My Parents Both Have COVID 19

And I’m pissed

coronavirus news on screen
Photo by Markus Spiske on Pexels.com

Why? Because this is another unnecessary episode in the $#itshow that has been 2020. Because we have now come to point where politicization of objective science and equally objectively ludicrous conspiracy theories apparently have equal merit in the name of “balance” in the news cycle.

There was a time when we as a nation rallied excitedly behind science to achieve the dream of a moon shot. Now we have a large percentage of our population that has been so bludgeoned by alternative “facts” as to be convinced that the wearing of a mask (as DOCTORS and SURGEONS do every day to protect and be protected) is somehow an infringement on their freedoms.

I know this argument has been made before, but indulge me, oh snowflakes who don’t want to wear a mask because it’s uncomfortable or you think it means that you get less oxygen or too much carbon dioxide, or, what? It leaves a mark on your face? It fogs your glasses? It messes up your makeup? It’s “the man, telling you what to do?” F*&k you. It’s a small sacrifice to make, and is a joke compared to the rations and other sacrifices this country happily endured, for example, during WWII for. . . what? The. Greater. Good.

The background

My parents are in their early 80s. Both have dementia. The last time my dad left the house (before the visit last week to the doctor that delivered his, and my mother’s positive diagnosis) was a month ago, when I took them for their flu shots. His vascular dementia has mostly affected him physically, rendering him incapable of most aspects of self-care, and now, the ability to get himself into and out of bed, or to even walk a few steps.

Mom’s dementia is different, likely exacerbated by hearing loss. She loses words. She gets frustrated. Agitated. Confused. Angry. The angry part was always there– I have said in the past that anger is her default emotion. The dementia amplifies it. As does the non-stop blaring of her choice of TV “news” media. I watch as it pushes all her fear and anger buttons. If faced with the unavailability of television, she will fall back to talk radio that stokes the same emotions. I used to try to discuss these things. It was fruitless. I was the enemy. I gave up in the name of peace.

Because of their dementia and its effects, we have caregivers in place to support them, 12 hours a day, seven days a week. I’m there several times a week, and recently, daily. When they received their positive diagnosis last week, I assumed that, despite all the precautions taken by their caregivers every day, either one of the caregivers (or I!) must have been the vector that infected my parents.

The plot thickens

Yet, all have tested negative thus far. Including me.

As I communicated updates to my sister last week, she enlightened me to something I didn’t know, which my mother had shared with her in a recent phone conversation. With apparent glee, she laughed while she told my sister how she sometimes “forgets” her mask when she goes grocery shopping (she may have dementia, but she knows she’s supposed to wear a mask. There is always one in her purse). She waits for someone to approach her to “remind” her before she’ll put it on.

So, let’s lay out our facts:

1) Everyone who has come into my parents’ home in the past two to three weeks has tested negative (I might also add that the caregivers are required to get tested every two weeks anyway);

2) My dad has had no contact with anyone during that time outside of their home;

3) My mother has gone grocery shopping at least twice in the past three weeks. While doing so, she has decided to sometimes not wear a mask while in public until someone asks her to put one on.

I should note that I offered, months ago as this all began, to do the shopping for my mother to keep her from being exposed. This irritated her. How dare I try to take away her one shred of independence? So I let her have her independence with a warning: “you’d better make sure you always wear your mask.”

I believe it is safe to conclude, based upon these facts, that my mother managed to be in the right place at the right time, failing to take the right actions, which made it easy for the virus to do what it does so masterfully: propagate itself through any available host.

The punch line

So here we are. It would be a stretch to arrive at any conclusion other than this: my mother brought this upon herself. And upon my father. So yeah. I’m pissed.

My mother used to be more rational, despite her propensity for anger. Now the toxic combination of her dementia, her emotional nature, and the constant drum of conflicting information she gets from the single-sourced media flowing into her brain have combined in the worst way.

But I bite my tongue and leave my rage in the car with every trip I make to their house to check in and take their temperatures and blood oxygen readings (three times a day). Overall their conditions have worsened in the past week, but they fluctuate from fine to concerning and back again.

It’s become quite difficult to find caregivers who are willing to put themselves at risk to help my parents. Their main caregiver has been a trooper, but the ongoing coverage is a juggling act. They receive full PPE from the agency, but these wonderful souls signed up to be companions and caregivers, not medical professionals dealing with a highly infectious virus. I don’t blame any one of them a single bit for opting out.

No perfect solutions

I’m working with the transitional care nurse at my parents’ doctors’ office to get visiting nurses in place as an immediate solution for ongoing assessment. That way I can stop putting myself (and, by extension, my husband, who has emphysema) at risk by taking their vitals multiple times each day.

Simultaneously, given the level of close contact that my father’s care requires, we all agree that the best course of action will be getting both of them into a COVID-certified care facility ASAP, where they would remain until they get the all-clear. So we’re also working on that. This assumes, of course, that their blood oxygen or other vitals don’t hit a point that demands hospitalization before that.

Don’t let this happen to you

If you’re in a high risk group, don’t expose yourself to this virus unnecessarily. Here are some ideas:

Let people shop for you. Spend that time going for a walk in the fresh air instead, or visiting in a socially distanced, safe way with friends or loved ones. If you can’t go for a walk, sit outside, or near an open window.

Turn off the news. Stop doing as many things as you can control that cause you anxiety or anger or evince any other negative emotion. Over-production of cortisol (the hormone our bodies release when our “fight or flight” response gets triggered) is linked to suppression of immune response.

Get your flu shot (there is reason to believe that it may help boost your immune response if you do contract this virus).

Eat healthy, fresh foods as much as possible. Drink plenty of fluids.

And everyone, for the love of God, yourself, and your fellow citizens, WEAR A MASK.

Parenting the Parents, Part XIV. Thyroid Nodules and Escape Acts.

Time for some positive energy for a couple of reasons: 1) Mom’s thyroid ultrasound was Wednesday. She has a 3cm nodule (medical code for a tumor, and 3cm isn’t a tiny one) that is defined as “complex.” While that doesn’t necessarily mean cancer, it could. I should be getting a call from the doctor’s office today or tomorrow to schedule a needle biopsy. 2) On Tuesday night, sometime around 3 a.m., for the first time, dad wandered out of the house.

Not the worst thing. . . maybe

Let me take these one at a time. First, mom’s thyroid: I suspected things might begin to unfold like this when the doctor called me last Tuesday evening while we were on vacation, filling me in on what he was seeing from the CT scan mom had had the previous Friday, and letting me know that the thyroid ultrasound was in order. If there were nothing concerning in that CT scan, I’m pretty sure a follow up call might not have come at all, or wouldn’t have been quite so soon. So, when the doctor called last night, on the same day as the ultrasound, I was certain it wasn’t just to convey an all-clear.

Now, I do realize that of all the vast array of cancer possibilities that exist, thyroid cancer isn’t the worst. The majority of thyroid cancers are highly treatable and, overall, have a 98% 5-year survival rate. I also know this survival rate can be quite different depending upon the specific type of cancer, stage, and the age of the patient. No matter what, all we can do is take this one step at a time. I decided not to tell mom about it last night so she wouldn’t stress out and keep herself awake. (I’ll tell her as soon as I hear from the doctor’s office and have the biopsy appointment set up. I did prepare her for this possibility after the ultrasound, so hopefully it won’t come as a shock).

Secret Houdini

As for dad and his . . . expedition, Mom slept right through it, and only discovered it when, in the morning, she looked out the front window to see if the newspaper was on the stoop and saw his walker, sitting on the sidewalk, dripping from the rain and mist that had persisted all night. He had come back in and by then was snoozing in bed, but immediate action was clearly in order to prevent another such incident, possibly with a much worse outcome. When mom asked him why the walker was outside, he told her, in full detail, how he’d gone out and exactly where he’d gone (farther than he’s probably walked cumulatively over the past month). The one thing he couldn’t tell her: why he decided that he simply had to go for a walk, outside, in the cold drizzle, at 3 a.m. I think he was bored.

How someone with very limited agility managed to Houdini himself – and his walker – out the door, down the (thankfully only 2) steps to the sidewalk, then on a downhill trek with an uphill return that spanned about 400 yards round trip, unaided, is beyond me. I forgot to ask him what he had on his feet!

The Solution, for Now

There are two exit doors on their main floor (and a bank of sliders in the walk-out basement, but we keep the basement door locked with a two-sided, keyed lock so dad doesn’t accidentally open it and fall, thinking it’s a door to somewhere else). The front door has a deadbolt with a flip lock on the inside, and the garage door has a regular knob-lock, like one you’d find on most bedroom or bathroom doors, but with a keyed entry on the outside. I thought at first that we’d change the front door deadbolt to one that’s keyed on both sides, along with switching out the garage door with one similar to the one on the basement door. Mom could wear the keys on her fall-alert pendant.

Upon further thought (and a conversation with the lockset guy at Home Depot), we concluded that having 2 keyed locks could be a hazard if there were ever a fire and mom wasn’t able to find the keys (even though, in theory, she’d be wearing them; if she ever took the pendant off and forgot to put it back on, the panic of an emergency would surely obliterate her ability to think clearly about where she put the pendant and the keys). So as at stop-gap solution, we bought 2 magnetically activated, stick-up door alarms that go off when the door is opened and the magnetic field between the 2 contacts is broken.

Disarm Alarm

We “installed” the alarms on both doors last night, with the intention of going out today to pick up the double-keyed deadbolt for the front door. We tested the alarms, showed mom how they worked, made sure they were set, and said our goodnights. At 8:50 this morning, my phone rang. It was mom. I picked up with my usual upbeat, “Hey! What’s up?” It took her a good 20 seconds to communicate that she didn’t know how to turn off the door alarm, and she was not happy. Oh boy. It wasn’t shrieking in the background as we talked, so obviously she at least remembered that you just need to close the door to make it stop. I couldn’t initially determine why simply closing the door was so distasteful, but when I offered that as my first solution to the problem, it riled her up even more than she already had been. Oops. I realized later it was because she wanted to leave it open as she stepped outside and down the stairs to pick up the newspaper.

Her frustration built as she sputtered through what she thought she was supposed to do to disarm the device, none of which was making a shred of sense to me. I thought she was standing in front of the alarm and trying to figure out how to disable it. It took another minute or two of attempting, and failing, to guide her through how to turn off the switch for me to figure out that was what was happening:

“Are you at the actual door looking at the alarm, or reading off the instructions?”

“Both, but I’m looking at the paper.”

“OK. Put down the paper and just look at the alarm itself and I’ll tell you how to shut it off.”

After another 2 minutes of me trying to walk her through the process, step-by-step, it was clear that absolutely nothing I was saying to her was landing – the circuits were shorting. I told her I’d be down in a couple of minutes.

She was in rare form when I got there – upset and mean-spirited, saying she didn’t care if he just went out the door and never came back. I let that bounce off and said I understood – which took a lot of energy – then showed her (again) how to slide the cover off the alarm (even though she thought we didn’t show her last night), how to move the switch to turn it off, or to switch it to “beep” mode (so it would just beep once if someone opened it). Hugging her, I apologized (I felt for her in her confusion, even if her anger was really getting to me this time), but her dark mood relented only slightly. I told her we’d be back later after we picked up the new deadbolt, and beat a hasty retreat back home to finish my coffee and to steam quietly in my own annoyance.

The Solution, Part II

Tim had taken his niece to the airport, and when he returned, much to my delight, he announced that he’d bought the deadbolt on the way home. After he finished his coffee and got in a round of post-primer sanding on the trim in the hallway-under-renovation, we rolled back down the hill. Hannah, their caregiver, was there by then, and dad was up and sitting at the kitchen table, finishing his breakfast. Mom was nowhere to be found (Tim thinks she was hiding in the bedroom, feeling a little sheepish over her earlier behavior – he may be right).

By the time we completed the installation of the new deadbolt, she’d made an appearance, though with only slight mood improvements. Tim and I left to have copies of the key made at the hardware store and picked up a lanyard for one copy that would stay in the door during the day and be worn with her fall button at night. I had one of the copies made with a specialty head design in the shape of a little house, with the word “Home” on it, for her regular keychain, to make it easy to differentiate between that one and the one for the garage. When we got back, I tested both of her keys to be sure they worked, and she seemed to get a little lift from the “home” key – small victories – though we were still far from “normal.”

I’m considering whether I need to go over there every night to set the alarm on the garage door for her, then go back every morning to turn it off. For dad to get out of the garage and into the world would take a lot more (relative) Houdini-ing than slipping out the front door, so for now I’m content to see how it goes over the next day or so, and look into an alarm mat!

Parenting the Parents – Part XIII. Bone Density, Cat Scans and Bloodwork, Oh My!

Hooray!! The last Eyedrop Episode was, in fact, the Friday of the day of mom’s last post-cataract surgery check-in with her ophthalmologist. As I’m writing, we’ve even picked her new eyeglasses at the Optometrist’s, and we’re excitedly awaiting the phone call, hopefully later this week, telling us they’ve arrived. After more than 2 months straight of preparation, surgery, and post-op care, it’s nice to have a little fun in the forecast.

Meanwhile, back in the regular world, there were a few follow up tests mom’s doctor (Dr. K) had ordered back in January to be done sometime between then and her annual wellness check in early summer. Two are fairly routine: bloodwork and a bone density test. The other is a little less routine – a chest CT, to take a closer look at a nodule they must have noticed when they did the prep tests for her pacemaker surgery. To be honest, I hadn’t even looked at the details on any of the orders until yesterday. I don’t recall Dr. K assigning it great gravity, but thinking back, I do believe, the last time we saw her (for mom’s pre-cataract-surgery physical), she talked about getting that done. I didn’t have an order for it, so they sent it to me. Then, with all the relative noise in the calendar between January and now with her pacemaker post-op follow-up appointments and the 2 cataract surgeries, mom had wanted to wait to do these other things until we were done with everything else. Understandable, and I was happy to *not* have to deal with those in the midst of everything else.

So yesterday morning, first thing, I called to make appointments for the bone density test and the CT scan. The bloodwork can be walk-in, but it’s usually better to make an appointment. I’m going to be away next week – Tim, James, and I are driving down to North Carolina to retrieve Owen from his freshman year, and my sister is coming down to stay with mom & dad while we’re gone. I need to see if she’s OK to take mom for that sometime next week, and if she is, I’ll schedule it. Bone density is today. CT scan is Friday afternoon, and now that I know what it’s for, I’m kicking myself about once an hour for not looking at the details on the order sooner and making this appointment sooner. I’m crossing my fingers and hoping it’s nothing, while my brain rushes ahead to the worst-case scenario. Yet all I can do is wait. And push my worry out of my head, and my chest when it fights its way in and sits there, like a weight hanging off my heart.

Fast-forward a week and a half now, because I started this post but am just picking it back up to finish it after being away. I got mom to her appointments that week, and my sister took her for bloodwork this week while we were down in NC. I ended up in the ED with mom & dad last Saturday afternoon and evening for almost 6 hours because dad was feeling really awful and although he didn’t have a fever, I couldn’t be sure his pneumonia hadn’t come back (a story for another day). This past Tuesday evening, as we were picking Owen up from his dorm to head out for dinner, Dr. K’s office called (another Dr. from the practice actually, because Dr. K was away). Instantly my heart started pounding because I knew the doctor wouldn’t be calling just for yuks at 7:30 on a Tuesday night.

I felt like I was listening to him through a pillow, and in slow motion. He went through a few things: 1) the nodules in her lung – they looked to be emphysema, though not extensive – had she ever been a smoker? No, but her father was, and my father, too, so lots of second-hand smoke exposure. I shared that she hadn’t been experiencing any discomfort or shortness of breath, which he said was good, and they’d continue to monitor that and we could discuss further with Dr. K at her annual wellness check later in June. 2) Her gall bladder – there appeared to be stones forming. Again – I expressed my surprise, as she hadn’t been in any pain or complaining of any symptoms. Good, again – we’d just keep an eye on that and treat if/when necessary and discuss further in June. 3) Her thyroid. Nodules there on the left side. More concerning; want to get ultrasound to have a closer look sooner than later. Ok, I say – send the order in to the imaging lab and have the office call me once that’s done. I’ll set up the appointment ASAP.

I’m actually somewhat relieved as we finish up the call – still concerned, but somewhat relieved, because I know most thyroid cancers, if it comes to that, are very treatable and have good prognoses. Nodules on her thyroid could explain why she’s lost weight in the past several months, and somehow, this seems better than something questionable in her lung. Somehow. Or is that just my inherent optimism?

The office called the next morning to tell me the order was in to the imaging lab. I made the appointment for the soonest I could do it (next week) and decided to wait until I got back home and could talk to mom in person before telling her what was going on. I didn’t want to leave that to my sister to deal with solo while I was still away. I texted my sister at 8:00 on Friday morning after I got back in from NC late on Thursday night – was she going to be there until 9:00 or so? I’d come by before she left.

She was, so I did. I explained the 3 findings, and that I had made the ultrasound appointment for Wednesday afternoon. I wrote it in the calendar. After my sister left, mom asked me to repeat the 3 things while she wrote them down. She wanted to look them up (she was a medical transcriptionist at 2 different times in her life, so she still has some of her medical books, although at this point they’re at least 25 years old).

Mother’s Day will have come and gone by the time this post goes up, but it will still be 2 more days, and probably another day or two after that, before we have an idea of what this ultrasound has to say. Another phone call I’ll be waiting for, but not looking forward to.

Parenting the Parents – Part XII. The Cataract Chronicles, continued.

The Friday before mom’s second cataract surgery, as I mentioned in my post a couple of weeks ago, was her first appointment with the geriatric psychiatrist, Dr. M. We came away from that appointment with a prescription for a medication to treat her depression, with him telling mom that any side effects were rare and, if any appeared, typically very mild, tending toward those of the gastrointestinal variety. He recommended that she take it in the morning with food to avoid any of those potential side effects. I swung by the pharmacy first thing on Saturday morning to pick up the prescription, and since by now we were back on the 3 eyedrop-a-day regimen for the second pre-surgical eye (while still administering 2 a-day for the first eye), I dropped it off when I delivered the first round of drops for the day.

There were 2 dosages of the depression medication: a lower dose to start for the first week, then a higher dose she was to take for another week and ½ before her follow up appointment with Dr. M. I put the higher dosage bottle away in the cabinet, leaving the lower dosage one on the kitchen counter where she would see it in the morning when she made her breakfast. I left all the standard literature that comes with any new prescription off to the side on the kitchen table. I came back in the early afternoon for round 2 of the daily eyedrops to find my mother somewhere well-beyond agitated, bordering on the accusatory:

“I’m not taking those new pills.”

Instantly I knew what had happened.

“I read those papers and it said there could be eye problems so I called Dr. M’s office and told him I’m not going to take them.” She didn’t want to risk messing up the surgery.

I started to remind her that Dr. M had said that the side effects were rare and mild, but thought better of trying to talk her into it at this stage given her frenzied state of mind. She continued, attempting to convey her concerns, her frustration building , unable to extract and articulate the thoughts in her head. I quickly put it all together based on the sentence fragments she was hurling at me. Her eye doctor didn’t know about this new medication because she hadn’t been on it when they last reviewed her medication list. Then she wasn’t sure *who* she’d called, causing her more frustration, so I looked at the call log on the phone. Turned out she’d called the eye surgery center. I told her they weren’t open on the weekends so they wouldn’t be getting back to her until Monday morning, but also conveyed not to worry about it – if she wasn’t comfortable taking it yet, then she shouldn’t take it. We’d wait to hear from the surgical center or the doctor on Monday to be sure it was OK, and if it was, she could just start it on Tuesday, since she had to fast Monday morning before the surgery.

Monday morning the surgical center called back and told her the medication wouldn’t interfere with her surgery. I did the drops, later than normal, just before we left for the surgery, which, this time, was scheduled for noon. All went well, and, because she now knew what to expect, though I offered to stay over again this time, she was comfortable with me spending that night in my own bed. I reminded her though, that if anything was even a little bit off, she should just call me.

I arrived the next morning around 9:15 to help her remove her patch and dressings and to be sure she ate something and took her first dose of her new medication. Her appointment was at 10:15, so we were planning to leave a little after 9:30, so I was surprised to find the place eerily quiet. I called out. No answer. I wondered if she’d overslept.

I went to their room to find her sitting in the chair next to her dresser, in quiet tears. She seemed shaky and weak. Panic rose. She said she was feeling dizzy and strange and that she didn’t think she’d be able to go to the appointment. I felt her head for fever as I ran through the list of post-op complication warning signs I’d since memorized: bleeding through the dressings (no); fever (no – though she was a little sweaty); chills (she said no); nausea (no); vomiting (no); pain at the surgical site (it felt like the other eye had, so no). I asked her if she’d eaten anything (no), so I went out to the kitchen, peeled her a clementine, poured a fresh glass of cold water, and brought them in to her.

It was imperative that we see the doctor that day for the post-op follow up, but I told her not to worry – that I would call to change the time to later. While she ate the clementine, I called the doctor and left word on his assistant’s voicemail with what was happening and asking if we could bump the appointment to later.

After a few minutes, mom seemed marginally better. I made her some toast. Hannah had arrived so she helped her finish getting dressed. They came out to the kitchen and I went back to get my phone off her dresser, distracted for a minute by a reminder that had popped up on my screen. I came back into the kitchen to butter the toast. By now she was sitting in her spot at the table, so I washed my hands in preparation for removing her patch and dressings and doling out another dose of eyedrops. The eye looked red, as the other one had the morning after surgery, but nothing alarming. I decided to wait on the eyedrops until after she’d finished her toast.

As I went back over toward the sink to grab a napkin for her, I saw the bottle with the new medication on the counter, so took one out and brought it over to her to take now that she was eating something a little more solid. As I laid it on the table next to her plate, she said, “Oh, I took that already.” (What?!?)

“You did? When? Like before I got here this morning, or just in the past few minutes?” (Could she have taken it in the time it took me to get my phone?)

She thought for a moment. “Before you got here. I was up early and walking around and I saw it so I took it.”

“Did you eat anything when you took it?”

“No.”

“I think that’s why you were feeling so dizzy and strange! Dr. M said you should take these with food or they might make you feel funny. How are you feeling now that you have some food in you?”

“Better.”

My phone rang. It was the doctor’s assistant. I explained what I thought had happened and that I thought we may still be able to make it but we might be a few minutes late. She said not to worry and did some re-arranging of the schedule, working us in after 1:00 that afternoon instead. Perfect.

Mom finished her toast, now on the upswing. I plopped in another set of eyedrops and headed home for a couple of hours before I’d be back for the post-op appointment, which went not unlike the one for the left eye. Another week of 3 drops, 3 times a day in the right eye until we were back for the second follow up appointment. We could stop the drops for the left eye, which felt like a small victory.

At the second follow up, the doctor noticed some swelling in the left (first) eye, so my small victory evaporated as the regimen was shifted again: 2 drops, twice a day, in *each* eye until the final follow up appointment at the end of April. As I’m typing this, we’re counting down the last few days before what should be the final follow-up appointment, the much-anticipated measurements for her final eyeglasses prescription, and The End of the Eyedrop Episodes. There’s a part of me that will rejoice, and another part of me that’s already working on a reason to go over there every day anyway. Maybe just not twice a day. . .

Eyedrop 2

Parenting the Parents – Part XI. The Cataract Chronicles.

If you have aging people in your life, at least one has probably had cataract surgery. I think I might even know a few people who’ve had this often life-altering procedure who don’t fall into the “aging” category. In either case, you may have heard about the procedure, and the preparation and follow up care that is required. For people without cognitive impairment (or unsteady hands, or eye/ eyedrop phobias), I’m certain the whole thing barely rises above a minor inconvenience, especially considering the abundant payoff.

With mom’s particular brand of dementia, no appointment or procedure can be taken lightly. Leading up to even routine doctors’ appointments, she scrutinizes the weather forecast for a week in advance; lays out her clothes the night before; and asks me at least twice in the two days ahead of time what time we’re going to leave. When you’re talking surgery, especially not long after having had an unscheduled pacemaker implantation, the unknowns gather themselves into a category 5 hurricane of anxiety. The eyedrops; the preparation for the surgery and the surgery itself; the immediate post-surgical follow up; the eyedrops; the ongoing follow up appointments; the eyedrops. . . none of it can really just happen “in the flow.”

The surgeries were going to take place a month apart: left eye at the end of February; right eye at the end of March. They would be performed at an eye surgery center about 15 miles away, where our ophthalmology group, and apparently several others, perform various procedures all day, every week day. (At the second visit, my curiosity piqued by the volume of patients who moved through the waiting room in the time between our arrival and post-operative departure, I asked how many surgeries they perform in a typical day there. I was astounded to learn that it was between 40 and 60).

Before the first surgery we needed a pre-operative physical, which had to be completed within a week of the first surgical date. Mom kept getting confused about the timing of that appointment and worrying that we hadn’t scheduled it at the right time. Once it was clear the timing was OK, the worry shifted to whether there would be something wrong that would prevent her from having the surgery, or if her pacemaker would present an obstacle. Could they do cataract surgery so soon after she’d had a pacemaker? (It would be 7 weeks post-pacemaker by the time her first eye was on the docket). I assured her that doctors perform cataract surgery on people with pacemakers all the time. I’m not entirely sure her anxiety allowed her the luxury of believing me.

So yes, complicating this was also the fact that we were still in the wake of post-pacemaker implant follow up appointments, and while I was keeping it all organized, it was thoroughly overwhelming her. It didn’t help that the hospital’s cardiology group, not realizing mom now had her own cardiologist, had scheduled a series of follow ups before mom was even discharged from the hospital that were then also scheduled separately by her cardiologist. It took me a couple of rounds of appointment change and reminder calls from the hospital’s group to figure out that these were duplicate activities and that I could cancel the ones with the hospital’s group, but with the calls coming in to my parents’ phone rather than mine, poor mom was completely confused. I think I’ve now informed all her doctors that appointment reminder calls should come to me. If you are in the world of caregiving for someone with dementia and haven’t yet managed to get yourself on the HIPAA privacy releases at their doctors’ offices and those reminder calls switched over to you, my advice is to try to get that in place sooner than later. It’s a sanity-saver. For everyone.

A week prior to the first surgery, mom was supposed to stop taking one of her over-the-counter supplements because of a potential complication that could arise with it. The surgical center had apparently informed her of this when they called her to tell her what time to plan to arrive on the day of the surgery, but somehow that directive escaped her. I discovered it when I saw that she’d written some notes down about an arrival time and the address of the center on a random slip of paper, so called them myself to confirm what she’d written. They mentioned the over-the-counter medication to me. It was now 5 days pre-op, and I asked if that would pose a problem. They said it wouldn’t.

She was supposed to fast from midnight the night before each procedure. She had written it in her calendar, and I reminded her when I left after administering her last round of eyedrops the previous evening. For good measure, though, I arrived early enough on the day of each surgery to intervene as she woke up, just in case.

As for those confounded eyedrops, most unimpaired people likely don’t give them a second thought. If we lived under the same roof, I might not have either, but I don’t. Even though I’m only 3 minutes away,  the “Eyedrop Episodes” were folded into the overall outline of my days. For each eye, we began a regimen 3 days in advance of the surgery: 3 different drops, at least 5 minutes apart, 3 times a day. Each morning I’d motor down the hill, typically sometime between 9 – 10 a.m., to administer the first dose. Then, between 1:00 and 2:00 came the second dose, with the third usually falling between 5:30 and 7:00. We were supposed to administer at least the morning drops the day of the surgery; because the first surgery wasn’t scheduled until mid-afternoon, I did two rounds. I figured more would follow after the surgery.

The pre-op instructions from the doctor suggested that the patient have someone stay with them the night of the surgery in case of any complications, so that morning I packed my things. I included my muck boots, because light snow was forecasted for that afternoon and overnight, another factor stressing mom out, and, if I’m being totally honest, me too – even light snow falling at the wrong time of the day could sometimes spell a 2 hour odyssey for what should normally take 35 minutes or less, and we’d be getting out of there right in the thick of rush hour. I didn’t really relish the thought of being stuck in traffic in the snow on the way home from surgery, so with an abundance of caution, I left all my overnight stuff in the back of my car. Worst case we’d stop at a hotel. Gratefully, the weather gods smiled and the snow had no impact.

The next morning she was supposed to remove her eye patch & dressings, and I was to give her another set of eyedrops before we went to the doctor for the post-op follow up visit. She wasn’t allowed to bend over (i.e. let her head drop below the level of her waist) for at least a week, which might alter some aspects of how she helped my dad when their caregiver Hannah wasn’t around (helping him with his socks and shoes, or the assists I knew she sometimes provided when he was changing a Depends). All of this made the next morning somewhat eventful for me as I tended to both of them before Hannah arrived. We saw the doctor and all appeared well; he instructed us to continue with the 3 drops a day regimen until the next appointment, a week away. On the way home I asked mom if she wanted to go out for breakfast – an unexpected treat.

Back at home that day with Hannah, the two of them came up with some revisions in how she helped dad with his footwear (and Depends) so they could manage safely on their own: mom would sit on the fold-down seat of dad’s walker and he’d lift a foot (or both feet, one at a time, in the case of a Depends) high enough for her to grab it and guide it to the edge of the seat where, from her sitting position, she could help him with socks, slippers and shoes. With the Depends, as long as she could help him get them to knee level, he could deal with the rest on his own.

At the follow up appointment a week later, I expected to be done with the drops until the next surgery, but alas, that was not in the cards. The nurse said it casually, at the very end of the appointment, after the doctor had left the room: “So you’re going to continue the drops,” thinking she was confirming something the doctor had said, but he hadn’t. The exasperation lurched out of me before I had the wherewithal to stop it: “Really?? All of them?!? 3 times a day?!?” I felt the same burning frustration I did when I used to do the Jane Fonda workout back in the late 80s and she’d pretend the excruciating set of donkey kicks was ending as my glutes were bursting into flames: “5 more! 4! 3! 2! 1! Annnd another 5!” One of the drops was eliminated, and the frequency dropped to 2 times per day, but the Eyedrop Episodes were to be a part of my life for at least another 4+ weeks – after the second surgery.

The twice-a-day routine settled itself into my life. Once or twice I had James, my 22-year-old, pinch hit. This worked once and failed once, when we’d pre-planned that he’d head over between 6 and 7 p.m. because I would be out at a dinner engagement. I arrived home at 8:30 to discover that he had completely forgotten (calendar reminders, anyone??). I yelled at him for lapsing in the one responsibility I’d asked of him that day and Tim threatened that he’d better get down there and do it. Because I hadn’t even left the threshold yet, as he emerged from his room to head down the stairs, I snarled passive-aggressively that I’d just do it myself. This was getting to me, but this was my reality, so I vowed on my drive down the hill to just suck it up and deal with it. With a smile. I needed to remind myself of the advice I gave out all the time: the secret is all in the attitude. The more I fought it, the crankier it made me. Yes, there was still another eye to go. So be it.

eyedrops