Last night, I talked about feeling that I was not living my own life and that I was lost in the caregiving role. Tonight, I want to explore the other side—his side.
Lynn sits up at night to sleep so that he will not wake me up, and I put him on his peddler when his legs get stiff. He has given up sleeping in a soft bed until he can create a device to keep his legs moving at night. Therefore, when he wakes up, he decides if he needs to be cathed or if it’s just stiffness that causes him to awaken. I’m sure he looks over at me, sleeping comfortably under my bed, and tries to delay waking me as long as possible. When he does, I often groan and ask, “Are you sure? I just cathed you at xxx.” He depends on my getting up when he asks to relieve his bladder. His relief is contingent upon my cooperation and my timeline.
When morning comes, he lies down while I shower and eat breakfast. Even if he is stiff and needs to move around, he has to wait until I am available to get him up. His comfort is dependent on what I’m doing and when I can come to meet his needs. If he has an itch or gets cold and needs covers, he can call out for help but can’t take care of it unless I’m willing to be in his hands.
When it’s time to get dressed, I pick out his clothes and dress him. I often give him the choice of what to wear, but putting it on to feel comfortable and fit right is up to me. If the seams aren’t right or something is twisted and I don’t fix it, he has to wear it that way. Have you ever worn a twisted garment for very long? It’s very uncomfortable and annoying, but I can’t feel his discomfort, so how do I know?
When he wants to eat, he has to wait for me to fix it. I season it according to my taste, which is nothing like his. Though I try to match what he likes, I can’t taste through his taste buds, so his food’s flavor is through my taste buds.
When he wants entertainment, unless the remote is within reach, he has to watch what is on until I can come to change the channel or put in a new CD or DVD.
If he’s cold or hot, he needs me to change the thermostat or bring/remove blankets to adjust his comfort level. He’s anemic, but I’m often hot, have a fan blowing, or lower the temperature when he’s got bone-chilling coldness to handle.
I manage his medical appointments, often deciding the course of treatment with the practitioners. I arrange his living space, take him where he needs to go or buy what he needs to have—all of which is done according to my taste, my timeline, and my skill level. He cannot use his hands or his legs, and he cannot change his own position. All his comfort is contingent upon my ability to help, my understanding of what he needs, and my willingness to do it.
As is true with each of us, inside ourselves, we are still young, still able-bodied, still filled with the hopes and dreams we have always had, only now that he is disabled, we are prisoners in our own bodies that will not respond to what his mind still believes it can do. To live his life, he has to live through me.
So last night I was lamenting about living my life through him but he can lament the same. We live our lives through each other…but then isn’t that what a married couple does anyway? What God has joined together….well, in our case, we are truly one.
