I spoke recently about some of the struggles we face while raising a profoundly cognitively impaired adult son. This morning presented me with yet another issue that was directly related to how Gavin handles things.
When we were at his gastro earlier this week, there were a few issues that came up as a result of Gavin's limited capacity and poor memory. None of these things are his fault and while they would still be frustrating at times, it's his reaction to being questioned that is really frustrating.
You can read the recent post about this appointment and the initial frustrations by clicking **here**.
It wasn't until this morning that the other complications presented themselves.
Gavin's doctor had asked about how he was doing with his Ensures. Gavin drinks one of these supplement drinks with each meal. The purpose is to help him at least maintain his weight but also gain some weight as well.
She had asked if he needed a refill. I was sure he was almost out and had a few days worth of these calorie drinks left. Gavin on the other hand, very aggressively insisted that he had a full unopened box, as well as half a box and 5 Ensures left in the refrigerator. It was oddly specific and so I thought, *maybe he was right. *
I was trying to not make a scene because Gavin had just sorta recovered from the meltdown he'd had a few minutes prior and I wasn't looking to poke the bear. I told Gavin that I think he was due for a refill but he got very irritated that I would question his memory and because it wasn't a huge deal, I dropped it. I didn't want to set him off again.
Anyway, Gavin really, really likes these shakes and if he's out because he wouldn't cooperate, maybe missing a day or so would teach him a lesson. That's the only way he really stands a chance of learning from this.
I have some major issues on my plate at the moment and my mind is not focused on Gavin's Ensures, so I forgot to check for myself yesterday and that's on me.
The moment I set foot into the kitchen this morning, I was greeted by Gavin. I was exhausted and barely standing up but he pummeled me with *I only have 3 Ensures left, so you need to order me more. *
It takes a great deal of patience to deal with Gavin on a good day and today was definitely not a good day. I was sleep deprived and running very low on patience. I told him that we're only in this situation because he wouldn't listen to me when I told him he was low while at his doctors appointment. Now we're looking at sometime next week before they can be delivered. The weekend and the upcoming holiday may cause unwanted delays.
Like I said, I was lacking patience but I wasn't a dick about it either. He was upset because he'd made a mistake and that lead to him banging his head into the wall, over and over again. I tried to calm him down by reminding that everyone makes mistakes and that no one is perfect.
It took a bit of digging deep into my reserve of patience, in order to talk him down. If I was tired before, and I was, I'm almost lifeless at this point.
Ideally, I'd do better as a parent and stay in top of all these things. Much like Gavin, I'm far from perfect and on a good day, I'm in the deep end of the pool, barely treading water. I'm going through some very serious shit of my own right now and it's consuming me. It's not an excuse but it is the reality and even if I wasn't so distracted, it's very difficult to stay even a few steps ahead of Gavin on a constant basis.
He's not the only one I have to worry about. Both the boys and Lizze are facing their own set of challenges that often requires more of me than I have left to offer. Gavin just happens to require more than anyone else and doesn't handle things not going his way very well at all.
We'll call the specialty pharmacy where Gavin received his IVIG Infusion supplies from and request a refill of his Ensures this afternoon. It will be at least a few days before they arrive and maybe more because of the timing. Unfortunately, for reasons I have yet to understand, they can't set this up for auto refill. When his new shipment arrives, I'm going to have to create reminders a few days before he's set to be out, in order to request refills a bit a head of time.
My hope was that Gavin would be able to manage his Ensures on his own because he's so food motivated, he wouldn't want to ever be without. We will either need to find more creative ways of helping him manage this or just say *fuck it, *and do it ourselves.
I can't really explain how frustrating this is but it's really, really, really, really, really, very frustrating.
