Fuck ALS.
I know you might not like “the F word”. Cursing makes you uncomfortable. It’s not necessary. I get that. I understand that cursing isn’t something that has to be done.
That being said, FUCK ALS!
The F word is the only one that will do when it comes to A.L.Fucking S.
Amyotrophic lateral sclerosis.
We are now in year ten of Brian having ALS. This is the third year that I’m his constant caregiver. Before that, I somehow managed a full-time job for seven years while caring for him at night. We’re on an ALS island. There are many other people on this island as well, though sadly it’s an ever-revolving door of faces. The disease is often swift, claiming lives within a few years, sometimes months.
Day after day I endure the heartbreak of watching the love of my life suffer an awful fate while we navigate a cold and callous healthcare system, full of overworked people who are just as fed up with the system as we are. Some who can’t seem to find an ounce of compassion for Brian or our situation even though they’ve spent time with us in our home. Those are the people that kill me. The ones that actually see our situation and then act cold to Brian’s face. Or when people talk to me like Brian’s not in the room. Grrr to the rrrrr!
Sadly, many of those who do get it are those who are in the same boat as us and can’t really do much to help except offer the spot-on emotional support you didn’t know you needed until you connected with them.
Brian lost faith in the system a long time ago. I keep holding on to the hope that there is an agency out there that can fill all our needs, but I just don’t think so.
We’ve tried home care, hospice, palliative, and chronic care agencies. They’re basically the same. Each and every one of them has been a disappointment. They’ve all been fired for one reason or another. We were dropped from the last one as we didn’t really fit their care model.
It’s not all their fault. These home care agencies think they can handle ALS but their knowledge and experience are so limited that we usually end up knowing more than anyone we come in contact with, and they don’t like that for some reason. To me, it feels like that raises their liability red flags.
So many people in the medical community show such little compassion for our situation. Get this. If Brian has an issue with his power wheelchair it could be up to two weeks before someone could get out here to fix it. Even if it has completely died.
He lives in the chair. I understand there are other patients that need chair repairs but there is no priority for Brian who is completely paralyzed and lives in his chair. Okay, fine, that’s life, but the attitude you get from people when asking about faster service. It makes me so frustrated and angry.
I’ve been a Customer Service Rep in the past. I loved the job. I found much joy in resolving a customer’s issue. That is not the mentality of the majority of people I deal with when it comes to Brian’s care. While I loved that job, I also know it can be frustrating being on that end too, but I’ve got my shit together, I know what I’m doing. I’ve got my account number ready or whatever, you know? I try and make their jobs easy but people can be so rude and cold.
You should hear the conversations that take place over feeding tube supplies, wheelchair repairs, nurse shifts, etc. It never ends. Stuff like this…they want you to enroll for auto pay for feeding tube supplies yet you still have to call every month to place the supply order. And don’t ask why the co-pay is more than last month. That’s just opening up a whole can of worms and will add more calls and stress to your life. UGH!!
Sometimes I just stop and try to ‘school’ the person on ALS. My trigger is when I start getting prickly and someone says, “I understand,” or “I get it.” Oh, you get it? Do you now?!?!
To that, I usually take a long pause before I ask, “Do you know what ALS is? Have you ever seen it up close?” And when they say no, because they’ve always said no, I proceed to tell them that my husband is completely and literally trapped in his body and can only move his eyes. That I had to quit my job to care for him 24/7 and that we don’t leave the house but that he’s amazing, yada, yada, yada.
We can’t hold hands. We can’t talk. We can’t hug. We don’t go out. We can’t … fill in the blank. Brian is my husband, my best friend, my other half and he is dying ever so slowly in front of me.
It doesn’t register with people. We’re just not listening to each other and if we are, it’s because we know pain and that’s why. Something like that, anyway. Where was I going with this? 🤣
Oh yeah. None of this is okay. How did we get here? How is this possible? I’m so sleep deprived that it should be illegal. Brian is currently under no specific doctor’s care and we’re back to figuring out how to get his trach changes done at home. I could totally do it but that scares him, as it should.
People often ask, “What are you expected to do?” That’s a great question! Remember, we’re on an ALS island and other families are dealing with the exact same, terrible thing. Little choices, patching together care however they can.
It would be so great if there was one person at Medicare who was Brian’s caseworker. Someone who could recommend agencies in our area that could handle ALS. Someone who could keep records of things for us, that could be an advocate for us.
That is incredibly wishful thinking! A call to Medicare is like a call to any other government agency. Twenty minutes of holding, then getting the run around from humans. I swear some people act stupid just so they don’t have to work or think to solve a problem. Frustrating!
I’m on duty 24/7 and even my days off aren’t really days off. Brian will only let me do certain things and that’s just how it’s going to be. When I leave him with a nurse I can absolutely get some relief, yet as soon as I’m back on duty it’s right back to all the caregiving things.
Our families can only help so much. Brian’s parents just can’t seem to understand how humiliating it is for him to let them do certain things and that is incredibly frustrating for Brian. At this point, he just wants to visit with them but his mom can’t let go of trying to be a nurse. We don’t blame her but we’ve asked her to please stop and she doesn’t. That’s moms for you. So that puts a strain on his relationship with them.
My parents aren’t in a position to assist in any way either. Plus, both of our parents are getting older. It’s the time of life where we should be taking care of them and that’s just not possible like it would be if we were both able.
Just getting through a day with ALS is daunting enough. There’s not much our parents can do. They can sit with Brian but that’s about it. I’m still very much on duty and we both prefer it that way anyway. It’s just the way it is. We worry about them driving over three hours to get here, then having them stay overnight makes it even more daunting, putting a strain on me and Brian.
Speaking of the strain on me and Brian, it is a true challenge to keep the spark alive. I am absolutely and utterly exhausted. I’m beyond disappointed in a system that I was taught to believe in growing up. I don’t expect the system to be there to care for Brian all the time, but at least as a crutch, and that is just not reality. If an agency will take a patient that’s on a ventilator, they don’t have a lot of staff trained on it, and even still, the staff has such limited knowledge of ALS that it’s scary to leave Brian with some people. Over and over it goes.
I get pissed off. This is so wrong on so many levels. Brian remains more positive than me. I think some of that has to do with the fact that I have to make the calls and deal with the people. I’m the one doing the physical labor of caregiving while also being sleep deprived to a degree in which I understand it being used as a torture method. 😫
We shouldn’t have to be worried about going bankrupt because Brian got sick. In no Universe would Brian choose ALS. It’s a cruel and merciless disease. We both worked and paid into a system that is a facade of coverage for those who are healthy. Get yourself into a position of truly needing some assistance and you could find yourself just like this.
Not only that but there are treatments that show promise and the FDA will not move on allowing them to be tried due to some red tape bullshit while people die year after year with ALS. It feels like this should be a national emergency but considering ALS patients are such a small percentage of the population, it doesn’t get the attention/funding/research/support it needs. What in the fuck, y’all?!
Don’t get mixed up, you’re living in this world too, I see that. We’re all facing the same crap, just in different ways. What I can’t figure out is why we’ve done this to ourselves as humans.
A lot of what I encounter as I deal with Brian’s care just blows my mind. He has ALS. Documented ALS. No question, ALS. If you know anything about ALS you know it is horrific. One of the worst diseases ever known.
And yet, no signs of urgency. Little compassion for what people are having to endure, all the while paying in to and believing in a system that fails us time and time again. None of this is fucking okay!!!! We will continue to spread awareness, write letters, help other families and do whatever we can while maintaining a balance to ensure Brian’s happiness. Easier said than done but he wants to be living with ALS and not just dying from it.
Even though it’s not okay I know it’s going to be okay. Luckily, I am married to a superhero.
Not to blow his cover but Brian is an absolute badass, you guys. His attitude has helped get him this far. That, along with my love and care for him. And his love has helped get me this far. We do our best to stay positive and post positive things but rest assured, there are days that are beyond hellacious for him, and watching such a kind soul suffer in such a cruel way is cruel in itself and causes great pain.
Still, my love for Brian is unconditional. I will be by his side as long as possible and will continue to fight for what is right for him, though it’s hard for us both to understand why it has to be such a fight. We grew up believing in insurance and somehow just thought there would be ‘more’ to what we’ve paid into all these years, yet we feel so alone and so invisible in the face of such a beast.
There’s just so much about ALS that is not OK. At the same time, there is a certain kind of beauty to life that I see even more than I did before those three letters came into our life. As awful as people have been on this journey, people are the very same reason we’ve both made it this far. Friends, family, strangers, people online…the strength of their love, YOUR love, has helped strengthen our love as well. That’s a beautiful thing and I am grateful beyond measure for that love and support.
While we’ve had to endure some unspeakable moments together, we’ve also evolved as a couple in a way that is hard to describe. My love for Brian only gets stronger as I witness him face each day with his sexy smile and his positive vibe. I love you, Brian Parker! You amaze and inspire me each and every day.
Still, none of this is okay. I’m sure you all would agree.
FUCK ALS!
