pain. He was sent to Indiana Hospital, where a doc discovered a tumor in his bladder. Sadly, the doc did not biopsy the tumor (he got some blood clots instead), so we were not sure if the tumor was benign, malignant or what it meant. Another doc said it could be cancer, but likely not his prostate cancer spreading. As unfortunate, my dad's kidneys were not working well, so docs at Shadyside (where he was transferred) put in nephrostomy tubes. At that time, a cardiologist said if dad did not get the open-heart surgery he had been putting off for months, he would likely not live another year. Dad also again had hospital delirium, which was both frustrating and scary. Eventually, he was released to skilled nursing and stayed for about 10 days.
After only a few days at home with his girlfriend (who had broken up with him several times already), she called the ambulance because dad was just too weak to get up on his own, and she could no longer take care of him. Plus he was not taking his medication. He was simply not well enough to be on his own. So on August 27, back to Shadyside he went. That was the last time he ever went home. During that Shadyside visit, they discovered lesions on his liver, which meant cancer came from somewhere; the one doctor thought the prostate cancer had spread but was not sure. I convinced them to do a liver biopsy before they released him to skilled nursing; they kept wanting to schedule him as an outpatient to have a cystoscopy). I kept trying to prolong his stay. At that point, I told dad he could not be on his own anymore. He was very mad at me, but there was no one to take care of him. I felt awful. I told him he needed to be in skilled nursing for a few weeks, probably even a month or two, and if he worked at it, maybe he could be on his own. I was not convinced he would ever make it back (well, to someplace else; he lived in a rental with stairs), but there was always a chance.
He was at the nursing facility for only one week and on September 10, he fell. I still don't understand exactly what happened/what made my dad want to stand up in his wheelchair (he had not been able to get up on his own since before July). My dad had fallen three times in 2020 already, but he had never landed on/hit his head. The bright side with his fall and his having to go to the hospital (this time it was Forbes) was that I could see him again since no visitors are allowed in nursing or long-term care facilities. The next morning I talked with a neurologist who said that even though dad had a brain bleed, he probably could be released back to the nursing home that day. I asked a ton of questions, explained my dad's many health issues (he had little idea since dad was not in the Forbes/AH systems), and after the doc asked me if I was a nurse "you ask really good questions and seem to know so much," he decided maybe they should keep dad for a few days. Unfortunately, the news did not get better. We found out that my dad had bladder cancer. I guess the Forbes doctor could read/see something in his chart from UPMC. That was a shock; we were expecting that the prostate cancer had spread.
Dad continued to say some confusing things "maybe someone pushed me out of my wheelchair because they wanted one of my five briefcases." I had to tell him he did not have any briefcases at the nursing home. Also during this stay, a doctor told me that dad likely had 6 months to live, and the next few months were going to be very hard. He said we were just prolonging dad's suffering by having him sent to the hospital every time something went wrong. I told him since I could not see my dad in a nursing home, I was going to be sure he WAS sent to the hospital anytime something went wrong.
I talked with the palliative care team during that stay, and they said they would follow up with both dad and me, but they could not actually go into the nursing home (stupid COVID). Dad started (continued) to decline while back at the home. He was seeing things during one of our window visits and was talking about a wedding he went to the day before. He insisted his girlfriend visited him that afternoon. By this time, mid-September, a good friend who is an oncology nurse was able to interpret my dad's biopsy results which were put into dad's patient portal. Stage 4 bladder cancer. Sigh.
We had the first oncology appointment the following week. I was supposed to meet dad there, but the driving service that was to take dad was afraid he was a fall risk, so he never made it. The nursing home called me at the time of the appointment, when I was already there, to inform me of this. Fortunately, the oncologist was willing to see me at the end of his day and have dad be on video chat. My brothers had come up for the weekend to clean out dad's appointment, and my older brother actually got to be in the room with dad during that initial call/meeting. Dr. Thomas agreed that dad had declined since he had seen him just over 3 weeks prior at Shadyside, but he was willing to try to immunotherapy, which we could start next week. Dr. T at that point said dad probably had 3 to 6 months to live and he was not sure it would work.
The following week, I had another window visit with dad at the nursing home. He was in pain and was unhappy. He said he did not care about his immunotherapy appointment that Friday. On top of that, he was unable to make or receive calls on his cell phone; I think he had done it only a few times since his fall. It was very hard not to be able to talk with him outside of a weekly (or two) visit. During a care call with the nursing home that same day, they said dad was not eating that much and continued to be confused. He was also in pain, and a few days later, they put him on a pain medication. We had a video call that same day, and it was very hard to understand him. He talked softly and moaned a lot. I cut the call short and said I would see him tomorrow at his immunotherapy appointment.
The next day, dad came into Hillman via ambulance moaning the entire time. After we were moved into a room, Dr. T. said he was very concerned about dad, who would not respond to commands, open his eyes much, lift his head, etc. After a couple of hours of his getting fluids and waiting for test results, Dr. T decided he should be sent to Shadyside. At that point, he thought dad had just weeks left to live and likely would not get to try immunotherapy. But he said if dad improved, he was willing to try it once dad was released. I called his girlfriend and his sister and put the phone up to dad so he could hear their voices; he did not respond beyond moaning. I told dad I loved him, and he said it back to me over and over again. That was the last meaningful thing he said to me.
After running some tests at the ER, the doctor informed me that dad had a blood clot in his leg and on his lung. Since his fall 3 weeks prior, he had been off blood thinners, and apparently with his limited mobility and progressing cancer, that is not uncommon. But just one more thing to add to this woes. He was admitted, given some more fluids, put back on blood thinners, and a different pain med. Dad had yet to say much of anything; he just moaned in pain. It was so tough. The docs agreed to give him a few days to see if he would "perk up." The only thing he said those next few hours I was there was "No you don't!" in response to a nurse telling him she knew how he felt as they were trying to move him, and he was in pain.
Dad never improved. He never talked again. He mostly slept. On Sunday afternoon, we made the difficult decision of taking him off the fluids (he could only sip water at that point), stopping his various medications, and ceasing all tests. The oncology PA said he had a week to weeks left. We talked about sending him to a hospice facility, and my brothers were going to come up the next day to talk about it. Monday morning, 10/5, the PA called me and said she thought dad had hours left to live. I rushed to the hospital, but he was okay. Breathing, sleeping, snoring but seemed comfortable. He did not talk or wake up, but a few times he squeezed my hand. One of my best friends came to be with me for a few hours, and by mid-afternoon, my little brother had arrived. I left a few hours later, and within an hour, my older brother got there. Dad hung on. We decided to keep him at the hospital since he likely did not have much time.
The next day, I came back to continue my vigil. Dad continued to sleep, snore, etc. He no longer responded to when I held his hand or rubbed his arms or legs. I sang and prayed. I again left around dinnertime, and within an hour, a nurse called and said he likely had a few hours. My brothers were coming to our house for dinner, so we laughed and talked. I decided not to go back that evening, but they did. Dad still hung on.
On Wednesday, dad slept peacefully the entire day. At this point, I felt like he had days to go. I suggested my brothers might want to go home. They had spent the day planning his funeral and running errands. I did what I did before, sang, talked, prayed, rubbed.
On Thursday morning, dad continued to sleep and not respond. I again did all the stuff I did before. But in the early afternoon, I feft a shift. I sensed his time was nearing. I texted my brothers to say that I hated to be the third person to say I thought he was coming to the end, but I felt it. I told the palliative care doctor my feelings, and she agreed. I said if she thought dad had hours left (which is what I thought anyway), not to call me, as I could not go through it again. I said my goodbyes The second-to-last thing I said to him was, "See you in another life, brother." in a nod to Desmond and Lost. But the very last thing I said was "I love you." It was weird walking out, thinking that was probably the last time. After dinner, I wrote a draft of a post on FB about his life and death, so it would be ready. At 9 p.m., I sensed it coming. I kept looking at my phone. At 9:38, Dr. Willoughby called to inform me dad had died. It seemed unreal and yet real. I called my brothers right away. Then I cried.
And thus my life had changed.
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