Getting Past No, Getting to Yes

(Written pre-seizure)

Call it the steroids or perhaps frustration from being physically manipulated 24 hours a day, but mom’s been pretty hard on herself lately.  For every “you’re doing really well” there’s a “like hell I am” or “bullshit” or “no I’m not.”   Though it’s hard to hear her berate herself, she typically moves faster after a little venting, so it all seems to work in the end. 

Being on the receiving end of the berating is another story.  And here, I’d like to amend Erin’s chemo-sobby to include angry chemo-sobby.  Dad seems to get the lion’s share of the scornful looks and tongue-lashings; I’m a close second (see Diane’s post).  Mornings are particularly tough, especially if we dare to serve egg-beaters instead of real eggs (lady’s got a point).   We usually can muster a solid 30 minutes of happiness until the dark clouds ‘o cranky come rollin’ in.  Her reticence typically matches her fatigue.   Asking if she would like some water, or would like to move to some location typically provokes a cranky and drawn out ‘No’.  Getting to ‘Yes’ is quite the chore, and often requires heavy motivation from the gallery (and from her). 

Bed-times also trend on the testy, which is understandable given that most of her day involves some level of handling – we have to physically move her to a chair/commode/car – or worse, being dictated to (e.g. move your foot to the left, etc.).   Our nighttime routine involves us literally hoisting mom into bed– often using our bodies (legs, head, chest) as human seats -- and turning her into position.  We then have to manipulate her body through a series of log-rolls and drop-cloth pulls in order to position her body on her bed pads.  The hoisting and log-rolling often trigger tears of fatigue and frustration.

The complete and utter loss of control is not only scary and frustrating for her; it’s a reminder of the ‘process’ that continues unabated.  In early May, mom was able to walk with a walker pretty much on her own.  In mid-May, she required one person to keep an arm at the ready, just in the event she lost her balance.  Last week, she needed at least one person – two if tired -- to constantly hold her in position and guide her to her destination.   Her legs give way long before the rest of her body, which is frustrating for her.   Moving her legs – especially the left – is like trying to jumpstart our old station wagon on a hot Oklahoma day.  No matter how often mom would turn the ignition, the thing wouldn’t start.  Likewise with her legs, she has to resign herself that the battery is dead and needs recharging.    Now, her left-sided weakness is a bit of a moot point.  Since her seizure, she’s completely immobile. 

Despite our best attempts to lessen her pain, all the lifting – either out of the commode, chair, bed, etc. – hurts; it leaves nasty bruising and sometimes open wounds.  Falls are unbearable for us all and knowing we’re the ones to cause her discomfort is simply too hard to take.  We’re doing the best we can, and with every fall or scrape, we’re learning and adapting – and so is mom.  Though she’s now only able to stand, she’s TRYING to move, and eager to build her strength so that she can become less dependent on us.  With intensive physical therapy, and encouragement from us and from her, it’s not unreasonable to think she’ll soon be on her feet.  As she regains her freedom, I’m sure her moods will improve, and we’ll move past No, and get to Yes.  -- J