Last night I urged him to pick out snacks and eat something on our 3 hour trip home with his parents from nephew’s graduation. After all, I wasn’t having to drive The Swag’on and I could feed him anything. He said “no” so many times that he was finally mad. He says “no” most times to everything I ask (except a cigarette) and I think it’s mostly a control issue. HE will make his own choices…PERIOD!! I knew at that point how the rest of the night would go. Then, it did!
We got home and unloaded at 11:45 pm. My mother and girls were asleep. D’s dad toted his phone (which he ignores anymore), cigarettes, & cigarette holder around to the patio table. The holder makes me think of “Breakfast at Tiffany’s”. I/we load it and light it because it keeps him from burning himself since he can’t open his fingers to drop the butt in the ashtray and I’ve burned myself too many times trying to fish a cigarette butt out of his hand! He was frustrated that I had no desire to stay out and smoke with him at midnight.
I’m not a die hard smoker anyway, but mostly I was pissed because we offered many bathroom trips that he refused then went into “potty panic” with full-on lip biting and rocking mode as soon as we parked and were gathering several things. I dumped everything onto a patio chair and quickly followed him to a spot near the edge of our…bed of weeds, I suppose. I got him stood up but he was peeing before I could get him outside the jeans. Hot pee dripping from my hands, his chair and all over his feet. His next words were, “Could you light me a…oh…you can go wash your hands…” In my head I said a smart “thanks!”
We went through our long, bedtime routine of ‘his meds/my meds’ and stripping off clothes. I flatten his side of our craftmatic beds and help him out of the chair and into the bed. Pushing his legs and butt, pulling on his upper body via his shoulders. Stretch his arms (one at a time, slowly) over his head as this is the only time he can raise them with help. I wonder to myself if his armpits still itch every night like they did for so many months and he just doesn’t tell me…but I don’t ask to avoid any conflict. I adjust his pillow til he nods and start working the covers neatly over his feet and straighten them up and across his midchest. Flat, no folds and no wrinkles all the way across! Place his bed remote on his pelvis where he can easily get his hand to it and hit the memory settings for him. He is tucked, tilted and vibrating! I’ve been in panties all this time so I search for at shirt in these piles of clean clothes that have no “designated spot” since we’ve remodeled a bathroom and moved rooms twice! Finally…bed at 12:45am…and then he says it!
In his slow and slurred speech, over the roaring of our fan, “Could you… fix me… some of… that… trail mix… your mom got me? It’s in…. the snack cab…inet, and… put it…. in a blue cup. An….d some ice water.” I put a period there because this isn’t really a ‘question’! I reacted slowly with relaxing breaths to avoid triggering a migraine from anger. “Again, THIS is why I ask you multiple times to eat until you are full BEFORE we take meds and I’m falling asleep!”
I go to the kitchen, fix the snack and drink, come back and get it situated between his hands in the dark and make him get a big drink through his super long straw because I WILL stay asleep now. It’s nearing 1:15am and I’ve had night meds and have to get kids up for school! (Lord, thank you for your mercy to let us survive another day. Forgive me for my mean thoughts and actions. PLEASE, don’t let him choke while I fall asleep…) I never make it to ‘amen’ at night. I fall asleep feeling guilty, but knowing that even if he could…HE would not get out of bed at 1 am for trail mix! BUT, it’s the only control he has…hoping that others fulfill his WANTS as well as needs. It’s a difficult balancing act for me to keep him pleased but not let him control me and become overly expectant. Where do you draw the line and say “NO.” I have a hard time with that. But my face is saying “no” through pursed lips while my actions are saying “fine, whatever!” We fall asleep separately knowing we will do it all again tomorrow like this never happened.
This is just a tiny part of our daily routine that comes with being the 24/7 spouse of ALS. If it were ME, would I have the same expectations? I can’t know because I’ll never know what all he is truly feeling inside. So I feel guilty, as usual. And angry…and sad. God forgive me…