Making My Own Decisions

Things are a bit difficult this morning. Katherine and I had one of our very rare differences of opinion last night. As with most of these things, it was a simple event that clouded a much more serious issue. She wanted to put skin creme and powder on my feet and other personal areas after my shower. I just wanted to be left alone, just this time. I am usually fairly patient around all of this; it makes her happy to look after me in this way. Sometimes, however, I just feel like I am being pushed around. So last night I said "No" and was quite insistent about it. She got upset that I was refusing to be cared for.

It's an interesting bit of ground to cover. At what point can I, as an ALS patient, refuse a particular bit of care? In my mind, that point should be always and anytime. I am the one who gets to decide how my body is cared for. I am the one who gets to say yes, or no, to a particular treatment or activity. On the other hand, Katherine cares for me deeply and this activity is an intense part of her caring ritual. To refuse care is to refuse her, something that undoubtedly hurts.

I was thinking last night, as she was pushing forward, insisting that I submit, because, in her mind, I needed his act of care. I wondered if the genders were reversed, what would the situation be? If I were a woman saying no to a mail caregiver who wanted to put cream and powder in my private places, how would that play out? What would be my defenses against someone physically stronger than me? Would it end up with a call to the police? What would the charge be?

It's a complicated thing, this caregiver role, especially when it intersects with a more personal role. That's one of the reasons I have always said I don't want Katherine as a caregiver. There is a degree of entitlement when she believes she knows what is best for me, when she feels I need care even if I don't want it. She gets upset when I say "no", and even more upset when I push back. It's got to be a tough balancing act, letting me live while watching me die. I don't care for it either, but I still need to make my own decisions, regardless.