Last night it occurred to me that I am back in the ICU waiting room with my mom, delaying my dad’s removal from life support. Except instead of holding off until my cousin and aunt arrive, I’m waiting for someone that will never come. It’s excruciating agony, like a sharp knife being pulled, slowly across my skin.
We were meant to start hospice but postponed the transition because once we do we lose our team of doctors that have been with my husband since he was diagnosed with ALS. In addition, we’re hoping to get a substantial supply of the medication for the disease. Hospice will not cover that drug. For us to pay out of pocket it would be $690/bottle. My husband is handling those details, from his eye-gaze device, so I am unaware of the status. All I know is that Friday is the day we told them we would make the switch.
His condition is worsening. His speech jumbled and incoherent, at times. Where before he would sleep at the drop of a hat, now not even pills will help. He’ll sleep for an hour or two and then be up for rest of the night and into morning. And where previously he would take Xanax once a month, it has now become a twice a day dose.
Every time I go into our room, and he is sleeping, I just stand in the doorway and stare at him. My eyes focusing on his chest and face for signs of movement. If he were to wake up it would be incredibly creepy. It would be for anyone, really. I do it because I am seeing if he is still breathing. That’s typically how someone with his disease passes, in their sleep.
The other night I was talking with my husband through text message (kind of ironic that our relationship started with text messages…) as we lay in bed side-by-side, his breathing mask over his mouth and nose, discussing hospice. Somehow we started talking about him dying in the house and he said he didn’t want it to happen here. I replied, “I don’t think that you habe any control over that. Unless you’re moved into a facility. And that is something that will not happen.”
So, I sit here and wait… never knowing what the next moment will be. Not knowing what to plan. People are asking me to plan things months in advance and… These other stories, plans, desires, are just the incoherent hum of the television in my “white waiting room.” A world exists out there, but it does not for me.
It’s late and I can’t stop thinking. My body has decided to go through “anxiety drills” and I keep having short and intense panic attacks. I wish I could say that I don’t know where they’re coming from but I do.
My husband has drastically declined these last couple months; ever since he got the feeding tube. We had gotten it as a precautionary thing but it just feels like we hit the gas on his ALS.
We had a big family trip to Las Vegas planned for the 18th. However my husband canceled those plans tonight because he doesn’t think he can physically do it. I don’t blame him. His speech and breathing have gotten bad just these last few days. At times I can barely understand what he’s saying. (It’s like my mother’s Alzheimer’s all over again.)
Just a couple weeks ago we were having a preemptive conversation about him maybe getting a breathing tube (trach). During this he was leaning towards doing it, but after his doctors appointment he has decided not to get one. If he were to do that it would require (literal) 24/7 care. The brother husband and I would need to take classes for his care. My husband wouldn’t be released from the hospital unless they felt that we were competent enough to handle it.
My husband already feels like a burden as it is, so once they told us this I already knew his answer without having to ask.
I’m not ready to lose my husband. I’ve known that the ultimate day was just over the horizon, but even with all the preparation it still destroys me. I can’t imagine a life without him present. Without his impish smile when he does something sinister. Without his advice, his words. He is the ultimate “Josh Whisperer.” (That’s me by the way. I’m josh.)
I just have to keep reminding myself that we’re not there yet. It hasn’t happened.
Today is my husband’s birthday. As one does with a anniversary of life you tend to reflect back on everything. It’s almost like climbing yet another peak and looking back to see where you’ve come from. For me, I’m more excited that I get to spend one more with him.
For the occasion I have added songs by Chris Stapleton. He’s been Charlie’s favorite singer/songwriters the last few years. For Christmas last year (or maybe for his birthday) I bought him tickets to see him in Denver, Colorado. The idea was to turn the whole thing into a fun road trip that would ultimately end with the concert. That, however, was ruined by my mother losing her ability to swallow and Chris Stapleton getting Covid prior to the show date. The journey ended up being a bust even though it was fun until it wasn’t.
My plan for this holiday I intend on buying him tickets, again, to see Chris Stapleton, but the bitch of the situation is all the ADA seats are sold out. Really? There are THAT MANY handicap people in the world? Odd… I don’t see very many people in wheelchairs. (That is an ignorant statement, by the way.) Stranger enough is that they all decided to convene at this one concert in Arizona. Sorry, I’m turning this into a rant and I don’t mean it to. The way people abuse the ADA options is mindbogglingly infuriating.
I chose Chris for the above reason (obvs) but also because these songs always make me think of my husband. At one time, before we knew his ALS diagnosis, we would frequent a bar downtown. I would inevitably commandeer the jukebox, playing all the mellow shit I wanted. I am not one to wait, and I will pay top dollar not to listen to some dumb song someone think “slaps” and kill my vibe. Every time I would play “Tennessee Whiskey” first and then, a couple others for variety, “Traveller.” When it would come on the speakers, my husband would gasp and look at me.
“Did you put this on?” he would ask.
“Of course, Punkin.”
The song below… I included it because it was one he “dedicated” to me. It makes me cry every time I listen to it. I would have put it at the top but, it hits entirely too hard. It’s also extremely depressing. Birthdays are meant to be fun! However, I would be remiss to not take this opportunity to share that one with you as well. The sentiment behind it is beautiful.
I really hate that I don’t remember the first time we got to celebrate his birthday together. I’m sure I did something shmaltzy as a gift and then ended up having sex, because aren’t I really the gift? I know I didn’t take him out to eat because I was a jobless, high school senior at the time.
I have tried every year since to make my gift better than the one before. Primarily because he always does so much for mine. However, I’m running out of options at this point. Next year I’m going to have to find a cure for ALS.
What makes everything even more difficult is my husband’s distaste for his own birthday. I think it stems from the stress he felt for his mother, doing it for him, alone, in his youth. It goes the same for Christmas. This time of year is always so stressful for him. He’s not one to celebrate. It wasn’t until he owned his own construction company and was doing well, financially, that he got into the Christmas spirit.
I had wanted to do another big birthday event like we had last year, but he wasn’t up for it. As he progresses he has found that people tend to spend more time talking and paying attention to him. He doesn’t like it. He’s never liked it. But with the fact that his speech has gotten to a point where people have a hard time understanding him it makes it even worse.
Tonight will be a small affair. Just dinner from one of his favorite places with our little polycule and his family.
I just wish I could think of something better than cookies and candies for his gift…
The poetry that happens in life is chilling sometimes. This song is one of those moments for me. It is absolutely beautiful, and the lyrics are… I will post the English translation below.
After my husband had his weight-loss surgery, he was invigorated to better himself physically. He started putting effort into the way he dressed, skin care routine, and even started to go to the gym daily. In that vein my husband had gotten it in his head that he wanted a facelift. He longed for a more prominent jawline and chin. He has a little one but mostly his face goes right to neck. This is a physical trait that runs in his family. His grandmother and aunt have this facial feature. As with most things he becomes obsessed with, he did his thorough research to find a place that could and would do the surgery at a low cost but with optimum results. That search brought him to a surgeon in Tijuana who was highly awarded and recommended.
After a photographic consultation, he scheduled his appointment and paid a deposit to hold his spot.
Then Covid happened.
He was forced to stop going to the gym and his surgery date was pushed out 6 months to allow the global pandemic to get under control. Oh, how optimistic we all were.
During that time I worked from home and he met and brought Tony into the fold. Overall pretty good times.
The day of his surgery we drove down to Mexico. The entire time, both of us had this overwhelming sense of dread. It draped over me like a cold, wet blanket. My stomach was a tight, softball ball sized knot. I couldn’t shake the feeling, and it only got worse as the day went on. At the time, I chocked it up to me being nervous about dropping him off at the hospital and crossing back over the border on my own. I’m sure I would have messed it up or been kidnapped. I mean, I’m so abductable.
Then there was the moment when he tripped on the cobblestone sidewalk and slammed, chest first, into the path. I could barely pick him up. At the time, whenever he fell it just freaked me out and filled me with so much anxiety. (It still does.) Luckily he fell right outside a farmacia, so we purchased some stuff to clean up the few scrapes he acquired in the fall.
After that, we went to his appointment and then immediately checked into our hotel. Covid restrictions were in effect, and I just remember walking through a mat SOAKED in sanitizer. I also remember, as we were dining in the hotel café, I made one cough, neglected to cover my mouth, and one of the servers looked at me with wide eyes and terror. What little Spanish I know does not include: “Don’t worry, I don’t have Covid. I’m not going to infect you.”
After dinner we returned to our room and were relaxing on the bed while watching whatever English television program I could find. For the life of me I don’t remember what it was. All I know was I was settling.
Charlie sat back perusing his phone and it is then that he perks up and says, “They updated my patient portal.”
“It says I have motoneuron disease.”
“What’s that?” I said, and grabbed my phone.
As I read the description provided by my google search results, every ounce of warmth drained from my body.
In a panic Charlie attempted to call the doctor, but got only his voicemail. It was 9 P.M. so it makes sense why he wouldn’t. So he shot him an email.
The two of us poured over more websites. I texted Josh and gave him the news. He read all he could.
“I hope this isn’t true,” he texted at some point.
The two of us started to cry. I snuggled up next to Charlie and held him as tight as I could. At one point, in a weird knee-jerk reaction, I ripped off my and his shirts and held him against my chest. In my death and dying class I had learned that skin-to-skin contact is the best way to heal emotional pain.
“I just want to go home,” he croaked out.
“Me too,” I had said.
We packed back up what little we had pulled from our bags and checked out. The front desk was confused but obliged. They ordered us a taxi and we waited out in the parking lot.
When we got into the car this song started. Through the entire length of our journey back to the border it played, setting the most somber note in the backseat. Neither one of us spoke. I couldn’t bring myself to say anything or even think. I knew if I put too much focus into it I would breakdown and I wasn’t about to be another statistic of some bitch sobbing in the backseat of a cab.
We crossed back over the border and hoofed it to the car in record time.
On the drive home, my husband made unnecessarily cruel calls to his sister and mother telling them his diagnosis. He delivered the news without any delicacy or social finesse. Neither of them broke down on the line, but we were later informed that both were devastated.
I drove the entire 4 hour drive home in about 3. When we got to our house we fixed ourselves some cocktails and hopped into the hot tub. We spent the rest of the night listening to music and getting unbelievably hammered.
The next night as Charlie and I sat alone in the hot tub, he looked me dead in the eye. Tears were running down his cheeks, his eyes red, as he implored me, “When the time comes, promise me you will help me go. When I’m ready.”
My throat tightened, along with my face muscles, as I hesitantly nodded my head.
When you were together with me, That light was celestial. What more could I ask for? I found the happiness.
Without notice, we left our paradise, and now your memory makes a shadow to my heart.
Today marks the month that you still don’t see me. You went, nothing more, You gave up on loving me, Oh, and how you hurt!
While I think on you, And in that I lost it, I would like to avoid To see me allowed me to love you, For to lose you, And you hurt me, Oh, how you hurt!
The bumps on the skin, They leave marks and after they leave. They go, they go, they go, But you broke me in two, And I can’t find repair.
Without notice, we left our paradise, And now your memory makes a shadow to my heart.
Today marks the month that you still don’t see me. You went, nothing more, You gave up on loving me, Oh, and how you hurt!
While I think on you, And in that I lost it, I would like to avoid To see me allowed me to love you, For to lose you, And you hurt me, Oh, how you hurt!
Go to be free and to be happy. Already give the same here. With me is someone I knew, It is a stranger and the pain let go.
Today marks the month that you still don’t see me. You went, nothing more, You gave up on loving me, And you hurt me, you hurt, you hurt.
While I think on you and in that I lost it, I would like to avoid To see me allowed me to love you, And you don’t know how you hurt, You hurt, You hurt, You hurt me, How you hurt! https://lyricstranslate.com/en/dueles-hurt.html
The Journal of a Jaded Josh 