Have a Little Faith

Trying to make myself not worry last night was a little like telling a first grader to stop messing with her loose tooth. Instantly, it becomes priority number one.

Robert doesn’t worry about anything. He just says a quick prayer if he wants to beat me at cards or he wants it to stop raining. He just assumes things will work out because he prays for it to work out (or because he tells me when he’s out of something). I don’t really pray because I don’t have the patience to just wait around to see if something is going to work out. I need to take action so things work out. There is no good way for me to stop thinking about “what’s next” for Robert and “how can I take care of things?”

What supplies does he need? He’s about due for some more 7-Up and razors and he definitely needs pens (black & the clicky kind), so I’ll stop at the store to get these for him.

How will his Day Program interview go? He has an interview tomorrow morning with the program that we toured several weeks ago. The application was submitted and now we’re being interviewed. I assume by next year, he’ll actually be going to the program. (I kid) The process to get him into a Day Program is unbelievably slow but it may actually have been for the best. He has quiet time during the day to get used to his New Home and has created new morning and evening routines for himself. These shouldn’t be disrupted too much when the Day Program starts (although he may have to speed things up in the morning in order to be on time for the transport van). Who am I kidding? The van will have to wait – Robert only has one speed (and it isn’t fast!).

Does he actually like his New Home? Who knows!  Robert is terrible at self-reporting. He has been known to tell me he hasn’t had a seizure in four months when I know for a fact he had one the previous day. He has a high tolerance for pain and never, ever says anything hurts but once when he was in the ER (due to an adverse reaction to a new anti-seizure medication he was trying), he told the nurses his chest hurt. Oh my goodness! Don’t ever say that in an ER (well, unless it actually does hurt). There was an instant flurry of activity which drowned out my pleas of “He’s terrible at self-reporting! He doesn’t really have chest pains! He’s probably hungry!” Fourteen hours later, he was sent home and taken off his “new and improved” medication. (Don’t worry – for those of you who are appalled by my insensitive dismissal of his complaint they confirmed there weren’t any heart issues). So even if Robert tells me he likes his New Home, I have to somehow verify this which is usually by visiting often and seeing that the Aides do treat him well and his room doesn’t stink and he looks healthy and well-groomed.

Is Robert healthy? This has been a tough one lately since he had a cold and we have had terrible experiences with his past colds. This time (knock on wood!), he seems to have recovered fairly quickly. Which automatically makes me very, very suspicious. (Be grateful, Trish, be grateful).

And my big worry that I don’t talk about much:

What does the future hold for Robert? He has deteriorated dramatically over the past few years. He used to be able to walk without assistance; he is now dependent on a walker. He’s 45 years old and has far outlived any of our expectations (heck, he outlived our parents which . . . well, actually, if you knew my parents . . . nevermind, this probably isn’t the best example). Anyway, Robert is middle-aged! That’s quite an achievement for someone who has banged his head more times than I remember, broke his jaw, was left in a coma for a few days after seizing in a swimming pool, has had his head cut open and stitched back up (more than once) and . . . well, you just don’t have that kind of time for me to continue.

I have no idea what the future holds for Robert but I am going to do my best to keep him as healthy and happy as possible for as long as possible. In order to settle the worry and concern in my brain, I probably just need to take a little bit of a lesson from Robert and have faith that things will work out. That, and have an action plan.