A DAY IN THE LIFE
Fair warning…this one isn’t going to be easy.
I titled this piece A Day in the Life, but at this point, that’s incredibly hard to define. That’s because night and day don’t really matter so much anymore. Right now, we’re not going to sleep for many hours, waking up and calling that morning. It’s just constantly battling ALS while trying to live our best life in between the awful moments.
At the moment, as I write this, I truly wonder if we’ve died and gone to Hell. Or maybe we’re in purgatory. It’s a thought that creeps in from time to time.
Our routine today is not what it was six months ago. ALS means you’re forever adapting to the changes that come, which is typically associated with a loss of function in some way.
The last few days have been indescribable. It’s hard to keep writing because Brian needs something literally every few minutes. He’s beyond miserable, and so am I. This is honestly the worst it’s ever been.
Right now, we’re dealing with a couple of issues. One is that Brian has his first bedsore ever. It’s really amazing that he hasn’t had one until now, considering that he lives in his power wheelchair, but I like to think that’s a testament to his quality care. (Pats self on the back.)
Bedsores are scary. They have to be managed so they don’t get worse. It’s terribly painful for Brian. He’s extra uncomfortable right now, and that means extra attention to ensure his body is shifting around and we’re keeping the weight off the sore as much as we can. That’s added a bit of time to his regular care lately.
The other issue that we just can’t seem to do anything about is his secretions. Typically, his trach needs suctioning hourly, maybe every couple of hours on a good day. Right now, the mucus is so thick and for some reason, it’s wanting to bubble up in Brian’s mouth.
It…just…keeps….coming. Along with the bubbles, there is a sound. Ya know how in movies when someone’s been shot or stabbed and they’ve got blood coming out of their mouth and there’s a sort of bubbly, gasping sound? It’s kind of like that. It’s hard to hear, along with seeing Brian so miserable, his mouth always full of liquid. How miserable can one person be?! (Posting with Brian’s permission.)
That mostly happens just after he’s woken up and lately, we’re just getting naps in for a couple of hours at a time. Each time we wake up, Brian needs the trach suctioned immediately and it takes a good twenty to forty minutes to get him back to ‘stable’. By the time I walk into the kitchen and take the adapter and tube apart, throw the adapter in the soaking water, come back into the living room, Brian’s trach is full and his mouth has already bubbled over again.
This is reality. This is the awfulness that comes with this disease. This is why Brian, and all PALS (People with ALS) and CALS (Caregiver for someone with ALS), are heroes. Brian endures this day after day, and yet…still smiling and not complaining. Don’t get me wrong. There are tears, but he handles it with grace and strength that I’ll ponder the rest of my days. I consider it traumatic to watch. I can help get it out of his mouth and keep him comfortable, but there’s not much I can do about the secretions.
We use Mucinex every four hours to thin the secretions and that helps, but not that much. We’ve tried many things to help dry up the secretions…Scopolamine patches, Atropine, Levsin, Robinul (Glycopyrrolate), and Nebulizer treatments. None worked as well as we hoped. The Scop patches were our go-to for a couple of years but the side effects are that Brian is sleepy and zombie-like, and he doesn’t want that. Another option is botox injections and Brian isn’t down for that. If anyone out there reading this knows of something else we might try, please email me at strengthoflove61@gmail.com.
It just dawned on me a few days ago that Brian started doing this the last time he needed his trach changed, so I’m hoping maybe a change will help. This issue is getting it done. We’re certainly not going to a hospital right now, so we’ll have to see about getting it done here at home, which has been QUITE the challenge in the past. I’ve seen it done so many times and I know I can do it, but Brian doesn’t like that idea, and I don’t take it personally.
Want to check out this series from the beginning? Click here for Ten Days of ALS – Day One
Currently, in a 24 hour period, we average something like this:
1-2 hours, morning routine (wash face, brush teeth, pee, trach care, scratch head, range of motion, coffee)
1-2 hours, trach suction
1 hour, food prep, tube feeding
1 hour, adjusting body, scratching head, pacing to wait for communication from Brian
1-3 hours, elimination
1-2 hours, foot and/or shoulders rub
Every 4 hours, Mucinex
Phone calls, emails, claims, letters, etc. for care
This does not happen every day. Some days we shorten the foot rub or something else might take longer or less time, but Brian’s needs are nonstop, that’s for sure.
I haven’t had more than a few hours of sleep in over two years. My brain is constantly in a fog, my body aches and there is a sadness in me that physically hurts my chest sometimes. Every night, after a long day, when all I want to do is just fall asleep where I am, yet I must get up and complete the hour-long routine to get Brian ready for bed. (We do try to put a cap on each day and pretend we’re “going to bed”, no matter the time. Yet, I guess that’s more of deciding today vs. yesterday?)
Once asleep it might be two hours or it might be 20 minutes before I have to get back up to suction the trach or readjust a body part that is causing Brian pain. Sleep deprivation is brutal and I can see why it’s used as a torture method.
Some days there is just no way to get anything done for me, as Brian’s care needs are so demanding. I literally walk in circles from the living room to the kitchen and back around into the living room. As awful as this is, there’s no place else I could possibly be except by his side.
I am a 24/7 caregiver. Brian’s care is on me, no matter what. It seems crazy that this can be the situation we’re in, but it is. I’ve spent hours trying to figure something out but this is how the system is setup. Sadly, our story is so common within the ALS community. Families are forced to become nurses and caregivers, as well as advocates to fight the system. All I really want to do is make Brian comfortable and fill the end of his life with happiness and fun. That is incredibly hard when you’re exhausted and don’t really have the time or energy for much else than his care.
As much as I hate to say it, being sleep deprived and enduring the grief of watching your loved one suffer, ends up impacting your mood. I’m grumpy way more than I’d like to admit and angrier than I’ve ever been. I just feel bitter about the system and sometimes humanity in general. Some days I struggle to cope and wonder what’s it all for, why would something this bad happen to people who are this good.
I’ve heard it time and time again. ALS is the ‘nice people’ disease, that everyone you meet with ALS is so nice. WTF is that, life?! Makes no sense, but…here we are. Life has a funny way of doing things. Or as others might say, “God works in mysterious ways.” More like really effed up ones.
In those darkest and lowest moments, when it feels as though I’ll never sleep again, I have found myself literally gripping the suction machine, repeating these words in my head, “just hold on, this too shall pass, just hold on, this too shall pass…”. I clothes my eyes, breathe deep and hold on to the machine while I press on through that misery.
Please pray for us and all families dealing with this beast. The suffering behind the scenes is more than most have the energy to describe, as we’re just getting through it all and moving on. Plus, I don’t always get into all the details with people as it’s a lot for them to process, and hard to understand.
But I also feel it’s important to be real, raw, and honest, in the name of ALS Awareness. So there you have it. We focus on the positive and our smiles are bright shimmers of light as we navigate this darkness.
I’ve had to make myself slow way down the last couple of months. The things I want to do and the projects I feel like tackling just don’t matter right now. The priority is Brian’s comfort and that takes more and more time. He’s worth every second, always.
Silver lining: Um….yeah, this one was a bit of a challenge but here goes. Brian is still here. I get to spend all my time with the love of my life, and I can take pride in the fact that I’m fulfilling my wedding vows to the absolute max. I’m also pretty sure Brian and I both have a special place in Heaven, as do all PALS and CALS!
Thanks for coming along, and as always, for your love and support.
Miss the last post? Click here for Ten Days of ALS – Day Five
