I am obsessive, not that anyone can tell.
Part of me has become a ravenous reader of books related to death. Obviously, a big part of that was Barry’s terminal diagnosis back in 2008. I wanted to prepare myself. And it is 2016 and he is still living and I am still reading. Frankly, it was starting to give me the creeps. So lately I’ve been asking myself why I am still reading these books. It didn’t take much digging to know the answer.
I want to know how to prepare. I want to know the signs of impending death. I want a clue. It sounds so obvious.
I’ve prepared as much for Barry’s (and my own, for that matter) as I can to this point. I have the plots, the grave marker, etc. Everything but a casket.
But what is with me trying to understand everything? I am simply trying to fill in the blanks because I am dealing with an unknown degree of Huntington’s dementia. Barry doesn’t understand much of anything and his communication skills wane by the day.
I think a big problem is my being left in the dark regarding just about everything involving his medical condition. Barry doesn’t want to treat anything, so all the health-care providers have gone into full-blown palliative-care mode. They are all like, “Let me know if and when he is in pain and we will address that then.” I see the attitude shifts sometimes when receptionists go from, “Please complete these forms,” to, “Don’t worry about all those forms.” And then there’s the neurologist at MSU that eagerly showed the intern/resident Barry’s enlarged lymph nodes and then casually told me to schedule an appointment for Barry a year from then. A year? Seriously? That told me that the doctor’s attitude was somewhere between “There is nothing more I can do for him,” and “I’m letting him go home and die in peace.” Given the medications he is on, I expect some 3- or 6-month monitoring.
This is part of why we are moving. We are moving for two reasons: 1) I am incapable of caring for Barry and the house and 2) we clearly need some more Huntington’s resources than we have here. Perhaps WVU will be able/willing to provide me with more information as to what is going on with him physically. Part of me does not even care what is going on; I just want a clue and maybe a timetable. I want to know what I am dealing with.
It reminds me of when I was working in my mid-twenties and realized quite suddenly that my family dynamics were such that, out of my three brothers and myself, never more than one sibling at a time had some huge drama. We managed to somehow take turns. How does that work? It struck me so hard at work that day. What the hell kind of subconscious dynamics were going on that the four of us so consistently managed to alternate drama?
Barry cannot learn and his communications are getting less clear by the day. So, in typical fashion, I overcompensate. The problem is that if I don’t do it, it simply does not get done. Period. How do I back off from that? How do I not overcompensate?