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

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

“I’m not taking those new pills.”

Instantly I knew what had happened.

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

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

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

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

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

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

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

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

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

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

“Did you eat anything when you took it?”

“No.”

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

“Better.”

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

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

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

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. . .

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.”

“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”

(** 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.

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.

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.