It still hurts so much that my dad is gone. I’ve adjusted as best I can, and yet it’s still a rollercoaster at times. This is the exact post from his Caring Bridge page that I kept to keep family and friends updated….the only changes are for specific identifiers.
First of all, I’d like to thank all of you for your prayers and support during this time. I know the visitation will be the hardest as I see the body of someone who I not only had the privilege of calling my dad, but the joy of calling my friend as our relationship with me as an adult became one of mutual respect, and often a lot of fun.
On Saturday, dad seemed to have a really good day- D, F, and B visited (B brought him a Mc D’s hamburger and strawberry shake, and he ate half of the burger, and drank all of the shake, which is the most intake at one time I remember in nearly a month. His esophagus was feeling better, and he sounded tired (normal for rehab), but lucid and nothing seemed amiss. The timeline on the rest of this is a bit off as I look at it , but this is pretty much how things went.
Then came Sunday morning. I got called at 5:20 a.m. from VM to tell me that dad was having horrible abdominal pain- something that had been an issue on and off since early March. They got him to the bedside commode, and he became very pale, with a dropping blood pressure- which was not his usual. He was transported to S Hospital’s ER, where I found him to be in a state of delirium when I got there (I followed the ambulance from M Road where I met it by the VM entrance). His awareness of time, place, what was going on (and why things had to be done for testing) were all abnormal at least part of the time. He was very dehydrated (not a big surprise since his esophagus had been ‘sunburned’ during radiation on his spine lesion (still not known to be cancer). Getting IVs in was challenging as he was unable to cooperate like he normally would. And more than once told us all to shut up and “Get my overcoat”. “Goodnight, goodnight, goodnight” became another mantra, as he tried to communicate what he could not rationally express. He wanted to be left alone ! Also some ‘biting’ and other odd behavior from someone who was still very much in control of his actions and decisions just hours earlier.
His blood pressure and heart rate continued to be erratic, but he was sent for an abdominal CAT scan. The ER doc talked to me about the results, saying it was very complicated. There was more than one thing going on. Part of his colon had ruptured, spreading bowel contents, infection, and gas into the bladder, as well as his abdominal cavity. A catheter was placed and it essentially came back as blood, and very little of that. His kidney function was bad (also a dehydration issue to some degree), and his blood sugar was up (not normal for him, but being on steroids, not unusual). HIs white count was elevated. Bottom line: He was severely septic and too unstable for any type of surgical intervention on the ruptured area. He was given pain medications and nausea meds as needed, though he vomited a couple of times, and it contained fecal contents.
Once the catheter was placed, the gas pressure in his bladder came down per the urologist (this also was around the time of the Dilaudid, and ability to relax from that as well). I can’t imagine how that must have felt to a man who didn’t really know how to explain pain very well to start with (due to lack of a lot of history with pain in general), as well as being confused. (“It just hurts”…. standard answer on a good day). The wild-eyed moans were heartbreaking. Add delirium to that, and a general inability to fully understand what was going on, and it had to be terrifying to him- though he did try to answer very simple and direct questions at times. He was still in there, but not fully aware or coherent.
I was offered the option of intensive monitoring in a critical care bed/unit, but I saw no need for that if it was just going to annoy him (bells and beeps are like torture for someone with misophonia ), and we weren’t fixing anything by being there. So, he was brought to a single room as a ‘palliative’ patient referral- meaning that comfort care was the priority. There was nothing else to be done to actually ‘fix’ him. He was not able to make decisions on his own, but had me as his power of attorney for health designee. He had chosen comfort only in a time like this. It still broke my heart to sign the “Do Not Resuscitate” form, as if I were giving up on him… but I knew that it was really all I could do to abide by his wishes in his journey out of this life. Four doctors had been consulted about any possible treatments/interventions, and none thought dad was stable enough to survive them. (Update: Dr. E e-mailed me back that HAD dad been able to survive surgery, it would have likely meant a permanent colostomy, and continuing paralysis from what was going on with him- a long, prolonged, dependent “life”). I’ve always told folks I know- there are a LOT of things worse than dying.
I did go back in to talk to dad after I’d stepped out to hear the CT results, and told dad that the doctors found out why he felt so bad, but it was very serious, and they could not fix it. I’d promised him that I’d always tell him the truth about what was going on. I asked him to let me know if he was still on board with focusing on as little pain as possible, and trusting that I’d do all I could so everything from that point went as easily as possible. I did get a definite, though brief nod. I also asked him if he was ready to see mom, and he nodded again. It was official… he was dying.
Dad’s close friends and family were in and out during the afternoon and evening, talking to him, and letting him know he wasn’t alone. He got some Dilaudid when he got to the room, and that helped his breathing and observable signs of pain (picking at gown, fidgeting, etc). He gradually settled a bit, and then by around 6:00 p.m., he was unresponsive to any type of stimuli (voice, touch, and when I took the electrode leads off of his chest, along with some hairs- I was as gentle as possible, I promise). He remained pretty much like that until a few hours later, when he started to sound like he was struggling to breathe – he was breathing ‘enough’, but just took more effort. The nurses were very attentive, and got him some more Dilaudid, which helped a bit, but in about an hour, he was still not ‘peaceful’. She then got him some Morphine (very effective in breathing issues in terminal patients, as well as pain for many types of pain), and it took a few minutes to start to see him settle again. About 30-45 minutes later, I noticed his breathing change, into a very normal, and peaceful rhythm with no straining.
During hours alone with dad, I talked to him at intervals, and then just watched him. I knew from years of working with people who were dying, as well as with my mom, that it’s very important to almost give them “permission” to go if it’s a death that is prolonged and/or unexpected. I let dad know that I knew he’d been working very hard for a long time, with his profession, full-time care of my mom, then finally having some wonderful times with some special folks to share his life, to wrap up his time here on earth with the recent and rapid health decline. I saw how hard he’d been working at rehab. No matter what they asked him to do, he did it, no matter how much it hurt. I let him know it was OK to rest. That he would be missed more than I could even imagine, but I, and his friends and family, would be OK. Mom was waiting, as were his two newborn sons, M (lady friend of 8 yrs), and many, many friends and family. His hand was limp in mine, but it was still warm, and aside from his fingers, his coloring never really got bad.
I listened to his breathing for hours, and had such conflicting thoughts about wanting him to be freed from this body, and selfishly never wanting that sound to stop. And then it gradually slowed to a peaceful stop, and he was with God . It has been my utmost privilege to be his daughter.