Last week I wrote about being sad, and I got some great responses from people who could empathize and sympathize. My favorites were the people who assured me that their kids are diabolical candy sneaks, which absolutely made me feel better because it’s nice to know that some things are near universal. So today I thought I would write about something else that is pretty universal, and that is the difficulty of being married to another human person. Rob and I have all the normal arguments that you might expect from a couple who has been together for 11 years. But we also have the arguments that stem from ALS and the way that it has thoroughly changed our dynamic.
Take teeth brushing for example. This simple act can start a war in our house. I want Rob to understand that the backs of my teeth need to be brushed. He claims he does understand that, and insists that he brushed them. But he didn’t. And so here we are, me not wanting my teeth brushed by someone else, him not wanting to brush someone else’s teeth. And both of us annoyed with each other, because yet again it didn’t go well. I can see his point. He is not the kind of person who enjoys being criticized when he’s trying to help. Is anyone that kind of person? I still want clean teeth. We are at an impasse, and so we begin hurling our strongest ammunition, going in for the kill.
Rob calls me a Dementor, the soul sucking happiness destroyers from the Harry Potter series. I give him points for creativity, but I am sort of extra annoyed because he knows that I consider myself more of a Professor McGonagall type. I then say something along the lines of “I would be so much better at this than you are, that they would give me an award.” This makes zero sense, but that doesn’t stop me. He responds with a threat to stop helping me unless I quit talking, and so I start calling him “Sir” just to irritate him. After that, I try to see if I actually can suck out his soul from the other side of the room, but he puts on his headphones to watch a football game, so I can’t really tell if it’s working.
I think of the writer AJ Jacobs, who I happen to be friends with on Facebook, because apparently AJ Jacobs liberally accepts friend requests, either that or he thought I was someone else. He is a deeply weird and very funny writer, who is proud of his knowledge of coriander because it totally came in handy this one time. AJ (I can call him that because we’re friends) once wrote that he loves his wife 90% of the time and hates her the other 10% of the time. This is a man who has made lists of reasons he is angry with his wife so that later when he needs to throw them in her face, he hasn’t forgotten them. I know that this is probably not couples therapy approved, but it’s kind of hilarious. I mean, what’s a person to do if they want to stay mad, but they just don’t have a very good memory?
So I try not to judge us for the awful things we sometimes say to each other (and no, this post didn’t scratch the surface.) I happen to know we’re not alone, which is one of the things that empowered me to write this post. I check in frequently with other friends of mine who are dealing with ALS, and it turns out that frustrated spouses say a lot of nasty things to each other when they are stressed out. I think it would be easy to look at Rob and think that he shouldn’t be allowed to vent his anger in this way, because I’m the one who is sick, but the truth is that ALS has shaken him to the core. I’m not the only one experiencing this, and I shouldn’t be the only one who can get angry. Of course it would be nice if we could express ourselves with more civility, but where is the fun in that?
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When I did the ALS what would you give challenge, I gave up the ability to feed myself for an entire day. My husband is a wonderful and patient man, but I told him at the end of the day that if we were ever in this situation for real we might be divorced. It is extremely difficult to have other people help you with self help skills and not do it the way you would do it. I realized that while it is not easy to love and care for someone, it is even harder for me to allow someone to provide me with care. I wish I could offer you any advice, assistance, or support. However, all I can say is that I would be extremely surprised if that kind of stress didn’t cause arguments. Oh and we have been eating way too much candy too at our house. My seven-year-old daughter also sneaks it. Although I think I have myself partly to blame because I have been eating a lot of candy since Donald Trump was elected! Thank you for continuing to be bold and honest. We need to hear your story.
And I get irritated because my husband leaves the empty hangars on the closet rack between the clean clothes. Who does that? It turns my closet into a hot mess. He doesn’t think it’s a big deal. Well, it’s a big deal and he doesn’t care at all. I can’t get my wheelchair into the closet, so I can’t fix it. Grrrrr….. Funny what becomes important when you have no control over your physical environment.
Thank you so much for your honesty, humor and insight. i started reading your blogs to learn more about ALS and because you have a young pistol for a daughter and because you are a fantastic writer. I also have cancer. Such a different disease and yet so much the same. Thanks for walking the path with me.
So I was thinking about the caregiving stuff, way before reading this. It’s a reality that I think most of us in relationships will face, albeit probably later in life. I’m a dentist and your post hit home for me. I’ve decided I rather be caregiver too. I surely could brush the backs of someones teeth the way I’d like mine brushed as well. Does he use an electric toothbrush? Can you get your daytime caregiver to brush your teeth an extra time or two throughout the day? I can honestly say that would annoy the heck out of me too-can you chew sugar free gum? And you are not a dementor, you are a human being too young to have to be going through all this! Give yourself a break and send him a YouTube video about teethbrushing. Good luck!
So so so so true!! How can I be so pissed at my husband who is HELPING ME GET ON THE TOILET? But I yell at him and he yells at me!! And then he politely asks if I’d like regular underwear or Depends…
After 21 years of marriage, this is our reality due to MS. I get so mad somedays that I dream about being able to walk again and walk right out of this marriage!
But then I remember that he could do that now and he doesn’t. Because we love each other… right?
Yes. But love and marriage is hard enough without these diseases tossed in. For real, do we get a reward? A trophy? Anything???
How relieved I am not the only one venting my frustrations out on my husband and vice Versa. I am not at the teeth cleaning stage yet , but I know when it becomes necessary I will think of you Sarah and be laughing before he can get a toothbrush in my mouth
Thank you for this post!!! I start to feel bad when we have our moments because I only ever read about people that “never complain” or caregivers that are saints. It’s good to know that being frustrated, mad, and saying things you will definitely regret later are par for the course. It’s ok to be human, even when it sucks to be human. I think I’m going to try that mind thing across the room one day. I’ll let you know if it works.
Your posts make me laugh and cry at the same time. You are such a gifted individual and have (and continue to) touched so many hearts … stay strong my friend
More insight from you to me. My love has been gone for 19 months. I loved him and he loved me. I am regretting getting pissy with him and being rough getting on that damn Trilogy mask. And not kissing him . Of course the reality is that kissing him and holding his hand at the end was painful for him. The reality was that that damn mask was hurtful for my arthritis. The reality is ALS is the most disgusting and horrible and inhumane disease in the world… xxxooo to you.
Reading this after driving home from a school tour and Kevin telling me that using my left-turn signal will help people know I want to turn left. Thanks, Kev! Just wait until tonight… I will tell him how to properly load the dishwasher
Oh, that was a great one. Usually, if I can get through a fairly sad one, I end up crying over the comments. You put everyone in a great mood. Thank you my love. N
Dear Sarah,
I am two years into my ALS bulbar onset disease. My husband who is a Vietnam veteran with PTSD has become my number one caregiver but what you mentioned ALS shaking your husband to the core was so true. We don’t seem to have the same relationship, but I’ve never been one to argue but rather suffer in silence which of course means I can be passive aggressive. His disability is very stressed related so he worries constantly that I will fall. OK I have fallen once last year. Our conflict is that he really prefers me to be completely disabled and stay in one place so he can be in control. I of course fiercely defend what little independence I have left, I can still walk a bit. But he is in constant stress about me. His only respite is a friend takes me out of the house for a while.
I always enjoy your excellent writting and deep sensitivity to our journey
This story brought back a precious memory for me. I lost my little sister Kym 11 months ago to ALS. My best friend. One day while visiting her I told her that her teeth looked “grody” (a word from childhood) She absolutely belly laughed at the description. I can still hear that laughter. I brushed her teeth really well and asked her how I did and her reply was two thumbs up. It was one of the many memories I hold close to my heart.
Control…or lack of it. I grit my teeth every time my husband corrects me, tells (notes, signs) me what to do, or frankly just gives me that “you moron” look. My control freak husband has had to learn what being out of control feels like. It doesn’t suit anyone, honey. What he has learned from this awful disease, it that people love him; and he can ask for help. Savor those little moments that you have. They outweigh the “OMG what are you doing” moments every time.
And we’ve also both been sharing a brandy alexander at bedtime lately (peg tube, baby!). It’s got lots of calories, which he needs, and the little bit of stress relief that you both need.