Well, certainly not on vacation. Any free time I’ve had recently has been spent on things like work (actual billable hours!) and the basics of taking care of our home (including, like, getting another new furnace in January). I don’t think I could have done this without Sue. And my brother came to help for two weeks in February.
If you don’t read anything after this, please get this at least: GET THE SHINGLES VACCINATION IF YOU’RE ELIGIBLE FOR IT. (((Okay?)))
Round One
Here’s what’s up. My mom got shingles in the middle of January. None of us quite knew what was going on, since she didn’t have an obvious rash, nor did she have the excruciating pain shingles is infamous for. There were about three days of increasing overall weakness, redness on half her forehead, swelling in her right eye, and, as she weakened, loss of appetite. Had she just slept "wrong," and not been drinking enough? She didn’t want to go to urgent care. So we tried telehealth. The telehealth doc had us hold the camera up to Mom’s forehead, and he said “go to the emergency room, this looks like shingles.”
So we went to the ER on 1/14, she was diagnosed with eye shingles and secondary bacterial infection. Hours later, she was returned home with a prescription for Valtrex and antibiotics. She’d had no liquids or food that whole day, pretty much. Not even an IV. And since it was now late on a Saturday, the drugstore the ER sent the prescription to was closed and would be closed until Monday. So Sunday, we had to get the ER to send the prescription to a different pharmacy. By the time we tried to get her to swallow the first medications she’d had since the afternoon before, she was too weak and dehydrated to sit up on the edge of the bed.
So, for the second day in a row, she went to the ER. This time, she was admitted, thanks to her overall weakness and dehydration, also because the swelling was starting to extend to the other side of her face, with both eyes nearly swollen shut. Not meaning to be mean . . . but Sue and I both decided Mom looked like “a prizefighter who’d lost the round.” She was in the hospital from 1/15 to 1/20. With IV fluids and antibiotics, she started getting better quickly. We visited her every day.
She didn't have much of an appetite, so we brought her food we were pretty sure she'd like.
Then, she went to a rehab facility from 1/20 to 1/28. She didn’t want to go there. She didn’t remember much (if anything) about her trips to the ER, and she still doesn’t remember much about the days before, and the days in the hospital. All she knew was that she wanted to be home.
I don’t think she really understands, yet, that a stay in a rehab place is not the same as being locked up in a nursing home. Indeed, the rehab place simply does the kinds of things that hospitals used to do “back in the day,” back when people stayed in hospitals doing rehab and getting stronger until they were able to go home. Anyway, Mom hated the rehab place.
. . . The food was pretty miserable.
And she felt the chair was uncomfortable. And she had to press her button well before she needed assistance getting to the bathroom. And the TV didn’t work like her TV at home. Also, her eyesight was messed up. She had several days of just having a plain old bad attitude. ("Hmm," I thought; "maybe the inconveniences and less-than-optimal situation can act as an incentive for her to do PT, so she doesn't have to return to a rehab place anytime soon!")
Dad and Sue and I tried to make it nicer for her. We visited her every day. I did my best with the TV. I read to her from her mystery book. Worried that she wasn't eating enough, I brought her Wendy’s burgers (single cheeseburger, no mayo, just the way she likes ’em), Arris pizza, Taco Bell taco supremes. You know—her favorites. As it was in the hospital, my “shift” was in the afternoons and into suppertime; Dad was with her in the mornings, through lunchtime, so he got to see her do her PT and OT.
The Wednesday, January 25 Debacle
A day that will live in infamy. So, until 1/25 (the day the insurance made the decision to deny her a second week in rehab), she was experiencing no pain. But that day was a debacle. First and worst, Mom started getting the excruciating pain associated with shingles early that morning. For the following several weeks, she’d get an attack about once every 3 to 5 hours, and even though the attack would only last about a single minute, it was incredibly draining on her. Her whole body would tense up; she’d cry and whimper. It was so hard to see. So that began early in the morning on Wednesday, 1/25—the same day Mom had an 11 a.m. appointment at the University Hospital’s Mason Eye Clinic. The rehab place said they’d transport her there—we were to meet her at the front entrance to the hospital at 10:30. Dad and I were there at 10:15 (I’d spent the night in Columbia, since snow was predicted overnight, of course).
So, it got to be 10:45, and Mom hadn’t appeared. I called the rehab place (the name rhymes with “The Snuffs”), and the nurses said they were on their way. Around 11, she still hadn’t arrived, and when I called again, “the driver dropped her off; she should be there.” I said, “Well, she’s not here.” More time elapsed. In between these calls trying to find out where the heck my mother was, I was reporting to the receptionists at the eye clinic: “Well, they SAY she should be here!” Wouldn’t it just figure that they’d finally get Mom to her appointment, and the eye place say, “well, you weren’t on time, so we have to reschedule you.” Ughhhhh!!! . . . Next time I called the rehab place nurse, she said, “Okay, they had dropped her off at the eye clinic on Keene Street. She’s on her way now.” So finally Mom showed up, and the eye clinic saw her at noon, a full hour late.
Mom had been dropped off at the wrong University Eye Clinic. The driver hadn’t paid attention to the words “UH - Lobby floor” instruction on her transportation papers. He’d wheeled my mom into the Keene Street eye clinic, asked her if she saw her daughter (me) anywhere, and poor Mom had used her one reasonably good eye and tried to oblige him: “Yes . . . I think that’s her over there.” And the guy just left her there! Without verifying if it was really the right person or not. Jeez!
I don’t know how they figured this out. Was it the rehab place nurse who contacted the driver and told him to go back? Or did eye clinic staff at the Keene Street location go over to my mom, look at her papers, and call the rehab place? The mind boggles.
Anyway, it was a rough damn day. The eye clinic doc had good news for us: her eye is improving. As to the pain that had just started to occur, she said that a regular MD is the one to talk to about starting on pain medication. So as soon as we returned to the rehab place, I got with the nurse and asked if their staff doctor could start her on something. “I’ll relay the message to the doctor.”
End of First Rehab and Back Home
For the rest of Mom’s time at the rehab place, she was never prescribed anything more than the over-the-counter Tylenol she has always taken for her chronic back pain (indeed, I think they effectively took her off that, since they deemed it “upon request,” and Mom wasn’t thinking to “request” it).
So her pain attacks continued, and each agonizing episode strained at muscles she hadn’t used in years. The pain attacks just wrung her out. As a result, even though her first few days in rehab showed steady improvement, she didn’t have much of a net gain in strength while she was at the rehab place. The rehab place's doctor didn't prescribe anything for her shingles pain, although we asked again and again.
Mom felt it was a betrayal for us to try to get a second week of rehab for her, but anyway, our appeal for another week was denied, so she came home on 1/28. On Monday, 1/30, we took her to see her regular doctor, and he started her on gabapentin, a pain medication that must be increased only gradually, to avoid side effects. On 2/1, I had my first entire day at my home. On 2/2, my brother flew to Missouri to be at Mom and Dad’s house. He helped with the transition to visiting PT and OT practitioners, and visiting nurses keeping tabs on Mom’s health. He also helped Dad with Mom’s various medications and with tracking her pain attacks.
Soon after Mom returned home, Sue noticed my parents’ house seemed dry, and we figured out that their humidifier wasn’t turned on. A phone to their HVAC company revealed that their service contract hadn’t been renewed, so we had to get that reestablished (yeah, now we’re in the twenty-first century, with the monthly payments automatically deducted from their checking account, and automatic renewal, instead of being paid by check once a year, and renewal activity having to happen each year). Fortunately, the HVAC company sent a guy out right away to do the maintenance and turn on the humidifier. Hopefully Mom’s eyes and skin wouldn’t seem so dry, right?
Did we all need extra things to take care of? No, but I was so glad my brother was able to help with another issue that my Dad hadn’t gotten to—linoleum removal, cleanup, disinfection, and de-molding of the basement laundry room, where the sewer had backed up a few times, including once while my brother was there (n.b.: “flushable” wipes are not truly flushable). I’m so grateful he was able to assist with dealing with the company doing the work, and with the insurance company, which (yayayay!) is paying for nearly all the work, including duct cleaning and rebuilding part of a closet that had gotten affected by the sewer backup. Indeed, that project isn’t quite finished—but it’s getting close to completion!
We had some good times while my brother was in the state. The family had a little Super Bowl party (and the Chiefs won!); and we served Mom and Dad one of their favorite meals: pork sausage patties, fried apples, and mashed potatoes. Another night, it was my homemade shepherd’s pie! My brother and I even went out for a bro-and-sis lunch at Ozark Mountain Biscuit Company, one of our new favorite restaurants.
The day before he flew back home, we took Mom to another doctor appointment; since her pain attacks didn’t seem to be helped much, he increased her dosage of gabapentin. That night, we had a pre-Valentine’s dinner. The next day, we drove him back to the St. Louis airport. Things were looking hopeful!
More Bumps in the Road
Mom had another eye appointment on 2/16; the doc found uveitis (inflammation between the cornea and iris) and put Mom on prednisone/steroid eyedrops (one drop per waking hour), and started her back on Valtrex (antiviral medication), since the steroid can open the way for a reemergence of the shingles.
Meanwhile, the gabapentin dosage was being ramped up—in hindsight, too much too fast. Mom was getting weaker and her vision was still bleary. By the weekend of 2/18 and 2/19, the pain was finally abating, but within a twenty-four-hour period between 2/19 and 2/20, Mom had ended up on the floor four times. Sooooo . . . another ambulance trip back to the hospital. And another week there.
The pain medication seemed to be the culprit, so they took her off the gabapentin and put her on a different pain medication (pregabalin). They also started her on two blood pressure medications. They’d noticed orthostatic hypotension (BP drop when she stands up) apparently related to the gabapentin, plus old age and poor physical condition. But her BP was rather high when lying down. They put her on two BP medications (midodrine to raise it, lisinopril to lower it—go figure). The eye docs reduced her steroid eyedrops to just twice a day.
Mom was doing pretty poorly, but she really wanted to go home. All the time spent lying in bed hadn’t helped her fitness at all. There was no way she was strong enough to make it up the stairs to the living room. She needed more rehab.
So after about a week in the hospital, Mom was transferred to a (different) rehab place on 2/24 and was there until 3/11—general weakness and a need to keep an eye on her BP. Another trip to the eye docs on 3/7 saw NO inflammation in her eye, and they started weaning her off of the steroid eyedrops. The eye doc took her off Valtrex and antibiotic eye ointment (she couldn’t figure out why they were still giving those to Mom, when she’d said for both to stop, like a week ago). I won’t go into how the rehab place had kept her on Valtrex all this time, and had somehow increased the eyedrops from 2x/day to 3x/day. What the hell?
So after two weeks at the rehab place, Mom came home again on Saturday, 3/11. I had a heck of a time figuring out the medicines, based on the paperwork they sent home with her. Apparently, they hadn’t been tapering off the prednisone at all; apparently they had taken her off it cold-turkey. (Though the next Monday morning, a nurse from the rehab place called and asserted they had, too been reducing it according to instructions. Hmm.) Also apparently, they had not been giving her the Tylenol she’s accustomed to, even though we’d made it clear she gets the maximum dosage every day, to help with her chronic back pain. Finally, I couldn’t figure out why the BP meds were being given so often and at the times of day they said, especially the midodrine, whose third dose they were supposedly giving her in the “evening.” What-what-what? That’s never to be given near bedtime.
Naturally, it’s pretty impossible to talk to medical professionals on a weekend. Why do they release people on weekends? Anyway, we got it figured out. (I think.)
Back Home Again: Time to Blossom
So at this point, Mom’s back at home, her doc’s taken her off of midodrine, she’s winding down on the prednisone drops, but she’s still on the pregablin (which seems to be taking care of the pain attacks, though the right side of her head is still really sensitive and zingy).
While Mom was at the rehab place, I installed a toilet-seat raiser with handrails onto her toilet, and Dad hired their carpenter/handyman to install additional handrails on the staircases, which made a big difference in Mom's ability to haul herself up from the basement garage to the floor they live on.
Mom's vision is still wonky: ever since her right eye reopened during the initial hospitalization, she’s had double (non-binocular) vision. The right eye isn’t in great alignment with the left. The eye docs think this was caused by inflammation, daily antibiotic ointment treatments (which make vision blurry), and general physical weakness, and so far they have resisted giving her corrective lenses that would act as a crutch; they’ve been hoping that her eyes will return to alignment and binocular vision as she improves overall and uses both eyes together. So Mom’s still struggling to read and watch TV—her two favorite activities.
Also, throughout, Mom has acted as if PT and OT is a hardship, an annoyance, a punitive sentence, an outrage upon her constitutional rights as a senior—but hopefully she will finally see that her doing regular physical activity is a key for her and Dad getting to live safely at home for as long as possible. For years, her doctors have told her to simply get up and walk around the house a little, and Mom always nods and says "yes."
But back at home, she always has an excuse for not doing it: “my back hurts; I just got up; doesn’t walking to the bathroom count?; I’m tired; I’m old; but I can do that!; well, shouldn’t Bud be having to do exercises, too?” (Note that Dad has been doing PT and other exercises of various sorts for years; the issue with him is that he wants to do too much!) The day of her return from the rehab place, I suggested Mom do some little marchy-steps while seated, and she complained that she should get at least one day to relax at home!
Mom does PT when a physical therapist is there to have her do it; and the PT folks have told her again and again to do some exercises during commercial breaks, or get up and walk around between TV shows—but when Dad or I remind her to move, she doesn’t listen to us. She just sits there. Lord knows I’ve beaten this drum enough the last two months. Let’s hope she takes it to heart; I’m tired of nagging her about it.
Yeah, it’s been rough emotionally, too. It’s been so frustrating, trying to convey to my mom the importance of her taking care of her body via three simple things: drinking, eating, and doing even just light exercises. But my frustration really doesn’t matter. We’ve all been frustrated! This has been incredibly difficult for my mom, who did everything she was supposed to do to treat her shingles; she did the PT at the first rehab place, and did it well; then she got discharged half a week after her pain attacks started. The doc and nurses at the rehab place let her down by not addressing the pain right away. Then, once she finally got a prescription for pain medications, nearly a week after the pain began, it took ages for the pain meds to build up to hope to do anything. Then, finally, the pain meds were too much and she started falling down. Then, another stay at a hospital, and then rehab and PT all over again.
For someone who hadn’t spent a night in a hospital in like thirty years, never seen the inside of a “rehab place,” and who’s not used to taking much medicine at all, my mom’s had to swallow a ton of it. And the indignity of people making decisions for her. This has been a huge disruption in her life. And who the heck can figure out the weird TVs in the hospital and rehab places??
She can't even see to read her mystery books. . . . Boy, I'd have my crabby moments, too.
Dan, Mom’s physical therapist at the most recent rehab place, told me he’d told my mom that when she goes home, it’s her “time to blossom.” He, too, encouraged her to get up several times throughout the day to walk around, to do some seated exercises during commercial breaks, and thus reclaim her strength and independence. “Time to blossom.”
We’ve had some crabby conversations, but since she’s been home, Mom has been taking the bull by the horns, sort of. She’s been putting on nicer clothing, she’s more independent with toilet habits, she’s been eating more, drinking more, and not raising a big ruckus about medications. I’m not sure she’s doing much physical movement, but hopefully she’ll get some benefit from home PT visits soon . . . before there’s some other bump in the road.
Posts
