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?”


“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. . .

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.


Parenting the Parents – Part X. How do you Solve a Problem Like Dementia?

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.”

“Oh. Okay.”

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. . .


Parenting the Parents – Part IX. A New Normal.

I thought I was going to write more this week about my mom and her ongoing diagnosis. But, life. More specifically, life when your parents’ well-being becomes your responsibility.

It’s Masters Sunday. Nearly a religious holiday in my house. Due to impending storms in Atlanta, they moved the whole final round to earlier in the day, and coverage was set to start at 9 a.m. I’m taking care of our niece’s 3 beautiful cats this weekend while she’s away, so I headed over there early (yesterday, and today), to be sure I gave the effort its due, but (today) could still watch the tournament relatively unimpeded.

I really like getting up as early on the weekend as I do during the week. Like 6 a.m. early. Mornings are my happy time. Getting up early and doing what I really need to do makes me feel accomplished. It’s also my peaceful time, before any shit has escaped to hit the fan. Plus, Tiger said at the end of play yesterday that he’d be getting up at 3:45 this morning. Who was I to sleep late?

Yesterday morning on my way back from my niece’s, my mom called my cell. Nothing to panic over, just asking me if I could pick a few things up at the store. It just so happened that I was 2 minutes away from our little market down the hill and the timing was perfect. On the way back this morning, my husband popped up on the caller ID as I neared my exit on the highway:

“Your mom just called. She sounds pretty upset. She says your dad has a fever and his cough is back and she’s kinda freaking out.”

“Okay.” (I should tell you: though I was hoping this would be a tiny, non-event-blip on the ever-spinning radar that is now life, that I took dad this past Monday for a follow up x-ray from his December/January bout with pneumonia. The doctor called a couple of days later to say that there was still a small “infiltrate” at the bottom of his left lung, so she was prescribing him some antibiotics. All this started twisting wildly in my head. How could he be getting worse when he was on day 4 of a 5-day antibiotic zap?)

“She asked if you could bring our thermometer. I told her I’d call you and have you come here first and then go there.” (They have a thermometer, but we haven’t been able to find it since their move. I decided to stop at the CVS on the way home to just get them a new one. That would be faster than going home then doubling back to their place, and they’d have their own once again).

I felt my adrenaline surge and my pulse rate increase as I hung up. I tried to breathe and settle myself down, but by the time I was sitting at the traffic light at the end of the exit right before the CVS, my brain was sprinting down a too-familiar track: what if this was it? Another fever with just a small pneumonia infiltrate. . . that didn’t make sense. Another round of sepsis? What was going on? Would I drive him to the E.R? Would I have Tim take my mom or try to keep her calm at home this time? What if this was it??

I got there. He was perched unsteadily on the side of the bed. He said he felt weak. I asked if he’d eaten anything. He hadn’t. I felt his forehead. He didn’t feel too warm. Kinda normal, actually. I cleaned the thermometer with alcohol (I’d broken it out of the package in the CVS parking lot and tested it on myself to be sure it was working – it was one of the digital kind with an 8-second read. If he was feverish and shaky, I didn’t want him trying to keep an old-fashioned mercury one under his tongue for as long as those take, but I also didn’t want to get it there and find the battery was dead or that it was a lemon). I took his temperature. 98.9. Normal. I took it again to be sure. 98.7. Phew.

I peeled a clementine for him to get his blood sugar up. He ate it. I asked if he wanted some fried baloney (his favorite – for real). He shook his head; meh – not really. That registered. Something was off. Mom asked if maybe he’d like some soup. It wasn’t 9:00 a.m., but who cared? He said yes. We got him some juice and ice water while I heated up the soup and did mom’s post-cataract-surgery eye drops. When the soup was almost ready, I supported him as he moved over to “the chair” and got him settled in. I made sure he took all his meds. I asked him if the cough felt like it was from a tickle in his throat or if it was in his chest. He said it felt like his throat, so I suggested to them that it could possibly be the increasing pollen in the air that was bothering him. What did I know, but I wanted to quell any panic that might be lingering around the frayed edges of the morning.

Before I left, I made sure he ate all his soup. He drank a juice box and had some ice water and took his meds. I promised to pick up more fruit before I came back for mom’s afternoon eyedrops, and told mom to call me if they needed anything or if anything changed with dad, then headed home to watch the Masters. When the phone rang a couple of hours later and I saw it was them, my heart jumped in my throat. I was relieved when it was only a request to pick up more bread, too, and an apology for being such a pest.

“No problem, mom. Really. You’re not being a pest. It’s no problem. I love you.”

Pepperidge Farm white bread

Just a Quick Post for those following Mom & Dad Monday

“Love to Move”Hey everyone! I just posted this on the Mom & Dad Monday Resources page, but I recently discovered this wonderful program of chair exercises you can share (and do!) with your loved one(s). I showed these to my mom this morning (while attempting a couple of them myself – that was eye-opening . . .) – we had a ball and were laughing like crazy as we tried them. They are as much for stimulating the brain as for encouraging movement. These will definitely become part of our repertoire!! “Love to Move”

Parenting the Parents – Part VIII. To Chill, or Not to Chill.

(** A little language. Again.**)

Dad is usually pretty laid-back these days. He’s accepted his dementia diagnosis and its unknown cause, which is interesting, because before we received the official diagnosis, he seemed a little fixed on the idea that it may have been a result of getting banged around playing football in his teenage years. He brought it up regularly as we discussed the steps we’d be taking once they moved. When we had our first appointment with the geriatric psychiatrist and the doctor explained that the causes of vascular dementia are still not fully understood, dad, as he has come to do so well, rolled with it, and he hasn’t brought up the football theory even once since then.

For the most part, he appears to have found peace with what’s happening with him, and (this is the part I love the most) he’s particularly good at not taking himself too seriously. He can laugh at himself, even in relatively dire circumstances, like when he’s slipped out of his lift/recliner chair and he’s stuck on the floor like a stranded sea turtle (though now that they’re set up with alert/fall-detection buttons, at least we have the peace of mind of knowing that if it happens in the middle of the night and mom doesn’t know or hear him, we’re covered). He sometimes has accidents due to his incontinence and the fact that even the best adult diapers can have fit gaps or (gasp) capacity limits. He’s forever making a joke of it, and when I’m there to witness it, I go right along with it (“jeez dad – I think we may need to cut off the Pepsi!”). I do this because it’s fun – for dad, who has decidedly NOT lost his sarcastic sense of humor, and for me, because I’m always seeking the humor in everything (unless Tim is criticizing my cooking – lol).

There’s a third reason I encourage the self-effacing banter with my dad: to reinforce with mom how important (and easy) it is to let things go when you realize that’s actually a choice you can make. I know how difficult this can be because I live it in my own house every day, where I’m my own version of my mother. When you’ve spent most of your life trying to keep things reasonably clean, orderly, and organized, that can be a very easy channel for bigger frustrations and fears (i.e. worries of what life might be like when he’s gone or how much more difficult things could become before that).

Despite the fact that disarray and disorganization are anathema to my entire sense of self, and I may never completely work through my borderline OCD over having a clean sink and countertops, I consider myself quite lucky that my husband and both sons have ADHD and my older son is also on the autism spectrum. Living with them has taught me, over the space of 20+ years, that I need to just release control and let stuff go. A lot. Or I’d spend all my life steaming in my own irritation, sucking the life and the joy out of everyone else along with me. So I’ve already had lots of practice, while mom hasn’t. Therefore, I try to take advantage of every opportunity that arises to show her that there’s a choice.

The day dad came home from rehab, he got to finally try out his new lift/recliner chair, which had been delivered the Friday after he went into the hospital, nearly 3 weeks earlier. I spent 10 or 15 minutes walking him through how to use it, showing him the different buttons on the remote and what they did, having him practice with it, while mom and their caretaker, Hannah, were out in the kitchen. (I had walked mom through it as well so she could take advantage of the chair while dad was still in rehab). He settled in and all seemed right with the world.

The following morning we had an appointment for dad for some follow up bloodwork, so I took him and we made an outing of it, stopping at McDonalds on the way home. After I’d dropped him (and the Egg McMuffins and hash browns) off with mom and Hannah, I went back home to do some work, trying to get myself ahead of the game in advance of a quick 6-day vacation to Mexico I was taking the following week. Around 11:15 mom called, completely pissed off because the toilet in the master bathroom was stuck and wouldn’t stop running, which just reminded her that the faucet in there also had a leak and oh-by-the-way she hated this place. AND the sky was falling. (Okay, she didn’t say that, but that was the tone). I had a call at 12:30 so Tim & I quickly ran down to assess what was needed but told her we couldn’t get to Home Depot to pick up parts until after 1:30. By 3:30 everything was fixed, including an entirely new bathroom faucet. Mom was a little contrite, apologizing for being so mad about it and taking it out on me. I told her it was OK, that I understood, and rather than getting all angry, all she ever had to do was call us.

Later that day, after dinner (and after Hannah was gone for the day), the phone rang again. This time it was dad:

“Marcia, it’s your father.” (No “Hello” first. Clear strains of irritation in his voice. I steeled myself).

“Hi dad! What’s up?”

“Not me! They brought me this goddamned chair and no one bothered to show me how to use the damn thing!” (Often, for both mom and dad, when something distressing happens, the nefarious “they” are a part of the story. These are the “they” of the paranoia that seems to be a part of the deal in so many cases of dementia. I bite down on my urge to challenge who the hell “they” are, realizing that will be nothing but aggravating and unproductive for both of us).

Stupidly, I attempt to walk him through which buttons on the remote do what (because I’ve tested it myself; I’ve shown my mother, and him, how to use it enough that I have the controls more or less memorized), and in the back of my mind I wonder where mom is as dad unleashes another irate invective at me about how confusing this goddamned thing is. The place isn’t that big – she has to be hearing this.

I ask him if he wants me to come down to walk him through it again and he says yes, but how the hell am I going to do that from Mexico, which is where he thinks I am right now (I tell him I won’t be in Mexico until next week, choosing to let slide the fact that he called me on the land line at my house). Then he yells at me in advance for going on vacation. I remind him that it’s only for a few days; they’ll have Hannah and Tim and James; my sister and her husband are coming down to stay with them over the weekend, but that’s little consolation to the Incredible Hulk who’s emerged, green and seething, on the other end of the phone.

Meanwhile something lodges in my subconscious: guilt-throwing is a rarity with my dad, so this must be deflection. I’m forming the idea that mom probably couldn’t remember how to use the chair either and got upset – more with herself than with him. The only thing that ever really flustered my dad was when one of us was really hurt or distressed, and I’m beginning to realize that pattern is 100% intact. I am presently squarely in the downstream path of their emotional sh*#storm.

I inhale deeply and exhale silently as The Hulk carries on. When he takes a breath, I offer calmly, “Dad. If you want me to come down and show you how to use the chair again, all you have to do is ask. If you’re not nice and you’re just going to yell at me, though, I’m not going to come. (Pause). Do you want me to come down and walk you through it?” Finally quelled, Bruce Banner replies, “Yes. That would be good.”

“Okay. I’ll be down in a few minutes.” I hang up the phone and exhale through puckered lips, mainly just to center myself. Tim, who’s been unable to avoid listening to this whole episode, jumps in. I know he’s trying to protect me when he tells me, a little angrily, that I shouldn’t have to just drop everything to run down there, but I snap at him and tell him that he needs to back off and stop telling me what my parents need and don’t need. The reality is that this won’t take long, and it’s going to calm them down so they, and I, can have a pleasant night. What I don’t need is him telling me how I should be reacting. What I do need is for him to just support me. He gets it, and gives me a hug, telling me he loves me and that I’m a good daughter, as I zip up my coat and head out the door.

I work with dad to unravel the mysteries of the chair. I make him press the buttons to practice standing himself up and sitting down, several times, until it seems that he has at least the basics down. I remind him that when he sits down he has to scoot his backside to the back of the chair so he doesn’t end up sliding off the front of it like he did yesterday (which had led to another call from mom to come and rescue him). Once he seems settled, I go out to mom, who’s been in the kitchen the whole time, cleaning up after dinner. Part of me really wants to just go home, but my better angels are guiding me differently.

We talk about the chair episode for a few minutes with me kicking it off with a joke, “man, I haven’t heard dad *that* pissed in a long time. I guess he was really upset about that chair.” She’s OK, but gets a little frustrated and weepy about it, which is really her reaction to feeling dumb that she (and he) have such a hard time with new things. I tell her that we all struggle with new things – I do almost every day – it just happens. But I tell her she has a choice about how she wants to deal with it: in a state of constant anger and frustration, where it’s actually even *more* difficult to learn because your emotional energy is being diverted to being angry; or to just shake it off, take a few deep breaths, exhale, and try again; or just call me. I point out that usually when these things happen, no one is dying (or, if they are, she needs to push the button), so to just remember to breathe.

I give her a reassuring hug, telling her I love her, and reminding her that if they just remember 2 things, their quality of life will be so much better: 1) BREATHE, and 2) drink water. She hugs me back, laughing a little; tells me she loves me too, and she doesn’t know what they’d do without me. I remind her that’s why we did this, and I’m so glad they’re so close. I really am.


Parenting the Parents – Part VII. Ambulances and Electrical Problems.

On the Thursday before dad was scheduled to be discharged from rehab, mom called me around 6:30 pm. She hadn’t been able to reach dad on the phone in his room (this was not unusual – it often ended up in an unreachable spot on the nightstand on the other side of his bed from where he sat, and the ringer, I’m sure by design, wasn’t very loud). She had been calling him to remind him that the UConn Huskies women’s basketball game was starting at 7:00. As I was reassuring her that he was fine and reminding her we’d left him with the correct channel circled on his channel guide, I heard a muffled clunk, and a grunt. “Mom??” (Nothing). “MOM!!??” (Nothing). I wheeled around and was at the front door in my coat with time standing still. Half of my brain was in utter disbelief – wasn’t I just doing this with my dad 2 weeks ago? I yelled up to Tim and our older son, James: “I need you guys down at my mom’s – now! I was just on the phone with her and she fainted or fell or something!” They said they’d follow me down in the truck and I was out the door.

The trip, which usually takes me 3 minutes, took about 90 seconds. I pushed the button on the garage door remote as I came around the corner from the main street in their complex toward her driveway so it would be fully open when I pulled up and I wouldn’t lose any time waiting for it. I was in the garage and out of the car in what felt like a single motion, bursting through the door between the garage and her entryway, calling for her, but no response. I took a quick look around as I ran through the living area to be sure she wasn’t there, but I was fairly certain she’d been in the bedroom when she called me on the phone.

I found her, somewhat stunned and confused, but awake, sitting on the floor with her back propped against the bed. The first thing I noticed was some blood on the carpet. I knelt down and started tending to her, flipping on the flashlight app on my phone to look at her eyes (pupils: equal and responsive. Mild relief). She had a cut and I could already see a bruise forming high on her left cheekbone, between her eye and her ear – that’s where the blood had come from. This seemed odd because the bedroom has nice, thick, soft carpeting – a godsend, really, that she fell in here and not on the tile floor of the kitchen or one of the bathrooms, or the hardwood elsewhere. Tim and James arrived and I went to get some ice for the cut and water for her to drink. I was searching the room, trying to figure out what had caused the gash when I realized it was the arm of her eyeglasses, which had cut into her on impact.

I told her I was calling the doctor first thing in the morning to make an appointment tomorrow. We got her up and into bed, then, after getting the game tuned in and watching the first quarter, made sure she was settled with everything she’d need for the night from drinking water to toothbrush/extra cup to Tylenol. I positioned the walker next to the bed and told her that the only reason she was to get up was if she had to use the bathroom, and if she did, she had to first sit on the edge of the bed until she was stable, then to stand with the walker until she knew she wasn’t dizzy, before she began to walk, *with the walker,* to the bathroom. She’d been sleeping later – usually until 8:30 or 9:00, so I told her to call me when she got up and if I didn’t hear from her by 9:00, I was coming over.

I was able to get her in for an afternoon appointment the next day. The nurse, Beth, led us to the exam room and began to take vitals. When she got to mom’s pulse, I could tell something was off. Rather than standing, fingers on radial artery, for 10 – 15 seconds and making her notes, Beth stood with her fingers pressed to mom’s wrist for 20 seconds. Then 30. Then an eternity, which was probably just a full minute. She pleasantly excused herself, saying, “I’ll be right back.” Another minute later, she rolled in the EKG cart and said lightly, “I’m just going to do an EKG.”

As she hooked mom up, and I sat there wondering what was going on, mom casually mentioned something about having some kind of block in her heart that she was born with – she couldn’t remember what it was called – she recalled the word “branch,” and Beth helped her finish: “You mean a bundle branch block?” I had never heard of this – in general, OR from my mother. What?! While my mom tried to discuss it with Beth, I whipped out my phone and started Googling. My mobile consultation yielded enough information for me to start putting everything together: the dizziness. The fainting. The difficulty walking. The fatigue. It all added up. Hers was congenital, which meant it was a left bundle branch block. I quickly made the analogy: while the name “bundle branch block” sounds like a “plumbing” problem, it’s an electrical problem, and she was likely in a “complete block.”

I reasoned all of this out, and moved to my next phase of thumb-driven research: treatment. Logic told me that for an electrical problem, the solution very well could be a pacemaker. I confirmed that fact with my phone, and bounced it off Beth, also wanting to start socializing the idea with mom, who I knew wasn’t going to take particularly well to the idea of having a pacemaker. Just then, the doctor (“Dr. K”) walked into the room. She looked at the EKG printout. She asked several more questions. She declared that mom was, in fact, in complete block, and showed me the evidence on the slip of paper, as if I also had “M.D.” after my name. She asked mom if she had a cardiologist, but mom had only seen him once; he was in a town closer to their previous house, and she couldn’t remember his name.

Dr. K phoned over to the cardiology office across the street to find out who was on call at the hospital. She then asked me if I’d be OK if they called an ambulance to transport mom to the hospital. Her condition wasn’t immediately life threatening, but she had to be seen today, in the hospital. I gave a quick yes, remembering how easy it had been with dad just 3 weeks before, and also considering that, given the clear urgency of the situation, trying to drop mom off and walk her in myself seemed truly nonsensical.

The paramedics arrived and went through their routine; they were funny and gentle with mom and she seemed to be comfortable with them, so I told her that rather than riding with her in the ambulance, I’d drive myself there ahead of her so I could start the registration process before she arrived. The paramedics, somehow sensing my leadfoot, admonished me in advance about the dangers of following them through stoplights, etc. I assured them I wouldn’t – that I’d be out in front of them instead.

I walked alongside her stretcher as they rolled her out to the ambulance. I kissed her forehead, assured her everything was going to be OK and that I’d see her in a little while at the hospital. Then they slid her into her temporary mobile cocoon of equipment, tubes, and monitors. By the time I got over to my car, they were starting their trek, so I fell in behind them. I was certain they were thinking that I hadn’t listened to a single word they’d said about not following them, so after we all turned onto the entrance ramp to the highway, I downshifted, kicking in the turbo on my MINI, and blew past them.

What seemed like moments later, I found myself again standing next to mom’s gurney in what was clearly a cardiac-specialty room in the “ED,” with all sorts of doctors, nurses, and technicians buzzing in and out, explaining what they were hooking her up to and what else they needed to do. I was thoroughly alarmed to note her pulse rate, which, according to the monitor, was hitting between 19 and 30 beats per minute.

I described to mom what was going on with her heart at my simplistic level of understanding: that her bundle branch block was an electrical problem that was making it so that the electrical signal from one part of her heart wasn’t making it to the other part, and therefore, that it wasn’t pumping at the right rate – it was working at about half-time. I told her a normal pulse rate was about 60, and pointed hers out on the monitor. I reasoned that was why she’d been feeling so tired and dizzy, and it more than likely solved her fainting mystery. I again socialized the idea that the “fix” was likely to be a pacemaker, which would regulate that electrical signal and keep her heart going at the proper rate. As a result, she was going to feel a lot better, and a lot more normal. She still wasn’t very excited about the idea.

While we were still in the doctor’s office, I had called Tim & James to let them know what was happening. James showed up in the ED a little while later, advertising the aroma of fuel oil (typical after a day of his job, delivering home heating oil), and the concern of a 22-year-old grandchild. He was sweet and attentive for the 15 minutes or so his ADHD brain allowed him to remain confined there in our bustling little corner of the ED’s “Red Unit.” By then the cardiologist had been by and confirmed to mom that they were going to implant a pacemaker, hopefully that night, explaining that they needed to do a few more tests to determine which would be the best type for her situation. When the echocardiogram specialist rolled in with his cart, James took his cue, bent down to give Gramma a kiss and a reassuring pat on the shoulder, wished her luck, and was on his way. I was touched at how much compassion could flow from his 6’ 5 ½” frame, even if it did come in short bursts like this.

The rest of the evening passed in a relative blur – mom had her CT scan, where they discovered a small bleed in the front right of her brain. They proceeded with the additional preparatory testing for the implant surgery, got her scheduled for the procedure that night, and did a follow up CT scan a few hours later to determine whether the bleed was active, which, thankfully, it wasn’t, allowing them to move forward with the implantation. I walked alongside the gurney as they transported her upstairs for surgery and stayed by her side to ensure I was there to act as “interpreter” for her as the various specialists introduced themselves and described their roles in the procedure and what they’d be doing.

Once I gave the surgeon my cell phone number and they wheeled her into the operating theater around 7pm, I went home to eat dinner and wait for the surgeon’s call. As we were finishing our meal, our neighbors texted that they were going for a drink at the restaurant down the hill and asked if we’d like to join them. Figuring I had about 30 – 45 minutes to go before the surgeon would call, and justifying to myself that a glass of wine and the positive distraction of some good friends could be a great thing right about now, I told them yes – that I could only have one, but we’d be there shortly – in separate vehicles.

Around 8:20 the call came – the surgeon had just finished the procedure and I had just crossed the halfway point in my glass of wine – everything had gone well (primarily with the procedure, though things had gone well with the wine, too). They were moving her into recovery now and she’d probably be there for an hour or so before they brought her up to her room for the night. I considered the full sweep of my day, and took a few more minutes to finish my wine before saying my goodbyes, letting Tim know I’d be back once mom was in her room and settled. (He and the neighbors carried on gamely in my wake).

The next morning she was doing well enough to be discharged by lunchtime. Her doctors wanted her to have follow up home care: nursing check-ins, OT, and PT – I was all for it, though, knowing that dad was going to need the same things when he was discharged from rehab 4 days later, I hoped the home care agency would be able to coordinate the visits so that both of my parents could be addressed in a single stop for each of the specialties, and rather than having 6 different visitors 3 times a week, we could get away with 3 visitors 3 times a week doing dual mom & dad duty with each visit.

Mom’s physical transition home was smooth, but a little disappointingly, though not really surprisingly, she fixated negatively on the pacemaker scar, and seemed to believe that this confirmed that she was falling apart. Her emotional state had me concerned. I had hoped that once she got the positive reinforcement of progress from the OT and PT home care team members, her general mindset would improve. I did all I could to acknowledge what she was feeling but to also point out the positives now that her heart was quite literally once again firing on all cylinders.

After her second visit, the OT took me quietly to the side and let me know that she wanted to do a cognitive screen on my mom. “PLEASE do,” I begged. It had been easier with dad to think about and even embrace the possibility of a dementia diagnosis given his own openness to his physical and cognitive issues. Mom was different though – it didn’t seem possible to bring something like this up as directly without upsetting her even more than she already was, so a cognitive screen, suggested by a specialist who was seeing and working with her in her daily routines, could be the perfect way to open that door, depending of course on what the cognitive screen yielded. Turns out that the numbers backed up the story that my sister and I had been wondering about for months: mom, too, clearly had dementia. As a matter of fact, her score on the “SLUMS” test was even lower than dad’s (the OT administered it to both of them). Like it or not, another dimension of our new reality was revealing itself.


Parenting the Parents – Part VI. Adventures in the Hospital. And Rehab.

(**Language Warning** – from actual quotes, so I had to keep it for the proper effect.)

Dad’s stay in the hospital for sepsis went on for 7 days. It took 5 of the 7 for the team to finally find a combination of antibiotics that beat into submission whatever rogue bacteria was afflicting him. The first night I actually came home (the Thursday after Christmas – the 27th), I broke down as I told Tim I really wasn’t sure he was going to make it: he’d seem to be OK for a while, but then his fever would spike or his blood pressure would tank. That night it had happened again in the early evening – he tried to eat his dinner but he was tremoring so badly that he couldn’t get a utensil to his mouth. He wasn’t able to hold a drinking cup with a straw steady – his arm jerked so violently that I was afraid he would poke himself in the eye. It was devastating and heartbreaking to see him try, yet not be able to do a thing that had been so simple and rudimentary only a couple of days before. So I sat there with my mom and I fed him – as much as he would eat.

I was friendly with every PCA (Patient Care Assistant? Associate?) and nurse who came onto his coverage, which helped when I was obsessive about knowing his vitals every time they were taken. I was vigilant on the timing of his Tylenol, his Midodrine (blood pressure booster) and watched his IV bags like a hawk (though truth be told, the PCA’s and nurses were equally vigilant). After a few days, the word must have telegraphed, because then every morning when I came in, they would fill me in on the latest of everything as soon as they saw me. Everyone was wonderful and kind and as attentive as they could possibly be considering that he was far from the only patient in their care.

I lost count of the number of times I drove mom back and forth to the hospital; how many trips we made to the cafeteria or the Au Bon Pain in the lobby, or god knows to the bathroom. I figured out after the first day that if I wanted hot water to wash my hands in the sink before I left the bathroom, that I had to turn the hot water on when I walked in the door – by the time I was done, it would be hot.

On New Years Day, my neighbors throw an annual open house party with a huge brunch, so I asked my mom if she’d like to join us there for a little while and to my delight she said yes. I figured a little socialization and change of scenery would be good for her, and we could head to the hospital after that. It was a beautiful, sunny, uncharacteristically warm day – I went down to pick her up and when we got back I tossed out the idea of walking to the neighbor’s. She liked that, so we made our way down the hill. She said she was feeling like she couldn’t get her legs going right and she’d been a little dizzy, so we went slowly. I introduced her to the neighbors and we had some brunch, and after another 45 minutes or so, I asked if she was ready to go. She said yes, so we began our trek back, which is a lot more taxing since it’s all uphill. Tim was on the neighbor’s back porch and had a clear view of us as we moved one careful step at a time. He texted me to ask if he should drive us up (he’d gone down in his truck) and by then, that seemed like an excellent idea. My mom usually got around great, so her inability to walk, and the dizziness, seemed strange, but I chalked it up to fatigue and stress.

Dad was discharged to rehab the next day. His stay lasted just about 2 weeks. Sometimes I brought mom to visit him; sometimes Hannah (their caretaker/companion) brought her, and early on, I made sure that Hannah got to see the work that the physical and occupational therapists were doing with him so she could help him once he came back home. He made remarkable progress, somewhat impelled, I think, by his roommate, Bob (not his real name), who was clearly not a short-term rehab patient.

Bob was sullen, cantankerous, and often paranoid, though he had his glimmers of sociability. I could see from some of the evidence in his space that he was a Vietnam Vet. It was apparent that he was at a much more advanced stage of dementia than my dad: verbal communications were trying – he was incapable of staying on point through a sentence, leaving his conversational partner working hard to infer where his thoughts were going. One morning, he engaged me, which was surprising since all I’d ever felt from him up to then was a malevolent energy. At first I was excited, but the “conversation” quickly devolved into an accusation that I, or my father, had stolen something of his (I could never quite get to what the missing item was); then we spent a disproportionately long time discussing a framed painting that hung on his wall, which he said a friend had done. Despite it not being my artistic cup of tea, I feigned admiration to shift the ground back to something closer to positive, and away from whatever it was he was missing.

He had an impressive collection of “coffee table” books featuring local history and architecture, which, that day, were spread out in a jumbled hodgepodge on his bed. He began to show me some of the photos, which I was finding intriguing, but we didn’t get very far, as his narrations meandered off to unrelated and disjointed places. There were one or two other male residents who would sometimes roll in to visit and chat with him and I was astonished at how their conversations seemed to flow – they still made no sense to this outside observer, but they appeared to make sense to them, like twins with a secret language. It left me wishing I knew more about how best to communicate with people with more advanced dementia. It also left me groping for a way to extricate myself and get the hell out of there. I hoped my dad wasn’t having too much of Bob’s suspicion and ire directed at him. It was hard to ask with them sitting in the same room. He hadn’t complained about it, so I presumed he hadn’t.

Late in the afternoon on the day before my dad was to be discharged, moments after arriving home from a visit with him, dad called me, clearly irritated: “Marcia? It’s your father.” (He always began phone calls like this. Even though for years we’d had the miracle of caller ID, and when he called, I answered the phone saying, “Hi Dad! What’s up?”)

Me, with my, “I’m making a little bit of fun of you now” tone to my voice: “I know it’s you! What’s going on? I just left you 15 minutes ago!”

“Marcia, I’m not sure what to do.” (Pause)

Me (thinking, “Oh, god. What now?”) “Well, maybe I can help – what’s happening?”

“I gotta take a leak, and my roommate Bob is sitting there in his wheelchair, and he won’t let me get by.”

Me (first pressing my lips together, really hard, to flatten my voice and stifle the smile tugging at the corners of my mouth): “Did you press the call button for the nurse?” (I also know that a catastrophe likely isn’t looming because they have him protected with adult diapers due to his advancing incontinence.)

“Yeah but they haven’t come IN yet.”

“Okay – let me see if I can call the nurse’s station and get them to come in and help.”

I hang up and call the facility, explaining the situation. They transfer me to my dad’s nursing station, and I relay the predicament that seems to be unfolding in room 234. The person on the phone calls out to the others on the floor to ask where Bob is. They know Bob. I hear an answer that he’s in the hallway. I ask if that means the hallway *outside* their room – I get an affirmative, though it sounds less than solid. I’m perplexed, but say, “OK – the situation must have already resolved itself. Good.” I hang up, deciding I’ll give it a few minutes before I call dad back to be sure he’s been able to get to the bathroom.

Three minutes elapse. Dad calls again: “Hello Marsh? It’s your father again.”

“Yeah dad. Is everything all set?”

“No! I gotta take a damn piss and my roommate Bob won’t get out of my way!”

(Now I’m confused, and I tell him so) “But I just talked to the nurse’s station. They said he was in the hallway. But you can’t get by him to get into the bathroom?”

(He responds loudly enough that if Bob is anywhere within 30 feet he can definitely hear. I experience a momentary beat of worry for dad’s safety that night.) “He’s blocking the damn door and I gotta take a leak! If he doesn’t get out of the way I’m gonna piss all over him!!”

A giggle briefly escapes but I tamp it down, forcing a couple of tears into my eyes, which I blink away and clear my throat. I don’t want him to think I’m not taking this seriously. I say, “I’m sorry dad – you should probably avoid doing that if you can. You have Depends on, right?”

(He doesn’t answer – he’s just revved up now.)

“Let me call the nurse’s station again. I can’t quite figure out why they think he’s out in the hallway.”

(Conceding slightly) “All right. This is the last time I’m going to call you about this.” (I get the sense that he thinks he’s been calling me about this for the last hour.)  “If I have to piss on him, I’ll *piss* on him!!”

“Okay. I’ll call them again. Hang in there dad. One more night. You only have one more night. Tomorrow you come home. I’ll be there when they told me to, at 11 a.m. sharp.”

I call them again, to plead for someone to just go and double check – my dad seems truly agitated. They say they will. I choose to believe them, because I don’t want to drive back over there to play lavatory referee between my dad and a guy who seems to think I’m capable of pulling off an armored car heist. Tomorrow can’t get here soon enough.

The balance of the night apparently passes uneventfully. As promised, I’m there, actually 5 minutes early the next day, at 10:55. I walk into his room, where he’s sitting in his wheelchair, fully dressed, sneakers and jacket on. Bob is AWOL. Dad looks at me with something between true and mock annoyance: “Where you been? I’ve been sitting here since 8:00!”

“Whaddaya mean?” I respond with my own mock annoyance. “I’m here right when I said I would be – actually I’m a few minutes early! They told me I couldn’t get you until 11:00, remember? If I came earlier, they wouldn’t have let me take you!”

I’m not sure he believes me, but now I’m just focused on trying to be sure I have everything of his – clothes, toiletry items, etc. I’ve discovered that things have a way of disappearing around here, but if you put some elbow grease into it, you can usually find them. “I’m just gonna make sure all your clothes and everything are all here, okay? I have the list I filled out on your first day, so I’m just going to go through to make sure we have it all.” After a fair bit of searching and gentle staff interrogation, I track down all the clothing items, or at least, all the really important ones. I retrieve his Ziploc bag of toiletries from the bathroom, glad that Bob is out on recon so I don’t have to absorb any grand larceny accusations.

It takes me about 15 minutes but finally I feel like I have everything. I sign the discharge paperwork and add another packet of information about my dad’s diagnoses, medications, and activities to my backpack. One of the PT team wheels him out as I walk alongside them. When we get to the car, he locks the wheelchair, reminding dad what they’ve been teaching him about how to use his arms and hands on the arms of the chair to help himself up. I brought dad’s new walker and stashed it in the backseat, but don’t need to take it out – the PT just steadies him for the 2 steps to the car, carefully ensuring he has his balance as dad then reaches up for the grab handle inside the passenger door – such an important feature that never meant anything to me until I began transporting my parents everywhere over the past 8 months. He does a pretty fine job of lowering himself onto the passenger seat and coaxing his legs up over the bottom of the door opening – again, an unconscious bit of body mechanics that I’d never thought much about until I saw the effort and energy dad always had to expend for such a seemingly simple motion, every time he entered or exited a car.

As we made our way home in the cloudy but bright January glare, I made some pleasant small talk:

“So, you glad to be going home dad?”

(With a little sarcastic laugh): “Yeah – that roommate of mine – Bob. He’s a lunatic!”

“Yeah – he was a challenge. You were on the short-term rehab side of that place, but I don’t think he was a short-term patient. I think he’s been there for a while, and I think his dementia is pretty advanced.”

“It’s a good thing there wasn’t a baseball bat in that room. I’d have hit him in the fucking head!”

Now my laugh flies out of my mouth, full force: “HA!! Yeah – good thing, dad. Good thing.”


Parenting the Parents, Part V. Expect the Unexpected.

Unless you work a job with very strange hours, a ringing phone at 5:45 a.m. rarely signals anything good. Our cell signal at home was perfectly awful, so I should have been keeping our regular landline phone in the bedroom, but I wasn’t. Both of the portable handsets were somewhere downstairs.

Normally I woke up no later than 6:00, so I was in that foggy, not-quite-sleep-but-definitely-not-awake state; radio-alarm tuned to the local NPR station with the news stories playing into the plot lines of my nonsensical dreams. In a deep recess of my brain I heard a far away sound that jogged something in my subconscious, but it was so faint (and the bedroom door was closed) that by the time I was awake enough to register it as “maybe the phone ringing,” it had stopped. Was I dreaming that? I was alert now, though, so when, about 10 seconds later, it started again, I was out of bed, down the hall and down the stairs in a few seconds of sheer panic. (Even as I type this, that same sensation of heart-pounding dread is welling up in me).

I hardly had to look at the caller ID screen to know who it was. I picked up the phone, mustering as much composure as I could, but without saying hello; instead it was, “what happened?”

Mom, sounding extremely upset: “Marcia (also *never* good when that’s the first word out of her mouth). It’s dad. He fell in the bathroom and I can’t get him up. I don’t know how long he’s been there.”

Me: “Is he awake?”

Mom: “Yes.”

Me: “OK. We’ll be right down. Don’t try to move him.” I hung up and in the same instant yelled for my husband, “Tim!! Tim!!! We have to go to my mom’s. My dad fell in the bathroom and I can’t lift him myself.”

Trooper that he is, he was down the stairs in less than 30 seconds, and we were out the door in our pajamas, slippers, and winter coats. We bolted into the condo 3 minutes later and found dad on his right side, stuck between the toilet and the wall in their master bathroom, unable to muster enough upper body strength to right himself. I ran through the litany of questions/commands: “Did you hit your head? Does anything hurt? Let me see your eyes.” We carefully slid him out, away from the wall and the toilet, and gently sat him up. I ran my hands along his right shoulder, arm, side, and hip checking to see if he winced for evidence he’d broken anything but was being too stoic to admit it. Assured that he hadn’t done any major physical damage, with me holding his feet steady so they didn’t slide, Tim got behind him and lifted him to standing. We got on either side of him and helped him over to the arm chair that sat next to the bed.

While I asked him more questions about what had happened, Tim went to join my mother in the kitchen. I could hear them talking – not well enough to know what was being said, but enough to hear the emotion in my mother’s voice. Tim came back in and stayed with him in the bedroom, while I went to the kitchen to get him some water (I suspected that he, like many older people, was pretty chronically dehydrated, which couldn’t be helping him). I had been fine and solid during the previous 5 or 10 minutes getting dad out of his predicament and back to vertical, but now that the immediate adrenaline had worn off, I was shaking.

When I got to the kitchen, I gave my mother a long, teary hug. She was distraught over not having heard him, unsure of how long he’d been there. I reminded her that starting today, things were going to get easier with Hannah (their new caretaker) coming. I filled the water glass and brought it to dad and told him to drink it, knowing that if I asked him if he was thirsty, his answer would be no, but that if I told him to drink it, he would.

When we were sure dad was OK and everything had simmered down, I reminded them I’d be back later when Hannah arrived, and Tim and I went back home. I forced myself back into my normal morning routine for a few more hours until I would go back to welcome Hannah. We’d also been talking for a bit about getting dad a lift/recliner chair, and a better walker than the crappy standard-issue aluminum one he’d been using. I resolved that once Hannah was settled in that morning, I was going straight to the home medical supply place.

We’d been looking forward to this day for what felt like years already, so I was happy to see Hannah slide comfortably into a routine with them which, even after 15 minutes, seemed as if it had been in place for months. Feeling optimistic, I headed to the home medical supply shop on a mission. I found a great chair that seemed to be a good size for dad – it even had a little side-table accessory. I tested it out (comfy!!). I took pictures and grabbed the brochure. I bought several different sizes of quilted, waterproof pads that we could put down on chairs and in bed in case of accidents. I got them a portable, suction-attached grab handle for the shower, and a super-duper new walker with rubber tires (the larger ones were fully articulating, to help with maneuvering in tight spaces), hand brakes, and a built-in, fold-down seat with concealed storage underneath.

I piled it all into my car, drove it back, and pulled into their driveway feeling like one of Santa’s elves on a post-holiday follow up assignment. Mom was truly grateful and approved of the chair. Dad also seemed to like the chair, so I installed the grab handle in the shower, then returned to the store, bought the chair, and scheduled delivery for Friday. I stopped at the condo on my way home to update them.

Sometime around 5:30 or so, the phone rang again. I saw that it was my parents’ number, so picked up, expecting a happy recap of “Hannah, Day One.” It was my mom, but this was not her “happy recap” voice. She began again with “Marcia.” My heart lurched. She was barely able to articulate a full sentence, but the gist was that something was wrong with dad – he was shaking. He wasn’t eating, and he wasn’t answering her. I told her I’d be right there.

Tim came with me again. When we got there, dad was in the chair next to his bed, and “tremoring” is the best way to describe what his body was doing. I was thinking I needed to run through the checklist for a stroke, so Tim Googled it and prompted me through. I asked him to smile. (Even on both sides). I asked him if he could raise his arms. (He nodded, but then didn’t do it). I asked him if he could repeat a sentence after me. (He nodded again, but again, didn’t do it). I told mom I was calling 911, and did. They had me run through the same exercises while they dispatched an ambulance. They arrived quickly, and Tim helped guide them in. They ran through all their checks and vitals-taking. Their opinion was that it was probably a fairly severe urinary tract infection (they’d seen them countless times). I remember his blood pressure was quite low but not much else (fever? pulse rate? blood oxygen? I’m sure they gathered all of that but I don’t recall any of the readings). I decided I needed to ride in the ambulance to the hospital with him and told Tim he could drive my mom there in my car.

The beauty of having an ambulance as your transport to the Emergency Room is that when you get there, they’re ready for you. No waiting around in the waiting room to be seen, worrying that whatever you have might kill you before you get in. We’d had the presence of mind back at the condo to grab all his important info – Medicare and other insurance cards, photo ID, etc, so I had everything ready when the admitting person wheeled her cart and laptop over to me as I sat on a bench near my dad on his guerney in the hallway. We were in a private room in the Emergency Department soon thereafter with all manner of support staff and doctors coming in and out, asking questions, checking vitals, hooking him up to IVs and an oxygen feed. I think we were moved later to a different room in the ED, because Tim had come back to the first room, then went back out, and I remember directing him via text to a different room to come back again at some point that night. The staff brought us snacks, water, ginger ale. Tim was too fidgety to stick around, which was OK, so I told him he could go home. Thankfully I had my e-reader app on my phone and occupied myself with my latest book club book.

Around 1 a.m., a tall, gray-haired, very serious-looking doctor came in and introduced himself as the head of the hospital’s infectious disease unit. He explained that my dad was in sepsis, also suffering from pneumonia and a UTI. He told us they were working on figuring out what bacteria was doing this; they had him on 2 different antibiotic drips and would continue to do everything they could, but he needed us to know that this was serious, and there was a chance my dad may not make it.

At that moment, I wasn’t dwelling on a planet where acceptance of that was possible, but worry and fear were suddenly etched on my mother’s face and tears welled in her eyes. The doctor, seeing her reaction, acknowledged it, spending another few minutes to explain the protocol they’d follow, which, thankfully, took a little of the edge off her panic. We spent the rest of the night twisting ourselves into momentarily restful positions in molded urethane visitor chairs against the wall in his room, separated by the rolling tray table we couldn’t be sure he’d use for its intended purpose, but which was serving as our headrest for the night.

Parenting the Parents, Part IV. Moving Toward a Solution.

I’ve told many people along the way that I wasn’t sure which was more challenging: helping with everything with my dad now that he was officially diagnosed with vascular dementia, or trying to figure out how to help my mom manage this. Mom had been minimizing dad’s challenges for years, and regardless of the reason, I understand. It could have been because of the whole not-wanting-to-be-a-burden thing. Maybe it was denial. Perhaps it was fear. It could even have been a subconscious way to channel otherwise unresolved anger that had built up over decades for any number of other reasons – I think my mom followed the expected path that most women of the late 1950s and early 1960s did, burying any barely-formed imaginings of who *she* was, and getting pulled along in the slipstream of gender norms: first wife, then mother, then . . . what? It could have been a combination of all of those things, maybe even more.

My dad was always a pretty open book: a straightforward guy who made it very clear that there was nothing more important to him than to be a good provider for our family. He was an only child. When he was quite young (sometime, in the 1940s I believe – my grandmother always told us he was 8 years old), my grandmother (who was, in just about every conceivable way, the opposite of my mother – a brash, opinionated, dyed-redheaded, 2-pack-a-day smoker), divorced my dad’s father. This was no small deal for a Sicilian-Italian catholic woman of that time, but she had her principles, and my dad’s father had violated them. He, according to her, had pledged his financial allegiance to his own mother ahead of my grandmother and my dad, and that was the end of it.

I’m certain the real story was considerably more nuanced, but that was how she told it, and that was the only story we ever knew. At some point later, she met and married the man my sister and I knew as our grandfather, who was a wonderful, kind, generous, loving person. He was, from all indications, a perfect step-father to my dad, but I don’t think I’m going too far out on a psychological limb to suspect that my dad’s experience with his own father (probably relived mostly in a mental rear-view mirror through his mother and the tellings and re-tellings of the divorce story to friends and family) played a rather significant role in his desire to become the kind of person whose own devotion to his family would right those perceived wrongs. He succeeded magnificently.

Mom is more complicated. She was also an only child. As a kid, based upon the stories told by her younger cousins, she was a consummate tomboy and the leader of their little clan. She fished; she hiked; she climbed trees. She used hollowed-out half-watermelon rinds as makeshift summer “sleds,” rocketing down the huge grassy hill up behind my grandparents’ house, and, if I remember the stories correctly, even down paved streets near the house they lived in before that one. She played softball. She had a cat named Yogi, after Yogi Berra.

When my sister and I were young, mom expressed a lot of creativity. She took art classes; she painted and drew. She made the coolest Halloween costumes. She could sew like a professional. She did needlework. One Christmas, she built scale model dollhouses for my sister and me. As a mother, she had her rules – not too many, really, but to the logic of my kid-mind, they didn’t always add up, so I tested boundaries and got my comeuppance when I got caught, which was often. Other than that, she let us be kids. We were lucky enough to live in places where we could be “free range.” Even into high school and beyond, she basically let us make our own decisions, and make our own mistakes, a quality that I didn’t come to fully appreciate until many years later.

Somewhere along the way with mom though, something shifted. She always had a fiery streak (which was evident during those times of “comeuppance”), but as we got older and more independent (and, to be honest, consumed with our own lives, and more distant) a deeper anger seemed to bloom. Most of the time she was fine, but occasionally I’d be on the receiving end of a passive aggressive sideswipe.

Fast-forward to 2018, once they decided to move, my sister and I (and often my dad) found ourselves navigating a near-constant emotional minefield with mom. My sister and I took on all the logistics of the move, but mom was easily overwhelmed by it all, which would manifest mostly in the form of an angry paranoia – that the movers would steal something; that we were somehow plotting against her if we had a conversation about anything at all when she was out of the room. As the move drew closer, I learned that usually the best response was just a hug, even if her anger and negativity pushed me to my own limits.

As the move neared, I measured their furniture, and measured the new spaces. I ran around in the empty condo with my list of furniture and measurements and a tape measure, figuring where various pieces might fit. I labeled all the furniture back at their house with post-it notes bearing the names of the rooms in which it would be placed, and had my sister video me walking through the condo to describe to mom where I envisioned that the furniture could all go, even putting corresponding stickies on the floor in the empty rooms.

My sister and I had noticed, with all the time we were now spending with mom that the stress of it all seemed to be impacting her: she was having a hard time getting her thoughts into words and we often had to repeat stories or instructions that had more than a few parts because she’d get confused.

I had high hopes that the visit to the geriatric psychiatrist would make it more clear to mom what dad’s new primary care doctor had concluded over the summer after meeting him, administering a “SLUMS” test (St. Louis University Mental Status) and sending him for an MRI: the “symptoms” he was experiencing (shuffling, incontinence, confusion) were a part of his vascular dementia and not something he could control. They recommended a medication, donepezil, that might work to slow the progression of his dementia, and possibly provide some cognitive improvements in the meantime. They were clear, however, that it wouldn’t be a cure – there was no cure – and that over time he would get worse. To help to combat this, they also strongly urged that he start doing more physical activity, and that we look into some local programs that were specifically intended to do that in safe and supervised settings.

Dad was never a very social guy, so my sister and I were doubtful we’d be able to get him to agree to join any program where a bunch of “old people” gathered to play games, but I reached out to them anyway, figuring we needed to at least explore them, and cajoled him into going by telling him that if he hated them, we wouldn’t make him go. After a couple of false starts (no doubt precipitated by his complete lack of interest in doing this), I got them out to both programs. Not surprisingly, mom was far more intrigued than dad was. By the time we got to our second follow up appointment with the geriatric psychiatrist, it was clear that this wouldn’t be a path he was going to follow.

They were mostly settled into the new place, but mom was still given to bouts of anger, blaming dad when he’d have an accident, often berating him with mean outbursts that worried my sister and me. This wasn’t good for either of them. We had to do something. While mom and dad both had talked about eventually bringing someone in to “help,” mom was resistant, insisting that she couldn’t understand how anyone *could* help. What could they possibly do? I suggested that we talk about it at the follow up with the geriatric psychiatrist – I was sure she wasn’t the only one in a similar situation who was feeling overwhelmed by this, and that there were agencies out there who existed for this very reason. Every time I’d witness an incident that would anger or frustrate her, I’d tell her that help was coming – we were going to find the right solution to lighten her load. Slowly, she warmed up to the idea.

At that next geriatric psych appointment, we asked for referrals for some good agencies in the area, and once again, my sister leapt into action, researching all of them, looking up not only client ratings, but employee ratings. She had preliminary conversations with 2 of them that had the best ratings, suggesting that I also speak with them.

By mid-December, I was making an appointment with the agency we’d decided was the best choice, to get their “Community Liaison,” Dave, out to meet with mom & dad. The plan was to explore getting a caretaker for dad, but I knew with one simple question Dave asked when I spoke with him that we’d truly found the right place: at the end of a conversation that had mostly been about dad, he asked, “and how is your mom with all of this?” I told him that while she had evolved to a point of cautious optimism, her jury was still out, and that he could be dealing with someone who at best wasn’t convinced, and at worst, could go completely negative.

As the time for Dave’s visit drew closer, I took every opportunity I could find to offer subtle encouragement around the idea of having a caretaker come in. And when Dave walked into the condo that day, mom welcomed him like an old friend, shocking me when she gave him a hug almost as soon as I took his coat. He was wonderful and thorough, and spent well over an hour talking with my parents, working a long list of questions seamlessly into the flow of their conversation. I was as giddy as I’d been on Easter night the previous spring when mom told me they wanted to buy the condo.

A week or so later, after several follow up conversations, we arranged to introduce my parents to Hannah, the caretaker and companion Dave and his team (and I) had determined would be the best fit for them. I had told my parents everything I knew about her: she’d emigrated here from Ghana about 15 years ago; she was married with 2 sons. She’d lived in North Carolina for about 10 years before moving here about 5 years ago. She loved to cook, and she had been a caretaker for nearly the entire time she’d been in the country. I wasn’t sure what to expect when they met, but from the minute Hannah walked in the door with Dave, my mom was sold. She greeted Hannah with the same warmth she’d shown with Dave on his initial visit. Hannah had a wonderfully sweet disposition; she seemed a bit on the shy and quiet side, but my mom (and by default, my dad) took to her like a fish to water.

The plan was set that Hannah would start during the week of Christmas. Christmas fell on a Tuesday, so we figured we’d have her come that Wednesday, Thursday and Friday for 6 hours each day; she’d then come back the day after New Year’s day for another 3-day week (we were going just with weekdays to start) before launching into full-time, 5-day weeks during the week after that.

We were all excited and enjoyed the holidays, though our plan to have dinner at my house on Christmas Eve with my sister, her husband, step-daughter, and my mom and dad got a bit re-worked when dad was feeling a little off that day. My sister and her family came and ate dinner with us, and after dinner, we packed up plates for mom & dad, along with their present (a new compact stereo for mom to play her CDs). My sister headed back home on Christmas day with my mom and dad opting to lay low and relax at the condo while my family and I drove down to spend the day with my husband’s brother and his family.

I awoke the morning after Christmas, the day Hannah was starting, to my phone ringing at 5:45 a.m. In  ways I couldn’t begin to really imagine, things were about to get more than a little crazy.