Chronic progressive MS is like a trip down a long, slippery slope. The sad reality is (at least in our experience), that once you've slipped down an inch or a foot, you're never regaining that territory again. No new symptom, once experienced, has ever gotten better for Skip (except for a bout of optic neuritis where her vision seemed to regain some lost ground). As Simon and Garfunkel said, "once it goes, it's gone."
Skip didn't go from fully able-bodied to her current state overnight. It took over 20 years, with a lot of small losses piling up to get here.
Caregiving to someone on the slippery slope of MS is also a slippery slope. Just like her disease progression, the amount of aid and support I give her in our daily routines also built up over a period of many years, bit by bit.
Awareness of this effect gives me concern whenever a new bit of support needed from me inches towards the status of habit. When we were in Las Vegas last year, the grab bars and seat in the roll-in shower in our hotel room were positioned such that Skip could not keep herself sitting upright and have a free hand to wash her hair. So, I washed her hair for her during vacation. It made her feel good (doesn't it always feel great to have someone wash your hair?) and I was happy to do it for her. Upon returning home, we continued this practice for a bit because Skip's arms were feeling weaker than normal. Slowly but surely, the hairwashing continued. It's a habit still in place today.
Skip and I both use the term slippery slope when speaking of her MS progression. Answers.com defines slippery slope as "A tricky precarious situation, especially one that leads gradually but inexorably to disaster." I don't see disaster as the final state for us. I know we will continue to grapple with the losses and life will probably get harder for her and us. We will do all we can to slow the slipping, deal with whatever happens and hope we never hit bottom.
But, now that I've read the definition, I think I'll stop using this term.
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4 comments:
I've always defined it as a concession given to one without consideration of others in similar situations. Once done, there is no reasonable argument to deny the rest.
When it comes to progressive disability, slippery slope doesn't apply. You give what's needed, and obviously more. MS is going to do what it does without regard for your efforts. It's more like shoring-up shoulders.
Steve - I agree, with your definition of slippery slope, from that perspective, it doesn't apply to progressive disability.
I especially like your statement that you give what's needed and more. I like to think that giving beyond just what's needed is a true testament to love and caring.
Patti's progression began with a giant leap going to bed able bodied one night and waking up unable to walk and barely see. Then as you describe decades of little pieces coming apart.
As caregivers I agree with you that we kind of mirror that progression in the time and level of support we need to give.
Caregivingly Yours,
Patrick
Patrick - that giant leap must have been shocking and incredibly scary. And, what a sudden life change as well. With Skip's slow progression, we've been able to make small accommodations over time. Hard to imagine what would have happened if our world had been turned topsy-turvy in one night.
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