This post details events that occurred earlier this year. I am taking my time processing these events before publishing. Thank you for staying with me.

A Thousand Tiny Cuts

There are little things that happen when you introduce (or reintroduce) friends to your beloved who has been diagnosed with a degenerative brain disease. And it feels like your heart is subject to a thousand tiny cuts, each one of which bleeds, each one of which hurts, each one of which mocks you and your situation and your grief. Our trip to Malaysia was just one of those many times.

A Visit with a Friend

I have a friend in Malaysia, F. Mr. J and F have never met. . . before today. I introduce them in the hotel lobby. We are waiting for F’s brother to pick us up. Mr. J decides this is a perfect time for a cigar. “Right now,” I say to F, “Mr. J is working really, really hard to be ‘on.’ Later in the evening, he may ask the same thing three times in a row. And when that happens, we respond, each time, as if it is the first time he has asked the question or said the thing.” My friend F nods. “I understand,” he says.

F’s brother, MF, met Mr. J once in 2023, shortly after Mr. J was diagnosed. We met for dinner at the time, and I didn’t realize until we were at the restaurant that Mr. J was wearing pajama pants – to a high end restaurant. MF said to Mr. J today, “You are doing so much better than the last time we met!” “Am I?” asked Mr. J, who had no memory of meeting MF before today. “Oh, yes,” said MF.

It’s a Thing

Back in the hotel after dinner, Mr. J calls to me from the bathroom. “Hey, baby, can you help me?” “Of course,” I say, walking to the bathroom with a certain amount of trepidation. Mr. J is not known for needing help of any kind in the bathroom. “I don’t know why the water is cold,” he says. “I turned it all the way up.” I take one look at the faucet and see the problem. He turned it all the way up on cold. I swing the dial to hot. “Try this,” I say. “But be careful, it might be too hot.” It is, indeed, too hot. “I knew you could fix it,” says Mr. J confidently. Followed by, “What did you do?” “I just moved the dial a bit,” I respond. This is all he needs.

Later, I notice I am sunburned. “Apparently I got some sun today,” I say. “Well, yeah,” Mr. J says. “You were up on that bus. . . “ That was two days ago.

Headed Home

We are headed home. It will be a long 24 hours. Mr. J keeps asking the same questions about what we are doing, how long are the flights, when we will be home, etc. A has taken the lead, responding each time as if it was the first time he asked. When Mr. J started watching videos on his phone, without the benefit of headphones, A simply reached across the table to him and said, “Could you turn that down a bit?” as if it was the most normal thing in the world.

We are truly blessed with really good friends.

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This post details events that occurred earlier this year. I am taking my time processing these events before publishing. Thank you for staying with me.

Not Enough Time

After an absolutely thrilling three days, we leave the elephant preserve (EP) and head back to Bangkok. Mr. J and I agree we have to come back and stay for a week. It was absolutely not enough time with our elephant. We have 36 hours to taste the city. Mr. J forgets details. We wake up to meet a tour guide. “What are we doing today?” he asks. “We’re touring the city!” I say. (This is not entirely true, of course. We are instead hitting some main attractions.) After the tour, Mr. J asks, “What are we doing tomorrow?” “We’re going to Malaysia.” “Is D coming?” Mr. J asks. “Yes,” I say. “And A,” preemptively. “Oh,” he says, sounding somewhat surprised. At the airport, he asks, “Where are we going again?” “Malaysia.” “Oh, that’s right,” he nods.

An Incident At Customs

The flight between Bangkok and Kuala Lumpur is only two hours. We land, gather our things, and head to the exit (Kelur). At the departure point, all of our passports are rejected. A very helpful person who appears to be law enforcement asks politely if we have filled out digital admission forms. We have not. He turns us around and we head off to fill out the forms. Of course, they want everything from flight number to time in country. We each fill this out on our individual phones at our own pace. A finishes first, then D, then me. Mr. J is having trouble. I turn to A. “If I say anything, he’ll think I’m being condescending. Can you. . . “ “Of course,” A responds, stepping towards Mr. J. “If you let these women help you,” she says, pointing to one of the women clearly designed to help wayward passengers such as us, “it will go a lot faster.”

Once Mr. J indicates he has finished, we head back to the customs gates. D, A, and I go through without problem. Mr. J, on the other hand, is standing on the other side of the gates, still trying to get in. It dawns on all three of us at once. We should have left someone with Mr. J until we were sure he got through. I am particularly hard on myself, asking what in the name of all that is holy was I thinking, presuming Mr. J could execute this? A asks Mr. J to see his passport to confirm he is putting the correct end into the reader. After a half a dozen more tries, Mr. Security Guard tells Mr. J to go to the manual entry point. But Mr. J doesn’t want to go to manual entry. He stands there, willing his electronic information to be sufficient. But it is not. Of course it is not.

With Mr. J on the far side of the customs bay, and A, D, and I on the other, we all walk towards manual entry. I hold my breath, willing Mr. J not to make any smart aleck remarks, while also willing him to be together enough to get through customs without further delay. He is waved through. Three of us exhale with relief. Mr. J, on the other hand, is just thrilled to have an actual stamp on his Passport.

The Long and Winding Road

I appreciate my writing has a pattern. “He’s going to die.” “He’s getting better.” “He’s really getting better.” “Damn it!! He’s not getting better and I can’t believe I fooled myself into thinking that he was.” “He’s going to die and I have to get used to that.” “I really think he’s getting better.” “Is that degenerative brain disease, or is he just being a dick?”

It’s not what anyone would call a traditional story arc. But it’s my story arc. I managed to experience all of these emotions while on this trip. And at regularly scheduled intervals, of course.

Central Market

A and I leave the boys behind and go visit Central Market. I am looking for a headband with generous coverage. A is just looking. We find all sorts of things, including a shirt for Mr. J, headbands, a bandana for D, and a fun pair of pants for A. We are both pleased with this trip. “I would like to come back,” I say. “But I’m not sure Mr. J has another trip in him.” A, as always, is completely honest with me. “I’m not sure he has it in him either,” she says. “But he seems to be doing okay, even though he’s functioning below what might previously been considered normal.” This is true. He is doing well within his circle of love. “Maybe one more trip,” I say, trying not to be wistful about it. “One more,” A agrees. “At least.” I am holding on to that.

Perhaps a bit too hard.

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This post details events that occurred earlier this year. I am taking my time processing these events before publishing. Thank you for staying with me.

You can find a preliminary discussion of our Thailand trip here:

A Trip Plan Based on Hope - We've planned a trip around the world!

Going it Alone

Recently, I made a fairly significant financial decision. I did not consult Mr. J. I didn’t even think about consulting Mr. J. I just did it. Executed it. Didn’t give it another thought. A week later, Mr. J announced he wanted to have a talk. “Okay,” I said, cautiously. “I know there was a time,” he began, “when I was first diagnosed, that I couldn’t help with making decisions about our lives. But I’m better now. I think I’m entitled to have a say.” As I am processing this very rational, well thought out argument, he holds up his hand. “I don’t want to hurt your feelings,“ he hastens to add. “I just want to talk about this.”

Friends, this is very much not what degenerative brain disease looks like. “You’re right,” I say. “I’m sorry.”

Mr. J has an Announcement

We are about to depart on our trip to Thailand. Mr. J announces that he has a subject he wants to discuss with me once we are at the airport. “Okay,” I say. Hey. We’re headed to Thailand. I’m up for anything!! Once seated in the lounge, breakfast before us, Mr. J clears his throat. “I think,” he begins, “when I thought I was dying, I switched into neutral. No great feelings of sadness. No great feelings of joy. Just numb.” (This is not exactly how I remember this, but I don’t argue.) “I’ve decided to bring joy back into my life.” I smile a big smile. “That sounds delightful,” I say.

Thailand is a Long Way from the Midwest

If you haven’t traveled to the Midwest US to SE Asia, let me enlighten you. If you are lucky, you can get a direct flight to Seoul, South Korea. This takes between 15 and 16 hours. Then a short layover, then a jaw dropping six (SIX!!) additional hours to Bangkok. For us, this was followed by an hour and a half trip to our destination. Needless to say, we crawled into bed and collapsed in a heap.

I am watchful of Mr. J. That kind of travel can take a lot out of a person, even on their best day.

The Issue with the Elephant

When we arrived at the Elephant Preserve, we were given a list of instructions. “Don’t run in front of the elephants.” “Don’t pick up food that they’ve dropped. They’ve been eating their whole lives. They know how to find food they’ve dropped.” “Do not spend time with elephants that are not yours. Your elephant will notice and get jealous.”

Introductions

Within hours, Mr. J and I are assigned our very own elephant, K. We get to meet her, and we bring to the meeting a basket full of food. Cucumbers, turnips, some sort of grasses. Mr. J and I get into a rhythm. He gives one. I give one. K is no dummy. It takes about two rotations for K to figure out this pattern. She turns her trunk from one of us to the next, back and forth, taking our offerings. When the food was gone, I took the moment to lean in to her, forehead to . . . septum? We spent some time standing silently, then K backed off and began to sway. I swayed with her and turned, wondering where Mr. J was. He was off, talking with another guest, B, and looking at B’s elephant.

Mr. J Splits Hairs

“You’re not supposed to be looking at other elephants,” I say. “I’m not looking at another elephant,” Mr. J replied. “ I’m talking to B.” “K thinks you are looking at B’s elephant. She going to get mad. Come over here,” I beckon. He comes back to me and K.

Mr. J Forgets the Rules

Later, I go back to our cabin to get sunglasses. As I’m coming out of the cabin, Mr. J is rushing up. “I did a bad thing.” (And there it is, folks. Mr. J’s brain degeneration rears it ugly head, I just know it!) “What happened?” I ask, struggling to keep my tone neutral. “I was talking with B and her elephant, and K got mad.” “How do you know K got mad?” “Because she made a loud noise and then got up on her back legs and pounded on the top of the roof with her trunk. I thought she was going to knock the shelter over!!”

“I told you not to talk to another elephant! They told you not to do that!” “I don’t remember that,” Mr. J said. “You don’t remember me saying that to you ten minutes ago?” I ask, incredulous. “But I wasn’t doing it then. I was talking to B.” I know better than to argue. “Did you ruin our relationship with K?” “They said to get some cucumbers to feed her.” “Okay,” I respond. “Where do we get cucumbers?” “I don’t know,” Mr. J says. “That’s why I was coming to find you.” (Note: I get it that this was not my best response. I’m usually pretty good about not shaming Mr. J for forgetting things. I blame it on the potential severity of the situation and jet lag. Which still doesn’t make it okay, of course. . .)

Cucumbers to the Rescue!

With only a few inquiries, I locate six cucumbers and rush Mr. J back to K. I start by moving in slowly. “Hey, K,” I say. “Mr. J and I have more treats for you.” Her trunk is extended before I finish my sentence. It is possible K only speaks Thai. But K remembers Mr. J, and remembers our rhythm. She takes my cucumber, stuffs it in her mouth, and turns to Mr. J. It seems our relationship with K has been saved. But I can’t get this out of my mind. Was it possible he just wasn’t listening? Does he have a travel hangover? Or does he, in fact, have a degenerative brain disease?

A Bears Witness

There are a few other incidents, the details of which I don’t recall over the next two days. At dinner on the third day, A sat down next to me. “I think he’s deteriorating,” I whispered. “He is,” she agreed. This somehow brought me comfort. “I notice that he gets worse as the day goes on,” A said. “I don’t know if it’s the time change or the heat or the disease,” she continued. We sat in silence.

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This post details events that occurred earlier this year. I am taking my time processing these events before publishing. Thank you for staying with me.

Also, this post contains several four letter words. Be advised. . .

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Monday

“So what are your thoughts on the assignment with M?” I ask. “Are you telling me to do it?” Mr. J inquires. “No,” I say matter of factly. “I’m asking you what your thoughts are on the assignment.” “I just find the whole thing. . . stupid.” “Did you want to go back to working full time?” “No.” Mr. J replies. “I just want my license back.” “What do you need to do to get it back?” I ask. “I’ll find out tomorrow.” Mr. J sighs. I know what that means. It means he’s going to call the licensing board.

Color Me Not Surprised

Three days later, Mr. J has not called the licensing board. It’s as if he’s forgotten all about it

Spending

Mr. J has a part time job. Which means he has part time money. While I was out of town last week, Mr. J purchased 6 books (not on his kindle – actual books), two sets of glassware, some Shoyu, and a camera. I am worried this may signal a return to his former shopping days. The difference is that he had an actual, articulable reason for each of these purchases. Which gives me hope. Because before we’d get random packages for things like flameless candles, a laminator, and games.

Mr. J is Getting Mean Again

For each of the last three days, I have asked Mr. J to please take out the recycling. For the past three days, Mr. J has assured me that he would and then hasn’t done so. When I brought it up to him this evening, he said, “I already did.” I raised my eyebrows and gestured to the pile of recycling which is most certainly still in our living room. “I did it when you were gone.” Which, technically, is true. But an abundance of boxes, cans, and bottles have built up since then. “You’re a fun sucker,” he said, accusingly. He isn’t usually like this. I am worried about the roller coaster starting again.

And the Wall Comes Back Up!

I remember how it was before. And so, I toss up the wall I know how to construct. I am detached. I am not searching for the old Mr. J because I know he isn’t here. Will he come back again? I have no fucking idea. But, today, he is gone. Maybe he’s just in a bad mood. Or maybe he actually does have a degenerative brain disease, and he is degenerating. Who the fuck knows.

A Visit With Mr. J’s Therapist

Mr. J meets with his therapist twice a month. (Note: this is not M, his OT, but S, his personal therapist.) S keeps careful notes and begins each session asking for updates on things previously discussed. Eventually, he got around to Mr. J’s assignment with M. Mr. J rolls his eyes and says, “You know, I wrote it, but I didn’t send it to her.” “Not true,” I holler out from my position on the couch in the living room. I get up and wander across the living room to the love seat Mr. J is sitting on. “Here she comes,” Mr. J says dramatically.

“I did write it,” Mr. J says. “Yeah. He wrote it all right. Tenth grade level. Dashed off in 20 minutes. No details. No facts. No citing to the file.” “Yes, I did,” Mr. J says. “Didn’t I show you that?” “No,” I respond. “You didn’t.”

Mr. J returns his focus to S. “I did write it. It just needs a few updates. I want Anne to read it and then I’ll send it to M.” S again stresses the importance of follow through if Mr. J wants consideration of a new diagnosis. Mr. J agrees. “I’ll do it today after work.” It should come as no surprise to anyone reading this that after work, Mr. J did not, in fact, “do it after work.”

A New Perspective

That took place on Wednesday. The following Sunday, as I was walking, I had a phone conversation with my friend P. Among the many things we discussed was my frustration with Mr. J and his complete lack of action on the task at hand. “He hasn’t done anything!” I exclaim. My frustration is clear. My friend P sits in silence for a minute. I know she is thinking, so I sit with the silence along side her. “Maybe,” P says, “He is doing something. Maybe he is thinking in his head that he knows he can’t do it. And it is such a simple task. But he knows he can’t do it, and now he’s thinking about that.” More silence as I process this.

I remember in the early days, when I had more contact with other spouses dealing with this, their expressions of happiness once their spouse was no longer aware of what they weren’t capable of. For the first time, I understand this. I continue walking, pain in my chest, sobs welling up in my throat, tears in my eyes. P is also quite comfortable with silence and she waits. I process. She waits some more. “I hadn’t thought of that,” I say softly. “Sorry,” P says. “Me, too.” I reply. I shake myself the way my Great Danes shake themselves. I shake off the fear, the sadness, and the anxiety. Well, most of it. I keep walking.

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Evil Super Powers

The day we got the email from M, I left for a work trip. I was scheduled to be gone for 12 days. When I travel for work, I generally travel into an unseen and undocumented vortex wherein time gets sucked out of me, and I am busy, busy, busy from morning until night. Before I left, I carefully filled two weeks’ worth of pills for Mr. J to take – both morning and night pills. “I’m leaving these pills right here,” I say, as I first lift up and then put down the two containers on the coffee table. “Okay,” Mr. J nods. I foolishly think this is enough. By way of background, Mr. J and I have opposite evil superpowers. My evil superpower is that when things leave my hands, my brain does not record this information. Thus, I am constantly losing my keys, my purse, my notes, my groceries. Et Cetera, ad nauseum.

Mr. J’s evil superpower is that he can’t see things that are literally right in front of him. “Where’s the kombucha?” he’ll ask. “It’s in the ‘fridge on the bottom shelf,” I call from the living room. “I don’t see it,” he inevitably responds. “On the right,” I say. “On the bottom shelf.” “Still can’t find it,” he reports. I get up and wander to the fridge. And lo and behold, the kombucha will be – you guessed it! On the bottom shelf on the right. “Oh,” he’ll say. “I didn’t see it there.” This is not a ‘post diagnosis’ thing. This has always been a thing. (And yet I still keep telling him where to find things, when we both know he won’t. . . but that is a topic for another day.)

“I Can’t Find It”

Because of our respective superpowers,, it should have come as no surprise to me when the Divine Ms. M (our adult daughter, not to be confused with “M” our OT) called me and reported there was only one box of pills, despite me leaving for nearly two weeks. “There’s another one,” I say. “It’s on the coffee table.” “It’s not,” she replies, “I looked.” “I know there’s another one,” I exhale, exhausted by this game. “You should have shown me where you put it,” the Divine Ms. M. “It wouldn’t have mattered,” I counter. “Because I put them together on the coffee table. If you found one of them on the coffee table, Mr. J must have moved the other one.” “I’ll look around,” the Divine Ms. M said, “but I’m not hopeful.”

I’ll Do It Later

I call Mr. J. “Babe, let’s do your meds. Just take the containers out of the basket, and I’ll tell you how many and whether they are morning or evening.” “Let’s do it later,” Mr. J says. “You sound tired,” I say. “Do you want to take a nap and then do the meds?” “Sure,” he responds. I can tell he isn’t interested. Later, I call again. “Let’s do your pills, babe.” Mr. J sighs. “I’ll do it later.” Silence from both of us. “I am perfectly capable of figuring out what meds should be taken when. I passed that test, remember?” he says, somewhat petulantly, somewhat defensively. It is true that early in our OT journey, Mr. J performed some tasks for M, our OT. One was reading prescription labels and sorting the meds into a pill box. But it involved four meds. Mr. J takes a fistful of meds for various things (not one of which is designed to address his degenerative brain disease). Somehow, I know with absolute certainty that the pill box will remain empty until I get home. Because he doesn’t want to talk about it. I suspect he may not feel up to the challenge. But I don’t ask. Because we’re not talking about it.

Coming Home

“I’m coming home early,” I announce to Mr. J on a Saturday morning phone call. “I’ll be home at 5 tomorrow night. Can you pick me up?” “Of course,” said Mr. J. “Speaking of picking up,” I continue. Mr. J groans. “Here we go.” “Could you just pick up the cigar wrappers and throw away some of the empty cans lying around? And maybe run the dishwasher?” “Has the Divine Ms. M been ratting me out?” he asks. “I know your deepest darkest secrets,” I respond. “And I’ve been away for work before. I know exactly what our living room looks like.” “Okay,” Mr. J replies. “I’ll get to it right after I send that email to M”. This is as close as we’ve come to talking about his report due to M. But I’m letting it be. For now.

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Author’s Note: This post details events that occurred earlier this year. I am taking my time processing these events before publishing. Thank you for staying with me.

Another Visit to OT

(Our previous visit with the OT is here.)

Friday morning, we head back to the OT office. Once settled in M’s office, she says, “I did not expect this,” pointing to a printed version of his email. “Ha!” said Mr. J. M continued. “Honestly, I thought I’d turn on my email this morning, and there wouldn’t be anything from you.” Personally, I am sitting next to Mr. J, practicing box breathing in an attempt to stay calm and measured. I have learned, over the years, that if I give in to my inner wild banshee, people tend to not trust the value of my words. So, I am breathing. “It’s a draft,” Mr. J says. “I would agree,” M responds. “This letter is not ready to be sent out.” M turns to me. “What do you think?” “I think,” I take another slow, deep breath, “That this is sloppy. It lacks data. It doesn’t provide citations.” “Oh, you and your citations,” says Mr. J. “But that’s important,” M interjects. “Right? You are asking for an exception to be made to allow you to go to the World Renowned Medical Center (WRMC) to be seen again. You probably only have one shot at this, so you want as much medical detail as you can.” Mr. J concedes the point.

Concerns

“Here’s my other concern,” I continue. “Mr. J and I have very different approaches to work. Mr. J flies by the seat of his pants, and he’s fine with that. I’ve got 25 years of stories of Mr. J knowing that a deadline is coming up and not even starting the project until the day before.” “Or the day of,” Mr. J interjects. “Yes,” I nod. “Or the day of. I can’t tell if this is just a repetition of those habits, or what.” “That’s how I work,” Mr. J says. “Yes,” M agrees. “It is how you’ve always worked. But you can’t do that anymore. You need to rely on the tools in your toolbox to help your brain work better.”

Let’s Make a List

“What do you need to do to get this document up to snuff?” M asks Mr. J. “First, I need to call the Board about my license. Maybe I’m making this too big of a deal. Maybe they’ll just give it back to me. I mean, I did give it up voluntarily.” M looks at him kindly. Softly, she says, “Nobody with a degenerative brain disease is going to get back their professional license. That’s why this homework is so important. You’re going to have to prove to them that you can do it.” “Okay,” Mr. J continues. “I’ll call the Board. Then I’ll see if I can get into MyChart.” “I can get you into MyChart,” I volunteer. “No, no,” says M. “This is not your project. This is Mr. J’s project.” Fair point. “Now, I don’t think you need to call the Board. The point of this letter isn’t that you want your license back. The point of this letter is that you want to go back to the WRMC to get some clarity.” “Okay.” Mr. J crosses “call the board” off his list. “So, I’ll log in to MyChart if I can.” “And what if you can’t?” M asks. Mr. J shrugs. “I’ll figure it out.” “That’s not a strategy,” M submits. “I’ll . . . look around the website. And if that doesn’t work, I’ll call someone.” “Okay, good,” M says. “What’s next?”

After a long pause, I say, “Maybe you could set a timer and work on it for 15 minutes a day?” “You love your 15 minutes,” Mr. J retorts. “All the time,” he says to M, “she says, ‘let’s just do this for 15 minutes.’” “But that’s a strategy,” M points out. “15 minutes is nothing. It’s taking small, bite sized tasks that are manageable for your brain.” Together, Mr. J and M work on another four or five strategies. “I’ll have it to you on Tuesday. Close of business on Tuesday,” Mr. J says with confidence.

My Chart

Mr. J did spend one of the next four days logging into his “MyChart” account and locating the relevant reports. Then he announced he was taking a break and did not sit back down at his computer again. It took a lot of self control for me to keep my mouth shut. Tuesday came and went. Wednesday rolled around with no comment (or work) from Mr. J. On Thursday, I ask, “What would you do in the old days if you were going to miss a deadline.” Mr. J couldn’t come up with anything. “Maybe,” I offer, “ask for a continuance?” “I don’t want to do that,” Mr. J says. On Thursday afternoon, Mr. J and I got emails from M. Mr. J has chosen not to respond. I have chosen not to carry on like my inner banshee would like me to do. Because, at the end of the day, it’s Mr. J’s choice. Not mine.

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Author’s Note: This post details events that occurred earlier this year. I am taking my time processing these events before publishing. Thank you for staying with me.

The Assignment

With Christmas behind us, our appointment with the OT is rapidly looming. Mr. J hasn’t spent a minute on his presentation, discussed at length here. He shifts gears downward and abandons his grand plan. “I think I’ll just repeat a presentation I made back when I was working.” “Okay,” I say, trying to be supportive. Unlike me, Mr. J cannot be shamed. (This has always been true. It is not a side effect of brain degeneration. At least not for him.) So I go about my day, worrying about whether Mr. J does or doesn’t have the executive function he (and, to a lesser extent, I) thought he had.

The Appointment

Mr. J and I arrive at the OT’s office for our appointment on a Friday in early January. M comes and takes us back to her office. First, we catch her up on the disappointing meeting with Dr. Good Enough, and how profoundly it conflicted with Dr. N’s assessment. M pulls up both entries on her computer, and confirms they are definitely in conflict. “I am so sorry,” she says. “That must be really frustrating.” “I asked Dr. Good Enough how this MRI compared to the others, because, you know, ‘data,’ but he didn’t even pull an old one up.” “That shouldn’t have happened,” M said. “I just wish we could go back to the World Renowned Medical Center (WRMC),” Mr. J says. We all agree with that.

When I tell M how much a double board certified Doctor at the WRMC costs for an hour of his time, she explains to me that it is possible to negotiate these things downward in advance. Honestly, I was so used to insurance covering it that when our last claim (and quite possibly the claim before that) was rejected, I just set up a payment plan and soldiered on. We are also on a new insurance plan. I explained to M that pursuing another visit was on my list. Then we got down to business.

Are You Ready?

M turns to Mr. J. “Are you ready?” she asks. “I didn’t do it,” Mr. J says. M and I sit in silence. “I just don’t see the point,” he adds. “The point,” M says patiently, “is to see about your executive function. Because you won’t get your license back if you can’t establish you have executive functioning.” “Fine,” Mr. J says, as if he is making a grand concession. “I just feel silly making a professional presentation to you. It’s not natural.” M understands this. “Okay. I’ve got a better idea. What don’t you write a letter to your insurance company stating that you have two conflicting opinions, and you’d like to go to the WRMC to get another opinion.

Tools in the Toolbox

M looks at her calendar. “As it happens,” she says, “I have an appointment available next Friday.” “Works for us,” I say. “Now,” M takes out a paper and pen. “Let’s talk about strategies. What steps can you take to ensure it will get done this time?” Mr. J thinks for a minute. “Write an outline?” “Good,” M says. “Work on it every day?” Mr. J offers. “Yes, that’s a good one.” M writes it down. “I’ll send it to you the night before our meeting,” Mr. J says.

The Back Pedaling Begins

On the drive home, Mr. J announces, “I’m too tired to work on this today. I’ll start tomorrow.” On Saturday, I ask, “How can I support you with this?” “Just be you,” Mr. J says. “That’s all.” On Sunday, I say nothing. On Monday, I offer, “Would you like me to brainstorm this with you?” “No,” Mr. J says. “I’ve got it.” On Tuesday, I tell Mr. J, “If you want, I can go into your medical file and pull up the data that you’re going to need.” “I’m good,” Mr. J says. On Wednesday, we have an appointment with Mr. J’s mental health therapist, S. Mr. J logs on to the appointment on his phone. I am in the living room with him, but not sitting next to him. First, as per S’s standard practice, Mr. J and he catch up. “How’s the sleep schedule?” and “Are you walking the dogs?” and “How did it go with the Occupational Therapist?” This is where I chime in from across the room. “He didn’t do it!” S is surprised. “You didn’t do it?” Mr. J fumbles around for a bit and then adds, “But she’s giving me a second chance.” At this point, I can’t help myself. I jump in. “It’s due Thursday night, S! He hasn’t even started yet!” “I have, too!” Mr. J declares. I raise my eyebrows. “I have an outline,” he says. “In your head?” I am dubious. “No,” Mr. J says, “it’s right here.” He goes to his coat, and lo and behold, he pulls out a piece of paper with a rough outline of about eight to ten sentences.

A New Plan

I, for one, am delighted. S is not quite as pleased. “You’ve got to put that into a document today. Because you’re going to want to sleep on it, and then in the morning, you’ll probably want to do some revisions.” “I’ll do it after work,” Mr. J says. “That’s what you have been saying all week,” I respond. S jumps in. “I don’t think you are giving this enough priority.” S is quite serious. “This is to check your executive function. You can’t just miss deadlines like this. It shows you might not be ready to get your license back. It goes both ways,” S continued. “If you do well, that goes in your file. If you don’t do well, that also goes in your file.” “Okay, okay,” Mr. J says. “I’ll do it tonight.” Mr. J heads off to work, and, sadly, predictably, announces he is “too tired” to work on his project when he gets home. Silently, I vow not to say another word.

Last Minute Deadlines

On Thursday evening, after work, Mr. J sits down at his computer. I can tell he is working on his project. I put the television on mute, even though he didn’t ask me to. After about 20 minutes, he stands up and asks, “Can you read this?” “Sure,” I say. “What are the rules. Do you want my suggestions? Should I edit it?” “No. Just read it and tell me what you think.” I sit down and start to read. “You’ve got the year of your diagnosis wrong. Do you want me to fix it?” “Yes, please. But nothing else.” I am something of a grammar freak, and I will confess I did take out a superfluous comma. But other than that, I left the work as is. I even left in a typo, though it practically killed me. What’s the point of the red underline if not to call attention to your mistakes? But it was his mistake, not mine. Mr. J emailed the letter to M and me.

Recently, I made a spectacular meal. It took over an hour to make the bacon, saute onions and garlic, then the Lion Head’s mushrooms in small batches, (you’re not supposed to crowd them), make the pasta, then the sauce. It was delicious. It’s a recreation of a meal Mr. J and I used to enjoy at one of our favorite restaurants, before it closed. This small miracle of a dinner is brought to you by a very slow week at work, Mr. J functioning well all week, and my craving for said dish. Rarely do all three of those come into focus at the same time.

In Another Life

I used to make dinners like this four or five times a week. Because I love to cook. And I love to eat. Mr. J was my sous chef most nights, although he did have a few specialties of his own. I never said “no” to his offer to make fettuccine alfredo. But the days of Mr. J in the kitchen appear to be over. I decide, every night, what we are going to have for dinner. Then I make it.

Go To Dinners That Require Very Little Effort

So what do we eat when things are overwhelming? I have some go tos, and some tricks up my sleeve. Below are some of my favorites.

• Scrambled eggs and toast

• If I’m feeling ambitious, I saute bread cubes in butter or olive oil, add whatever onions, peppers, tomatoes, (or whatever I have on hand) and a can of rinsed drained black beans, then douse the whole concoction with scrambled eggs. We call that “Mess.”

• French toast with fruit

• Frozen fried rice I buy in individual packages at Costco

• Chick peas roasted in oil with salt and pepper, 5 spice, seasoned salt, zatar, or everything bagel. Add a couple of handfuls of greens, such as arugula or spinach for an even healthier dish

• Black beans with a bag of microwave rice. Add sauteed onions. Sex it up with taco seasoning, feta cheese, or goat cheese

• Refried beans on nacho chips. Add shredded mozzerella or cheddar, a can of diced tomatoes (drained), purple onions, or jarred jalapenos

• Gnocci with jarred pesto

• Pasta with jarred sauce (Note: normally, I hate processed foods, but sometimes getting Mr. J fed is a more important goal.)

• Roasted veggies – potato, onions, mushrooms, carrots, broccoli, brussel sprouts, and/or cauliflower. Finish with balsamic vinegar and olive oil.

• Chicken tenders airfried (or chicken fingers baked from frozen) with a jar of Thai peanut sauce (Note: I actually make a pretty good Thai peanut sauce, but it’s not worth the effort on a night when I am looking for an easy go to.)

• Aldi’s salmon (sprinkle with salt and pepper and bake at 425 for 15 minutes) with veggies such as green beans, added to the same cookie sheet for the last 8 minutes or so

• Boneless chicken breast dipped in plain yogurt and cornflake crumbs/bread crumbs, baked at 350 degrees for 20 minutes

• Pork loin in crock pot/oven/pressure cooker

• Grilled cheese/grilled peanut butter/grilled ham and cheese (If you’ve never had a grilled peanut butter sandwich, you are missing out!)

Making the Best Choice

Sometimes, the best choice is the one you can accomplish. That is a form of self care. It took me more than a year after Mr. J was diagnosed before I learned to forgive myself for not cooking an elaborate dinner most nights during the week. As time has gone on, I am more comfortable with a simpler approach.

What are your “go to” dinners?

Buy me a coffee!

Author’s Note: I have been deliberately delaying posting Mr. J’s journey so I have the opportunity to review what I have written and consider whether I want to send the latest out into the world. This delay is best for my mental health. Thank you for understanding, and staying with me.

The Travel Plan

After our visit with Dr. N, but before our visit with Dr. Good Enough, my friend A asked if Mr. J and I would like to travel with A and D to Thailand. It was at least ten years ago that I first proposed such a trip to A and D. The plan, probably in 2015, was to travel to Thailand to stay at an Elephant Preserve (EP), and take care of our own elephants, while learning about elephant preservation. Unfortunately, 2015 was a year of unexpected and unhappy events that prohibited Mr. J and I from travel. A and D, however, already had non-refundable tickets and decided to go alone. Over the years, they have returned repeatedly, each time bringing another few friends or family members to introduce them to the joys of the EP. Because of our mostly successful trip to Puerto Rico, and Dr. N’s “diagnosis” of no degenerative brain disease, such a trip seems like a great idea.

The No Travel Plan

Of course, in June of last year, A and D offered to bring Mr. J to SE Asia in August, as I would already be there for work. Then we could go to the EP. In June, I didn’t think Mr. J was up for such long flights. I’m not certain, in retrospect, if by October I had forgotten that, or if I was so buoyed by Dr. N’s pronouncement that I chose to disregard this information. In either event, Mr. J and I agreed it was time for a trip to the EP. In my head, I told myself Mr. J was functioning so much better, even if he did have a degenerative brain disease, this was our window. And, of course, if he didn’t have a degenerative brain disease, this could be the first of many trips to the EP.

Every other Wednesday, Mr. J sets aside a certain amount of his paycheck to the EP fund. He is proud and delighted to be contributing to the trip.

The Holidays

Thanksgiving and Christmas are the usual whirlwind.“I’m cured!” Mr. J exclaims to everyone at family functions. His family is happy to agree. I don’t bother to correct him or them. I don’t bother to point out the alarming brain scan. In part because I am tired of trying to convince people who have eyes of their own, when it is obvious Mr. J is as close to normal as we’ve seen in the last three years. I also don’t bother, because with the absence of a comparison to previous MRI, there is insufficient data to determine if his brain is deteriorating at any rate at all. I once read about a person who only had one side of his brain, and he lived just fine. So who knows whether the gaping holes spaces in his brain matter actually. . . matter.

Buy me a coffee!

Author’s Note: This is part five of our ongoing saga with Dr. Good Enough. You can read from the beginning starting here, then here, then here, and here.

I’ve taken my time posting these, as I needed time to process. . . thank you for staying with me!

The Aftermath

At the elevator bank, I say to Mr. J, “I found that wholly unsatisfying.” “I’m even more confused than I was when we saw Dr. N,” Mr. J says. We ride home in fits and starts. “I’m going to need to jaw on this,” I say. “For quite a while.” Mr. J nods. “What just happened? You tell him I’m fine, and he just tells us I’m not?” “Yep,” I say. “That’s a fair summary.” More silence. Then me. “I think I’m just going to follow Dr. R’s advice.” (Dr. R was our double boarded neuro at a World Renowned Medical Center, (WRMC) back before our insurance demanded we see Dr. Good Enough – who is not at a WRMC. Nor, to my understanding, is he double boarded. But I digress.) “What was Dr. R’s advice again?” Mr. J asks. “Enjoy every day,” I remind him.

Practicing Medicine Without a License

During the visit, I had asked Dr. Good Enough whether, since there were no FDA approved drugs for Mr. J’s condition, there were any off label drugs that might do something. Dr. Good Enough dismissed that idea. “So, nothing,” I try to confirm. He rolls his eyes. “Some people say certain herbs, or spices.” He does not volunteer which ones, and at that point, I had had it with him anyway. But back home, I start to speculate. “You know,” I say to Mr. J, “Back when you were in the hospital, one of the things they were looking at was a vitamin B deficiency. Apparently, severe vitamin B deficiency can make you act all crazy. No one has bothered to ask, but since you got home from the hospital in 2022, you’ve been on a daily diet of Vitamin B1, B6, B12, and folic acid. Maybe that, combined with the sleep deprivation from your severe sleep apnea, pushed you over the edge. Maybe you are just catching up now.” Mr. J rubs his eyes. “I. . . I. . . I just don’t know what to think.”

Missing our WRMC

We both agree that we are missing our WRMC, and Dr. R. I vow to call said WRMC to see which insurance they will take, as it is currently open enrollment season. There’s not much else we can do.

I Am Angry

It’s taken me a couple of hours, but I am angry. I am angry that we were ripped from the care of a doctor that we loved. I am angry that we are now required to see a doctor who has zero intellectual curiosity. Has no interest in comparing a prior MRI to the current one. Or getting a new MRI in a year to compare to this one. Just “see you in a year.” I am dissatisfied in the extreme.

Author’s Note: The following post, along with several subsequent posts, relates to events that have taken place in the last six months. I needed some time to process these events.

This particular entry was written on 19 November 2025.

Part Two of Three (or more. . . ) Part One is here.

The Neuro Psych

“I think Mr. J is disappointed because of the neuro psych,” I say. “Is there one?” asks Dr. Good Enough. (Note: it was Dr. Good Enough who ordered the neuro psych.) He scrolls through the computer. “Oh,” he says. “Here it is.” He glances at it.

“Look at paragraph two,” Mr. J says. I add, “It says Mr. J doesn’t have the brain degenerative disease he has been diagnosed with.” “It doesn’t say that,” argues Dr. Good Enough. “It says ‘if he had said degenerative disease, then we would expect decline.’” “Right,” I agree, dryly. “It says he doesn’t have it.” “That’s not what it says,” he argues. “Keep reading,” I say. He reads the next sentence, and the next. “I see,” he nods, but he is obviously not pleased. “Well, he’s wrong,” Dr. Good Enough says with complete confidence, referencing the Dr. who did the neuro psych. “It’s a she,” I say, not attempting to cover my annoyance. Because she represented to us that she had talked to Dr. Good Enough about this. And she’s in the same department as he is.

The MRI

Dr. Good Enough clearly wants to change the subject. “Let me show you the brain scan.” I am, as you know if you’ve been here a while, a science girl. I like data. He proceeds to show us the scan. I cannot reproduce the words he used, but the basic gist is that your brain on an MRI shows mostly gray matter, but there are little inroads from the inside of the skull into the brain, which reflects as darkness on an MRI.

Dr. Good Enough put Mr. J’s scans up on a computer screen across the room. He shows us Mr. J’s frontal lobe, left and right (more degeneration on the right), and moves to the back of the brain to show us what a non-degenerative portion of the brain looks like. “Those look like tributaries,” I say. “Yes,” Dr. Good Enough agrees. “And these here,” he says, flipping back to the front of the brain, “Look like rivers,” I conclude. “Exactly,” says Dr. Good Enough. “

How do these scans compare to the last MRI?” I ask. “I don’t think they did this type of contrast the last time,” Dr. Good Enough says. I wait. I am expecting him to at least check to see if “they” did the same type of contrast last time. No such luck. He didn’t even look.

Next Steps

“So, what now?” I ask. “Come back in a year,” Dr. Good Enough says as he stands up. “Do you want us to get another MRI before we come?” “No,” he says. “That won’t be necessary.” I sit there. Perplexed. Then I ask, “What are we coming back for?” “Just to check in,” Dr. Good Enough says. “And to get a report on any behavioral changes.” He walks towards the door. We are clearly being dismissed.

Buy me a coffee!

Author’s Note: The following post, along with several subsequent posts, relate to events that have taken place in the last six months.

This particular entry was written on 19 November 2025.

Well, Color Me Gobsmacked!

We just got back from our meeting with Dr. Good Enough – a nickname I am starting to think is too kind. Dr. Good Enough came into the exam room and proceeded to pull up Mr. J’s chart on his computer. He read a bit, asked if Mr. J was “still drinking” (something he hasn’t done since one spectacular incident just prior to his diagnosis 2022, but otherwise hasn’t done for years); whether we had gotten married yet (something we did in 2017, which was 8 years before we first met Dr. Good Enough); and did not recall ordering a neuro psych report.

He proceeded to ask one (ONE!) question about how things were going. “He’s getting better.” (Honestly, why doesn’t anyone LISTEN to me??) Dr. Good Enough launched into a diatribe. Dr. Good Enough explained (again) that Mr. J has a progressive disease. That he may currently be asymptomatic, but Mr. J most certainly does have a degenerative brain disease. That while there is no FDA-approved treatment, maintaining order, eating a good diet, and having a part-time job all contribute to his well-being. He is, of course, presuming that Mr. J has order to his day and that we are eating a heart-healthy diet. I know this, because Dr. Good Enough hasn’t asked about whether we are actually doing either of these things.

“I Have a Job, But. . . “

“I have a job,” Mr. J volunteers. Dr. Good Enough hardly glances up. “I have a job,” Mr. J continues, “But I’d like to get my professional license back.” Mr. J’s professional license was suspended due to his medical issues back in late 2022, post-hospitalization, based on his diagnosis. He knows full well that the Board will not re-issue his license unless the current diagnosis is removed or modified to something else. “We aren’t changing the diagnosis,” Dr. Good Enough says dismissively. “It’s the best explanation we have.” Then he proceeded to go over the behaviors that landed Mr. J in the hospital in the first place. “But none of that is happening anymore,” I say. “There used to be incidents daily, and honestly, I can’t think of the last time he was confused or disoriented.”

The Lecture

“This isn’t a cognitive disease,” Dr. Good Enough says. “It’s a behavioral one. It’s the behavior that deteriorates.” Mr. J and I sit there as Dr. Good Enough tries to convince us that the fact Mr. J is seemingly firing on all cylinders has no bearing on the matter. He also apparently thinks we live in a vacuum. I have researched as well as talked to many people whose spouses have what Mr. J is diagnosed with. I have read about and have heard the stories of people not recognizing loved ones, thinking they still had to go to work at their non-existent jobs, eating rocks, becoming violent or emotionally distant, etc. Dr. Good Enough draws a chart, showing how Mr. J’s sleep improvement (thanks, CPAP!) likely has slowed the inevitable trajectory towards death, but that the trajectory still exists – it’s just been altered so Mr. J is now in the range of “normal.” Mr. J and I are dubious, at best.

A Visit with the OT

Mr. J and I had an appointment with M, our Occupational Therapist. We have barely settled into the appointment when Mr. J announces, “I don’t have a degenerative brain disease!” He produces Dr. N’s report. “Second paragraph,” he says. M reads the full report. “Wow,” she exclaims. “That’s really good.” “I know,” Mr. J says. “This is as close to the old Mr. J as I’ve seen him,” I add. M nods. “I want to get my professional license back,” he says. “I want to go back to work full-time doing what I went to school for.” M nods. “Okay,” she puts up a hand, “Let’s take it slow.” Like me, M is a lover of data.

Mr. J Gets Some Homework

“I have a homework assignment for you,” she says. “I want you to prepare a 30 minute presentation for me, on anything you want related to your profession.” “Anything?” Mr. J asks. “Anything,” M replies. Mr. J immediately starts planning his project, and boy are those plans grand.

Call Me a Bucket of Cold Water

“Do you have any concerns?” M asks me. I take a deep breath. “I am delighted with Dr. N’s report,” I begin. “However, what Mr. J hasn’t told you is that he also got an MRI. The MRI says Mr. J most certainly does have a degenerative brain disease. So, it’s difficult to properly assess the situation.”

M nods. “This is why we are doing homework. It will give us an idea of what he’s capable of.”

The Ride Home

We leave the office, with Mr. J continuing his grandiose plans about his presentation. “Can you help me with a PowerPoint?” he asks. For the record, I am a whiz at PowerPoint. “Of course,” I say. We can’t get another appointment with M for two months. We have a meeting with Dr. Good Enough in about two weeks. I think about it with a combination of hope and dread.

Author’s Note: The following post, along with several subsequent posts, relate to events that have taken place in the last six months.

This particular entry was written on 18 October 2025.

Depression - I Know It When I Feel It

Last week I wore the same clothes all week. I showered exactly once. This week, same. Well, it was a DIFFERENT outfit that I wore all week, but same outfit every day all the same. I have been vaguely aware that I am likely a bit depressed. I haven’t cooked a decent meal in more than two weeks. The house has been a disastrophe. I sit in the living room and while away the hours, doing nothing.

The Magic of 15 Minutes

In early October, I told myself I needed to start going for a walk. So in eight of the last eleven days, I walked. For thirty minutes or more. And lo, this morning I said to Mr. J, “I need an hour of your time.” And so every hour, on the hour, from noon to 3, we spent the first fifteen minutes of the hour cleaning designated parts of the house. It’s still not “company ready,” but boy oh, boy, it’s a thousand times better.

Clearing Clutter

Next we packed an office chair and a punching bag, (something Mr. J acquired during his “spend days,” a symptom I hadn’t known to look for). “This,” I told the woman at the charity shop, “is really good for hanging clothes on!” She thought it might be good for the staff to punch out frustrations. Either way, that monstrosity, a silent testament to the early days of Mr. J’s brain degeneration, is now out of my house!

Things Are Getting Better

This evening, I pulled chicken kiev out of the freezer, baked some potatoes, roasted some green beans, and we had a delicious, nutritious meal for the first time in a long time.

Epilogue

I’ve spent an enormous amount of time over the past three years worrying about Mr. J’s health. I have not spent nearly enough time worrying about my health. I am working on changing that.

It is now the beginning of February, and I have continued my commitment to 30 minutes of movement each day. It does make a difference.

Buy me a coffee!

I have been sitting on this, processing this and more, as events have unfolded. Even now, it is not done unfolding.

Mr. J’s Test Results

The last time we saw Dr. Good Enough, he ordered some tests and said we should come back to meet with him. His next available appointment was in November, so that’s when we are going back. Dr. R, from the World Renowned Medical Center (WRMC,) and Dr. Dickhead had both previously ordered PET scans, so we are familiar with what they look like and how they work. Dr. Good Enough, however, prefers an MRI of Mr. J’s brain. He made several comments about “another test,” but noted (repeatedly) that it was “too expensive.” I suppose if you are diagnosed with something that has no treatment and no cure, what does it really matter if you get the Cadillac tests, or something more in line with a Yugo? Right? I will be pushing back on the PET in November, but until then, we will be good little soldiers and do what we’re told.

The Neuro/Psych

We went and saw someone we had seen before the WRMC referral for neuro/psych testing. Mr. J spent four hours doing various tests, repeating facts from stories he was read, putting shapes in order, drawing cubes, identifying drawings of a giraffe, and repeating words he was supposed to memorize. At the WRMC, testing is done in the morning, and you get the results when you meet with your Dr. in the afternoon. No such courtesies exist here. After Mr. J completed his testing, we set up an appointment to review the results with the neuro/psych person, Dr. N. Note: this is NOT Dr. Good Enough. We don’t see him until November, where we will discuss both his neuro/psych testing, and the results of his MRI.

Dr. N’s Diagnosis

Dr. N was positively beaming when she greeted us two weeks later with the results. We walked back to her office, and she announced, “I have good news! I don’t think Mr. J has a degenerative brain disease!” Mr. J and I sat in stunned silence. “If he did, we would expect more degeneration than we are seeing.” “Huh,” I said. “Huh,” said Mr. J. More silence. Dr. N is still beaming. “So,” I begin, slowly, “then what is it?” Dr. N shrugs. “There’s so much we don’t know about the brain. Who knows?” I sit with this. “Huh,” I say again. “I’m going to need a minute to get used to this.” “Huh,” says Mr. J.

Dr. N then shows us her “report.” I put “report” in quotations because it is a four paragraph document with sweeping statements and broad strokes about the testing, and zero, absolutely zero data. In her two previous reports, she had a chart showing where Mr. J was operating in the normal range, where he had some difficulty, and where he struggled mightily. Not in this report. Oh, no. Just sweeping summaries. She says she doesn’t need to see us again, since he does not have a degenerative disease after all, and ushers us out.

“My Chart” Tells a Different Story

I take a peek at Mr. J’s “My Chart.” The MRI shows “dementia.” I have a thousand questions. How to reconcile these two things? Does Mr. J have another form of dementia? How does this current MRI compare to the MRI in late 2022, when Mr. J was in the emergency room? And, most importantly, “What the hell is going on?”

Mr. J is Delighted

Mr. J, on the other hand, has no such questions. He has declared himself disease free and is making plans for his future. “I’m fine,” he tells his friends. He forwards to them Dr. N’s report. “Paragraph two,” he says. “Read paragraph two.” It is in paragraph two that Dr. N asserts Mr. J is not degenerating as one would expect for his particular diagnosis, and therefore it is no longer in play. I have tried once or twice to discuss with Mr. J the results of the MRI, but he isn’t listening. In fact, he informed me that I am a “fun wrecker.” We spoke with Mr. J’s therapist about this. Mr. J’s therapist has been with us since 2017 or so. He said, “Well, Mr. J, if I were you, I would be as elated as you are. But if I were Anne, I would be as cautious and circumspect as she is.”

Apparently, I am Growing

There was a time when it was important to me to know exactly what was going on, and for others to be on board. After three years of roller coaster riding, I am so over that. I don’t know what is going on with Mr. J’s brain. I do recall the last time we saw Dr. Good Enough, despite my insistence that Mr. J was getting better, Dr. Good Enough was equally insistent that the previous diagnosis still makes the most sense. We will see in November.

Enjoying Each Day

In the meantime, I am working on getting and keeping things in order. I am (once again) working on living in the moment and enjoying each day.

A Real Vacation

Mr. J and I recently took a “real vacation.’ I put that in quotes, because Mr. J and I have been on many vacations in the past. However, during all of those vacations, one or both of us brought our work computers and work cell phones and, well, worked. Not this time. We completely unplugged.

A Safe Space

We celebrated our friend A’s 60^th birthday in a VRBO by the beach. It was delicious. Of course it was. The people at the house all knew and loved Mr. J and I, just as we are. It was laid back and easy. The ocean was like bath water. We spent hours bobbing in the ocean waves, and sitting on the beach under umbrellas, eating sandwiches and drinking soda water. Each evening, we also ate our weight in Mufongo.

Mr. J is. . . Mr. J

There were two notable incidents of confusion. Once, when we were all getting ready to head to the beach, I looked up and asked, “Where’s Mr. J?” A search of the house revealed he was gone. A went towards the beach. D headed in the other direction just in case. Mr. J was chatting it up with the guy who rents out beach chairs and umbrellas. He had no money with which to purchase said beach accoutrements, so he just settled in the shade, assuming we’d be along directly. He didn’t quite get that we would be worried.

Another time, he couldn’t figure out how to exit the house. He assumed that behind the door leading to the garage was another bedroom, not the garage we’d been leaving and entering from for the last four days. But for the most part, it was drama free.

The Blessing of Good Friends

In the beginning, when Mr. J was first diagnosed, we had a stream of friends and family in our lives. Over the years, this has dropped off. Part of this, I expect, is because Mr. J has gotten so much better over the years. There was a time he couldn’t remember where the bathroom was in the house we have owned for over 25 years. Now he is working part-time as a delivery driver. But our friends A and D have been a constant source of love and support. We are so grateful for them. Traveling with many people for a vacation would be a challenge. But A and D made it nothing but easy.

Continuing with the tradition inspired by , I am returning to my 100 word love stories with Mr. J.

We didn’t know what we had – but we sure knew it was bigger than both of us. Filled with nervous energy, crackling with desire, sparks between us, hesitation, not trusting it could possibly be real. “Let’s go,” he said. I went without question. He drove us over the river and up the hill. Parked the car. A moment frozen in time. Stevie Nicks sang, “Well, I’ve been afraid of changes. . . “ as we stepped out of the car, onto the lush grass. Together, we took in the breathtaking view. We inhaled the fallen leaves, just beginning to decay.

When I travel for work, Mr. J doesn’t do as well. He doesn’t take his meds regularly, he doesn’t go to bed at a reasonable hour, he smokes too many cigars. He also has more difficulty tracking. “Where are you again?” “What day do you come home?” These are questions he asks over and over again. He will ask them of me again tonight, when I arrive at my first location, and again in the morning, when I will finally, finally be home.

Mr. J Gets a Job

Mr. J has applied for a job as a delivery driver. It is only from 11 – 1, Monday through Friday. This is exactly the kind of job his OT, his therapist, and his doctor had in mind. He was offered the job pretty much on the spot. Then he had to fill out paperwork.

Mr. J managed to put this task off for over two weeks. He would start on the process, then get distracted. He dreaded using the scanner to scan his driver’s license. He put off providing proof of insurance. But bit by bit, like a woodpecker pecking away on the telephone line, he has managed to tick off all the boxes. While I was traveling for work, he went to orientation. I was nervous about this, as Mr. J overslept the day before, and was 30 minutes late for a lunch meeting with his parents. The orientation, however, started at 3:30. He arrived on time.

Now the question is, when will he start working? We have tickets to an out-of-town convention next week, and he is “hoping” they won’t contact him until after we get back. “Hope is not a strategy,” I say. “Why don’t you just call them and tell them you will be out of town?” I suggest. But he doesn’t want that kind of suggestion. Too scary, apparently.

I’m Working On It

I continue to work on a “now” mindset. What am I doing right now? How can I enjoy today? Sometimes, this comes to me naturally. Other times, however, I either forget about it or I am uncomfortable with it.

So I’m on a Plane

Having successfully navigated through an airport without breaking into the ugly cry OR the pretty cry, I am sitting on an airplane, reviewing Facebook memories (the best thing about Facebook hands down). I come across the DNC’s version of “Fight Song”

You’re welcome. Of course, I had to watch it again. And I started thinking about my idea for a curated death time for Mr. J. It occurred to me both that I should consider curating a music rotation and that I should probably start that now. “Fight Song” seems like a good starting spot. Of course, I burst into tears about halfway through, thinking about fighting through the inevitable grief and endless paperwork and making decisions. It was an ugly cry, but it was brief (much to my seatmate’s relief).

There’s Been an Incident

So, I’ve spent the last few months not writing much, sweltering through a Midwest summer. Mr. J has continued to be adorable and mostly his old self. He got confused about how to get the cart at Aldi’s where you have to put in a quarter to get the cart away from all the other carts. But mostly things have been fine. Until “the incident.” Mr. J and I were invited to a friend’s cabin for the weekend. First, we attended a birthday party for our niece, then we popped by the house to pack and go “up north.”

Will I Ever Learn? (Perhaps Not)

“There are three shirts hanging in the closet that are clean,” I told Mr. J. We each grabbed a backpack and started packing. Honestly, I was only paying attention to my own packing, trying to find my swim suit and deciding how many sweatshirts were enough. At some point, Mr. J showed me his water shoes, which he has had since before we met, in 1998. “Oh, you found them!” I say. He is quite pleased with himself. He also found his swimming trunks that he bought in Hawaii last year. And his shaving kit. So I wasn’t paying attention.

Up North

Heading up north, we listened to several episodes of Crime Junkies, because, well, we love criminal law. We got to the lake, had dinner with our friends, and got ready for bed. And just like that, the bottom fell out. Again. “I can’t find anything to sleep in,” Mr. J announced. “Let me see,” I said, reaching for his backpack. And lo, and behold, inside the backpack are Mr. J’s water shoes, swim trunks, and his shaving kit. That’s it. That is the extent of what he packed. For a weekend. I am gobsmacked. You’d think I would have learned this lesson already. I think I should have learned this lesson already. But every damn time, it hurts.

Mr. J’s New Wardrobe

My friend A and I went into town the next morning. We made it to the hardware store just a minute before they closed at noon. The cashier was lovely, allowing us to take that minute to locate a 2XL shirt with the name of the town emblazed across the front. At the local watering hole, we were able to find a pair of long pants with the name of the lake running down the side, and a pair of lounging shorts, also with some location-related emblem on them. A veritable walking billboard for our location. I also found a vodka soda at the aforementioned watering hole. . .

Important Discussions

Mr. J and A’s husband D stayed back at the cabin. It was really nice to have some girl time with A. “I’m telling you this now,” I said, “so you can remind me. Every day I go on Facebook memories and save any pictures of Mr. J into a special folder, so I won’t have to scramble after he dies. When someone asks the inevitable, “How can I help,” this will be an easy task to assign. Someone can go to Walgreens and print them off.” “Oh, I’m sure one of the kids can make a slide show of them,” A replied. How very 21^st Century of her.

“Speaking of when Mr. J dies, I know you want charcuterie, but what happens if I am away?” Our friends A and D travel extensively to all kinds of exciting locations all over the world. “Should I send one from afar? Or do you want a back up person here?” “Good question,” I replied. “I hadn’t thought of that.” So, I thought about it. “Probably should have a back up,” I say. “And speaking of you traveling, if Mr. J dies while you guys are galivanting around the world, I want you to stay put! There will be plenty of time for me to need you when you get back.” “Are you sure?” A asked. “Absolutely! I mean it!” And I did.

AUTHOR’S NOTE: I wrote this piece back in May, but I’ve been dealing with . . . things so it is just being published now.

A New Mr. J?

Mr. J is not acting himself. Not acting himself at all. Well, not the most recent self. In fact, he is acting a lot like the old Mr. J. Yesterday, I got some upsetting news about a work task I have to do which involves traveling across the world on an airline I have no status on (first world problem, I know). He asked me, several times, “Are you okay?” and “Is something wrong?” and “You just don’t seem like yourself.” There has been an absence of this sort of thoughtfulness over the last two plus years. Mr. J is also napping less, but it is functioning better. Today, as we drove to Costco he seemed “completely normal.” It's so weird. As I was making dinner, he came into the kitchen and pointed to a bag of shredded parmesan cheese. “I didn’t know we had this,” he said. “Yeah,” I replied. “It was in the freezer.” “If I’d known,” he continued, “I would have made my alfredo sauce when you didn’t feel like cooking.” These incidents show he is paying attention on a level he has not been on in several years. He came up behind me yesterday and hugged me at the sink. So. Weird.

The New Guy

Mr. J and I went to another appointment with “the new guy.” Not Dr. Dickhead. Not the world renowned medical center’s double boarded specialist. The guy our insurance will cover. I’m still not sure about him. He ran through a series of questions for me, like Mr. J wasn’t even there. (Later we laughed about it as we almost simultaneously joked about how now he knew what it was like to be a woman.) What did I observe? What was my perception? Is he violating standard norms and boundaries? Is he putting things in his mouth that aren’t food (read: rocks, glass, and the like). I was relieved to report “no” to all his questions. He reviewed blood tests that have eliminated Alzheimer's. Differential diagnosis remains degenerative brain disease. Mr. J is apparently taking the slow boat to dementia. He’s not “progressing as expected. “ But the diagnosis remains the same.

“He’s getting better,” I report. The new guy is unperturbed. “It’s still the best explanation we have.”

Another Run at Turning Over a New Leaf

I have been thinking about this for several months. I have decided I am tired of being sad and hurting about the fact that he is going to die – something that has been nearly all consuming for the past two and a half years. And it’s fucking exhausting. Instead, I am focusing on the moments we have. (I know, I know. I’ve said that before. Hey! This whole thing is a process not an event.) Today, Mr. J is still funny. Today he is not eating rocks. Today he still knows he loves me. It’s taken me more than a minute to figure that out. I’m betting on having to figure that out again and again.

Dr. Good Enough

Another thing I have figured out is that I don’t need a definitive answer right now (which is a good thing because a definitive answer to Mr. J’s differential diagnosis can only be had post mortem). I have renamed “the new guy” “Dr. Good Enough.” For now. Dr. Good Enough explained to us there is no medication, treatment, or cure (which we already knew). But he reminded us (because I swear, at some point I did know this) that the two things we can control are Mr. J’s environment and his sense of well-being. “Come back in six months,” he said. Good enough. Whether Mr. J does or does not have the differential diagnosis assigned to him is, I have decided, of no consequence to us at this time. We can focus on his environment and his well-being, which, let’s be honest, can only enhance my environment and well-being as well. Good enough.

On My Own Journey

We also saw Mr. J’s occupational therapist, M, this week. She is lovely. At some point, I was saying, “I was fine carrying the entire load when Mr. J was a zombie” (a reference to those awful early months, before the sleep study and the CPAP that began the upward climb). “But now I find it frustrating, when he is perfectly capable of making and keeping a lunch date with a friend, that he can’t seem to contribute energy towards keeping the kitchen tidy, for example.” M nodded sympathetically. “Are you seeing a therapist?” she asked me. “Oh, boy,” said Mr. J. “Here we go!” I gave M an abbreviated overview. She gave me a referral. To an actual person. Who works with her. “I think it would be a good fit,” M says. “If she’s going to sit there and say, ‘So it sounds like you might be under a bit of stress’ I want nothing to do with her,” I shot back. “Well,” M responded, “It’s a ‘he,’ and like I said, I think you’ll really like him.” She gave me his card.

Stumbling Through

In other news, Mr. J is on his own emotional and spiritual (in the most non-religious sense) journey. But that is not my story to tell.

Both Dr. Good Enough and M think Mr. J should consider a small, low pressure, part time job or volunteer position. His therapist agrees.

Buy me a coffee!