Emergency
A learning experience I'd rather not have had.
On Friday, March 13th (because of course, Friday the 13th), I got a call from Mike’s memory care facility just before 5:00. He’d been more off-balance than usual that day, the aide told me. Now he was running a low-grade fever of 100.2 and didn’t seem like himself. Not really an emergency, but she wondered whether I might want to take him to the ER and get him checked out. I told the aide I’d be there right away.
By the time I arrived, maybe 15 minutes later, Mike couldn’t sit upright. The staff had seated him in the wheelchair another resident left behind, the one they use for occasional transport, because there was no way he’d be able to walk out of the building. They’d tucked pillows between the right armrest and his body. Even so, he was nearly folded in half. I considered, very briefly, asking them to call an ambulance—but within a few more seconds, I realized it would be faster for the staff to help me load Mike into my car and take him to the ER himself.
So that’s what I did. I drove him to the closest hospital, not the one we usually visit, because I was terrified and I wanted to get him help as quickly as possible.
By the time we got to the ER—now maybe 40 minutes since that initial call—Mike’s fever had spiked to 102.6. It took half a dozen people to get him out of the car and into an examination room. Mike was, at that point, dead weight, and he’s not a small man. (I lost track of how many people asked me, over the course of the weekend, “How tall is he?”)
Mike’s heart rate and blood pressure were also elevated at the ER, though they’d been normal the last time his vitals were checked. Someone drew blood. Someone inserted a catheter, to collect a urine sample. I agreed to flu and covid tests, because why not? More information is better than less.
The doctor who later read Mike’s labs diagnosed a UTI that had progressed to sepsis, as well as Flu B. He recommended IV antibiotics and overnight observation. The problem was, this small “neighborhood hospital” version of a large local hospital system was set up for only a small number of overnight patients. They were definitely not set up for someone as complex as Mike.
That meant transport to one of their larger hospitals, and that meant waiting hours for an ambulance. Mike was stable, at that point, so we weren’t at the top of anyone’s list. I understood that, naturally—but sitting in a freezing cold triage room for five hours is no one’s idea of a good time. Particularly not a person who has dementia.
I did have plenty of time to text my kids, though. I had planned to visit them in Austin that weekend; instead, we arranged for one of them to drive down to San Antonio and stay with our dog overnight. Millie Maxine is not, shall we say, the steady and sensible type. I didn’t want to think about what might happen if she were left alone for who knows how long, and I couldn’t deal with one more worry.
At the next hospital, every person I spoke to was stunned that the first doctor we saw had recommended only overnight observation.
“I don’t think there’s any chance this guy is going anywhere until at least Monday. Maybe Tuesday,” said the nurse I met the following morning—a man who would refer to me only as the wife for the rest of our stay. “They tell you that to get you to agree to being admitted, but weekend discharge doesn’t happen very often. Plus, with a virus and a bacterial infection?” He shook his head and gestured toward the bed where Mike lay sound asleep. “If we were in Vegas, I wouldn’t make that bet.”
I wasn’t agitating for Mike to be discharged. He was clearly in need of medical attention. But every time I asked someone for any clarification of our timeline—mostly so I could figure out how to help my kids schedule their time—the person I was speaking to looked at me like I was insane.
“You think he should go home like this?” a doctor asked, when she finally showed up on Saturday morning, gesturing to Mike’s still mostly lifeless body.
“No,” I said. “That’s what I’m telling you. I don’t want him to be discharged. He’s obviously not well. But I told my kids he was only going to be here overnight because that’s what the other doctor told me yesterday evening. I need some idea of how long I should plan to be here with him, since he can’t be left alone.”
Mike wasn’t a threat to himself as long as he was unconscious, but I knew the moment he started to feel better and wake up a bit (which happened later that evening), he’d want to get out of bed. Non-stop pacing is one of the main symptoms of his dementia; combine that with his weakened body and a brain that didn’t understand why he couldn’t get up and go about his life and you’ll understand why I was already preparing for a whole new level of catastrophe.
More than one person mentioned that the hospital could provide a sitter if I wanted to go home. But my questions weren’t about wanting to leave, and a sitter would only solve one small problem temporarily. No one else would be able to advocate for Mike, or describe for nurses and doctors and case managers his cognitive baseline. Without my input, they’d have no way to know whether they were seeing an improvement in his condition.1
Saturday evening, when things started to become much more difficult, the nurse said he’d contact the doctor and ask about prescribing something to help Mike calm down. He offered Benadryl as a stopgap measure.2 That didn’t help Mike relax—he was gesturing wildly all night, as though he were having a silent conversation with someone I couldn’t see—but it did, at least, keep him in bed.
My son had come to the hospital for a few hours on Saturday, so I could go home and take a shower, change my clothes, and get something to eat. He did the same again on Sunday afternoon. Then my daughter came down from Austin on Sunday evening; she planned to be my Monday relief person, just in case Mike’s discharge plan changed. At that point, I wasn’t trusting anything anyone had said.
At one point, trying to talk myself down from a psychological ledge, I decided to think of this as a learning opportunity. I had, in fact, learned many things:
That neighborhood hospital was not the right place for Mike to receive care, so we won’t go there again. We could have avoided a hospital transfer (and the cost of an ambulance ride) if I’d just gone to a larger hospital in the first place. That would have meant only 10 more minutes in the car.
I will never request that Mike be transported to the hospital where we finally wound up, if I have a choice about where he’s going.
Late in the evening, the only way to access a hospital is likely to be the emergency room—so that’s where I’ll go first. Even if the EMTs who are transporting Mike tell me “You don’t need to go to the ER—he’s already been admitted, so you can just go straight to his room.”
Hospitals are not set up for patients with dementia. Doctors and nurses have to be reminded, over and over again, that they’re dealing with someone who can’t respond to direct questions or advocate for themselves.
Hospitals are in the business of caring for patients, not caregivers—not even the kind of caregiver who’s basically at the bedside 24/7. Until Sunday night’s nursing shift change, no one had asked whether I needed something to eat or drink, an additional blanket, etc. When an excellent nurse finally did, it brought me to tears.
One bad nurse among a group of what turned out to be four different people isn’t a terrible average—and the other nurses were pretty fantastic. (A side note: if you’re a healthcare professional, please always remember that you might be dealing with a novelist. I have absolutely no trouble providing extensive, specific, and relevant detail supporting my evaluation of my experience with you.)
There are services through which I can hire temporary, supplemental caregivers when Mike needs help after a hospital stay. I made a good contact with one of those services after Mike’s discharge, when it became clear that being out of the hospital is not the same as being okay. That extra help isn’t cheap, but the peace of mind it provides is absolutely worth the cost—especially for overnight care.
I was pretty proud of myself for reframing the experience this way. Then I made a quick check-in appointment and talked to my therapist on Tuesday morning. She pointed out that this is, in fact, another version of the hypervigilance I’ve always employed in an effort to keep Mike safe from things I can’t control.
“Don’t get me wrong,” she said. “It’s good that you’re learning how to handle situations like this, because this probably isn’t the last one you’ll be dealing with. But learning this stuff isn’t going to fix anything. You’re still going to be stressed out the next time this happens, because that is the normal way to feel when you’re dealing with a medical emergency and someone you love is really sick.”
Now that the crisis had passed, though, she encouraged me to find some time to sit down in a quiet room as soon as I had the chance. Just sit there. Take some deep breaths. Let go of whatever stress I was still holding onto. That probably wasn’t going to happen unless I actively cleared the space to decompress.
Do I even need to tell you this? I wept. I sobbed. I wailed.
And poor, sweet Millie Maxine—who’d also had a rough few days—wandered over to my chair and lay down beside me. She didn’t know how to fix what was wrong, but she wanted me to know that whatever it was, I wasn’t going through it alone.
Later, one of the staff members at Mike’s memory care facility would tell me that this is the hardest part of having their residents hospitalized—especially when that person has no family involved in their care. It’s almost impossible for facility staff to get through to the relevant nurse and describe someone’s baseline, which makes diagnosis and treatment all the more challenging.
On Sunday afternoon, our nurse was present during the doctor’s rounds. “The wife says he’s pretty agitated and wondered if there was something we could give him to help calm him down,” he said. Which is how I learned that he had not, in fact, forwarded the previous evening’s concerns to the doctor’s attention, because she immediately prescribed Ativan. That made a world of difference.
UTIs are common and cause their dementia to worsen. I agree completely that most hospitals in the US are not prepared to deal with patients with dementia. I spent 8 hours with my parents with dementia in the ER in June after my mother fell and dislocated her shoulder. After diagnosis, the nurses kept saying they wanted to keep her for observation. My father was wandering and getting lost, my mother was agitated to an almost violent level and as I assisted her to the bathroom, several times, she was punching me and trying to “escape.”😳 I turned to the nurses station and insisted on being discharged in ten minutes or “She will run around naked with her hair on fire,he will wander into a surgical unit, and I will have to be checked into a psych ward”. They made the discharge happen. I cannot imagine what would happened if she was left alone. I hope we never have to find out.
Breathe. Rest. Nurture yourself. It’s a very tough road. Keep writing. We are here for each other. A community of caregivers.💜
Hospital environments are so so difficult for those with dementia- each visit, my father worsened considerably upon returning home. I'm so sorry that you both had to experience this.
Something I just experienced and I'll offer it in case it's new to someone else and useful. I was in the ER recently in the middle of the night because of a kidney stone. I was given an IV antibiotic and sent home with a rx for antibiotics too- both third generation cephalosporins. Now I'm 53 with no dementia, but the effect of these drugs on me where like I had dementia- confusion, loss of time and reality awareness, extreme lethargy. I had a headache I couldn't shake. I had physical symptoms too - red flaming cheeks, raw mouth, and eventually tiny blisters on my hands.
I read up on antibiotic toxicity (I did have minor renal impairment bc of my stone issues, but nothing that should've triggered these extreme effects) and it is an issue for many elderly in hospital who are given third and fourth gen antibiotics of any kind via IV especially.
So if your loved one is getting IV antibiotics and their dementia symptoms worsen or appear if they don't have a dx of dementia, please inquire about the antibiotic they are taking and question whether it is negatively affecting them.
[This isn't to imply the patient quit taking any antibiotics, but perhaps try a different generation or even class of antibiotic].