Keeping it real: A confession

    June 3 marks the three-and-a-half year anniversary since Kevin’s ALS diagnosis. I am so grateful we have had this time together. Occasionally when we are out and about, someone will shyly sidle up to me and say, “I cared for my husband, too.”

    “Four years,” says one.

    “Eight,” says another.

    What they are really saying is, “I see you.” And I appreciate that. It is good to be seen.

    The invisibility of most caregiving is, at times, crushing. I hesitate to write that, because I would choose anonymity over the spotlight any day, as being vulnerable makes me feel a bit sick to my stomach. But there is a tendency for people to get the wrong idea about us. They see the joy in Kevin’s smile, and the affection we have for one another. They sit across our kitchen table and sip coffee and feel the peace and gratitude that we have. And then they start to feel like we have it all together and if the lighting is just right they might be able to see the halos over our heads!

    This is the confession part. I do hope to be a saint someday, which is to say that I hope to belong, completely and unreservedly, to God. But God’s work in me is a process, whether I want it to be or not, and He is content to press me like an olive or a grape until something like oil or wine or love comes out (sorry, not really sure what metaphor I’m aiming for). Thomas Merton talks of the “inscrutable tyranny of time.” He’s talking about insomnia, but it works to describe caregiving too, I think (and probably a lot of other things that involve suffering). He says “You just lie there, inert, helpless, alone, in the dark, and let yourself be crushed by the inscrutable tyranny of time. The plank bed becomes an altar and you lie there without trying to understand any longer in what sense you can be called a sacrifice.”

    Be assured that when I smile at you over the pew or my cup of coffee, it is genuine. I enjoy good company and sunshine and laughing at my dogs. And time with Kevin, of course, gives me great joy. Most days I can settle into a reliable contentment.

    But a more complete picture of our lives would include the shadows, like the night-time routine of pills and brushing teeth and transferring into bed, which can often last an hour or more at a time when I am the most tired and sometimes in significant pain.  Despite the fact that we have a patient lift (from Kevin's infamous "Hoyer Hangin'" poem), the transfer is still a physcially demanding task.  Even getting the sling around him involves tilting the chair forward, getting one of my arms behind his back so as to not pull on his shoulders, and pushing him so that he's bending at the waist.  Next, I hold him there with my body while trying to wedge the sling down as far as I can behind him.  Then his legs need to be lifted and the sling pulled under them.  It's hard work.  And sometimes his urinary catheter leaks.

    Factor in Kevin's PBA (pseudobulbar affect, or uncontrollable laughing/crying) which worsens towards the end of the day as his medication wears off and fatigue sets in.  Sometimes, when I've neglected to do something and Kevin notices, it triggers laughter.  He's not laughing AT me and would stop if he could, but he's not really in control and PBA is a bit of jerk.  So when he starts laughing I'm not sure whether it's just a reaction to being tired or whether there is something I should know, and because we have moved the communication device out of the way for the transfer, he can't tell me.  

    He's laughing and wishing that he wasn't, and I'm frustrated and not in the mood to solve a puzzle.  All I can think about is lying down.  In these situations it doesn’t take much to elicit rage or tears (or both), and I feel like this stupid disease is breaking me. Kevin has to try to patch me up again without being able to put his arms around me.

    Most nights I get at least eight hours of sleep, thank God. But I also have a relatively new night-time bite guard that is cracked and chipped. When the dentist saw it, he glanced at my file and said, “Wait, HOW old is this thing??”

    And then in the morning and I dress Kevin and do the transfer in reverse.  He can't help me, even by lifting his arms to get them through sleeves.  Kevin's muscles have a lot of spasticity, which basically means they are tight.  I mean like really tight.  So stretching them is more than lifting limp limbs (which would be hard enough).  It's more like fighting muscles that are actively fighting back!   

    Every day I face this beastly inner voice telling me that my value stems from my function, not my identity as a beloved daughter of God. I know this is a lie, but my wounded heart doubts and pauses just long enough to entertain what feels like truth, and then there it is, taking root again in my soul, this lie that I am more caregiver than wife, and that all of the beautiful and unique parts of me are slowly disappearing, drowning in the minutia of adjust this hand, press these buttons, move that limb...

    I’d like to tell you that in the midst of scratching his nose or stretching his legs I am always gazing upon my husband and seeing in him the face of Christ. That has happened, it is true, and they are beautiful moments. But all too often my bored and exhausted brain, in an attempt to avoid unanswered questions (Am I doing enough for my kids? Did I put the garage door down??) turns to obsessing about issues of efficiency. Like, if I press and hold THIS button first and then press THIS button the bed will both sit and raise at the same time, but any other combination just makes the remote stop working. Or, if I stretch his ankles first and THEN carry out the catheter bag and humidifier reservoir to empty, I can then bring back the wheelchair on the return trip rather than making another….

    Save me from myself! I can’t stand my own internal dialogue half the time.

    Here’s another thing. Kevin and I entered into this season of our lives nursing wounds and insecurities from previous seasons, most of which I’ll not go into here, as I have my own therapist for that. But ALS (or “Al,” as I think you know we call this third-party character in our marriage), has a way of seeking out those very tender places in my heart in order to really stick it to me. As an example (and I’ve shared this with Kevin, so I’m not creating any surprise drama here), I spent years conversing with Kevin over the top of a computer screen. When he wasn’t working, it was his favorite way to play, and I often could not tell the difference.

    Is he home from work? Is he not?? Always with the laptop on the couch, typing away, lots of computer code and a screen between us....

    In my insecurity I viewed it as a competition for his attention and I felt I was always coming up short.  After his diagnosis, in the shockwaves that followed, the technology disappeared for a while. But alas, the devices came back and multiplied, like so many Hydra heads. And here’s the irony—we need them. If those devices were an obstacle to conversation before, they are now quite literally essential to any real conversation. And moreover, they are a lifeline for Kevin, connecting him to the world, bringing him back to himself and the utilization of all his gifts, which give him joy and purpose. It’s wonderful, of course, but—the dang screen again! He types away with his eyeballs and I sigh as I imagine “Al” giving me the finger.

    It is difficult to find outside help. Most agencies are hit-or-miss in terms of how comfortable they are with ALS patients. One agency came highly recommended from an acquaintance who knew the owner. They came out to the house and did a full assessment, and then decided that they needed to hire someone new in order to meet our needs. That was over a year ago and we haven’t heard back from them.

    If agencies are understaffed and conservative with regard to the cases they will accept, I am equally cautious about who I want to entrust with Kevin’s care. Is an agency capable of treating him with the same love and care that I do?  (And how could they possibly know how to press the buttons on the bed remote in the most efficient combination??)

    Take bathroom time, for example.  I'll spare you the details except to say that this isn't really what either of us pictured we would be doing in "retirement."  Still, I don't want to pawn this task off on anybody else.  I'm the one Kevin trusts to protect his dignity; I'm the one he's not embarrassed around.  From the outset I aimed to make this part of daily life "no big deal."  I figure there are a limited number of worries my mind can handle at any given time and I flat-out refuse to give poo a seat on that crazy train.

    This post isn't meant to be a cry for help (we are truly grateful for all the rides and food and errand-running that so many people are providing).  Neither am I seeking pity or even a response, really. Just wanted to say that if you ask us how we’re doing, yes, we’re doing okay over here. But please don’t place us up on a pedestal and forget about us. Because we’re also struggling and need your prayers. (And I’m afraid of heights.) Every day is a battle to choose hope. Sometimes I’m like, look at me rocking this hope thing! And other times I’m like, how many bubble baths can a person justify in one day?