My unbiased review of Covid-19 now that we’re on the other side of itContinue reading
And I’m pissed
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.
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.
A Wednesday night post for “Mom & Dad Monday”Continue reading
The Tale of the Bloody Eye: this week’s Adventures in CaregivingContinue reading
How my mom’s little self-challenges help her keep her sense of self in her early stages of dementia, even as she feels her body is coming undone.Continue reading
Since everyone in my “terrestrial” life always asks how my dad (and now, also my mom) are doing, and since it’s been a couple of weeks since I posted about them, here’s the latest.
Mom’s Pesky Thyroid Nodule
Mom’s thyroid nodule biopsy was “indeterminate.” Her doctor referred her to an endocrinologist, whom we saw last week. He was beyond wonderful. He spent about 20 minutes with us, and even performed his own ultrasound (himself – not one of his staff) so he had direct experience for comparison on her next visit. He classified it as a “stage 3” nodule, but that doesn’t mean it’s malignant. It’s in a spot where it sometimes interferes with mom swallowing, so if it gets worse (i.e., if it grows), her swallowing difficulty would increase, which would tell us that we need to get in to see him again sooner than the 6-month follow up we now have scheduled.
He explained what I already knew – most thyroid cancers are quite slow-moving – and something that was comforting that I hadn’t considered: if this nodule does increase in size, he would order a larger biopsy that would yield enough tissue for genetic testing, which not only would definitively tell us whether it’s malignant, if it were, it would provide better info to zero in on a much more targeted course of action. Mom is handling all of this exceedingly well. I’m attributing that to those “happy pills,” as I call them, which she’s now been taking since early April. I’m not a strong advocate for medications in general, but these have been truly life-altering for her in the best possible way.
Dad had a tooth extracted a week and a half ago. He did great, took all his follow-up antibiotics, and is back to his normal eating patterns (fried baloney every morning with toast – not something I’m thrilled about from a dietary/health perspective, but it’s one of the joys of his day, and there’s no way I’m taking that away from him). I can’t believe I didn’t think to offer him a $5 bill from the Tooth Fairy. . . Damn.
A Sliver of Independence?
They came over for a cookout the Sunday before Memorial Day. It marked mom’s first foray back to driving, and it was a success. We sat on the front porch for a couple of hours, chatting, listening to the birds, introducing them to our neighbors. Everyone enjoyed themselves.
I had to take dad for routine bloodwork last week, and he has a follow up appointment next week. Mom has a regular “well-check” later this week with Dr. K. If all goes well, we don’t have any other appointments for two whole weeks after that.
Dad called early yesterday afternoon because mom had gone out to pick up a couple of their new-favorite Jersey Mikes subs and he was mildly worried about her (it was the farthest she’s gone so far on her own). He asked me how long he should give her to come back before he started to get concerned that she was lost. I did the math, adding a bit of cushion to be on the safe side, telling him 1:00. He said he’d call if she wasn’t home by then, and when he hadn’t called by 3:00, I knew all was well.
Or (this is where my head goes these days): that mom had gotten lost and couldn’t figure out how to use her cell phone; that dad had forgotten to put his fall-button pendant around his neck and that he’d fallen so he couldn’t get to the phone. I stomped my worry demons into submission though, allowing my parents this wonderful little window of independence again for the first time in a long time.
A more critical look at what’s *really* sad about dementia.Continue reading
Hello readers! Check in tomorrow morning (Tuesday, May 21st) for my next guest blogger post on the “Light My Fire” page of Fire Over Fifty! It’s a story that may be of interest to “Mom & Dad Monday” followers, too.
This week’s post is by someone I’m honored to call a friend, Nancy May. Nancy has built an amazing career advising corporate boards through The BoardBench Companies. Now, driven by her own personal journey coordinating care for her aging parents, she’s developing her next big channel, and she starts here with sharing her story.
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).
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.
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!
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.