This is the hard part… it’s hard to write these memories, that are so fresh.
Dad was transferred to the rehab hospital on March 24, 2016, three weeks after being admitted to the hospital. He was very nervous about the rehab hospital not wanting to take him because of various symptoms associated with the spinal cord pressure from the lesion that was still not identified after several biopsies (the spinal cord lesions, bone marrow biopsy- nothing was ever identified as cancer). I reassured him (or tried to) that those issues were why they were in business. Dad was willing to give it all he had. He was weak after three weeks in bed. During his time in acute care, all transfers were done with lifts or passive movement (mostly to avoid the hospital staff getting back injuries). He hadn’t been up on his feet for those three weeks. For each day in bed, %3 of muscle strength is lost. That’s why it’s so important to be up as much as possible when someone is sick and/or in the hospital. But sometimes, it’s unavoidable.
The first day dad had physical therapy at the rehab hospital, I wanted to be there to get an idea of how he was starting out. With two therapy staff, putting their shoes in front and back of dad’s shoed feet, and him pushing up from the elevated therapy mat, he was able to stand up absolutely perfectly… but he couldn’t tell he was vertical, and he felt like he was falling. He knew he was up, but had no idea where he was in space (proprioception issue). He had a look of terror in his eyes, but he was doing everything they asked him to do. Everything. I was actually very encouraged by what I saw, and it brought tears to my eyes. It really looked like he had a good chance at getting strong enough to go home. He had to be able to transfer with one assist (one person) in order to go home, and if the first day had him ‘up’, I was thinking that a few weeks would have him that much stronger. I kept telling him “you’re doing SO good!”. And I meant it.
During the initial acute care hospitalization, and continuing in varying degrees, dad had been having stomach pain (he’d also been hospitalized in Florida for stomach issues that were thought to be food poisoning). It was thought to be from the way the nerves worked coming from the area of the spinal cord with the most pressure on it. I questioned why nobody was trying to figure out how to help that, and I was sort of dismissed as just not understanding that it was from the spinal cord pressure. I had worked neuro when I got out of nursing school, as well as various types of rehab during the 20 years I was able to work as an RN. I understood the obvious symptoms, but knowing my DAD, I also knew that nobody was even considering that something else could be causing a problem. Being out of an acute hospital sort of narrows focus. Nobody was looking for any other problem. And that was a huge omission. I don’t know if anything could have been done, but nobody was looking.
The stomach pain continued to be a problem in regards to general comfort (progressing to suffering), ability to eat, and his general feeling of not going to be OK. Come to find out, dad was right. There was something going on that nobody knew about. He’d been telling me specific things he wanted done if he died. He had me write them down. There were four things he wanted done specifically with three paintings and a small Steiff teddy bear. I wrote them down, but never thought that he was not going to get through rehab.
On April 3, at 5:20 that Sunday morning, I got a call from the rehab hospital to tell me that dad was having more intense abdominal pain, and his blood pressure had dropped when they got him up to use the bedside commode; he needed to go to the ER. I jumped out of bed and grabbed what I might need (my medications) for the day, and took off to try to catch the ambulance to make sure we got to the hospital where dad had been prior to rehab. I understood that they HAVE to go to the closest one if someone’s vital signs are too unstable, but thankfully they went to the hospital with his more current records about the current situation. I wasn’t prepared for what I saw when I got back to the room to see dad.
He was delirious from pain as well as sepsis (which was discovered through the ER blood testing). He was unable to give the right year, and wasn’t cooperating with the nurses as they tried to get an IV in to give him pain medications. Normally, dad would joke around with those trying to help him, but he kept telling us all to “shut up” (not a phrase he used), “get my overcoat”, and “goodnight, goodnight, goodnight” (wanted to be left alone). He was also doing these weird biting gestures towards his female friend when she got there. I got up near his head to talk to him (and wiping his mouth after he vomited), and explaining that everything that was going on was to help him. He’d acknowledge that he’d heard me, but was still erratic and ‘not right’. Eventually, the nurses got an IV in to give him pain meds (and nausea meds), which did help him settle down. I’d never seen dad like he was that morning, and it scared me, but I had to stay in ‘nurse mode’. I knew that I’d just become responsible for decisions regarding his care. He was no longer capable of making rational decisions about his health. The POAH (Power of Attorney for Healthcare) had just kicked in. That made me so sad. Dad had always been able to make good decisions, and his mind had always been so sharp, with a great sense of humor.
Dad was sent for an abdominal CT scan, to find a source for the pain. When the ER doc pulled me out of the room to tell me what was going on, I was completely caught off guard. Even the ER docs and radiologist weren’t expecting what they found on that scan. There was a ‘diverticula’ (small pocket that extends from the intestinal wall) that had ruptured. Dad had never been diagnosed with diverticulosis (the outpouchings) or diverticulitis (inflammation of the outpouchings). The contents of dad’s bowel had been spilling into his abdominal cavity, causing extreme infection to the point that his system wasn’t able to fight it off (peritonitis with sepsis/septic shock). The bacteria had also spilled into his bloodstream causing the sepsis and septic shock (what made his blood pressure drop). The sepsis was so severe that it was producing gas in his abdominal cavity and bladder. Four specialists that were contacted, and nobody could fix it. Only one came in to see him (urology guy), and he said that the catheter was the only fix for gas in the bladder (which had already been inserted when he got there). A general surgeon, urologist, infectious disease doc, and internal medicine doc- and the ER folks- all said that dad was going to die, more by what they didn’t do than what they said. I knew what they were saying, and yet it didn’t seem possible that this vibrant man who had driven home from south Florida just weeks earlier was going to die very soon. And that I was responsible for any decisions until that happened.
Dad and I had discussed end of life care many times, and I knew what he wanted. He didn’t want anything heroic or that would prolong the inevitable. The disease process was making all of the decisions for him for the most part, I just had to sign off on not doing anything active, other than whatever it took for comfort. I knew that he didn’t want to be a full code- he had made himself a “no code” when he was initially hospitalized in March. But signing that “Do Not Resuscitate” paper broke my heart. I felt like I was giving up on him, and yet I knew that keeping him in a state of intense suffering would have been cruel and selfish. The ER doctor and nurse practitioner made sure I understood what was going on, as well as the inability to offer any hope besides comfort care. When I told them that I’d been an RN since 1985, they sort of relaxed a bit.
I had gone back in to talk to dad, telling him that they knew why he was so sick, and that they couldn’t fix it. He nodded enough to let me know that he heard me. When I asked him if he was ready for comfort care only, he nodded (not that we really had a choice). When I asked if he was ready to see mom, he nodded again. I had promised him that first day he was in the hospital (March 3) that I’d be honest with him about anything I knew, and I felt that I needed to keep my end of things regarding what the CT scan had shown. That was one of the hardest things I’ve ever had to do. He had a right to know. He almost seemed relieved. He’d been in so much pain, and was facing dependency in a nursing home if he couldn’t transfer with only one person. That wasn’t my dad. My dad was the guy who got up at 7:00 a.m. to go stand in line at estate sales, or drive crazy distances while traveling. He wanted to live as long as possible, so when he nodded that he was ‘ready’, I knew that he needed the ultimate relief of being healed by the Great Physician. He was ready to see God.
They offered a bed in ICU, which would have driven dad nuts with all of the bells and alarms, and it wouldn’t have fixed anything. Dad hated any extraneous noises, so I knew he just wanted a private room where it was quiet. With any admission, he’d beg me (literally) to make sure he got a private room. I had to tell him those times that I’d do what I could, but hospitals have to reserve some private rooms for people who are admitted with infections that would put others at risk. But with palliative care (end of life), private rooms are generally available. So that’s where we went… to a room on the cancer floor where they were used to handling patients who were there for comfort care only, until the inevitable happened.
I had called one of dad’s close friends earlier that day while dad was in the ER, and let him know what was going on. He had been able to get to dad’s Sunday School class and let them know en masse, which was incredibly helpful (one of dad’s lifelong friends was also in that class, and he came up when dad was still in the ER). Those two friends were able to come and visit, and another friend had dad’s brother’s phone number (he was in Florida) so I could let him know as soon as I got it. My uncle called dad’s local cousins, who were able to see dad later that afternoon, after dad had lost consciousness. But they were there, and able to spend time with dad once he got to the room. I firmly believe that it’s important to let people know that they aren’t alone, even if they can’t respond. It was important that those friends and family be able to see dad before he died. The friend that I first called (I had his phone number, as he was my ‘go to’ guy while dad was in Florida) arrived after dad was in the room, and I went out to tell him that dad was dying… I’ll never forget the look on his face. Nobody was expecting things to change so drastically. Both of those friends had seen dad the day before, when he seemed to be doing better. Looking back, it’s likely that the diverticula had already ruptured, and the pressure was relieved, so he felt better- but that started the cascade of toxins in his system, that ultimately caused the septic shock which is what killed him.
During the time in the room, the nurses were fantastic about watching dad’s comfort level. Even when someone can’t verbalize how they feel, it’s easy to watch restlessness, picking at blankets or clothing (dad kept trying to remove his gown, so I just took it off and kept him covered with the sheet and blanket), moans, etc. I was there from the time he got to the ER that morning, and alone with him after 9:00 p.m. or so, when the others went home. I wanted that time alone with him, knowing that those were going to be the last hours I’d ever have with my dad.
The nurses would come in periodically, and ask if I wanted certain things done (blood pressure, blood sugar, catheter, etc). I agreed to anything that was for comfort (the catheter helped decompress the gas that had built up in his bladder, but there was already no urine being produced). Nothing was going to be fixed by having his arm squeezed for a blood pressure reading (but I did agree to them doing it if they needed it for paperwork; they didn’t). His blood sugar wasn’t going to get better (he’d been on steroids for the spinal cord pressure, which are known to elevate blood sugar, as can infection). I’d had to make the same decisions when my mom died. Dad had deferred to me once he knew that mom wasn’t going to recover from her sepsis caused by a urinary tract infection that was blown off at a hospital in Sun City West, AZ (not Mayo). It was a horrible repeat of her death in many ways.
For almost four hours, I was alone with dad. I’d sort of flip flop between ‘daughter’ and ‘nurse’ mode. Sometimes, I’d sit in the recliner by his bed and just listen to his breathing, never wanting it to stop, but knowing that he needed to get some perfect peace. Other times, I’d sit on the bed, and hold his hand or stroke his cheek with the back of my hand, telling him how lucky I’d been to have him for a dad. I reassured him that I’d be OK, but that I’d miss him. I let him know that I knew he’d been working so hard to go home, but if he was ready to rest, it was OK (it’s important to let people know that if they die, loved ones will be OK). The nurse medicated him a couple of times when his breathing indicated that he was likely uncomfortable. And, I’d cry, knowing that ‘it’ was going to ‘happen’ soon. Those hours were both precious and excruciating.
Finally, his breathing eased into a gentle rhythm. There was no struggle. He just slowed somewhat, and then his breathing gradually and gently slowed to a stop. I was sitting on the bed with him when he went to be with the Lord. There was a single facial ‘contortion’, and then ultimate peace and healing. He was reunited with mom (they’d been together for 46 years), and his love after mom had died (Marilyn- 8 years). He got to see his two sons who had died as newborns, within a couple of weeks after their separate births. He was reunited with many friends and family. And, most importantly, he was finally free of the pain and fear that had gripped him for many weeks.
It’s only been a little over a month since dad left this earth. I will always be so thankful for the 52 years I had him. He was my biggest ‘cheerleader’, and always had my best interests in mind. I miss him. A lot. But with hope in the promises of the God I believe in, I know I’ll see him again.