Some friends of mine are having a very hard time, and I just need to write about it.
At about 4:30 on Wednesday, my cellphone goes off with an incoming call from my friend Leo. Leo never calls. We communicate by text message (encrypted, lately) and sometimes email, so I kind of figured something was wrong. He’s my age, and he’s taking care of his 87-year-old father, who has some health problems. So I’m not expecting this to be good news.
The conversation goes something like this:
Leo: “I think I’ve just had a stroke and I need to go to the hospital. The problem is my father is almost out of food and I was just about to go to the grocery story. Can you come over tomorrow and do some grocery shopping for him?”
Me: “… Did you call 911?”
Leo: “No. I guess I should do that.”
So we discuss the importance of him calling 911 for another minute and then hang up.
A few minutes later, I text him back “How’s it going?” I figure if I don’t get an answer, I’m going to have to figure out how to get an EMS response at his house, which is about 50 miles from where I live. He calls me back and tells me he called 911.
My wife gets home and we drive out to his house. Along the way, we call the hospital he’d most likely go to, and he isn’t there. We reach out to the Nortown Fire & Rescue department, and they tell us they have no information but they’ll look into it. Lacking any further information, we decide to go to his father’s house. It is, after all, what Leo asked me to do, and it’s the only place where we know we can help.
Thirty minutes later, Nortown Fire & Rescue calls back. It turns out the call was handled by county emergency resources, not the town, but they’ve found out my friend is in transport to the hospital. We decide to keep on going to his father’s place.
Leo has heart problems, and we’ve discussed the possibility of my taking care of his father if he is ever unable to, so a few years ago he gave me a key to his home. The thing is, Leo is a tech geek, and his front door is electronic, so the key is just a piece of information stored in an app on my phone. We’ve tested it, and it works just fine. So it was something of a surprise that it didn’t work this time.
My wife and I start ringing the bell and knocking on the door and yelling for a while, but nobody answers. A neighbor comes over. She saw the emergency vehicles and wants to know if we know what’s going on. I give her a brief answer and ask if Leo’s father is home. She doesn’t know.
I go walking around the house, trying to see inside, and through one of them I can see his father calmly working in the kitchen. He’s a bit deaf.
We ring and knock some more, but no luck. Eventually I think to check if I have his father’s cell phone number in my phone, and it turns out I do. Amazingly, he answers, and after a minute I get him to understand that we’re at his front door, and he lets us in.
It got easier after that. I went grocery shopping while my wife kept him company. She gave him both our numbers and added them into his phone. I visited the next door neighbor and gave her a mission: If she sees anything unusual, like the father wandering around outside or EMS showing up again, or he comes over and asks for help, please call me. She agreed to do so.
After that we go see Leo at the hospital He’s still in the emergency department, although they’re getting ready to transfer him to the ICU. He’s groggy, in and out, and a bit confused, but we tell him we took care of his father, and he looks very grateful to hear that, but I don’t know if he’ll remember. We didn’t get to talk to his physician — it was getting very late and we had a long drive home — but after talking to his nurse, it turns out he had heart problems. To me, this makes more sense than a strokes since he had already had one or two minor heart attacks.
He was trying to talk to us, but the effort just made him start coughing, so we decided it would be better if we left. I managed to snag his house keys so my next visit to his dad would go more smoothly.
That was Wednesday. Thursday was a normal day. The hospital told us that Leo’s vital signs were improving, and we got in touch with Leo’s father who said he was doing fine as well.
On Friday, I get a call from an MRI technician at the hospital. He wants to know if I know if Leo has any metal in his body. (Someday I must find out why such a sensitive and versatile magnetic imaging system can’t detect pieces of metal ahead of time.) I ask what’s going on, and he tells me they need more information after a CT scan showed a large infarction in his brain. That means he had a stroke after all.
That evening, we went to see Leo’s father again. We didn’t tell him what I’d found out, since I had very little information. We didn’t want to give him bad news on little more than a technician’s comment. And we need to think this through.
While we were there, my wife got him to agree to call us that night when he had taken his meds. He did, but he didn’t answer when I spoke to him, and then he hung up and called back about ten more times, each time saying nothing. We were just about to start the drive back to his house to see if he was alright, when he finally got through and explained that his fingers were a bit shaky at the moment and he was having trouble operating the touch screen on the phone. We stood down and went to bed.
On Saturday, we got the word that Leo had been transferred to a regular hospital room, and we went to see him. It turns out there was rather a lot of bad news.
One of the doctors gave me a description of what happened. It turns out he had congestive heart failure, which turns out to be the good news. It’s a relatively manageable condition, and he has essentially mostly recovered from the episode. His vital signs are healthy and his lungs are almost clear. The cardiology team hadn’t yet reported in, however, so they may very well want to do some procedures while they’ve got him.
The bad news is that he did indeed have a stroke. I’m assuming that one of the clots affecting his heart was dislodged during the event and traveled to his brain. It was described as a pretty large infarction, which appears to be a way of saying the stroke caused some brain damage. He’s not a vegetable, nor does he seem to have any major paralysis. His face isn’t sagging. When we visited him, he recognized us and held a conversation that was in many ways ordinary and normal. He also seems to be in relatively good spirits, although that could be an effect of the drugs.
He’s missing a few things, however. His arm and leg on one side are weak or difficult to control — He described them as “not being there,” which sounds like there’s something wrong with his kinesthetic sense.
More troubling, he seems to have a hard time processing symbolic information. He recognized my wife and I instantly when we walked in, but later when the doctor asked him our names, he was unable to come up with my wife’s name, and he used his own name when referring to me. He also chooses the wrong word for some things. I had loaned him some camera gear, and was trying to tell me I could take it back, and he referred to it as a “telephone.” Lots of technical things seem to be “telephone” to him. It’s like he’s got a concept that he’s trying to come up with a word for, and he can’t find the word, so he uses one that is conceptually nearby.
This is all pretty devastating. Leo is a technical geek like me. He has two college degrees, and he used to teach at a nearby college. One of his hobbies is photography. And now his ability to understand symbolic information, technology…just isn’t there. Despite his fondness for the word “telephone,” he can’t figure out how to use the one at his bed.
On the other hand, he has no trouble understanding that he’s in the hospital, and he’s asked questions about how we’re taking care of his father. The other day he had the nurse call me to ask if we had turned on the air conditioning for his father, because it was a hot day, and he was pretty sure he had left it off on the day of the stroke. (He was right. I turned it on.)
This is obviously going to be a lot of work. I’ve already talked to Leo about a medical power of attorney, and some folks at the hospital are going to help us set it up. His doctor asked him if it was okay, and Leo gratefully said it was.
As for his father, I’m going to have to be able to talk to his doctor and get information about his medical condition and the medications he’s taking. I think I’ll probably have to figure out how to get a medical power of attorney for him as well.
There’s also the problem of money. The good news is that Leo doesn’t have a job. Instead of working, he’s been staying home and taking care of his dad. I know they have some investments, and I think his father has retirement income. The reason this is good news is that it means his illness isn’t going to reduce household income.
The real problem is going to be getting the bills paid. Everything is fine for the moment, but I don’t know how long this will go on. I keep having this mental image of Leo driving a stagecoach with his father in the passenger compartment. Now Leo has passed out, but the horses are still running. Sooner or later, if someone doesn’t take the reins, their lives are going over a cliff.
I’m going to have to figure out how to manage all this for them. With my parents, all I needed was a financial power of attorney, but this is a more complicated situation, not the least because I’m not a relative.
Meanwhile, I’m trying to spin up some social services for the father. I’ve reached out to the Illinois Department on Aging, and they’ve referred me to a local aid organization, but they tell me it could be a few weeks before they can begin helping us.
The most infuriating part is that Leo and I were making plans for all of this. We knew he had to have heart surgery, and we knew I’d have to take care of his dad, and we knew it could last a while, so we had already discussed setting up powers of attorney, providing me with lists of doctors and financial institutions, and a bunch of other things. His traitorous heart just beat us to the punch.
I’m trying to find reasons to be hopeful. For example, Leo’s dad is much better at taking care of himself than my father was at that age. And I already have all the house keys and computer passwords.
There’s also the incident with the clock. The last time we saw Leo, his therapist pointed to the big digital clock on the wall and asked him to read the time. He was unable to. He had no clue how to do what she asked. Maybe ten minutes later, when we I started to wind up our visit, my wife said something like “Well, we’d better get going. We’re going to see your father next.”
Leo glanced up and replied, “Yeah, it’s almost five. He’ll be eating dinner soon.”
(I’ve changed names, places, and other details to protect my friends’ privacy.)