When Words Fail: How Advocacy Brought My Dad Back
Finally got the last load of laundry added to the coin operated dryers at what looked like an old saloon turned laundromat in a small town in Wyoming. My watch vibrates. It’s my mom calling. I have plenty of time for chat while I wait so I answer. Her first, “Hey”, made my stomach drop. I always seemed to have a strange sense of detecting when something was wrong when either my mom or step-dad (who I refer to as dad) called.
My mom tells stories like me. We must start at the beginning, we must give you every detail, and we must go in order. It’s a wonderful gift at times, other times people wish we’d get to the punch line. In this case, she started the scene in real time and followed with the flashback and the details made all the difference. “Your dad was taken to the hospital.” Thoughts swarmed my head. Did he fall? Did he have a stroke? A heart attack? Taken? That means she didn’t drive him. Something’s got to be really wrong. I spoke with him the day before. He wasn’t feeling good. Mom proceeded to tell the story. She said he stayed in his chair asleep longer than usual, but she had been busy most of the day and didn’t pay it much mind. It’s not unusual for someone to sleep more if they’re feeling a little under the weather. Later she came back and saw he was still in the same spot, his now old breakfast sandwich still sitting on the nightstand untouched. In the early evening mom retired to bed. She tried to get him to get up and come to bed but he wanted to stay put. She fell asleep. She woke up hours later and again woke him up asking him to come to bed. He finally said he would. She went back to sleep. Awhile later she faintly heard her name called. She woke up again to find dad on the floor. He said he didn’t fall but that he kind of slid off the bed as he tried to get on. The problem was his legs wouldn’t let him get back up. She asked how she could help but he didn’t want any at the time. He just wanted something moved closer so he could continue to try on his own. Eventually, she fell back asleep. Assuming he would be able to get up. Eventually, she saw he was not accomplishing the goal. He stayed adamant that he didn’t want help but as the time passed mom grew more and more concerned with his situation. Dad was living with obesity and a chronic severe back deterioration. There wasn’t anything my mom would’ve been able to physically do to help him. She wanted to call for help but he refused - until she couldn’t stand to see him like that anymore. Dad was disoriented and saying things that didn’t make sense. She wasn’t sure if it was the medication just really getting to him or if something else was going on. He had just started a new regimen of weight loss drugs and supplements that his dr had put him on. Was this causing some sort of reaction? She called neighbor to see if he might know how to help but he couldn’t either. My cousin came but also to no avail. Mom finally had to do what dad didn’t want and called 911. The firemen arrived and for some reason didn’t bring the right equipment to lift him and dad was fully dead weight. A couple of strong burly ones were able to lift with their bodies but dropped him. Eventually they got a net and were able to get him up and on gurney. We all assumed that this must be from his back injury. He’d had pins and a cage put in about a decade before but the bone around the hardware was crumbling. He was on pain management at that point and it was definitely affecting quality of life. There were even times over the years that we noticed little hints of the medicine seeming to mess with his mind but it’s what you expect when on strong meds.
Mom said that they were checking him out and would keep me posted. I asked if she wanted me to come home. She didn’t think it necessary since it was probably a back issue that could hopefully be rectified with a procedure or something. I tried not to worry or jump in and try to take over. At this point the only thing I could do was wait to hear. I knew mom would tell me if it was serious. So I left it to the Drs to do their job.
That evening I got the call that dad was septic. Immediately my heart speeds up, my antenna is raised. I know that word and it’s not one that has great outcomes in my experience. I asked why, how, but there was no answer yet. Just more mystery, more tests to come. She said that she had taken him to the hospital that was closest to his back dr group. While they were going through the initial check in, my cousin had arrived to be there with mom and help where she could. She noticed when she went to hug him that he felt hot. She told mom and suggested she use the machine and take his temp. She did and he definitely had a fever. She called the nurse back in and that’s when they ran the tests to find that he was septic and had sugar in his urine. Now the question was did he have trouble getting up because of his back or because of the sepsis and when did he get it. How did he get it? Were his kidneys okay? They looked over his body and couldn’t find any abrasions that might’ve allowed the bacteria in, so now they started questioning what might be in his body. They started him immediately on a heavy duty antibiotic to try and get s head start on whatever the bacteria was. They had run tests but had to wait to find out if we were dealing with MRSA or MSSA (non-mrsa). Luckily, the results finally arrived and we were dealing with MSSA. A much better scenario to have. The CT and MRI were clear so we were relieved that there was not a CVA in the mix. He was still very disoriented and would forget sometimes where he was or what was going on.
Bloodwork showed a lot of abnormalities and when I checked Dr google it pointed back to Ketoacidosis and liver injury and what is already known with infection. These were also side effects of that new medication. Rare, but still listed. They did another MRI finding his liver enlarged. They also found what they called interstitial opacities and radiologist notes said that it could be interstitial edema. Which is basically fluid in the space surrounding blood vessels in lungs which is what comes before pulmonary edema. According to Dr Google anyway.
Dad wasn’t responding to the medications the way they wanted him to so they sent him for another brain scan. The dr wanted to find the source of infection and though perhaps it was in the hardware in his back, maybe it had an abscess. They sent dad for another MRI, but due to the reduction in pain meds he was in so much pain he couldn’t lay still in the machine so they were unable to proceed. After more tests came back they said his kidney disease had progressed to stage 3b. They said he had systemic inflammatory response and was diagnosed with toxic metabolic encephalopathy. They started him on a different antibiotic once they knew the strain. We were hopeful it would be generate a positive outcome, but things were still unstable.
Mom finally gave the call I’d been waiting for. I think you should come home. Scott and I were already prepared and had been heading south so it would be easier for me to just keep going if the call came in. I beelined it back to Dallas. I think it took 2 days but to be honest it’s a blur.
Dad finally started having improvement in his kidney and liver functions, but sepsis was still there and he couldn’t sit up, stand, or walk. A CT showed something on his back so a Neurosurgeon was called in to evaluate. They did a TEE to check that infection didn’t go to his heart. The hospital started him on PT but not only was the pain excruciating which stopped him from being able to sit up very well, but he still didn’t have any strength in his legs at all. They were concerned and were already thinking he’d need to go to a rehab facility after his release. He was still having issues cognitively, especially at sundown. Something common in patients with Alzheimer’s and dementia. The hospital assured us that it was the encephalopathy and common to happen in hospital settings.
Finally we got news. It seemed good because an answer is better than none. They did indeed find an abscess on his psoas muscle. They drained the abscess and only got out about 12cc. They did an extremely painful procedure but it wasn’t what the dr asked for so he had to have another painful procedure the next day. All while on pretty much only Tylenol at this point for pain. The only good thing was they were starting to see results with the meds and his lucidity was returning to somewhat normal. He was still struggling in PT, but they continued to work with him as best they could. Then came the talk of release. As dad became stable, the hospital was getting ready to send him elsewhere. He still couldn’t walk and there was no way mom or me would be able to take care of him in that shape. There were basically 2 options. Rehab hospital or a nursing home with a rehab section. We wanted the hospital. We knew his only chance at recovery would be if he could get PT multiple times a day. If he went to the nursing home, there was a chance he’d become a long term resident. We were not okay with that. The dr said that his chances of going to the nursing home were high because in order to get into rehab hospital he would have to be able to do the PT 3x a day and currently he was struggling with 1. This is when I’d finally had it with everyone. I went to the Dr and said how can you expect him to do anything. He has been on pain management for a decade on really high doses, you took him off everything and in his weakest moment expect him to get up and sit on the spot that is causing the most pain. Then you want him to stand while he’s barely able to breathe sitting. I said put him back on what he was taking before. Let his body get into his normal, then let’s do some real PT. She didn’t like the idea at first, but agreed to try.
We finally got improvement! The next day, he stood up in PT and was able to hold it for a few minutes. They were shocked and so happy. They couldn’t believe the difference. With another few days of this they and we felt there would be no problem at the rehab facility. Until we got the news. Insurance wouldn’t approve him to go. They were basing their decision on previous doctor notes and not what was currently happening. We immediately filed an appeal. We came down to the wire, and we lost. Dad would be going to a nursing home and now we needed to find the positive and figure out how to keep him just as motivated and on top of it there as he would be at the rehab hospital.
The day of transfer, mom and I received dad’s release papers and the medicines were not what we had just gotten him switched back to. It was the old order with the lesser meds. Of course the regular dr was not in that day and the dr filling in was reluctant to change the paperwork. But he did. Another set was given to the paramedics that were to do the physical transfer.
Dad was brought to a nice large room at the facility. My cousin went to town and got all the things to spruce up the room and make it seem more like a home than a cold room. The staff all seemed nice, but I was immediately concerned when it was time for his meds and they weren’t bringing him all of them. I brought it up to someone in charge. She showed me the discharge papers she received from the paramedics. It was the wrong one. I could feel my blood start to boil. I showed her the discharge paper we had with the correct meds and dosages. She said they would take care of it. I learned later they never did. I spent the day with him as mom went home to get a little rest and let the dogs out. After they brought dad his IV antibiotics he started to dose in and out. My best friend called so I spoke to her for a few while sitting next to him. At some point dad started talking and it didn’t make complete sense. I got that scared feeling again but then thought, calm down, it’s probably just because he’s half asleep. I had to leave the next day out of town to head to a funeral. I felt less nervous since he was seemingly stable and was making improvements. Mom and my cousin were with him so hopefully all would be good. Plus we were hitting the weekend where nothing ever really gets done.
Dad saw the head of OT and PT and felt very encouraged that his rehabilitation was possible and would be good. But then we started noticing little things that were a problem. They didn’t have the man power to help him with things like using the bedside bathroom and instead of encouraging him to continue as he’d done at the hospital they tried to encourage him to revert backwards. We were furious. After only a couple of days there, a deep concern for his progress settled in our minds. Each of us trying to put the positive spin on everything as much as we could while fighting the fear brimming underneath. Then we got the call.
There was a third party that our appeal went to and they deemed dad as fit to go to the rehab hospital. A light at the end of the tunnel. We got the transfer scheduled and he was sent to one of the best rated ones in our area. He arrived in the evening so his checkin was not the usual. He was brought to his room and no more than 10 minutes went by before an angel walked in. Her name was Sparkle. Literal ray of sunshine. She came in with the most positive upbeat “happy to be here” demeanor I’d ever seen in a medical setting. She was able to get dad situated as though he were a mere 5 lbs. She knew what to do and you could tell she enjoyed doing it. She told us how she’d been working 5 jobs to put herself through school. She was working to get her RN if I remember correctly. Her presence immediately disarmed me and alleviated what other fears I may have had. Dad was in the right place. The next day was full of meetings. Dad met with his new team of drs, his PT and OT team and was given a course of how they would proceed with his recovery. The dr didn’t like the meds he was on so he decided to change at least one of them and the dosage of the others. We were at their mercy so we just had to hope. Dad had a great day and we were all really excited about what was to come. He even sat in a chair while visiting with my cousin and her boys. We were talking about all sorts of things, then dad spoke up and added to the conversation, yet it was very unrelated. He seemed to think it was though. We tried to question him, to see what he meant and really to see if that confusion had come back. The more he tried to explain the more confused he seemed. We called in the nurse. They checked his sugar and it was pretty low. We got him something to combat that and thought the sugar drop just got to him. We all left that evening while mom came up for the late shift. A couple of hours later she called. She said he still wasn’t making sense. Said he had a fever and hadn’t peed since 4 that morning. Possible UTI but we weren’t sure yet. She said he was getting even more confused and she was scared that maybe he had a stroke. He was shivering and in and out of coherency. The next morning I got up super early to make sure I was there for morning rounds. Thankfully I made it before his Dr came by. I explained my concern and wondered if it had to do with any of the med changes. He didn’t think so but decided to take him off everything except 1 as needed. It seemed extreme, but I’m not the dr so what do I know. That day only proved to be worse. Dad would be fine one minute and then the next he was not making sense. PT and OT witnessed his incoherency as well. I explained that he’s not normally like this. That he was before at the hospital but it got better with the antibiotics. They didn’t know him so they didn’t understand. By that evening he was much worse. He started hallucinating, and would pretend to eat. He would grab for something in the air and then pretend to put in his mouth even though his food was right there. I helped him with the meal until he wouldn’t eat anymore. I asked for the nurse to call the dr because now he was in much worse shape than before. He reverted back to no longer being able to sit or stand on his own. He was completely dependent at that point. The following morning I raced to make rounds again and caught the Dr. I said mom noticed he seemed to be getting worse after he’d have his IV. Suggested that maybe there was some kind of reaction going on. He said he doubted it and said it’s still the only thing saving his life so he would need to stay on it. I suggested that maybe we could go to the hospital but he said, “what could they do there that they couldn’t do at here?” I was left with a pain of not knowing what the right thing to do was. We fought so hard to get him in the rehab. Insurance would only cover 2 weeks or so and we’ve already wasted 3-4 days of them trying to figure out what set him back. But the worst was we were afraid if we pushed to go back to the hospital that he wouldn’t get to go back to rehab and they would send him back to nursing home. The nursing home that in our opinion didn’t take care of him.
The Dr called for dad to meet with the speech pathologist who was concerned with how slow and out of it my dad was acting. She asked if this was normal and I emphatically said no. They continued his PT and OT using a hoyer lift to get him out of bed and into chair. I went with him to group only to see he was barely even moving. He was a zombie. He was shaking and twitching off and on, still hallucinating, forgetting who people were, and more. My cousins and I became consumed with trying to figure out what could be causing this sudden turn. We researched medical journals and studies hoping an answer would finally appear. And then it came. There was a study showing that the medicine he was on for the MSSA could in rare cases cause all of the effects we witnessed. The delerium, the twitching, everything. The significance was that it was this medication in combo with other meds as well as the comorbidities that he had. The perfect storm. The study indicated that this combo of things could indeed cause his symptoms. The next day I told the Dr our findings. He said there’s a study for everything and pretty much said it wasn’t the problem. As the day went on, dad continued to spiral. Then a fill in for his PT came to take him to group while his normal therapist went to the staff meeting. She was harsh with him and in fact down right mean. It got to a point that we had words and then I had to walk away. Balling in a corridor, one of the nurses saw and tried to talk to me. I said I just needed to calm down. I was scared and it was getting the best of me. By the time she walked me to the elevator my tears were gone and I felt I could get back in there with my dad. Once group was finished they brought him back to his room and left him in the wheelchair. There was a break for lunch and then he would have speech and I believe regular PT. Mom had come up by this point as well. Dad, unable to move was a prisoner in the wheelchair. Not too big of a deal, until he needed to go to the bathroom. I pressed the button near his bed but nothing. I went down the halls looking for any of the techs, but couldn’t find any. Finally, I went to the nurses station and said that he had to go to the bathroom and was in wheelchair with no way to get up. The nurse turned to me coldly and said, “I’m in a meeting.” That was it. The straw that broke the camel’s back. I felt that the hospital was keeping my dad there for the money and not giving him the care he needed which was to go to the hospital. As I briskly walked the hallways looking for anyone to help, I called the social worker in charge of him to say exactly what I thought they were doing. I fought back tears as I angrily explained to her what was going on. And mind you, I’d been calling her on the regular as well. This wasn’t the first time. The speech therapist saw me in the hallway and asked if I was okay. As soon as I said no a flood of tears leaped out of my eyes while my face fought the tension of the choke to try and explain what was happening. She brought me into the head of PT’s office. I told them about the girl from earlier, the bathroom situation, the nurse, his decline, the Dr, all of it. I went to mom after I collected myself and said I think we should push for hospital. She agreed. So I called and asked for him to be transferred.
It was late before the ambulance came to take him. They brought him to the ER where he just continued to get more confused and now belligerent. He pulled the IV out of his arm sending blood all over the room. He wanted to escape. They were able to get it back in. It was a different medicine than the one he’d been on. But I wasn’t so sure that was a bad thing. He was uncomfortable and he was in and out of it. They did a few tests in the ER and finally moved him up to a room. We explained to the nurses what had been going on for the past month.
Once they got him situated, they called out his meds and made an order for the switch back to the suspect antibiotic. I didn’t tell them my theory yet. Figured I better tread lightly first. The next morning he actually seemed a tiny bit more lucid. The following day the drs ran tests. The infectious disease Dr came by and I finally felt like I could share my theory and ask for her to consider changing the medicine. She doubted that it was the medicine, but agreed to try and put the order in for a change. They came in and put leads all on his chest and tried monitoring his heart. He was so fidgety that they couldn’t get anything accurate. The neurologist finally stopped in and saw the condition he was in. He asked dad questions and he couldn’t answer them correctly. He saw the fidgeting and the twitching as well. I told him my theory. He said it was indeed possible and definitely we should try it. I explained that the ID Dr had already put in an order for a change so hopefully it would be soon. He said he was going to study his chart some more. Might want to do some other testing but would get back with us the next day. The night was rough. Mom stayed at the hospital because dad kept trying to escape. He couldn’t remember that he couldn’t walk. He ripped out his IV again and he was in a fighting mood. But the next day he seemed almost better. Not fully but I was ready to grab onto any hope.
By the early afternoon I thought he might be getting better. An old coworker and my cousin came up to visit. I had bragged about how well he was doing but then all of a sudden, he started not making sense again. It was a slow decline but he went back downhill. I thought we must’ve been wrong about the medicine. They had already changed it and now he’s bad again. It was discouraging and heartbreaking. I just couldn’t understand why he did so well that morning but then had a complete 180 in the afternoon. I was soon to find out. The next day the neurologist came back by. He said he went through all of dad’s chart and had some thoughts. He said the twitching and fidgeting was because he was going through withdrawl. He said one of the medications he was on, high dosages of, had been stopped without titrating and he was lucky it didn’t kill him. He then said what he feared had come true. When he checked to see what medication the ID Dr had switched him to, it was another that was in the same family and had known issues with the same symptoms. He immediately stopped the medicine and switched him to another. He said if this is the cause we will see him better in 72 hours. If not he would continue to decline and need further testing. The morning of the 72 hours dad woke up. And this time he really woke up. He was lucid. He knew where he was. He was back to normal. In fact maybe better than normal. We were so happy. The Dr talked to him about the medicine that he was suffering withdrawals from. He said even though pain management Drs disagree, from a neurological perspective he felt the dosage was too high anyway. He encouraged him to lower the dose from here on out just to protect his brain. The new antibiotics were working as well and now he had a good path forward. PT came by and had a better go of it than they had a few days before. Now we had the dreaded wait of if insurance would let us go back to rehab hospital. Finally we were notified he was in. Once we returned, I grabbed anyone I could find from before. PT, OT, speech, nurses. Showing them my dad now. They were in literal shock. Couldn’t believe it was the same person. He was assigned different therapists this time so she would get to work with them but they were so happy to see him with his full head back. Especially because they never saw it that way.
I spoke to the person who filled in for the social worker. I said what I was unhappy about is that we wasted all that time the first go round because they refused to send him to the hospital and I feel it’s because of wanting to keep the bed filled. I said I didn’t think it was fair that now that extra time would be put on us if the insurance wouldn’t cover the entire stay. Later we were told that he was approved and covered for another full 2 weeks plus an extra week to finish his last IV. Dad worked hard and got to a point that he could walk with his walker and wheel himself in a wheelchair. After 2 months of that nightmare he was finally released to go home. He had a few weeks of in home PT/OT. Today he’s doing so much better. He still needs the walker but he can get around more and has less pain. His drs found a better treatment for his weight loss that is succeeding very well. And with the reduction of meds he’s been more like the dad I’ve always known. He’s active and enjoying his life.
I tell you this story because sometimes we fear speaking up to drs. It’s our loved ones lives’ in their hands. We don’t want to insult them or do anything that might put our loved ones in danger of moving to the bottom of the list. The reality is this: 1. Squeaky wheel actually does get the oil, 2. Drs know a lot, but they don’t have every study in front of them. They have a protocol to follow and sometimes what ails is not on that list or not at the top of it. When our loved ones can’t speak for themselves or even when they can but feel afraid, we with their permission have to be their voice. Imagine the shape he’d be in if we’d all given up. Another thing is support. My mom, my cousins, and I rallied around each other and made it easier to deal. Each of us emotional and scared, but empowered by the ability to lean on one another. Each of us played a part in finding his true illness and he is alive and well today because of it. Advocate for yourself when you don’t have someone, but when you can be that for another, step up to the call. Don’t allow high emotions cause fighting amongst the support group. Instead have empathy for each of you as you are each struggling with fear and emotion. And remember everyone has a part to play. It doesn’t have to look the same. Some may only be able to participate from afar. Some can make the room feel like a home, some can discuss with the drs, and others can sleep on the couch to be there when things get rough. Just remember the loved one can win when surrounded by love. I hope this helps you or someone you know. Comment below, like, and share!