This is one of those strange narratives where the 'peak' of the story isn't the end. I kind of feel like I'm currently living through the epilogue of this story because 'I watched my mother die' really can't be topped. I guess I should start there... I watched my mom die on the morning of May 1st, 2023. As of now, May 6th, she's still alive, but I did watch her die. To understand all of that we'll have to travel backwards and then take it in chronological order.
If we start with her death, we have to back up to that morning. I woke up that Monday morning after a weekend of work with a migraine still revving its engines. I only got up to use the restroom but immediately saw that mom wasn't doing well. She said she wasn't doing well and her admitting she feels bad is itself a bad sign. Before that, Saturday morning I was at the computer getting ready for work when she screamed out. Her ICD had given her a shock. A big one. Backing up further, the previous Monday night or Tuesday morning (two AM) she walked out of her bedroom and fell down. Fell down hard. It took us an hour to get her up and steady enough to not call an ambulance, but she would continue to have trouble walking for the rest of this story. That same day, Tuesday, was her last day of anti-biotics. They'd finally detected a bit of Helicobacter pylori (H. pylori) and gave her an extreme regimen of anti-biotics to get rid of it. Earlier than that, they'd been searching for reasons her abdomen (her belly) hurt and why she was having a bad case of on-again off-again diarrhea. That had been ongoing since December.
That's a lot to walk through, and I'll get to it in just a moment. Before I really get into this though, I need to establish some facts. If you're a constant reader you'll already understand these things, but I want this post to be able to stand on its own. A way to clear my head on the subject.
- Mom has an ICD that also acts as a pacemaker.
- A pacemaker paces the heart, making sure it doesn't beat too low. In mom's case this was set between 40 and 60 beats per minute so it would only catch and pace if her heart really slowed down.
- An ICD (Implantable cardioverter defibrillator) is a device that's implanted and monitors the heart for bad/deadly rhythms and will shock the heart to get it out of that rhythm.
- She's had this for over 10 years and yes, it's shocked her several times before
- Mom's heart problems started a few years after dad died, so she's been going through some of this for over 15 years.
- She has COPD, meaning she has trouble breathing which puts more strain on the heart
- She has CHF, meaning her heart just doesn't work as well as it should
- She had a triple bypass in 2008 where all bypasses failed. Two were later stented, but she went through that massive surgery and had to recover from it without any of the benefits of it. She was bad before, but relatively okay... she was terrible afterward.
- Mom's general health has been trending down for years now.
- Her heart is worse, her breathing is worse, her appetite and gut is worse, her mobility is worse.
- It never feels like she can get worse but then something will come along and she just does. She gets worse overall.
- Mom hates hospitals.
- I imagine most people do in one way or another. She had to watch her husband go through multiple procedures and eventually cancer. She had to watch her father go through multiple procedures and eventually cancer. She had to watch her sister go through multiple procedures and eventually heart failure. She's had to go through multiple procedures and feels that each time she goes in these past ten years or so will be her last time... meaning she'll die 'this time'.
- I won't hit on each of the above experiences, but will say that her sister went in with a fairly minor problem with breathing. The breathing got worse and worse and worse and they finally had to put her in a bi-pap (a mask that forced air in and out of the lungs, basically forcing you to breathe). Talking through a bi-pap is practically impossible. By the time they took my aunt off the bi-pap she was going to hospice to die... so she never was able to communicate the last few days of her conscious life.
- Mom will undersell her problems to doctors
- She feels she knows her body and knows what the best solution is and wants to give the doctor just enough information to get the solution she's seeking.
- She also just doesn't like to complain.
I think that covers it. I might come back to add more if I feel it's important.
So, we'll start this back in December. She started having some bad abdominal pains that occasionally resulted in diarrhea. Yeah, some of this post will be talking about diarrhea. Bowel movements. Poop. Medically its very important so we'll just have to get over the 'gross' feelings. This went through the holidays and I finally convinced her that she needed to see her doctor. Her doctors explored a lot of things that could cause abdominal pain. You see, abdominal pain itself can cause diarrhea while a lot of the causes of diarrhea can also cause abdominal pain. It's a chicken/egg thing. As the abdominal pain issues are generally more serious, they explored those first.
None of these are quick. For example, they eventually wanted to do an EGD (put a camera down her stomach and take a look around for ulcers). That alone took almost a month to schedule, perform, and evaluate. Lab work, prescribing meds, bouncing between her general practitioner her cardiologist, her pulmonologist, and at that time her other pulmonologist that specialized in pulmonary hypertension.
Finally, halfway through March, they determined she had a small amount of H.pylori. H.pylori is a bad bacteria in your gut that more or less takes over. It can stop you from digesting a lot of food, give you severe diarrhea to the point of dehydration, and takes some powerful antibiotics to kill. It didn't seem like the obvious answer as it wasn't a large colony of H.pylori, but it was still something to consider and eliminate. If they got rid of it and the other symptoms went away, then that was the cause. If they get rid of it and the symptoms stay then it was something else and they just got rid of another problem.
The antibiotics they put mom on were flagyl and tetracycline. These antibiotics in combination should effectively kill H.pylori, but they'll also kill almost all of the bacteria in your gut. Understand, you need bacteria in your gut. Ironically, without those bacteria you'll get gut pain and.... diarrhea. Severe diarrhea. So yea, to treat mom's diarrhea they need to give her antibiotics that will give her worse diarrhea. But once the antibiotics are done all the H.pylori should be gone and she should get her normal gut bacteria back and she should go back to normal.
Everything was going to plan. I'd love to say it was going well, but halfway through the antibiotic run mom fell. Now, mom's mobility has been off for awhile. She'll wobble and stumble and she's fallen a few times. We've slowly put up hand rails to the basement, barred her from using the front stairs (they're concrete leading to an asphalt driveway, have a shaky handrail and are just plain too dangerous for her), and even installed a walk in shower for her.
Any fall can be bad. It depends on how you land. I'm sure most people have had falls that were embarrassing but fine. I'm sure many people have had seemingly minor falls that had lasting impacts. Well, this fall was bad. Her leg was bent in a bad way and it hurt severely. We had trouble getting her up and sitting on the couch and the couch was only two feet away. In addition to the pain, it was highly embarrassing as mom was getting up to use the bathroom. Remember the diarrhea? Well, fall like that and you're just not going to control it so we had to deal with that too. We finally got mom up, to the bathroom, got her cleaned up, and got her into her recliner where she slept the rest of the night.
In the morning it was clear this wasn't something she was going to walk off. She'd injured her leg. With all the family's health issues we have a lot of medical equipment in the house, so we brought up the red rollator. It's a fancy walker with four wheels, brakes, and a seat. Between that and my brother's and my help, she was able to get up and around but it wasn't easy. Especially with her frequent need to use the bathroom. The toilet is a 'tall boy' so it naturally sits higher than most toilets, but she still had trouble getting off of it. We got a toilet seat lift that she could get up and off of, but its position made wiping herself more difficult.
I don't think its difficult to see why she wanted to limit her trips to the bathroom. So she started to refuse food, even when she was hungry. Mom isn't a big eater to begin with and has lost close to 60 pounds over the last few years. This wasn't good as obviously she has to eat, but after explaining the importance of it to her, I respected her decision. I thought she was still drinking her normal amount, but should have suspected she was doing the same thing there.
That went on for almost a week when Saturday morning came. I was prepping for work when I heard her scream out. I jumped out of my computer chair with enough force that I broke it (and not to humble brag, but it was a $600 Secret Lab chair... very sturdy). Her ICD had gone off. Again, this takes a little explanation. An ICD going off sucks. It's an electric shock delivered right to the heart, strong enough to reset the beating rhythm. It HURTS when its a full capacity. I think the best way I've heard several people describe it is that it feels like you've been kicked in the chest by a donkey. But while it's dramatic and awful to experience and witness... it's not a bad event in and of itself. It's not a reason to call 911 or make a big deal out of. It was implanted to see bad rhythms and shock you out of them. Now if it goes off repeatedly, that's something different. But it saw a problem and fixed it. Done.
And modern ICDs like the one mom has, immediately reports what it did. It goes to the cardiologist's office and someone looks at it. If it was a particularly bad rhythm or something that needs more attention, they'll call. Now, this would have to be very bad as it was Saturday morning and the nurse that would look at it couldn't just walk over to the cardiologist and have his take on it. Unless the nurse saw something emergent, it would just wait until Monday morning. At least that's how I thought the process worked on the weekend.
So once Mom was calmed down, I finished getting ready and went into work. Sunday came and she said she felt better. I wasn't too aware of anything as I had a migraine coming on. A bad one. I refuse to call in to work on the weekends, even for migraines, unless its dire so I went in. That brings us to Monday morning. As I said above, I woke up early and needed to use the restroom. Walking out I saw mom sitting at the dining room table and she looked bad. She was pale, tired, and just haggard. When I asked if she was okay I expected to judge just how bad she was by how well she lied, but she told me the truth. She said she was doing bad. She said her ICD had gone off 'several times' in the night. I suggested she call for an ambulance, but she said she was waiting to call the cardiologists office. A quick look at the clock showed me it was only 15 minutes until their office opened, so I didn't argue. Instead I just got myself ready to go. I figured their answer, with multiple ICD events, would either be to head directly to their office or to head directly to the ER.
My mom looked up the specific number for the electro-cardiologist (the part of the cardiologist's office that handles the ICDs) but as she was looking up their number, the phone rang. We could only see that it was from the large health system as for some reason our cable company sees all of their phone numbers as spam and hangs up on them after a single ring. Mom picked up the phone and started dialing. A moment later, her cell phone started ringing. I saw that it was the cardiologist's office. Not wanting to answer her phone I showed her who it was but she mouthed that she was on the phone with them. A moment later MY phone started ringing. When I saw that it was the cardiologist's office I knew it was bad. I'm Mom's emergency contact.
Their line of questioning was immediate, quick, and told me everything I needed to know.
- Was she there?
- Was she breathing?
- Was she changing colors?
They wanted to know if her heart was currently working. It was THAT bad. They seemed relieved and asked if they could speak to her. Wanting mom to understand the gravity of the situation I took the phone from her and handed her my phone, telling her they weren't answering her call becasue they were desperately trying to call her and were now on my phone. Mom answered several questions with simple yes or now replies and ended with "Okay, but does it have to be by ambulance?"
They wanted mom to go to the ER via ambulance and specifically said she shouldn't let me or my brother drive her in. To me that is very simple, they want the life saving professionals and equipment at the ready even though its a 5 to 10 minute drive. Mom agreed, but mom being mom insisted on getting into different clothes "they're going to cut these off", to put her makeup on, and even insisted on finishing putting on a coat of nail polish.
I had told Mom long ago that I'd be he son first and not her nurse. I explained that it was more important to call the ambulance and get it coming rather than prettying herself up, but she insisted. I respected her choice even as I disagreed with it. While she finished getting herself ready I got my brother up. As soon as mom said she was ready I called 911 and got the ambulance on the way. I could see the paramedics didn't take it very seriously, but was glad they were there.
My brother and I followed to the hospital but it took them awhile to get her in and assessed. By the time we got back with her, I thanked the Goddess that we'd had the ambulance. Her ICD went off in the ambulance. And again while she was getting checked out by the nurse. And again while she was getting checked out by the doctor. She was hooked up to a cardiac monitor and I saw that her heart rate was spinning wildly out of control between a low of 60 and a high of 180. And it was doing that in just seconds.
Mom was scared.
I forget what exactly we were waiting for, but I had taken a seat next to her ER bed and was holding her hand when she screamed out that it had fired again. I looked up at the monitor and saw that her heart was going over 200 beats a minute. We all know it shouldn't be doing that, but I need to stress just how bad that it was doing that IMMEDIATLY AFTER BEING SHOCKED. And the rate was increasing. It wasn't 10 seconds later when it fired again.
This image will lie in my mind forever. I'm, by nature, a forgettable person. I don't remember what my best friend's faces looked like when I told them I was queer. I don't remember what Lynn's face looked like when I told her I loved her. I don't remember what Mom's face looked like when I told her I had passed the NCLEX and was now a registered nurse. But I'll never forget what Dad's face looked like when the life passed from his eyes. And now, even though Mom is currently sitting on the other side of a door from me, I'll never forget what it looked like when Mom died.
Her eyes almost immediately glassed over while her face completely relaxed. I've seen mom sleep before as I'm sure many people have seen other's faces in a relaxed sleeping position. This wasn't that. This was all muscle tone leaving her face as her entire body went limp. A glance at the heart monitor, that's screaming alarms by the way, showed her heart was still going well over 280 beats per minute (another by the way... that's about as high as cardiac monitors can read, so it may well have been faster). It'd be nice to think that her hear beating was good, but when its going that fast it is NOT pumping blood. There isn't time for the blood to pour into the atrium, get pushed into the ventricle, and then get pushed through the body. Mom's heart was just flailing, meaning that for those crucial seconds she wasn't getting any blood to her brain. It might as well have stopped.
The third firing of the ICD got Mom's heart back into a more stable rhythm just as the doctor rushed in. My brother and I stepped out of the way so the medical team could get to work, but that immediate crisis was over.
They got mom's heart to stabilize by giving her an injection of lidocaine. Yes, that's the same drug that numbs you, but in this case it numbs the heart muscles and lets it relax. When they got the lab results back they showed she had been so dehydrated that all of her electrolytes were out of whack, including her potassium. Most electrolytes... calcium, sodium, magnesium... have a bad side and another side. When sodium gets really low it's incredibly bad and deadly. When it gets to high it's bad, but not even an emergency. Potassium isn't that. It has a VERY small range of good. 3.5 to 5.0 mEq/L. 3.4 can be deadly. 5.1 can be deadly. Mom's potassium was 3.0. Her heart was just going to continue misfiring until that level was fixed.
Thankfully it's fairly easy to get potassium levels up. They gave her injections of potassium as well as oral potassium. They said that would fix the immediate problem and let them work on getting mom rehydrated and all of her out of whack electrolytes back into whack. We've spent over twenty four hours in the ER before waiting for a room. But within an hour of getting her the potassium they had mom moved into the ICU. Over the remainder of the day they found other problems, none of them too severe except for her lung problems. It seems when her heart was going haywire, it sent fluid back into her lungs. More or less, mom had pneumonia.
Now, that's bad on a lot of levels. Most hospitals worth their salt will kind of freak out if your pulse ox goes lower than 95. It's the measurement of how much oxygen is in your blood. Even someone like me, not in great shape, not a person who exercises regularly, smoker, keeps my pulse ox above 95%. Mom, because of her CHF and COPD stays between 88 and 92. All the time. When she exerts herself it can go lower than that. So of course they freak out and put her on 8 liters of oxygen to get her up to 94%. Mom only wears 5 liters of oxygen at home. Her cardiologist is fine with that level, her general practitioner is fine with that level, her pulmonologist is fine with that level. But we're not in their care a the moment, we're in the care of the ICU.
We finally left to give mom some rest. My brother and I planned on returning the next morning at 10:00. That gives mom time to wakeup, get her morning tests done, get some breakfast, as well as both my brother and I getting up and a cup of coffee in us. Know that we normally don't get out of bed until 9 or 10 in the morning normally, so yes this is early for us. Well, my cousin manages the hospital gift shop and had gone up to see mom. She immediately called or texted my brother that it was bad. Her oxygen had gotten so low in the night that they'd not only given her ativan to calm down, they had her on a bi-pap.
Yes, this is my Aunt's daughter so she's well aware of the history our family has with bi-paps. My brother and I got up there quick and saw the horror show we were afraid of. Mom was out of it, but conscious. She kept trying to take the mask off, she kept asking what was going on, she kept telling us she was thirsty, and all of our responses were that she needed to stop talking and that we'd talk to the doctor about getting the mask off later.
I was particularly pissed off as one of the side effects of ativan is to slow down your breathing. Great if your hyperventilating, terrible if you're barely breathing enough to keep the doctors and nurses happy. The team came by to do their rounds a couple very VERY long hours later. I say team because there were a dozen people doing rounds, not including the nurse assigned to the patient. They welcomed my brother and I to sit in with them and did a very thorough set of rounds, including saying that mom was having an anxiety attack early this morning and her breathing became strained, leading to the ativan and bi-pap.
They were ready to move on, saying nothing about taking mom off the bi-pap, so I gave the short version of mom's aversion and anxiety around the bi-pap itself. I asked if they could consider taking it off as soon as possible and not just wait until 'later'. The doctor was surprisingly compassionate and said he'd put the order in right away. 15 minutes later they took mom off the bi-pap. She was still mostly out of it, but was able to stay calm and keep her breathing good enough to maintain 95%.
Mom slept most of the day but did see the cardiologist. He was happy with her recovery but said that while she was in the hospital they needed to change the battery in her ICD. It had been in for about 9 years and was nearing the end of its usable life. Plus, each firing of the ICD took about a month's worth of life from the battery. So, it might or might NOT have enough juice left to fire again. So, that was scheduled for the next day.
I'm going to skip through a bunch of this now as the last week has been incredibly tiring. Physically, but also emotionally. I've also had a migraine through the entire week. I probably could have gotten rid of the migraine by staying in a dark room, taking my meds, and just relaxing for a day. Instead I went out into the bright sunshine, stayed in a busy and loud ICU and visited mom for 8 hours each day. My head was throbbing each night and wouldn't let me get any good sleep.
Mom got her ICD battery changed. The only issue with it was the process getting delayed twice (nothing to do with mom) so she couldn't eat or drink for almost 24 hours. NOT GOOD FOR POTASSIUM!!!! Her left shoulder is now tender but should recover.
She got ativan one more time and xanax the next day. The xanax was better as it calmed her more smoothly and didn't result in the bi-pap, but it also slows down breathing and couldn't be a long term solution. We got the ICU doc to get a psych consult and talked to a few psychiatrists. They agreed that mom had an ongoing anxiety issue and could benefit from a milder anti anxiety medication she could take every day. She's now on a mild dose of buspar.
Mom's leg, her physical trauma from being shocked dozens of times, and her general physical deterioration meant she had trouble getting out of the bed. She eventually got into a chair and was moving around okay. She still isn't as physically good as when she left for the hospital, but she passed the physical therapy assessment and could be released.
We got mom home late this afternoon. Getting her from the car and into the house was an ordeal, but it got done and she's resting in her chair. She'll probably sleep there tonight (maybe the next few nights) as both her leg and her shoulder still hurt. Getting in and out of her much taller bed would be problematic. As is, I'm still actively listening to her so that I can get out there when she's moving around. Even with the rollator, I think there's a chance she'll fall again.
I think the thing that's going to haunt me the most is that I should have been able to prevent this. I'm a God Damned nurse and should have seen the problems with her diarrhea, lack of eating, and lack of drinking. I should have suspected something other than simply falling down (her initial fall was likely her ICD going off) and got her to the doctor then. But I didn't. I got lost in my own issues and my own migraine and just let mom manage her issues alone.
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