Yesterday as hard as I tried, I felt smooshed. Stroke on top, Asperger’s on the bottom. When I push my son, he stems. People don’t understand how hard it is to watch over a person with Asperger’s. G did pull himself together and help me finish the job I asked him to do but the strain of knowing how precise my words have to be is so wearing. When I asked him if he thought a boss would be as specific as ME he got really angry. An hour later, he came in and hugged me and we did it. With G, even at 20, he either works completely alone or hands on WITH.
I stubbed my little toe and it’s freaking PURPLE.
Now the stroke… I may try some poetry imagery. It’s just such a huge thing and as much as I want to help him, if he doesn’t help himself, it’s gonna sit on us forever. I’m worried too because strokes reoccur and while I don’t want to live afraid, it weighs on me. Steve will sneak snacks. I want his A1c to stay low and his B/P to stay controlled. Right now they are very good. I ask him to stop going BACK to bed in the am’s. He’ll stay there till 11:00. I set alarms, he ignores them. I say EXERCISE, do bridges, he ignores me. I go out and come back and he’s lifting his arm. It’s the only one he’ll do unless he’s in therapy. His face has lost all the tone it had. It simply droops on the right. Sometimes he drools. Most days there are 3 clothing changes as he dribbles pee before he gets to the pot and after he pees. I’ve had to change to a highly scented laundry soap to cut the pee smell from his clothes. If I leave a urinal close to him, he cries. So I don’t. He moans and groans the whole walk through the house. I want to give him his time to heal and not pressure him, but therapy says DO IT LIKE A JOB. That’s exercises for the full body, not just his right arm. He brightens up during therapy. He acts like nothing is wrong, like he’s perfectly capable and he shines while on that NuStep bike. He’s a show off…a boaster…a storyteller…an exaggerator. I think he’s a closet actor but that makes him mad and he thinks I’m being mean. I have to know these things in silence which is usually OK. Today is his eval for more therapy. He will say he can do everything they ask him about. ABSOLUTELY NOT. He can carry the remote. I had him steady shelve posts this week and let go of his walker. He can dress himself if I have half an hour for him to do it in. He’s managed his socks twice (his ankle swells and hurts). Aside from that, I do everything. We talked about how every day he refuses to exercise is another day he has to live like this and at some point, his added on days will fall outside his “window” and he’ll have to work even harder if he wants to get the full use of his body back. I can’t even suggest he may not get that use back. What if this is IT? What if he’s already hit his wall? I wonder sometimes. I think it would be easier than all the pushing and the therapy and the trips to the rehab. I need a foot stool/ottoman for his foot and the man needs clothes. Money – I’m $300 short of monthly needs. Will be until October. Groceries are precious.. One thought always leads to another.
And as soon as I speak it – Medicaid cancels his therapies. BANG.