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.
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?”
“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?”
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. . .
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.
If you’re of a certain age, perhaps the title of this week’s blog puts a certain song from “The Sound of Music” in your head. Sorry if that now becomes your earworm du-jour.
Going back a few weeks, I shared how mom’s post-surgical home-care occupational therapist performed a cognitive screen with her and her scores indicated fairly significant dementia. I wasn’t there when the O.T. (I’ll call her Nina) did the screen, but knowing how my mom had been struggling emotionally with all the challenges aging suddenly seemed to be throwing her way, I worried that she’d internalize this, adding it to her growing list of worries, fears, and perceived shortcomings. (Among them: her need for a pacemaker; a recent visit to the eye doctor that resulted in her being scheduled for upcoming cataract surgery on each eye, along with 3 separate follow-up appointments for each surgery; her ongoing bouts of word-loss – being able to picture something but not give it voice). No amount of reassurance or logic seemed to change the self-critical frame into which she painted these facts.
I asked Nina how mom had reacted. She told me she (mom) knew she “hadn’t done well,” but Nina reassured her that there was no “well or not-well,” and that it had nothing to do with her intelligence. I knew my mom. I knew she’d hear the words; but I also knew they’d likely bounce uselessly off her looming sense of diminishment. I pressed, “how did she feel about *that?*”
“Well, she wasn’t too happy, but I talked to her about it and by the time I left she seemed better.”
Nina suggested that I get mom in to see the geriatric psychiatrist my dad had been seeing (“Dr. M”). I promised I would, and wondered out loud how on earth I was going to bring this up with her. Nina reassured me that I shouldn’t feel like I had to do that right away, and that when I did, I didn’t have to make a big deal about it. The reality was that it was important that we get it checked out because we might be able to do something to improve it. My dad did seem to be doing fairly well on the medication he’d been taking, but mom’s “presentation” was so different that I was skeptical the same thing could work for her.
I called Dr. M’s office to see if I could schedule an appointment around the same time my dad was slated to go back for another follow up in late March (it was early February). Though the practice wasn’t taking new patients, they were accommodating considering that dad was already a patient, and even maneuvered things to schedule mom’s appointment in the time slot immediately prior to dad’s. They asked if we’d had any MRIs or CT scans and I shared with them her fainting episodes prior to her pacemaker implantation, and that 2 CT scans were done prior to her surgery. They said they’d arrange to get the images from her doctor. I was happy for all of it, but inside I was still fretting about how to tell her.
I called my sister and filled her in. She had no difficulty relating to my concern about bringing it up, so we agreed that I’d bide my time and wait for the right moment to “go there.” Several days later, I decided to write the appointment onto their two calendars, in plain sight, as a possible catalyst. It was scheduled for a Friday afternoon – as it happened, the Friday before the Monday she was scheduled for her second cataract surgery, so I figured she’d be checking the calendar as the date of the cataract surgery approached. I wanted to let it come up in the natural flow of things. Eventually, it did, two days beforehand.
Mom: “Hey, how come I have an appointment on Friday with Dr. M, too?”
Me: “Remember your occupational therapist Nina? And that test she gave you?”
“No. . . not really.”
“That’s OK. Anyway, she shared the results of that test with Dr. K, and Dr. K recommended that we get you in to see Dr. M, too. You might not remember because of everything else that was going on, but in one of our follow up appointments with Dr. K, she recommended that we have you see Dr. M.”
When I headed home a little while later, I wondered if that was it – all that worrying over nothing. The next day (the day before the appointment), she revisited it: “I remembered that test Nina gave me. So what’s going to happen on Friday?” Her voice was slipping back and forth over the fine lines between curiosity, fear, and irritation.
“Well, you know how you’ve been getting frustrated over losing words sometimes? Seeing Dr. M will help us start to figure out what’s going on with that. You’ve noticed how daddy’s been doing pretty well on his medication from Dr. M, right? They may be able to do something that will help you, too, but they need to see you in order to do that.”
Once again I was relieved that she seemed to accept this explanation with little angst.
When I arrived Friday prior to the appointment, however, the angst level had clearly ticked upwards, evidenced with mom’s defiant announcement: “I don’t know what they’re going to ask me today but I may not be very nice about it. They might just kick me out.”
“I don’t think they’ll do that mom. Remember, this is exactly their specialty. They’re here to help figure out what’s going on, and to come up with things that might make it better.”
As we pulled into the parking lot of Dr. M’s office, she declared, “I just want you to know I’m not very happy about this.”
“I know you aren’t, but we trust Dr. K, and she wanted to make sure we did this.” It was helpful to fall back on Dr. K, for whom mom had developed great affection – she recognized that Dr. K’s actions the day of the pacemaker implant had probably saved her life.
The first 30 – 40 minutes of the appointment were tough. Karen, the therapist, administered another SLUMS test. In many of the areas, mom did fine, but it was hard to watch her struggle with others – not for the fact of any cognitive deficit on its face, but for how hard it was for her to wrestle with the emotions that came up when she had a tough time with something. Karen was patient and careful, reminding mom that there really were no right or wrong answers. When mom would struggle she’d sometimes prompt gently, following, I’m sure, administration protocol for the test, as eventually, it seems that scoring weighs out the differences in how questions are answered (straight away; with prompting; or not at all). She also went through a series of depression-related questions. We talked about mom’s hearing, which had also been problematic.
Ultimately, Karen walked us gently back through the results of the SLUMS test and depression screen. She shared that there were some areas where mom’s scores indicated normal cognitive function, and others where there were challenges. She also highlighted that mom’s score on the depression screen fell just below the threshold for clinical depression. She assured mom that this was not at all unusual, and that depression could be a significant factor in cognitive functioning. Very often, she noted, treating the depression made a big overall impact.
We talked. I reinforced how glad I was that we were there and how it hurt me to see mom beating herself up when she couldn’t remember things or when words wouldn’t come out. I confessed that it seemed to me that she felt it meant that she was somehow “less than,” or not smart, and how untrue that was. We cried. We hugged. The whole mood shifted – so much lighter. Karen reiterated the importance (as she’d done in the past with dad) of physical exercise and doing new things to stretch the brain. We made a list of things we might be able to do: playing set-back and re-learning cribbage. Making bird houses. Getting some new CDs to listen to. Dr. M came in and, as he reviewed the scores (and likely Karen’s notes), he echoed Karen, stating that he’d like to take a shot at treating the depression first, to see how that might go. Mom was on board.
Dad arrived for his appointment right on time thanks to Hannah, their caregiver. I brought him in to mom’s appointment, as had been the plan, and we brought him up to speed with the findings and the plan for her. Dad was his characteristic, agreeable, low-key self. We rolled from mom’s appointment into his, which was a basic check-in. It went smoothly. We made follow up appointments for both of them.
While Hannah took dad home, I took mom, stopping on the way home for some groceries. She told me, more than once, how much better she felt, and how good it was to get all of those feelings out. I told her how glad I was, and how optimistic I felt that we were on a more positive path.
I walked away enlightened about depression and its link to dementia. Everyone’s is probably slightly (or a lot) different, and determining other areas of potential impact (such as depression) is important to coming up with a plan to manage it with the most appropriate approach. Now to get them to exercise, and to their proverbial, Sound of Music Switzerland. . .