The Spring of My Insanity
That sounds overly dramatic, but I promise you that it’s a whole hell of a lot faster than saying, “My life was hellish for four months in 2019 because my uncle lost his mind and my aunt went from end stage Alzheimer’s to dead in the process.”
(I’m writing this in 2022 and backdating, by the way.)
Get ready to settle in for a long one (and lots of text blocks)…
Thursday the Twenty-fourth
I swear to Goddess, when it rains, it pours in this family.
I don’t think I’ve mentioned it before, but I have an aunt in what I largely suspect is end stage Alzheime’s. She and my uncle (Dad’s youngest brother, Brian) live in North Carolina, where he has a massive commute to work, and who knows how much more driving now that my aunt is in a home.
I was almost ready to leave when the phone rang. It was my dad’s eldest brother (Paul). I guess the best way to explain what happened is to say that Brian’s coping mechanism gave out. He was found 120 miles from home (in Tennessee) driving the wrong way on the freeway. Fortunately, law enforcement caught him and took him to the hospital. Doctor diagnosed him with amnesia, probably caused by too much stress and not enough sleep/food. They’re going to run some more tests to ensure its nothing more sinister and then tell Paul what comes next.
Then, to add insult to injury, I was so worked up about my uncle that I got halfway to Grand Ledge before I realized I’d forgotten to borrow Dad’s Meijer card. 🙄
Ha! If only it were that easy!
Friday, the Twenty-fifth
Paul called at 10a and Brian’s in a bad way. The former talked to a nurse who said that Brian’s memory is stuck in August 2018, so he had no idea his wife was in a care facility (I believe she went in in October), doesn’t know where he is (neither do I if you want to get technical! just that “a Tennessean hospital” is the most likely) and (this is implied) he keeps forgetting it’s 2019. O.o
At any rate, the nurse said it probably wasn’t the best time to visit. (Not like I would want to drive down there anyway!)
That’s it in terms of facts. The rest of the chat I had with my dad this morning centered around whether Brian’s amnesia would cause him to retire earlier than planned, whether he’d need his own helper at home, etcetera.
More as it becomes available.
Five Hours Later
I was actually able to sit in on this phone call and learn that Brian is in Athens (TN), three hours (163 mi) west of Asheville. At this point, the neurologist has decided it’s best to send him north to Knoxville or south to Chattanooga to be further evaluated.
Paul tried talking to Brian and asking about a key so someone could get in and feed the cat, but whatever location he gave wasn’t it. His attorney asked the same sort of questions and Brian thinks that he’s going to go home tonight (I guess he thinks he’s at work?) and take care of everything. O.o
My uncle’s neighbor ended adopting Toby. With all the time Brian spent in the hospital and then recovering in rehab, it was better that way.
Saturday, the Twenty-Sixth
Brian fell before leaving for Chattanooga. Evidently they told him he was leaving and he tried to be all helpful and…CRASH! (I shouldn’t laugh, but it does give me kind of a chuckle.)
I guess he’s been very subdued since arriving. Paul said he still might be somewhat confused, but it seems to have finally registered that he has a Significant Problem and he ought to behave.
Sharon (Paul’s wife) asked if Dad had power of attorney papers drawn up. He thinks so, but he needs to go digging. I know I sure don’t, so it’s now a Thing I Need to Look Into Sooner Rather than Later. The attorney my mother used for everything recently retired, but I would assume his successor wouldn’t be running the business if she wasn’t (pardon the pun) successful, so maybe I ought to inquire with her.
I called a couple of attorneys. They never called me back, and LegalZoom was too pricey. (Not like I have anything of value, anyway…)
Three Hours Later
O, irony of ironies!
Found my dad’s will. He hasn’t updated it since the divorce, so the power of attorney still rests in—you guessed it—Brian’s hands. His backup? My uncle Tom, who is blind from macular degeneration. Yeesh. 🤦🏼♀️ Now that I’m of age, his POA will be transferred into my hands, and he has to think of who his new backup will be.
Tuesday, the Twenty-ninth
Paul called Brian’s employer and (gran sorpresa!) they’ve been seeing red flags for ages. They tried having A Talk with him about it, but—as with a lot of people—he denied anything was wrong. 🤦🏼♀️ (Not the first time I’ve seen Mother Nature play the “if you don’t slow down, I will TAKE YOU DOWN!” card on someone.)
(*Bill is Dad’s next oldest brother. I think I mentioned that Paul is the eldest, but I don’t remember if I said that Brian is the baby, so there we are.)
Even after more than twenty years, I am still unwilling to name this person in order to prevent drama. (Don’t care that I’ve mentioned his name elsewhere on this blog…I just don’t have the fucks to give right now if people want to come after me.)
At any rate, he bounced from thing to thing like a typical Gemini and Mother Nature bounced him…to the tune of broken bones and at least one lost tooth.
My last entry for the month was just about finding the cat, learning where my aunt was staying and wondering when my uncles were going to leave for Tennessee.
Which brings us to…
Tuesday, the Twenty-sixth
Good, sweet Mother Goddess.
The doctors have come back with something so crazy, so absolutely LEFT FIELD, that I’m not even going to name it. Like, if there was a Snopes for your family’s health, I’d be searching it like crazy.
Or only McDonald’s filing for bankruptcy would be crazier.
I’ve recovered from my blind, gripping panic for the moment because there is simply no evidence for it—at least nothing that Paul relayed. They did a lumbar puncture and are waiting for results, so until they come back, I’m taking shelter in my disbelief. Taking shelter and fortifying it with a spiky horde of, “Thanks for terrifying my father and uncles, assholes!” (Truly. There’s nothing better than waking up in the morning and discovering your father sobbing his ass off. 🤬)
It was a lot like they were trying to convince us that “2 + 2 = 5, and by the way, that’s going to kill your uncle!”
Ten Hours Later
This morning, Paul said they got a second opinion for Brian, and this doctor said zhe thought encephalitis.
I never thought there’d be a time that would be a relief, but when the Disease That Must Not Be Named was THAT BAD, it is. Encephalitis is quite treatable, so we’ve basically gone from (the equivalent of) stage IV cancer to a cold.
[Paul and others are] also working on getting Brian transferred to the assisted living facility where my aunt is living, as they think that will help both of them.
I can’t wait any longer.
I don’t want to scroll to find the relevant post and come back.
Some dumb fuck who called themselves a fucking doctor (and should never have been permitted to open their goddamn mouth) DARED to tell my family that Brian had Creutzfeldt-Jakob disease.
Or, in plain English, Human Variant Mad Cow.
Which always kills within a year.
My father was sobbing because his baby brother was going to die and there was nothing anyone could do, because prion diseases are incurable.
I clipped out a bit where I felt a tad guilty grumbling over my options for funeral clothes when Mona was only in hospice and not yet gone. (Spoiler: my mother stepped in and dressed me, and then let me raid her closet again when my cousin got married in July.)
Saturday, the Thirtieth
This isn’t an official update so much as…thoughts?
Scientific American said the timeline for death through lack of sustenance depends on body composition and whether they’re properly hydrated. Someone who has been in a persistent vegetative state whose lifelines have been stopped, for example, may take 10-14 days to pass. So it probably wouldn’t be amiss to think it will be another week or so.
(Now if I could just get my mind off the edge!)
Not sure how arrangements will work out…Dad and I suspect that the attorney will obtain a casket and set up a service in North Carolina, then arrange to ship her through Detroit when they’re finished. (If it’s just a shipping container, though, Dad will insist on putting Mona in the casket he bought a few years ago.) We may only have to purchase a vault and decide on a date for a memorial with the Michigan family…last I knew, there’s a plot next to my grandparents in Chapel Hill that we can use.
I wondered how I managed my paternal grandmother’s passing if I knew she was in hospice, but I was SUPER busy about that time.
- Band Bounce and dance recital (on the same night) the weekend following
- I think the band trip left the Thursday after BB
- Last month of school
- Prom and final parade Memorial Day weekend
- Graduation at the beginning of June
- I may have also had my orientation date set for Western
Ah, yes…the year the owner of my studio decided to be a bitch and hold recital over top of Band Bounce.
Nevermind that BB was (and is) decades older than her studio, and she was very well aware that four(?) of her dancers had to perform the same night.
But that’s another story.
Sunday, the Thirty-First
Talked to Brian and he sounded exactly as I hoped: slightly confused, struggling to remember things, but—most importantly—sounding safe and well-cared-for. It’s conversations like that that give me the confidence that he’ll eventually get better.
I was going to leave that out, since it was such a little blip, but it sets up something else I wanted to mention.
I was in Meijer just before or just after Mona passed (after, I think, because I was attempting to mail something to Brian that had come as a result of her death), and a woman next to me said that she’d had encephalitis and that she was fine now. That, too, gave me the strength and the confidence to believe that things would get better, that I’d get my uncle back. (Thank you, fellow customer!)
Thursday, the Fourth
My aunt has finally passed. 😥
Paul told me that Brian talked to her for a few minutes yesterday and that’s what she was waiting for, clearly.
Jesus, Mary and Jojo the Carpenter, is it hard waiting for a loved one to go!
Every time the phone rang for about a week, I was convinced that it was someone calling to tell us that it was finally over.
Also, since I don’t make it clear up there or in the next entry, I called Uncle Paul after I got up. (I may have called him first to get information to relay to my dad, who was working that day.)
Three Hours Later
I was thinking how fascinating it is that people can figure out signs/signals that other people have created, even when both parties haven’t previously agreed on what it would be. Case in point: got up, Paul’s cell was on the id but no voicemail—and I knew. (Plus, I hadn’t taken the phone back to bed with me when I went potty at 7a, and my dad thought she might go on Bill’s birthday, so there’s that.)
The decedent’s spouse should take care of that (if they have one), but Brian’s state of mind is still so fragile that it’s not permissible.
Shanna (Mona’s bioniece) would like to handle them, but she’s in Texas…and if there’s no will, I’m not sure there’s a legal provision to permit her to do so.
A guardianship for Brian was set up a few weeks ago, but I [don’t know that] that provides us a legal means, either. It occurs to me, in fact, that Paul may not know where things are headed because Lawyer-Brian might have to go before a judge and say, “This is what’s going on…what do we do?”
I’m glad we have everything straightened out in terms of power of attorney for my father. If something happens, the power is in my hands (as it should be), and if I can’t act, my cousin Bess Ann will take my place.
Two and a Half Hours Later
Called Paul again after Dad got home to ensure I didn’t miss anything. He had said yesterday that the hospital/attorney/whoever is working on finding him a rehab center near Asheville so he can be visited by his church friends and coworkers and be closer to where he’s made his home for nearly thirteen(!) years. Once he’s settled in there (maybe in a month or so), they’re going to have a regular funeral for Mona, which he’ll attend. After that, we might be able to have our service up here.
And what came after…
Nearly three years later, I’m still not sure how all this was pulled off. I expect it was the heroic efforts of Uncle Paul, Attorney-Brian, Shanna and funeral homes in two states. (Not to mention medical staff members for both sides.)
As predicted/suggested/planned, there was indeed a funeral in North Carolina first, for which Brian was sprung from the rehab facility to attend. It gave their friends, neighbors and churchfellows a chance to attend without having to travel thousands of miles, and Brian was able to say goodbye to his wife. When those services were concluded, the staff of the funeral home down there put her on a plane to Detroit, where my dad’s funeral home collected her for transport to my hometown (where both Brian and Mona had grown up).
(Yes, Dad collected her from the airport, but no, he didn’t work her service. Although he sure stood around near the coach like he was. 😅)
On the appointed day, my dad and I, my Uncle Bill and Aunt Sally, and various members of Mona’s family (including Shanna—I think she went to both funerals) gathered at the funeral home and sort of had a private visitation. I initially wasn’t going to go to the cemetery, but it was like my grandmothers were hovering over my shoulders, chanting, “You should go! You should go!” with every step I took toward my car. I pulled around to where my dad was parked and told him I changed my mind.
“But you’re not in the procession!” he protested. “You don’t even have a flag.”
“That’s okay!” I called. “I’ll go my own way!”
Better that way, anyhow, as I didn’t have to match the speed of the coach—or anyone else. 😈
Sure enough, I got there five minutes before the procession, even after stopping alongside the freeway to set Google Maps to direct me. (I knew where Chapel Hill was, but not how to get there.) I called my dad to see where I was supposed to go…not realizing I was on the opposite side of the lane from my Uncle Paul and Aunt Sharon, who had come straight to the service from their home up north. I followed them in, parked, had a good, healthy walk, and accompanied the casket into the chapel with the rest of my family.
I feel like I’m not the only one who thinks that if I don’t Do Anything Significant, I didn’t actually Help Out with something, but that’s simply not the case.
You’ve heard of getting together with the girl next door? Before Mona, Brian got together with the girl around the corner and down the street. (I asked my dad and he said he’s pretty sure that Brian and Wendy met through school.)
For me, their marriage was so brief and early on in my life that I barely remember it. In fact, when I reunited with her sister twenty-odd years later (Sherrill used to babysit me), I’d forgotten that she’d even been my aunt once upon a time!
Usually, I wouldn’t bring that up, except that gravesite that might have been in the family that I mentioned earlier? It was part of a pair that Wendy and Brian had bought next to (or near) my grandparents, and Wendy (naturally) took hers in the divorce. The best way I knew to reach her was Sherrill who (Goddess bless her) said, “I’ll deal with my sister. You just focus on your family.”
Wendy not only graciously gave up her rights to her plot, she actually surprised the heck out of me by showing up at Mona’s funeral! Once I realized who she was, I hugged her and thanked her. (I’m big on hugging, if I’ve never said so, so the more to hug, the better!)
The second thing was the smallest, but it definitely broke the tension: I got Shanna to tell her scorpion story.
Many years ago, when we were little girls, I got the chance to spend time with Shanna one summer, and she showed me a scorpion in a jar that she said had stowed away with her on her trip from Texas.
What I didn’t remember (or perhaps she never told me) is that she found the little guy in her shorts while she was on the toilet!
(I’m laughing like crazy as I type this, but it’s kind of a horrifying story!)
I guess she called Brian and asked about bug spray…which I didn’t think would work, until I googled it just now. Turns out many spider sprays will kill them! (That tale was so bad, even the funeral director was cringing!)
I don’t recall the rest of it, but that’s okay. “Scorpion in a little girl’s shorts” is enough for one day!
And finally, though I didn’t know it at the time, I made sure my cousins were kept informed, and they appeared at the funeral in response.
None of my first cousins showed up (unless Shanna counts), but I have twenty-six first-cousins-once-removed on my dad’s side (that number is probably too low, if you can believe it), and—being of retirement age—several of them were free to come.
I became close(ish) to one of my second cousins (Katie) when we were young (I believe she was nine and I was twelve); so while all this was going down, I sent her messages on Facebook. She forwarded them to her dad, he told his brothers, and all of them (save for the one that lives in Minnesota) attended the service. I didn’t get to see Katie until she got married seven weeks later, but it was sure nice to hug her dad in her stead! (Not to mention seeing all of them—and her missing uncle and cousins—again in more cheerful circumstances that summer.) Between the dramatic events of the spring and me being left out of the loop ahead of the wedding (namely that I needed to apply sunscreen—YIKES!), we started a family email list during our family reunion a few weeks later.
(My dad also missed me hugging one of our cousins—to the point he claimed that cousin wasn’t there—but that’s another story.)
I’m glad there aren’t many more details left in Brian’s story, because I feel like I’ve rambled quite enough already.
He was eventually “dishonorably discharged” from the rehab facility because he kept escaping. (He was worse than a prisoner doing life—they gave him a minder, locked him in and he still ran away to his house!) Despite not yet being mentally healthy, my uncle was both restless and annoyed by the fact that he was “shut away with a bunch of old people”, which fueled his desire to escape.
I don’t know when he finally got to “as normal as you’re going to get after contracting a neurological illness”, but his phone calls and emails eventually began to make more sense, and the state of North Carolina finally expressed its willingness to give him back his driver’s license a year or so after his discharge. He also began to make plans to return to Michigan, aided by a neighbor who was interested in buying his house. They came to fruition about a year ago, at which time he put his car on a trailer behind his SUV, made arrangements for his motorcycles to be shipped, and headed north, where he lived in a hotel for a few weeks until he bought a house and got it in well enough working condition that he could at least sort of camp there. (I hesitate to say “live” because it was in pretty rough shape.)
As for that doctor with the nasty news? They can go jump in the Atlantic. My very-much-not-dead uncle and I just exchanged emails today (3 January) about the storm hitting the east coast, thank you very much!