For and With

I am trying to break down my greatest pleasures and frustrations in home care... and I think it all boils down to two damn prepositions: "for" and "with." I think other people in my condition will probably understand and agree with that right away. But for the rest of humanity, let me explain.

When a caregiver is doing things "for" me - whether giving me a shower, washing my clothes, making me breakfast - I feel like a boss and an invalid. I feel like this person is at work at a job they may or may not like, and when they are off the clock they will go back to having a real life. It is very lonely to have things done "for" me - no love or relationship involved, and it makes me feel like my life is just a big selfish parasite. I hate agencies, timesheets, contracts, and damn Social Security, because it all is about what I can get people to do "for" me.

What I really love is when a caregiver does things "with" me - when they make breakfast that we can eat together, or when they invite me to go grocery shopping with them, or when she's painting her own toes and asks if she can paint mine while she's at it, or on a cold, rainy night she suggests that we get into our pajamas and get me out of my chair to cuddle on the couch with a fluffy blanket, or on a warm sunny day she wants to lay me in the grass next to her so we can look at the sky together. When caregivers see me as a friend and companion that they want to hang out with, then even showers and laundry feels like something we do together. I forget that I'm not actually doing any of it, because I don't feel like an invalid, and I don't feel like an obligation or responsibility. When caregivers treat me this way, I feel stronger and more joyful than ever.

And it's with these caregivers that I feel more alive and free. When it is "for" me, I barely ask for the minimum of my needs - go to the bathroom, get dressed, warm up leftovers for meals, go to bed. It's not bad care, it's just sterile and bare bones - I get exactly what I need, physically. But when it's "with" me, I get a lot more creative and fun. The house is cleaner, I am healthier, and I look and feel prettier, because I don't mind asking, because they don't mind helping. And that's when I realize I'm actually getting what I need, beyond the physical.