dying

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 3, 2020

Project: Optimism

Depending on things going according to plan (and let’s face it they don’t tend to do that in my family), the husband and I could very well be taking a road trip to Minnesota to get a second opinion on his ALS diagnosis. While he and I believe the competence and skill of his current doctors, it would be negligent on our part to not make the effort. In addition, I know his family is holding out hope for their own “google search diagnoses” to be true. Since we were told he has motor neurone disease (aka ALS), each one of them has become experts within a few key term searches. The problem with their optimistic perspective is that it’s infectious. Now I too have a glimmer of hope.

I hate how pessimistic I have become. I call him “Dark Josh” and he jumps out every once in awhile when the weight of the world gets to be too much. He’s realistic, but also very cold and, at times, cruel. It’s not difficult to maintain my jaded world view after all the bullshit from this past year.

I say these things, though clearly I don’t believe them as staunchly as I had assumed. Or I wouldn’t be entertaining the idea of this side quest.

Don’t get me wrong, I really don’t want his diagnosis to be real. The last thing I want to see is my husband slowly disintegrate before my eyes, until he’s just gone. I’d rather gargle Trump’s balls while he poured bleach in my eyes. Yet, I can’t undo what’s already in process or ignore the matter-of-fact way in which these doctors discussed his dying… But I guess I can hope.

The hubs’s family holds a firm belief that he has a vitamin deficiency. They assume as much because his symptoms did not occur until after he had weightless surgery (the gastric “sleeve”). It was only a month (or two) after that they manifested. Many of the symptoms tied to this keyboard-diagnosis are very similar to those of ALS. But there are also a lot of symptoms that these articles claim to happen with these deficiencies that he hasn’t experienced. And the same could be said for the ALS. Even the doctor admitted that the timing is suspect and that there have been some atypical results in their tests. He too recommended getting another’s opinion.

The fact of the matter is, I am willing to go to the ends of the earth for him. No matter what it is. I will go with him, hoping for the best but preparing for the worst. And if we get the same answer, then we will take the next steps to slow the process. My biggest worry is that this will all have been for nothing and we will have wasted what little time we do have.

P.S. I hate that both my mother and husband have diseases with ticking clocks. Add some new writer’s to the room, God. You’re getting tired and sloppy with these recycled plot points. At least give me a long lost twin brother.

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.

July 11, 2019

My Life Turned on a Quarter

Today will be two weeks from the moment my entire life changed with a single phone call. The one in which a stranger left me a message from my parents line to tell me that my father was taken to the hospital in an ambulance and she was waiting with my mother for me to arrive.  Five minutes later, panicked, I called back and got the details. I told my mother that I had to do an inspection first before I could get her. I was oblivious to the seriousness of the injury. Now, knowing everything I do, I would have left immediately instead of doing my job first. But I was in denial that it could have been anything worse. (This wasn’t the first time my pop went to the emergency room.)

After rushing through my home inspection I got in my car and hurried over to my parents to retrieve my mother. For a brief moment, during my drive, I had a spark of dread that my father would be dead and I would have to take care of my mother (who has alzheimer’s.) As the anxiety began to engulf my chest, I told myself to just take things one at a time. Everything would be all right.

I arrived to my parent’s house with the security screen and front door wide open, my mother was waiting for me inside, shuffling items in the dining room. She had packed up his wallet and all of “his pills” in a basket and was ready to roll. (It turned out they were her pills and not his. But, oh well.) She was already fearing the worst, and I, uncharacteristically, told her not to think that way. We didn’t know yet, and to do so would only make it worse.

She agreed and continued to spin the lone quarter in the palm of her hand.

We arrived at the hospital, with no knowledge where to go. Even the quick description from the security guard in the E.R. was super vague and not at all helpful. When I finally figured it out, I called around and eventually found out he was in surgery.

My mother was beside herself, even then. Again I told her to not worry, we would find out what was going on when he was out.

For the next thirty minutes I calmed myself by playing a game on my phone as my mother babbled on with nonsense about “jesus” and “the Christians”… her usual go to commentary from her diminishing brain.

I am almost certain that doctor’s take a course in medical school wherein they learn to deliver bad news. The moment the surgeon removed his net cap I knew my father was gone. There wasn’t a doubt in my body. However, what I would soon learn was that he wasn’t “gone” physically, but rather mentally. He had arrived unresponsive and stayed that way until the end.

As it turned out, my father had fallen and hit his head when he had gotten up to pee in the early morning. What time that was at I have no idea. Getting a straight answer out of my mother is near impossible, and her story (which she recounts in graphic gory detail) changes each time.  My father had asked my mother for help, and her response was to run outside and call for it from anyone who might hear. She encountered a bus driver who told her the number to dial an emergency (you know, the one everyone fucking knows) and when she got back inside she forgot it completely, thus she returned to the front yard. This is where she encountered the stranger who called 911, like a normal person, and took care of my father as instructed by the emergency operator.

After the surgeon removed a portion of his skull to relieve the massive amounts of bleeding, he was moved to the ICU. Room 11 for child 11. It was there that I was handed the gauntlet to be the one to make all of my father’s decisions. My mother couldn’t even grasp what was happening, and was distracted by my father in his hospital bed. So the nurse’s calmly rattled off their assessment of the situation and asked me how we were to proceed. I wasn’t ready to make these decisions. This man’s entire existence rested in the palm of my hands.

I had concluded that the hospital should keep him on life support until my Aunt arrived to say goodbye. Once she had had her moment with him, I gave the order and they removed the tubes. I told myself I wanted to be there when he went, but I regretted it almost instantly as I watched him arch his back, take his last breath, and hear his heart slowly stop beating. It is an image I will never forget.

Today, two weeks from being told my father was mentally gone, I have to put on a brave front and lay his body in the earth. But before that, I must deliver his eulogy. One in which I most likely will not write and just deliver off the cuff; against the advisement of the preacher, but fuck him. However my own hatred to spite another person will only harm myself and I will inevitably detest myself for not even attempting bullet points.