I've sat down to write this several times, but can't quite get it to sound right, but here goes...
Clinic visit last week went OK. DH's neuro probably spent over an hour with us. He is now on an anti-depressant (Paxil). Other meds were adjusted, and she is sending him for blood tests to try to figure out why he is shaking so much. She said it could just be the cold, could be clonus or could be something else. She also told him that his breathing and diaphragm movement were good, so that he should be around for a while. More wheelchair adjustments, new neck brace and a lead on a possible donation of a better bed. It's such a long and draining day, always with a new to-do list for me. On the way home, his only comment was, "So I guess this is not going to take me out".
I'm spent. More mentally and emotionally than physically - although I seem to be coming down with a nasty cold. I hope the anti-depressant will kick-in soon and help DH. Nothing seems to make him happy. He wants me to sit with him all the time, yet the only time he talks is to ask me to do something or to complain. When I ask him questions, like "What do you want to do today?" or "What can I get from the grocery store for you?" - simple stuff - all I get is "I don't know." or "I don't care." So in addition to being totally physically dependent on me, he is now emotionally dependent on me? I don't know how else to put that. He expects me to somehow be able to figure this all out and make sure he is happy and comfortable.
He's also starting to really stress about going to DD2's graduation. I've discussed the whole plan with him. From what I'm packing (had to show him my written list), that his aide is coming in the morning to help us get packed and on our way, all the accommodations and that if he is not comfortable staying 2 nights (we're driving down Saturday for the Sunday graduation, with plans to check-out Monday AM), that we'll pack up and leave and I will drive home after the ceremony. He wants to know how he is going to handle the 5 hour drive. "I'll make you as comfortable as possible - we'll stop for a break whenever you need to." If he is going to be able to recline in his chair at the ceremony. "We'll leave our seats and move out to the concourse if there is not enough room. DD1 will make sure that we don't miss DD2 accepting her diploma." Where will we park? "Handicapped parking is available - if a van accessible spot is not, I will drop you and DD1 off at the door and find a spot, then find you when I'm done." I really have tried to figure out where we could possibly have difficulties and found alternatives. Yesterday, after the latest round of questions, I reminded him that he also has the option to stay home and watch the live-stream of the ceremony. I'd get someone to stay with him, drive the 5 hours down for the ceremony, then turn around and drive back to be home the same night. I'd hate to have him miss it, but I feel like the whole trip is becoming more about him rather than celebrating DD2's accomplishments. And I know that sounds really mean.
I'm sorry this has turned into one long, rambling complaint. I'm just at a loss for what to do.