Saturday Somethings - My Mom

I'm one of my mom's primary caregivers.  And therefore, a lot of people ask how my mom is doing.  I have a really hard time answering that question.  My mom has MS, or Multiple Sclerosis.  It's a horrible, nasty disease that affects everyone differently.  So even people who have had some experience with the disease often have misconceptions about my mom's condition.

The only way to really know how she's doing is to spend some time with her.  And even better, an extended period of time with her.  But that's not possible for all the people who are genuinely concerned for my mom.  They have lives, too.

Consequently, I give most everyone a simple answer.  I honestly tell them she's not doing great.  Some days are minimally better than others, but her overall condition is not so good.  Her mental condition is going way down hill which is difficult to watch, but in some ways has made taking care of her a bit easier.  And believe me, that is the simple version!

In an effort to share with you a large portion of my life, and to answer the question of, "how is your mom?" I'm going to share an experience I had with her just this morning.  I feel it's okay to share.  It's too embarrassing and it accurately illustrates what it's like interacting with my mom.

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Johna's here.  She's our wonderful cleaning lady who comes once a month.  Currently she's cleaning my parent's room.  A few minutes ago, she popped her head into my room and said, "I think your mom has a question."  So I walked in there to see what it was.

My mom was holding a white t-shirt and as I got closer to her she MS whispered, "I want to put this on."  I told her that was fine, but she had to wait until Toby got here to give her a bath (Toby is her CNA who comes to bathe her three times a week).  She would change her shirt for her.

"What time will Toby get here?" She asked.


"I'm not sure, not for a couple more hours though."  I answered.


"I want to wear it now." She said.


Oh great, I thought to myself.  It's going to be one of those arguments again.  The ones in which I can't win.  The ones I can't/won't give in on and she gets pissed at me. "No, I'm sorry.  You have to wait until Toby gets here.  I can't put it on you by myself and Dad's at work so he can't help either."


"Yes you can.  You can do it." She replied.


"No.  Mom.  I can't..."  I said, trying to sound serious and final.  Her present physical condition leaves her basically a quadriplegic.  She has some movement in her legs, a bit more in her arms and hands, but not enough to make a difference when you're trying to move her around.  And since I'm pregnant, that makes it basically impossible to change her clothes by myself.



"Rachel.  You can do it.  Just pull this one off of me and put this one on."  She replied in the same serious and final tone.


"No Mom, I really can't.  I'm being honest about this.  I can't do it by myself so you'll have to wait until Toby gets here."


At this point, she gave up, closed her eyes and turned away with a pouty child look on her face.  And as immature, frustrating, or insulting as that gesture is, I'm grateful for it every time!


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The most frustrating thing about situations like this is that they aren't cut and dry.  She's not just trying to be a brat about things.  She really, honestly feels like they are important because in her reality they are.  So I feel horrible about refusing to do these weird things that seem so off the wall to us.

However, at the same time, the things she asks us to do are so off the wall and usually there's no need to do them.  Like changing her shirt.  Not necessary at all.  And with my mom being bed bound, it's a huge job just to change her shirt!  So why do it?  Because in her reality she has to wear a white t-shirt for her salvation?  No.  That's not what's real so we don't do those things for her.


Still, we try to walk the line of pleasing her and keeping our sanity.  For example, when she's sure her water is contaminated and won't drink it.  I'll pour it out and get her some more.  It's not a big deal, or hard to do, so why not do it and make her that much more comfortable and happy.

Could you imagine how horrifying it would be to know you're water is contaminated with some deadly disease and the people who supposedly love you and take care of all your needs because you can't do them yourself tell you that they won't get you clean water?


I try to.  It makes taking care of her just a little bit easier.