death

September 9, 2020

Terminal in the time of Covid

Covid truly has ruined everything. Even getting a terminal illness.

The most human thing people do, when they’re given a prospective date of expiration, is they want to make the most of the time they have. They don’t want to waste it sitting at home. They want to drink, travel, have new experiences. Well, that is made impossible when everything is shut down.

The other odd side effect is even if you manage to do something, people get up in arms about you “endangering lives” and not continuing to quarantine. They shame you for not doing what they’re doing.

They’re allowed to feel that way, but what if you are given 3 years left to live. Would these same people be cool with sitting inside their home, waiting until they die? And even if the person with this disease caught Covid, they’ve already been deemed terminal. It is quite the ethical conundrum.

My husband was diagnosed with ALS in the time of Covid. He has approximately 3-9 years left, depending on his progression. And even then, that’s just living. He could have 6 months to a few years remaining where he can walk and move around on his own. At some point he will be wheelchair bound. When that occurs is all up to the disease and entirely out of his hands.

True to natural human desire, he and I want him to live everyday like it’s his last. We want to make the most of the time he has left. Whatever that may look like.

This previous weekend we wanted to take a trip, somewhere, to kick of his “Farewell Tour,” as we have dubbed it. Knowing that things are closed made our options real slim. I thought about just doing a road trip, but fuck if even that isn’t super difficult. Every time we made a pit stop every restaurant had their bathrooms closed to the public. I wanted to scream.

Ultimately we decided to visit family in Arizona. It got us out of the house and gave us a destination that didn’t require us to make plans or wear masks. We did still isolate and just spent our time in their homes, drinking; which made things awkward. My aunt got really hammered and started hitting on my husband.

“Have you ever had sex with a woman?” she asked, as we swam in her pool, in between the times she kept playing with my husband’s feet.

In the sober hours she had no recollection, or chose to ignore it. Which I am all for. Liquor makes people do the dumbest shit. And, boy, was she drunk. My favorite part was her telling us repeatedly how she had designed the layout of her backyard. “I’ve never designed anything, and I designed this. Can you believe it?”

I love her.

For a couple days we got to pretend that my husband isn’t dying.

While we were in Arizona, we decided to take a detour over to the Mayo Clinic. We may be getting our second opinion from this particular campus, since the hub’s primary at Cedars is referring him there, to one of his colleagues who specializes in ALS. If he’s accepted, that could very well be where we spend a good chunk of our time.

Overall, it was a good weekend, even despite the challenges Covid creates. It’s just super shitty to try and live while the world and the disease dictate us to not.

September 1, 2020

Grief Fragments

I really don’t know what to write. I know I should. I want to. But for the life of me, I am such a bundle of emotions, I can barely string together a coherent, pensive thought. Instead they’re fragments of grief.

It’s almost been a week since I found out my husband is dying/going to die. And it has been quite the emotional roller-coaster. The moments where I glide along an even track are my favorites, because it’s then that I can readjust and get my bearings. Although even then, I will barely have had any time and something will plunge me into a spiral. And it can honestly be anything. (Songs, I’ve discovered, are the worst.)

We have since spoken with the doctors handling his diagnosis and they seemed optimistic, in regards to treatment. (Or at least I took it as optimistic, even though the diagnosis is terminal.) The primary doctor or attending (whatever it is) was pretty certain he has ALS. I guess they went with motor neurone disease because it’s too soon to make a concrete diagnosis, and MND is kind of an umbrella, with other bizarre things beneath.

In regards to time… Well, even he said from the start that’s a loaded question. He said from his experience with the disease that it averages 4-5 years. Which, is good, and shitty. It all depends on the person and each one is different. The primary physician suggested doing clinical trials for treatments, and my husband definitely wants to (because he wants this to have meant something.) The resident also suggested a secondary treatment that would involve my husband getting shots three times a week, and would include a permanent port in his body for injection. I thought the hubs would say no to that but he was on-board. The doctor said this “infusion” typically adds about 1/3 to the time.

For whatever reason, I have a number of years stuck in my head. I only think of it because between the two of us, there is usually a 12 or 7 between us. And with the husband it’s always 7. However, I understand that’s just a grieving spouse clinging to hope. I should know, more than anyone at this point, that nothing is ever certain.

January 1, 2020

All down hill from here

As is custom, when I sit on the edge of a new year I take a look back at the previous one. And it must be said that 2019 was quite the train wreck. All the politics and world issues aside, my personal life was a rollercoaster.

Going chronologically, it started off great. In February of last year I passed my real estate appraisal licensing exam (on the third try) and officially became an appraiser. Then in May I was awarded my AA degree, summa cume laude (then proceeded to transfer to a more distinguished college campus). And in the space between these two landmark achievements, I felt empowered and returned to editing my novel (because nothing could stop the success train!)

I got halfway through my revisions before life turned on a goddamn dime.

The first punch to the gut was my mother getting, officially, diagnosed with Alzheimer’s. (Prior to that a nurse practitioner diagnosed her weird mental failings as being under too much stress.) Her loss of memories be damned, it was her erratic and bizarre behavior that finally showed my father and I the ugly truth we had been denying.

Following that my grandmother was diagnosed with stomach cancer. She was given a month to live and that she did. She passed away in the early morning hours after everyone had left her to rest.

Immediately after that death, my father fell and hit his head while taking his morning piss. (His third time falling that week.) He arrived at the hospital unresponsive and stayed that way until I gave the order to let him rest. He was gone in less than a minute, surrounded by his family.

Since then it has been failure after failure as I struggle to balance my job, my academic life, my romantic relationships, and being the sole caretaker for my mother. I try to keep up but I’m always letting someone down or forgetting to do something.

This had been the way of things until very recently…

After my husband had his weight loss surgery he began to have issues with his balance and walking. It got to be so worrisome that he was sent to a neurologist who ordered MRIs of both his brain and spine, and who gave an early diagnosis of “pressure on the spine.” He has since had them and now we wait for that news to hit us across the face.

To say that 2019 fucked me up would be an understatement. It bludgeoned me and left me on the side of the road to die.

But all is not lost…

This notion that at the stroke of midnight we are all given new lives and new opportunities is ridiculous. In reality we have that at all times. Even when things are shitty. Every moment is new and undiscovered. We get to forge new paths everyday. But just like any route the terrain is vastly different from the one that came before it. How you navigate through it depends solely on your willingness to keep going.

I am glad this year is done. But the shit storm that has become my life will only get progressively worse. It’s just the path I tread. However, I will take every moment I can to find happiness. I will surround myself with love and companionship to remind myself that in the end all that matters is what we did with the time we were given.

July 29, 2019

A Month in Review

It’s weird to think that my dad has been dead for a month now. It simultaneously feels like it’s been forever and then again no time at all. I miss him but at the same time I miss what he was for my mother, a caretaker.

My mother has Alzheimer’s. An aggressive bout of it, it would appear. Everyday it feels like she’s getting worse. Then again it could be because I am seeing all of it, in all of its cruel glory without filters.

I never truly understood how bad it was. My father would just tell me that it was getting worse but never elaborated to how or why he felt that way. Now I do.

For those keeping tally, I have bathed my mother 3 times and cleaned up her “accidents” just as much. She has so far accused my husband of bringing a woman home and fucking her in our bed and has also told us (on a separate occasion) that the power chords in her room were calling her ugly. However she also has accurately figured out who Josh is and what role he plays in my life. To that I say “clever girl” in the voice of Robert Muldoon from Jurassic Park, right before he’s devoured by a velociraptor.

My mother is adamant that she won’t be living with my husband and I. She wants to go home and me “live my life” and she “live hers.” I haven’t even broached the subject of assisted living by the advice of a woman who’s sole job is to place elders into care. That’s about the only thing I’ve listened to thus far.

I’m trying to please too many people in this situation when I have to think about what is ultimately the best choice of action. What that is I don’t know. Well, that’s a lie. A care facility would be best but when I look at the monthly cost, coupled with how much money she has and how little I make to supplement that it seems like a fools errand. Especially given that we don’t know how long she will live.

Getting old in America is genuinely a cruel joke. You work your whole life, scrimping and saving to leave your children something after you go, and instead it is bled dry by corporations who make money off of the infirm. All for the idea of safety, care, and security.

I am someone who couldn’t care less about what my mother could leave me. Her on the other hand is deeply concerned. She repeatedly tells me she wants me to have something upon her passing. Looking to the horizon that will be one other thing she won’t get.

But it’s for the best, considering her disease has already claimed one life and it wasn’t even hers.