death

November 15, 2023

Wallowing in my feels

The word overwhelmed does not accurately describe how I feel. If anything it drastically undercuts the reality of my situation. Every day I wake up and wonder if this morning is going to be the one where I find my husband has died in his sleep. When I see that he hasn’t, I pretend like everything is normal when it is anything but considering I have to do everything for him, on top of caring for myself and keeping everyone sheltered and cared for. Then to top all of that off because the government has decided to keep interest rates so high, I have next to no work. So there is little to no money coming in. What money I received as inheritance is now dwindling away. Leaving me with nothing.

Then come the emotions. I feel trapped in my life and I want freedom but that would mean I wish my husband’s demise. Which only makes me feel guilty and horrible for even having these thoughts cross my mind. I just want to scream.

I would never wish this on anyone. It is truly maddening. At times I feel like I am being punished for something. Like I wronged someone somewhere.

The Christian teachings of my youth say it’s god punishing me for turning my back on him. And all I can think is what kind of “loving” god punishes you for not WORSHIPPING him. Which makes this high power sound like a sociopath.

I feel like I am just an observer in my life. I’m not living. I’m surviving, making it just in the nick of time.

November 1, 2023

Twenty Years

Today is my husband’s and my 20th anniversary of being together and 10 year wedding anniversary. It’s strange to think of that length time, because it does feel like it but also like no time at all. Almost like I blinked and it was gone. You know, all that cliche bullshit. Unfortunately it’s true.

I can still remember every detail of the day we met. It started out as a failed hook-up (I say that because we didn’t have sex, we talked) and turned into what it is today. Our wedding day is equally, if not more pristine as the first memory.

I just want to cry… usually for something momentous you have a big party, go out to dinner or buy lavish gifts but I have done none of that. I will do none of that. My husband would hate every second of it. He’s gotten to a point with his disease that he’s embarrassed by his appearance. On top of that he doesn’t even eat anymore, but instead gets nourishment through “vanilla flavored” shakes that we pour into a tube. In regards to a gift… I know that even he would say “why would you get me one?”

I hate this. I hate all of it.

With ALS, no one knows the time-frame. For some it’s 3 years and for others it could be years. Stephen Hawking lived for 55 years with the disease. Before I witnessed the rapid speed at which his disease progressed I knew, without a doubt, he would make it here. To this very day.

That was 3 years ago.

This could very well be the last anniversary we spend together and… it’s going to be nothing. I’m such a fucking failure.

September 26, 2023

The waiting room

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.

August 4, 2023

Panicworks

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.