Whose life is he living?

Last night I talked about the fact that I felt 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 to 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 that will 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 caused him to awaken. I’m sure he looks over at me sleeping comfortably in the bed under my covers and tries to delay waking me as long as possible.  Often when he does, I groan and ask, “are you sure?  I just cathed you at xxx.”  He is dependent on my getting up when he asks so that his bladder can be relieved.  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 meet his needs.  If he has an itch or gets cold and needs covers, he can call out for help, but he can’t take care of it himself unless I’m willing to be 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 so that it feels comfortable and fits 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.  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 the flavor of his food 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 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 lowering the temperature when he’s got bone-chilling coldness to handle.

I manage his medical appointments, often deciding with the practitioners the course of treatment.  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, my skill level.  He cannot use his hands or his legs.  He cannot change his own position.  All his comfort is contingent upon my being able 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, he is a prisoner in his own body that will not respond to what his mind still believes it can do.  In order 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.

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About mscaregiverdonna

I am a full-time caregiver for my spouse who has Multiple Sclerosis while I try to work full-time, take care of our home, and handle any number of other functions that used to be shared by the two of us. I'm learning that it's amazing what you can do when you have to and when you have God to send you the resources you need to manage moment by moment.
This entry was posted in Emotional Effects, Ms Journey, Relationships and tagged , , , . Bookmark the permalink.

One Response to Whose life is he living?

  1. Nancy says:

    So true. Sometimes we get so wrapped up in ourselves and what we have to go thru we forget about their feelings and what they can and can not do. They want to do things and remember things, they don’t do it on purpose. I know that and thanks for the reminder!!

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