GETTING THROUGH IT WITH THE THREE Gs
Grief, Guilt, and Guts
The days are beyond mundane, yet there is never a dull moment. I prefer a routine yet Brian is fine with whatever. Sometimes I think that it would be great if we had a set routine every day, yet I also know that’s not really possible. It might make things easier in some ways, yet ALS is more about adapting to what it throws at you, and each day is different, as discussed in the previous post.
Some days Brian is settled and stable and comfortable and he’ll work on a project for hours at once, needing very little attention or adjustments. Other days his secretions are in overdrive and he just can’t get comfortable. His trach will need suctioning several times per hour and the drool is nonstop. By the time I wipe his mouth and back away from him, the saliva has already pooled back up in his mouth and is running out of it and down his chin.
The Grief
Watching someone you love endure such a beast is heartbreaking anguish.
The pain is always there, though as with most grief, it comes and goes. A lot of the time I’m laughing and acting goofy. Every now and then the grief is debilitating. There have been a few days I’ve woken up crying and ended up going to sleep crying.
I grieve for what has been lost, for both of us. For the shared dreams and the plans and the trips that won’t be.
I grieve as I watch Brian endure another day of ALS. Drooling and gagging and tube feeding and being trapped in his body while his mind stays sharp, able to do nothing but think.
I grieve for the pain that is coming and I think about how the end will go. I can’t help it, it’s human nature. I know Brian thinks about it too. I think about how that feels for him and it makes me so sad.
I think about how after years of hearing machines and beeps and hums, about how deafening the silence will be when he’s gone. About how I’ll be left with amazing memories of a life well-lived, but also with the guilt of all the things I could have done better and the patience I should have displayed in the hard moments.
Most of all I know I will be left with a gaping hole in my very being. A black void that will always be there, tearing at my heart until the day I die. I know I will carry on, but I also know the pain will be greater than I can imagine at this moment.
Don’t misunderstand. It’s not like I spend all day crying and grieving. I’ve learned to live ‘with’ it in my life. It sort of just rides alongside me on the journey. Every now and then there are days where I spend more time crying in a ball in the corner of my closet than I’d like to admit, but that’s okay. I get it out, scream at the Universe, (and maybe sometimes tell it to kindly go f*ck itself), that it didn’t have to give ALS to someone so good, so kind.
ALS doesn’t allow me to wallow in it all day or even twenty minutes. Brian’s care needs must be met all day, every day, no matter how I’m feeling.
So I pick myself up and get on with it. That’s life.
Want to start this series from Day One, Before ALS? Click here.
The Guilt
My days are also riddled with guilt. About so many things.
About all the things I can do that Brian can’t. When I prepare food I feel guilty that he won’t be able to enjoy the taste of it. I feel guilty for being able to walk outside whenever I want to enjoy the flowers or the sounds of nature. To get Brian outside takes time and effort, moving an entire cart out with us to ensure his safety, and so we can suction the trach if needed. Many times he says just forget it.
There is so much Brian is unable to do, and I can’t help but feel guilty about all the things I can. He doesn’t want me to feel guilty and never makes me feel that way, I just do.
I also feel guilty for not being patient at times. The worst time is in the wee hours of the morning. I yell and throw things and make it harder than it needs to be. Night after night I am forced to get up and suction the trach or reposition Brian’s arms or legs. I do get an hour or so here and there but having to get up after just a few minutes, after enduring it for years is so tough. Once I have a few minutes to clear the cobwebs out of my brain I’m okay but it’s tough to make my body get up when all it wants is sleep. But let’s be real. Mothers of many little ones have done this for years. In many ways, it’s just life.
Guilt also comes with the thoughts that cross my mind. The ones where I just pack a little suitcase, jump in the van, drive away, and never look back. The ones where I feel resentment toward Brian, though he is sick through no fault of his own. The ones where I pray for death just so I can have a break! (I’m not suicidal, just tired, and I’ve read about these thoughts on many caregiver forums.) There are just a lot of thoughts that swirl around, especially for an overthinker like me. They come with guilt.
 Though I’ve given up so much and I’m still here doing the hard work, I could always do better, be more patient, etc. and that leaves me feeling guilty. Sometimes after ranting to Brian for minutes about how I couldn’t do something or when I complain about something trivial, I just look at him and think to myself, “What am I doing? Why am I talking about this to someone completely paralyzed with no voice?” Guilt!
The grief rides beside me and the guilt follows me around like a dark cloud over my head.
GUTS
And finally…guts. This shit is HARD and it takes guts to get up every day and continue to do it. No matter how sleep deprived or sad or sick I feel, the show must go on and Brian relies on me for literally everything.
It also takes guts to continue to fight a system that couldn’t really care less about you. To advocate for your PALS (person with ALS), to file claims and dispute charges, to spend your free time on the phone or writing letters. It’s utterly exhausting, with no end in sight. So yes, guts get me through the days as well.
Now, before I get to the silver lining, I want to say this. I write from my perspective, which is the caregiver perspective, as that’s who I am. A lot of my feelings about a lot of things are certainly shared by Brian, but a lot are not.
As I wrote this post, I considered each of the three G’s and I have no doubt that Brian could write his own post about how he copes with them.
He too grieves for what he’s lost and all that could have been. He tells me how guilty he feels for being such a burden, and for this making our lives so incredibly har. But he is certainly the one with real GUTS to face ALS each day with such a positive attitude and a smile. It’s truly amazing and utterly inspiring. He is and forever will be, my hero and inspiration.
Though the days are long and hard, we still love and laugh and live each day with as much positivity as we can. We are lucky to have each other to help us through this.
Silver lining: I’ve learned so much on this journey. I’ve seen how weak and selfish I can be, but above all, I also realize just how strong I am. Stronger than I ever thought I could be, and I know I am up for any challenge. I have confidence in my abilities as a caregiver and patient advocate, as well as a damn fine spouse who has stayed when the going got tough, and I’m still here.
Though I am far from perfect and each day has its failures, I’m still here and I’m still trying and I’m very proud of myself for that. I have no doubt that a lot of caregivers out there, as well as those who rely on them, could say the same, and for that, I’m proud of all of us.💪💓✌
