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.)