Update and diagnosis: a new chapter

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Hi.

Resurrecting this part of the interwebs to deal with the latest life challenge – caregiving.

Let’s start at the beginning, or when we realized there was an issue.

Last summer, mom “lost” two or three days. She has no idea where she was or what she was doing. She drove, that much she was aware, and she hit something as evidenced by a long scratch down the side of the GMC Acadia.

It was weird, but I didn’t think too much of it.

In September, while I was in Indiana at my alma mater, B received a call from my mom. “I’ve been discharged. Come get me,” she said.

“Joy? Where are you?” he asked.

“I called an ambulance to take me to the ER, and now they’re letting me go so I need a ride home,” mom said.

B had to leave work (late night event) after her call; he picked her up and drove her home. That’s when we became aware of the condition of her home.

I hadn’t been in her house in months. No reason to.

Dishes hadn’t been done in some time. Laundry was stacked in her room. Piles of opened and unopened mail around the living room. There was a path from the front door to the kitchen. It was bad. Jack and Lauren went over the next day to clean; I met them there.

Mom called the ambulance because of a fall. She had been falling a lot. So much that I really didn’t even react when she told me about her latest fall.

After the “lost days” incident, she gave me her keys and decided she shouldn’t drive any more. I took her to all doctors’ appointments and physical therapy. It was basically twice a week from September to the holidays.

The incident also forced the discovery of mold in her basement. The smell was overwhelming, and while there wasn’t evidence of water, there was some mold on the ceiling tiles, and it was obvious there were issues. I pulled a bookshelf away from the wall, and the carpet underneath was black. When it started and how long it had been going on, we’ll not know.

We started the mold mitigation process in December, and she stayed with us while treatments were unleashed on the house to kill any spores.

Mom also stayed with us at Thanksgiving and Christmas. Her demeanor was strange. She wasn’t herself.

These were not good visits. She didn’t leave the room (we had her staying in my office since it’s on the first floor, across from a bathroom). She didn’t really interact with us. She came out for meals, said only a few words, and that was it.

At Christmas, I lost it. I got so frustrated with her “giving up” attitude that I left. Got in the car and drove off. Then I turned around (about one block from home). I came back because I wasn’t just going to walk away. I was going to confront this.

I told her that she was giving up, that I didn’t know if it was extreme depression or what, but it wasn’t normal, and it wasn’t her.

She told me I didn’t listen well, and I was mean. Fair.

B took her home.

Mom and I didn’t talk for a few weeks. When she was leaving, she said she’d have a neighbor take her to the doctor and to run errands for her. My aunt (mom’s sister) called me a few weeks after the incident. My aunt asked what happened, and I told her. She listened and said I needed to do what was right for me and that I needed to protect my own health and family. She told mom to apologize to me and to knock it off.

Mom and I started talking again.

In January, we got the diagnosis that changed everything. Her neurologist referred her to a neuropsychologist. I took her to both of the appointments. When the neuropsych called me back to review the results of her hours long test, I knew things were bad.

He showed me the results – a couple of dot-to-dots (follow the numbers in order), draw this image over here, remember these words. The things I could see (dot-to-dot, image drawing) were disturbingly incorrect. He diagnosed her with mild dementia. Fuck.

The diagnosis was horrible to hear, but it was actually good news. I changed my approach immediately. She couldn’t help how she was acting. I couldn’t confront her anymore. I needed to be gentle, understanding, helpful. I needed to start researching.

“It’s probably cancer, but we can’t see you”

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Thirty minutes ago, B came into my home office where I had just wrapped up a video call, and he closed the door.

He had just had a (phone) consultation with an oncologist, and he needed to update me.

“There’s a 70% – 75% chance it’s cancer,” he said. “But it hasn’t really grown since the first scan.”

___

B was diagnosed with colitis a few years ago, and a few times a year, it flares up so bad that he undergoes CT scans and other tests to make sure there’s nothing internally wrong. He had a scan in early fall, and another a month ago. Neither showed anything related to the colitis. But the second one caused his doc to refer B to an oncologist for further evaluation.

There was a spot on his kidney that was very suspicious.

The oncologist consultation was scheduled then rescheduled. Today, because of restrictions on hospitals and the cancer center, that consultation took place by phone. The doc was running two hours late for the call, but B was assured it would still happen.

The news: very much most likely cancer, but super slow growing (as if that would be reassuring). The spot WAS on the first CT scan, but no one was looking at the kidneys so they didn’t see it. If it’s grown between scans, the grown wad super minimal, but still the spot needs to be removed.

The oncologist told B this type of cancer doesn’t usually need chemo or radiation. And it can be removed while keeping the kidney intact and functioning. One night in the hospital, and then it’s about a six week recovery (basically, no heavy lifting or hits to the kidney). Bing. Bang. Boom.

But surgery can’t be scheduled until mid- to late-May — at the earliest. The oncologist has canceled surgeries like this, given the situation with COVID-19. (The oncologist originally told B it would be June or July, but B pushed back because of a major work project in July and our scheduled family vacation.)

So I guess we have to wait.

As a cancer survivor and a widow, I’m a mess. B is acting all “whatever” about it, but I want to cry. I want to scream. I want to hold him and cuddle him. I want to break down. I want to ask the doctor a million questions. I want to get B in for surgery RIGHT NOW.

But I can’t. B doesn’t want to say anything to anyone. He doesn’t want family worried. Or kids to worry.

I’m hoping he’s told me everything, but I imagine he doesn’t want me to worry. Hell, I’d hold back info to me right now, too.

I’m scared. Really, really scared.

 

Got out today!

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Today followed the same pattern of a super long day, but also a super slow one. It seems like days ago since I went out to the grocery and dropped off provisions at my mom’s. But that was at noon, just six hours ago.

So I did get out of the house today. We needed some fresh fruits and veggies and a few other things. My mom needed bread and eggs. She also asked her elderly neighbors if they needed anything – they didn’t, but they’ll call me if that changes. I got to talk to my mom for about 30 minutes. She stood on the front porch and I stood in the driveway. It was great to see her and sad because I couldn’t hug or kiss her.

I figure there will probably be at least a trip to the store once a week, other than milk runs (that’s every few days, even though we’ve DRASTICALLY cut down on milk consumption, much to the dismay of the teenager). Stores are strange. There’s no selection. Mom needed bread, and there were literally six loaves of each of three kinds. Such limited choices. Absolutely no chicken – fresh or frozen – to be found. Eggs at only one store (Walgreens). Milk down to skim and whole. No potatoes. Lots of oranges and apples, but almost no other kind of fruit. Paper aisle down to four packages of TP and two or three rolls of paper towels. Liquor section still stocked (thanks, Wisco!) and everything in that section at full price.

For the last few years, I’ve been really good about menu planning, and I’m not letting that go. While I’d like to stick to what we know during this time of getting adjusted to a new routine,  B sent a ridiculous recipe involving chicken wrapped in a puff pastry. Yeah, sounds great, but dude, I ain’t got time for that shit right now. Spaghetti it is.

Kids are getting a little better. Of course this was the first day with just E and L. We’re going to try to keep the visitation schedule as much as possible – basically, until we go into full shutdown. You can imagine how B’s ex feels about that. She’s bitching up a storm. Because it’s going to be so HARD to manage with the girls at home. Because her job is so critical right now (um, it’s a nonprofit that deals with a very specific profession, so no it’s not). Because SHE’S A SINGLE MOM WITH NO HELP.

Let me pause there. She needs to shut the f- up about being a single mom. That argument doesn’t play with me. She’s going to struggle because she’s designated her home as the fun-time play-zone. There are no rules, no schedule, no respect for her authority. She’s their playmate and now she might have to actually (gasp!) parent.

Also I have no tolerance for whining about being a single mom when she has a VERY involved baby-daddy with B. You know who was a single parent with no help? Me. You know who managed? Me. You know who has no sympathy for that shit? Me.

Anywhosit, E still doesn’t have work. And L’s school is in denial of “all schools closed indefinitely.” Today an email from the teacher included the line, “If this continues much longer, I’ll probably have to figure out how to get math lessons to your kids!” and “While you’re waiting this out, here’s a link to our spring concerts songs. Be sure to practice at home!”

So, no we’re not practicing for the spring concert, which was scheduled for early May. And yes, you really need to “figure out” math for the kids. The four weeks of lessons she sent home NEEDED to include math and didn’t. I’m pretty much at the point of throwing all the bullshit, half-assed, put-together-in-a-hurry-without-a-thought bullshit sent home and start over. This is ridiculous.

Trying to get my classes together to go online for the rest of the semester continues to slowly inch forward. Today I tested two different content delivery systems. I’m overwhelmed at the options Tomorrow my TA and I will decide how to move her discussion sessions online. I also want to finalize my class syllabi and start recording lectures. I’m sort of terrified of getting sick and not being able to get information to my students. I figure if I can record 5 minutes on each topic, at least they’ll have some of my insight.

Today’s bright spot to all this: not being afraid because of last year’s student stalker! It’s always been at the back of my mind, him coming to campus and coming to one of my classes. With campus closed, no concerns!

Corona-cation: it’s a lot

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Wednesday. Hump day. On what should have been my spring break.

Homeschooling is… well, it’s sort of school-esque and it’s at home, and that’s about it. The assignments are ridiculous. No offense to teachers, but four kids in three districts is interesting. E’s work won’t be available until mid-next week at the earliest. L’s work is fine, but VERY light on math and SUPER heavy on religion. I’ve supplemented some math because it’s her favorite and told her to ignore the religion. B’s girls have had technical difficulties.

But here’s my problem. There’s no plan for GRADING the work. And I literally have no time to do my job AND grade elementary school work. And if I magically find the time, I  expect to be reimbursed for it. Seriously. The teachers are getting paid right now, so… figure out how this shit will get graded, please. Especially the stuff on which the next lesson builds. C’mon – my kid isn’t just going to do busywork! And if that’s the plan (no grading), then fuck the assignments and I’ll find my own direction. There’s more than enough resources out there right now. I can cobble something better together (with online grading, of course).

I’m finding it super challenging to balance work and redoing an entire semester (now classes online through end semester) PLUS acting as teacher PLUS acting as recess supervisor and referee for the kids PLUS managing the house (break for lunch! break for snack! break to find scissors! break to figure out dinner! break to make a grocery run list! break to do 17 million things! PLUS trying to make sure mom is ok (she is) PLUS handling freelance responsibilities PLUS PLUS PLUS. It’s so much. I’m hoping a rhythm gets established soon. But I’ve never been a patient person. I keep telling myself this just started, it’ll take time.

Here’s what’s weird: The day both flies by and is super slow. Like there’s so much going on that I can’t believe what happened this morning was part of THIS DAY. There aren’t enough hours in the day, yet I need a break. I’ve done so much, yet I’ve done nothing.

SIDE NOTE: Interestingly, my grandfather JUST realized the severity of COVID-19 – when he went to the coffee shop today for his daily toast and java and it was closed. Until then, he and his lady friend have completely ignored all warnings and loved ones telling him to stay home. It was just today when Fingerhut’s was closed that he and Rosie went to get groceries and decided to “hunker down” for a while.

SIDE NOTE 2: Today’s interesting and sort of amusing thought: when this is over, everyone is going to be so ridiculously shaggy. No haircuts. No color. No waxing. Nothing. Just sitting at home, growing hair. Good lord, I’m glad I’m not coloring my hair anymore, but these curls are going to be WILD in a few weeks.