Category Archives: Personal Life

Cabbage Day [Updated]

So the other day my friend Leo got a call from his cardiologist confirming an appointment. As I’ve mentioned before (post 1, post 2), Leo and his father are staying with us while Leo recovers from heart problems and a stroke. We had set up an appointment with his cardiologist for last Friday in preparation for heart surgery, but according to the call he received, the appointment was not on the day I had in my calendar. I called the cardiologist to find out what was going on, and the office staff had no idea what I was talking about. They had the same date for the appointment that I did.

So maybe Leo misunderstood the message. He has aphasia from the stroke, so he has trouble communicating with people, and it didn’t help that the message was one of those robo-call appointment reminders, which left him unable to ask for clarification. This was really not a good way to communicate with a stroke victim.

Eventually, I figured out what was going on. This call was actually from his cardiac surgeon rather than his cardiologist. Apparently, the surgeon had visited him while he was in the hospital, and somebody had set up a followup appointment, and not bothered to tell us about it.

Actually, we’re pretty sure they told Leo about the appointment, but this would have been a few days after his stroke. I’ve mentioned that his mental abilities are improving every day. The corollary is that his mental abilities were much worse when all this started. He remembers very little that happened during that first week after the stroke.

(This sort of thing was a common occurrence when dealing with Leo’s healthcare providers. A few days after this call we got another call about a cardiology appointment we had never heard of. This time it turned out to be a cardiologist who saw him at the second hospital and wanted to do a followup. We agreed there was no reason to see two cardiologists and cancelled the second one.)

Anyway, since the cardiologist and the surgeon are located a few minutes apart but about 50 miles away from my home, we got the surgeon’s office to reschedule their appointment to the same day as the cardiology appointment we already had, with a tentative surgery date of the following Wednesday. However, when Friday came, the cardiologist’s office called to cancel the appointment and asked if we could reschedule for the following Monday or next Friday. Suppressing my annoyance at the scheduling issue and the fact that these people clearly do not talk to each other, I explained that our surgery date meant next Friday was too late, so we’d be there on Monday.

It was still a busy day. We met with the surgeon’s office nurse, and she asked us a lot of questions and explained the process to us. The whole staff seemed very efficient. Then we were off to the neighboring hospital for pre-operative lab tests and a chest X-ray. Before I even got the car started, however, we got a call from the surgeon’s office. After we had left, the surgeon decided he needed a CT scan of Leo’s head, and in the time it took us to walk out to the car, his staff had called the radiology department to set it up. All we needed to do was tell the receptionist.

That all went relatively quick, and with the afternoon off because of the cardiologist’s rescheduling, we decided to drive over to Leo’s house just to make sure everything was okay.

Leo is something of an amateur naturalist, and last year he killed off all the grass in his yard so he could replant it with wildflower seeds native to the Illinois prairie. When I last saw the place, the prairie flowers had grown in a few feet high and looked pretty thick, but when we got there on Friday afternoon, almost a month later, Leo’s yard had turned into a spectacular explosion of dozens of different types of plants towering over my head and teaming with tiny wildlife.

Leo also likes to feed the local critters — birds, deer, raccoons, skunks, cats, etc. — so he can take pictures of them, but it looked like the feed bags he keeps in his house were starting to attract bugs, so we dumped them out at the back of his property so the local fauna could chow down.

(In my neighborhood, uncontrolled plant growth and feeding wildlife would piss off my neighbors and probably get me cited and fined, but it’s amazing what you can get away with when you live in an unincorporated area far from the prying busybodies in town government.)

While we were there, we started Leo’s car and moved it a bit so the tires wouldn’t develop a flat spot. (I don’t know if that’s really still a thing with modern tires.) We also rebooted the home network, which was behaving a little weird, and tidied up a bit.

On Monday, I stayed home to work while my wife took Leo to the cardiologist’s office. While they were there, the surgeon’s office called to say they needed some kind of approval from his primary care doctor. After a bit of a pissing match between the two offices, Leo’s doctor managed to get them in late that afternoon, which pretty much killed the whole day.

On Tuesday night, Leo ate his last meal before surgery. He then took a shower using special soap. This morning we got up at 4am, and he took another shower with the same stuff. I guess the idea is to minimize the chance that the surgical team will pick up contamination from a non-sterilized part of Leo’s body.

We were ready early, so we left early, just in case we ran into unexpected delays during the drive. We didn’t, so we got to the hospital an hour ahead of time. Eventually they brought us into some kind of prep room where Leo changed out of his street clothes. The anesthesiologist visited. The surgeon visited. They explained what would happen. They started an IV. And then we sat around and both dozed off until they came to take him an hour and a half later.

I’m in the waiting room now, trying to keep calm and keep occupied.

Leo is having open-heart surgery. It’s a cardiac artery bypass graft, abbreviated to CABG, which all the cool kids apparently call “cabbage.” Basically, as I understand it, they will knock him out and then open up his chest and cut through his chest bones to get at his heart. Then they hook him up to a heart-lung bypass machine that oxygenates and circulates his blood. This allows them to stop his heart. With the heart immobile, the surgeon can splice grafts into the cardiac arteries using relatively unused blood vessels from Leo’s leg. He’ll try to add as many grafts as he can, to maximize blood flow to the heart muscle. When he’s done, they will restart Leo’s heart, wire his chest back together, and then close him up. He’ll recover in the ICU for a day or two, and then they’ll move him to a regular room

As you might guess, this is not a sure thing. The heart-lung bypass lines can come loose, or he can start bleeding where they’re connected, or the machine can cause his blood to form clots which will enter his blood stream. The surgeon could make a mistake. A blood vessel could tear. His heart might not restart. Leo could start bleeding internally after the surgery. And there’s always the risk of infection.

Leo’s surgeon is apparently one of the best. The hospital staff speaks highly of him. Leo’s doctor says he’s the guy she’d want if she was having the surgery. From what they’re saying about him, I get the feeling he’s the kind of surgeon from whom medical students learn how to behave in the operating room.

And yet… there’s a small chance — but not small enough to be negligible — that my friend Leo will die. I can’t really grasp that. I can’t imagine what it would mean to me if Leo were gone. What haunts me now is thought of making that hour-long drive home to tell Leo’s wonderful father that his son is dead.

Really, though, I’m mostly OK. The surgery will in all likelihood go just fine. It usually does. There aren’t a lot of complications in Leo’s case, and everybody seems real confident. So the odds of failure are probably pretty small. Less than 1-in-100. Maybe less than 1-in-1000. In one sense, that’s terrific. But it’s still probably hundreds or thousands of times greater risk of death than on an ordinary day.

Well, an ordinary day for an ordinary person. With Leo’s heart problems, he’d be very likely to die soon without the surgery. So he has to have the surgery, and there’s no point worrying about it because neither of us can do anything to change the outcome. Leo has made the only decision he can, and we’re just going to have to see what happens.

Leo has been totally cool about that. As for me, as I sit here waiting for the surgeon to finish his work and come out and tell me how it went, I’m wavering between somewhat cool and somewhat freaked out.

So, I’ve got my laptop plugged in, I’m on the hospital we-fi, and I’m waiting.

Update:

Surgery is over. Everything went well. He’s just been moved to the ICU. I’ll drop in on him there — because for some reason everyone expects me to want to see him unconscious and on a respirator — and then I’m outta here. There may be drinking in my future.

(I’ve changed names, places, and other details to protect my friends’ privacy.)

Fun and Games With the Sick and Elderly

It’s been a little over a month since my friend Leo had heart failure and a stroke, and things have been very busy around here. As I mentioned, Leo had been planning to go into the hospital for heart surgery for a while, and since he was the sole caregiver for his 87-year old father, we had been planning that I would help take care of him by visiting him every other day.

At least that was the original plan, when Leo found out he needed heart surgery two years ago. For various reasons, some medical, some logistical, he kept having to put off the surgery, until last month his heart gave out and he had a stroke. And during that period, it turns out that things had changed. Things my wife and I were unaware of.

For about a week and a half, we tried to follow the original plan of making the 100-mile round trip to visit his father every day or so. Gradually, we realized that Leo’s father was not as independent as we thought. For one thing, his dementia is a little worse than we expected. He’s not totally out of it, and he’s able to live by himself surprisingly well — microwaving his own meals, taking his own medicine from pre-filled pill containers, and even doing his own laundry — and that fooled us for a while.

Eventually we realized that he was more forgetful than we realized, and that we would need to monitor him more closely. We decided the only thing that made sense was to bring him to live with us. It was already the weekend, and we knew we weren’t ready for him over yet, so we hired a home care service to help him out for three hours every day during the next week, with us still coming over most evenings as well. This would get us through until the following weekend, which would give us time to prepare the place.

Meanwhile, we were dealing with a medical mystery. Leo’s father was a diabetic, and his blood sugar levels had started rising since his son went into the hospital. We had a list of his medications, and there was no insulin, so it looked like he managed his diabetes with pills and diet, as evidenced by the supply of healthy low-calorie frozen dinners in his freezer. Our best guess was that he was eating too many of his favorite meals rather than a mix of healthy ones, so we began to shop for increasingly low-sugar/low-carb foods, and that seemed to help.

What neither of us knew is that Leo’s father was taking insulin. Or rather, he was supposed to be taking insulin. It turns out that the list of medications we had was only for filling Leo’s father’s pill boxes. Leo managed the insulin separately, since he didn’t want his father taking it by himself.

(I had asked Leo in the hospital if he managed his father’s diabetes with pills and diet, and he confirmed that he did. I knew not to entirely trust that answer, because Leo was often confused, but we had also asked Leo’s father if he took insulin injections, and he said no, so I felt pretty confident. In retrospect he must have misunderstood the question.)

We started to figure all of this out when I finally got Leo’s father’s primary care doctor’s office to send me a list of his medications, conditions, etc. I called his doctor immediately, and he told us that given the glucose levels we were seeing, the amount of time he had gone untreated, and the lack of any symptoms, we shouldn’t be too concerned. Just get him back on insulin again.

We went over that evening to get him started on the insulin. You’re supposed to take daily insulin in the morning, but we felt that giving it to him in the evening was better than nothing. Now that we knew what to look for, we immediately found a couple of boxes of insulin pens in the refrigerator. Then we had him test his glucose levels. They were perfectly normal.

There was no way we were going to dose him up with insulin and then just leave, because he could start to crash and we wouldn’t know it. So we just left things the way they were. The next day, a visiting nurse from the VA came to see him, and — thanks to a home care worker who gave him some high-sugar soft drinks she found in the refrigerator — his insulin was sky-high again. So the nurse dosed him up good and, with the help of someone at the VA, helped us figure out a proper insulin schedule.

The following Saturday, in an operation that went much smoother than it should have, we brought Leo’s father to live with us, along with his clothes, toiletries, meds (with insulin cold-packed for the trip), pillow, blankets, easy chair, iPad (for movies), bathroom scale, and binoculars (for bird watching).

Fortunately, this coincided with the beginning of our planned two-week stay-at-home vacation, so we had plenty of time to get Leo’s dad integrated into our household. It also gave me time to go back to his house for his microwave oven, so that he wouldn’t have to learn to use ours, which was also awkwardly located for him. I also prepped Leo’s house for vacancy by taking or discarding all perishable foods, emptying and shutting off the refrigerator, turning the air conditioning up to 87, setting some lights on timers, and installing an alarm system and security cameras. I also let the neighbor know we had moved him out and notified the Sheriff’s office so they could check the house periodically.

Meanwhile, while we were trying to take care of Leo’s father without putting him into a diabetic coma, Leo himself was working his way through the recovery process. He was transferred from the hospital where he was initially admitted to another hospital that had a good rehab program, and he immediately began receiving physical therapy, speech therapy, and occupational therapy. This was about 20 minutes closer to where I live, so I had little trouble continuing to visit him every other day or so, and he continued to get a little better every time.

After maybe a week, the discharge planning nurse called me to tell me they were ready to move him to a nursing home for rehab. They sent me a list of facilities that were covered by Leo’s insurance and asked me if I wanted to pick one. I wanted to find one that was close to me so I could visit more often, but after doing some research on the Medicare website and Yelp, I decided to go with one of two nursing homes that were near the hospital. I took a quick tour and was impressed by the cleanliness and preparedness of the staff of both, so I went with the one that was closest to the hospital, on the theory that they were used to working together.

Leo continued to improve at the rehab facility, and after a week or so they contacted me to let me know they were thinking of discharging him, if we could take him in. That had been our plan all along, but this call came the week after we took in his dad, just as we were getting settled down.

That touched off a whole planning session for how to arrange the spare bedroom to hold a second bed. The bed that was in there was queen size, and we could fit another bed in next to it, but there wouldn’t be enough room between them for someone with a walker. Eventually, I got the idea of putting in a twin bed at a right angle, which would leave enough space for both of them to use walkers, but that idea was blown up when the home care service announced they were sending us a hospital bed for Leo. We considered not taking it, but they pointed out that he still had heart surgery coming up and would probably need it then. So we ordered another twin bed to go with the hospital bed and took out the queen size bed, which is now leaning against the fireplace into our family room/library.

Part of the discharge process from the nursing home was for me to receive caregiver instructions. So made a special trip over during the day, and the physical therapist explained to me the proper procedure for Leo to stand up from a chair and sit down safely, and which foot Leo should move first when climbing up and down the stairs. He also had me bring my car around so he could show us how Leo could get in and out of a car.

Leo and I agreed later that this training was mostly useless. I’ve taken care of someone more disabled than Leo before, and we’re both overweight, so we’re both used to moving carefully. For better or worse, pushing off the arms of a chair when standing up is not a novel idea for either of us.

On the other hand, you know what would have been nice to receive training on? The ZOLL LifeVest wearable defibrillator that Leo has to wear everywhere. Basically, it’s a cloth vest with EKG sensors and defibrillator shock paddles that snap into interior pockets, connected by a cord to a portable control box which is expected to sense dangerous fibrillation in Leo’s heart and if necessary, administer a shock.

I learned how it works by visiting the company website and watching their training video, which explains how to change the batteries and how swap the sensors between vests when it’s time to change to a new one. It also explains the alert sequence that occurs when it detects a problem with the patient’s heart: First the vest vibrates, then it emits a series of increasingly loud warbling tones, then it announces that bystanders should stand clear and not touch the wearer, and finally it extrudes conductive gel from the shock paddles and administers a defibrillation jolt. Rather annoyingly, all the LifeVest documentation refers to this as “treatment,” presumably to avoid alarming patients by admitting that it will electrocute the crap out of them.

In some sense, I guess I didn’t need training in how the vest works because Leo had been taught to take care of it himself, but it would have been nice to have been told what the LifeVest did and how it works. In particular, the control box has two buttons on it that the patient can press to stop the shock. In engineering terms, this step implements the condition that only a person who has lost consciousness is in need of defibrillation. For that reason it’s really important that only the patient operates the buttons.

So anyway, the rehab place sends Leo home to us on Saturday, and he and his dad have a reunion. Without the nursing home staff looking over his shoulder, Leo abandons his walker and quickly discovers that he can walk well enough without it. Everything is going fine.

And then later that evening the warbling alert tone starts on Leo’s life vest. Leo is standing up at the time, so he presses the buttons that prevent the vest from shocking him. He says he feels fine. And then the alarm goes off again. This happens several times in a row. He tells me it does this all the time and it’s nothing to worry about.

I’m not entirely convinced, but what really has me freaked out is that even if there’s nothing serious going on with his heart — and we’re pretty sure there isn’t because he’s still conscious — every single time that alarm goes off, it means that he’s within about 30 seconds of getting a painful electrical shock to the heart. Every single time. A few weeks of dealing with that and I’d be a nervous wreck.

Anyway, as I’d hoped, having Leo around makes our lives easier rather than harder. He’s still pretty messed up from the stroke, but he’s got it together enough that he can help take care of his father, which is a big load off our minds, because we knew we’d have a lot less free time once our vacation was over.

It’s a little weird, though. Leo has aphasia, which means he has trouble expressing himself, but that doesn’t necessarily mean his thinking is impaired. For example, one evening he told us that his father’s blood sugar was too low, “About 150.” That’s actually pretty normal, but when I checked the glucose meter myself, it was actually around 50, which is much too low. Leo had read the meter correctly and diagnosed the problem, but he was unable to say the number accurately. Similarly, he has trouble saying the numbers on his father’s insulin injection pen, but he can still do the math to figure out how much insulin to give his father and then set the pen correctly by counting clicks.

And of course, Leo has far more experience taking care of his father than we do, so he can spot subtle clues about his father’s health, such as the sluggishness that indicated low blood sugar. Leo also understands his father’s needs better than we do, and can point them out to us, even when his father is too polite to mention it.

For example… You remember when I mentioned that his father was only eating very healthy low-calorie meals? Leo had something to say about that. At first, all he could say is that his father needed “big food” not “small food.” After some back-and-forth, we eventually realized Leo was talking about low- and high-calories meals. He was telling us that the low-calorie meals were his meals, which he had been eating to lose weight. His father, on the other hand, had been eating normal nutritious foods. What must have happened is that by the time we showed up to do grocery shopping, his father had finished most of his food, so all we saw in the freezer was Leo’s low-calorie diet meals. We assumed that’s what his father normally ate, and so that’s what we bought for him. And he was far too polite to ask for better food.

In other words, over the past few weeks we managed to run a 78-year-old diabetic man’s blood sugar way up…and then starve him with a weight-loss diet.

No harm done, apparently, but…Yeah, it’s a good thing Leo’s here.

(I’ve changed names, places, and other details to protect my friends’ privacy.)

 

 

Some Friends Of Mine Are Having a Very Hard Time…

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.)

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