Hello all you wonderful, dear readers. If you don’t know me personally, you’ve probably been wondering about my extended absence over the last week. My dad died on Friday. It was not the ending we had hoped for. If you knew my dad, this may not be a post you want to read, because it talks about our struggle to control his pain.
On Sunday, last week, I drove up to VA to visit my parents. It was my first time seeing my dad since he had been moved to the new facility. He had declined significantly since my visit the few weeks before. We sat with him for awhile and got the activities person to file his fingernails, then fed him his dinner. On Monday evening, we headed back over a little before dinner so we could be there to help feed him again. The staff seemed ill-equipped for feeding as many residents as they had. In fact, about 45 minutes after he was supposed to be served dinner, they still had not come to get him or 3 of the other residents, and since he wasn’t in his wheelchair and we weren’t able to lift him, we couldn’t wheel him down to the dining room ourselves. I finally had to go ask the staff to come get him and the other 3 residents. To be fair, they were dealing with a new resident who was demanding a lot of extra attention, so I was trying to be sympathetic. But it was so indicative of how they run things in that facility. We even heard them refer to the residents that required assistance with eating as “feeders.” They said it right in front of the residents and in front of us. So rude.
One of my dad’s childhood friends, Charlie, and his wife, Jan, drove down from Ohio that night. We took them over on Tuesday for a visit. When we arrived, he was getting physical/occupational therapy to see if he could stand up to make changing him easier, so we left and got lunch and came back. As we were walking in, Dad’s doctor was coming out and stopped us to talk. Dad had developed bed sores from shearing (basically he was sliding down in his chair and it was stretching the skin and causing sores), so they were going to start having him lie down for an hour or two after meals to take the pressure off of his tush. They were also going to order a new wheelchair that would allow them to shift the tilt so he wasn’t putting pressure on one spot for too long. He was lying down when we went to his room. He wasn’t very alert, but he did open his eyes some and look at us, and Charlie (who plays piano, sings, and is a choir director) and I sang songs to Dad. Mom and Jan joined in, too, so Dad got quite the concert. We also reminisced about their childhood so Dad could hear it. The next morning, Charlie and Jan went over a little before Mom and I because they needed to get back on the road. When they got there, he was in bed again, and there was rock music on his radio. Not knowing that Dad’s CD player hadn’t worked for the last 3 years (Dad had been stacking CD’s in like old 45 records, and had broken it), he popped Dad’s own CD in, and miraculously, it played. We were surprised but delighted. After Charlie and Jan said goodbye, Mom and I headed in for a care plan meeting with the staff. The meeting went okay. We managed to be firm but gracious about his care needing to improve and about how hard a transition it had been for Dad. He had been so sad after we moved him.
After the meeting, I went into Dad’s room to say goodbye before I drove back to Raleigh. I whispered in his ear that I was going but that I would see him soon. He opened his eyes and looked directly into mine and started moving his mouth like he was trying to say something. I had the overwhelming feeling that he was saying goodbye. I can’t tell you why I thought that, but I did. I started bawling in the hallway when I hugged my mom goodbye, but I didn’t say anything to her about it, because I thought maybe I was wrong and was projecting or something. A couple hours into my drive, I had a full on panic attack, so I pulled over to call S and told him that I thought Dad had said goodbye to me. He tried to reassure me that it probably wasn’t that and that I likely had a while to go, but that maybe I should keep a bag packed in case I had to go up again suddenly. I finally calmed down and continued driving home, white-knuckling it the whole way because we were having a serious storm and I could barely see. It normally takes about 4 hours to get home, but between stopping for the panic attack and having to drive 35 in a 70 mile an hour zone, it took me closer to 5 hours.
As I pulled into the driveway, S came out and said that I shouldn’t bother unpacking. Mom had called about 5 minutes before and said that Dad had suddenly started having trouble breathing and hospice thought I should come back right away. So I threw some more clothes into my bag and S drove me back up. I got to his room around 10pm and we began our vigil. The first night, Dad’s favorite nurse (and ours) was actually on duty, which was wonderful. He was relatively restful, though his breathing was too fast and his limbs were spasming a little. They had started him on oxygen and morphine. That night, Mom and I “slept” in wheelchairs in his room. There wasn’t enough room for all 3 of us to stay, so S headed back to Mom’s house and slept there. Over the course of the night, his breathing grew more labored, and the spasming intensified. We tried to play some other CD’s to soothe him now that the CD player seemed to be working, but none would work except for his own. Of course.
The next morning, S came to say goodbye because he had to head back to Raleigh to take care of the cats and our business. He’s not generally good with death, so I was worried he would avoid saying goodbye to Dad, but he actually asked for a couple minutes alone with him. He’s had a rough relationship with his own father, and in marrying me, he felt like he was finally getting the father he’d always wanted. He adored my dad. Watching him say goodbye was tough, but I’m proud of him for doing it, because he won’t have that regret later.
The hospice staff came back and talked to us about what was happening. I used to volunteer with hospice in FL doing 11th hour care (meaning that when a patient doesn’t have family that can be there while they were in the active dying process, I would sit with them), so I was familiar with the dying process. All but one of the patients I’d sat with had been pretty peaceful, and that patient had had cancer. The hospice nurse increased his morphine to every 2 hours with a prn dose in between if he seemed to be in pain. She also prescribed Ativan every 4 hours to help with the muscle spasms. By the evening, he had gotten worse and was clearly in pain. The nurse on the evening shift was totally incompetent. I won’t go into the details, but suffice it to say that she was not following the instructions to manage his pain and, in desperation, I finally called hospice at about 10pm when I realized that she was not going to listen to us. In the interim, I tried doing guided meditation with him, rubbing his chest and saying things like, “Breath love in and let it replace the pain. It’s working its way into your arms, and now into your hands. Feel your muscles relax. Feel all the love you put out into the world coming back to you). I don’t know if he understood what I was saying or if it was just the soothing tone of my voice, but it did seem to help a little while I was doing it. But as soon as I stopped, his pain would amplify again. The hospice nurse arrived around 11:30pm and called his doctor and they upped the meds, but by that point, we were playing catch-up. We were never able to get on top of the pain for him. That night, the hospice people arranged for the staff to bring in a couple of recliners for us to sleep in so we didn’t have to have another night in wheelchairs. Mom and I took shifts, singing and soothing him as best we could, but even when it was our turn to sleep, there wasn’t a lot of actual sleeping going on because every time my dad moaned, we would jump up to check on him. I’m not a religious person, but I was begging whatever powers that might be out there to stop this pain. He didn’t deserve this.
By about 6am on Friday, the death rattle had started. We kept telling my dad that it was okay to let go; that we were going to take care of each other so he didn’t need to worry about us; that he had done well in his life and his work was over. We both knew that a lot of people pass when their loved ones leave the room, but he was in such pain we didn’t want to leave him. Our hospice team arrived again, this time with the social worker there, too. At a little after 11am, a hospice aide came in and offered to give him a warm sponge bath, and we agreed that that would be good. We each kissed my dad and told him that if he needed to go while we were out of the room, it was okay. We talked a little while in the hallway with the social worker, then walked over to the dementia care facility to see the new furniture they’d gotten. In the 10-15 minutes that we were gone, Dad died.
I don’t blame the facility for hastening his death by making us move him. Death coming sooner was not a bad thing. But I do blame them for making his last two and a half weeks on earth sad ones, and I’m angry with the incompetent nurse who should not be allowed anywhere near dying patients. This was not the ending that my dad deserved. Having witnessed the death of several people that went pretty peacefully, I was not prepared for a painful ending. He brought so much joy to this world. And I can’t even begin to start missing him because I’m traumatized by those couple days. I keep replaying them in my head, and I’m having nightmares, so sleep is not a relief yet. I’ve never felt so helpless as I did keeping vigil.
All I can do is hope that, as people share more stories about him, I can start to replace the last few days and years with memories of who he had been; that I’ll remember all the love, all the silliness, and all the joy that he brought to us.