ALS

October 6, 2021

Adventures in Adult Babysitting

When I was around the age of 14/15 I made a promise to my mom that I wouldn’t put her into a home. It was the same agreement she had made to her mother, my grandmother. And I wanted so much to keep the tradition alive. Then life became exceedingly complex.

Two weeks before I signed the papers for her to become a resident, she had fallen. It was the third time she had that month, and after the second fall where I had explained if she didn’t use a walker to get around and fell (again) she would move in with me. She flat out refused to use any kind of assistance device and because of it she fell, in the same bathroom my father had fallen in (for his third time that week) and hit his head, causing brain damage and his ultimate death. Every detail of that moment came flooding to my memory. I was livid. So, I sent my husband and brother-husband over to her house, help her up, and take her to our house.

For two weeks I came to a very harsh reality, that she was far worse than I had previously assumed. She can’t use eating utensils, she repeatedly has “accidents,” she can’t bathe herself and can’t even dress herself without assistance. The two weeks that she stayed with us, I had to do all of these things for her. Once they were done she would sit, happy as a clam, in her recliner watching movies. Had she been the only one I was responsible for, I probably would have trudged on to make it work, but that’s not the reality. I also have my husband.

For those who don’t know, my husband has ALS. He was diagnosed a year ago. As it is now, he can do very little for himself. He can still walk and stand, but he requires someone to assist him every time. While my mother was there I hardly got a chance to sit, which is fine, but it was not sustainable. And It was putting a lot of expectation and responsibility on the brother-husband. He may have signed up for my husband, but not some random lady he had only met (maybe) three times prior.

As much as I didn’t want to break my promise, I had to. And even though I have been told, repeatedly, that it was the right decision, all I can focus on is the fact that I did. I am no longer a man of my word. And I hate that.

To get out of that mindset, I sat down and tried to pick out why making such a strong, blanket promise like that is ridiculous. When I made it, I had no concept of adult responsibilities. I was working off the example my grandmother had set, while she lived with us. She was basically my third parent. She did housework, she watched me, she actively contributed. Because of her, I felt confident in agreeing to never commit my mother to assisted living. What I failed to take into account was life. Life is unpredictable and it’s main goal is to try and crush you and those around you. I know that sounds aggressive but when you really think about it, it’s true. Life isn’t a cake walk. It is a series of obstacles we must learn from to continue on to the next set. There is no rest. My mother’s Alzheimer’s is that obstacle. My husband’s ALS is another. I have learned and now we must move on.

On Monday, a month before my birthday, and four days after her own, I dropped her off in a memory care home. The weekend prior, I made every effort to make certain it wasn’t a surprise for her. I wanted her to be aware of the change that was about to occur. But I either failed miserably in explaining it, or she just didn’t understand. Regardless, when the day arrived she was distraught and terrified. There was no escaping the tsunami of guilt that “I just sprung this on her” and abandoned her at her most vulnerable.

The one thing I have learned from my mother’s diagnosis is that, if I ever have kids, I will make sure they know, without a doubt, that if pop-pop goes a little loopy that they should not HESITATE to put me somewhere safe. Even if I ramble on about not wanting to leave my home, I (at my absolute core) do not want them to waste a second debating what I would or wouldn’t want. If I have enough sense in me, in my older years, I will just move in on my own, like my grandmother-in-law.

I know that this is the right thing, and at times I feel it. But getting my heart to understand is something else entirely.

August 30, 2021

Saying What Has Been Said Before

As of last Thursday, it has been a year since my husband was officially diagnosed with ALS.

As one does, we look back over the journey to see the differences from then to now. What I really want to do is to write this sparkling and profound story with few defeats and many triumphs but I have nothing. In addition to that, I get so caught up into trying to be inspiring that my voice gets lost in the words. What I end up writing feels forced. It feels disingenuous, which is not my goal. Ultimately, it’s not me. I write with my heart on my sleeve, with all my cards laid out for all to see. It’s the only way to be. Trying to keep out the failures and the sadness is a detriment to myself, and no one else.

The reality has put a lot of things into focus, that for so long had been fuzzy. I have suffered most with deciding if my husband was truly “the one.” I always came up with so many excuses to say we weren’t: I was too young; I wasn’t ready. All of this bullshit. I didn’t trust my gut, because it has been wrong before. So instead of enjoying what I have in front of me, I him-and-hawed trying to feel out if it was the right decision. There is no “right” answer. Ever. We just choose a path and learn. Attempting to go back and try another is pointless. There is only forward.

It’s funny, to me, saying all of that because it is the same bullshit that has been told to us over and over again. We just never let it sink because we refuse to listen. We refuse to understand. “There’s always a chance.” Maybe, but maybe not. It’s better to treat life as a “one and done” deal. Thinking that we can get back to reach what we lost is a farce we repeatedly tell ourselves to lull our mind into a false sense of security. “There’s always another chance.” Nope. We only have now.

The beauty of that belief has done some amazing things for our lives. We bought a new house. We moved. We have journeyed across the country, twice. We have seen and done things neither of us thought we could or would do. Yeah, Covid and his disability has made it more difficult, but all of those minor setbacks have paled in comparison to what we’ve experienced.

The only thing that can be truly measured, is the loss of my husband’s independence. He has to rely on me or my brother-husband to eat, to go to the bathroom, to stand without falling. His arms and hands are very nearly worthless from what he used to do. Using a cellphone is near impossible. Thank the geniuses at apple for the voice control features. Without it he wouldn’t even be able to peruse Facebook, text, or make phone calls. Technology is a bane on society, but also a fantastic tool to give one the illusion of normalcy.

I do wish there was something I could add, but there is nothing that I can say that would be any different than from the hundreds of voices before my own.

I will just reiterate that time is precious. Live in the now and don’t hesitate, for even a second. This moment is the only one you truly have. Make it worthwhile. A life of experiences is worth more than any amount of money saved.

June 10, 2021

Plan to not have one

It would figure that the day I sat down and actually mapped out our upcoming road trip that my template would get tossed aside. It’s the irony of my life. However, while it is irritating it is for the better.

We have been anticipating this road trip to Nashville since March. (Maybe even February, that whole memory thing though.) Initially, I had outlined a road map with one route but that got set aside because the husband wants to do two. And when the boyfriend joins us, mid-way through, he didn’t want to do the “southern” route. To be frank, I don’t want to do that one either. It’s all Texas. No offense to Texas, but the lone star state in mid-summer… hard pass.

So it was decided that we would do the southern route to Nashville first. That way we could make a stop-off in Dallas to visit the brother-huband’s close aunt. Now, that isn’t even happening.

The husband opined that there was a reason we were dragging our feet. We knew subconciously that it was going to change. That may be true, but I chock it up to us being lackadaisical about any sort of planning and preperation. Charlie just flies by the seat of his pants. I need (at least) an outline. I used to be one that needed a specific plan, one in which we stick strictly to and do not deviate from. That type of mentality does not mesh well with my husband’s typical approach to anything. It’s probably the reason we had such a hard go in those early years. I was trying to force him to do it my way and ended up frustrated at him when he didn’t.

I have since adapted. My husband and general life has taught me that plans are a joke. They typically never work out, and usually the bright spots are ones you cannot plan.

We’re still going on this trip it has just been bumped.

The reason it was moved is that we need to be in Los Angeles for the first dose of the ALS trial drug a week after we were scheduled to set out. I really wish they could have given him the first dose on Tuesday, but they needed to get him vaccinated for meningitis. There is a high risk he could contract it while on the trial drug. He already has ALS, let’s not add to the list.

Plus, it works out that I get to be there to see how to go about doing the injections. This way they can show me and the brother-husband how to do the injections and give us the medication we need going forward. (Side note: I fu-hucking hate needles.)

I wish I could remember the name of the one he’s taking, but (again) I was in two places at once on Tuesday and didn’t pay any attention. What I do know is that the potential of this drug (if he’s in the 75% who get the real medication) is will slow the progression and has a possibility of reversing some of the side effects of ALS. While I hope with every fiber of my being that it can undo some of it, I am not naive. In these situations it’s best to be realistic. Hope for the best, plan for the worst.

March 22, 2021

The Struggle to Breathe

We are nowhere near the time that my husband has left me. That moment sits as a tiny spec on the horizon of my timeline, but, as with time, we march ever toward it. And knowing that it’s there, rots me from the inside.

My grief of the situation comes and goes. I have gotten to a place where I can handle it when it does exist in my headspace. Those are the days I ugly cry in my car, hoping no one in the vehicle next to me happens to look over. I am very unattractive when I cry. I literally struggle to breathe, as if every breath becomes thinner and thinner and I am just gasping at air. The only other time I have experienced such tears was the time my husband and I had a brief separation.

Before we became polyamorous we basically just cheated on each other. Our relationship had turned into lies and secrets and neither one of us had the guts to be honest. The truth came out when I downloaded Grindr to cheat. I caught his profile at the end of our street, on his way to visit his dad in Palm Springs. Over the course of his brief trip I watched his account like a hawk. I was obsessed. When he returned I was honest. We struggled with things after that, and at one point I asked him to leave. He went and stayed in a hotel for a few days, and that morning I cried much like I do now. I could barely get out of bed. If I attempted to get dressed for work, I would start to cry again and my legs would buckle out beneath me. It was one of the worst mornings of my life.

At the time I didn’t understand these tears. I have cried before but never like this. And I always questions their sincerity. Even now I wonder if they’re real, or if it’s just because I am expected to feel something. I think I’m the only person who doubts such things.

After his return to our house our relationship changed. We started to communicate and eventually the truth about his infidelity came out. Instead of being angry with him I was overcome with relief. Finally, I wasn’t the worst one in the relationship. The one who cheated on an honest, dutiful, good man. At least that was the narrative I told myself, because I had repeatedly asked him if he had. He would always tell me that he hadn’t and I would feel ever worse. When I finally got the truth it felt like I could finally breathe. A gigantic weight had been lifted from our relationship and my shoulders. Since then our bond has never been stronger. All it took was the truth, and the inability (both of us have) to give up.

It seems to track that once we finally move into a better place in our marriage he would be taken from me. Even now my eyes fill with tears. I just want to scream. I want to take a sledgehammer and destroy everything in my path until I am too weak and too tired to carry on. There are days that I literally just want to die. Losing my father, my mother dwindling due to Alzheimer’s, and my husband to ALS is just too much sometimes.

Just know, I am too much of a coward and (bizarrely at the same time) too conceited to take my own life. That being said, just know that if I were hit by a car I wouldn’t try and hold on.