Saturday, October 4, 2014

Caregivers Month: Affirmation and Reality




“Affirmations are our mental vitamins, providing the supplementary positive thoughts we need to balance the barrage of negative events and thoughts we experience daily.”
― Tia Walker, The Inspired Caregiver: Finding Joy While Caring for Those You Love


Here's something I'm awful at: Affirming and edifying my caregiver, who also happens to be my wife, consistently. 

Sure, I've written some Facebook posts that express my appreciation. What I'm confessing to is, when it's just the two of us, not being more affirming in my behavior - and the fact that I can't speak is no excuse. Let me get real here, and probably a bit too graphic for the sensibilities of some, so apologies in advance. 

It's an understatement to say ALS is a humbling disease. After we rejected the confirming Doctor's prognosis of "terminal", we had to deal with stumbling and falling in public, followed by walking with a cane (and still stumbling), then the move to a scooter (which my 120 lb. wife had to wrestle in and out of my SUV) and finally a wheelchair, which meant Linda had to learn to drive a cargo van.

Then comes eating, especially out of the house. Linda and Matt both became used to the stares as people noticed me fumble, choke on and spill food. As it became increasingly difficult to manipulate a knife and fork, people staring as Linda patiently cut my food into manageable bites as her own plate got cold. I must say, Matt developed the "What chu looking at?" glance down to a science:) Now that I have my feeding tube, we eat out far less. When we do it's sandwiches or burgers in the car, or take out at home.  can still take in some things by mouth. Burritos are a high calorie treat and eating at home means Linda can cover me in a rain poncho to preserve my clothes. Preventing the public spectacle that would create if we were anywhere but home.

And the bathroom...sigh. Over the years, as my ability to ambulate has decreased, this is the area where caregivers like Linda really earn their stripes. I need to be constantly on guard for the first sign of an urge to need the bathroom. We decided earlier this year, after more than a few accidents which tested our collective patience (Matt included), that having a urinal handy by my recliner is easier than trying to transfer to my wheelchair for the  20 foot trek to the bathroom and the struggle to stand me up. Linda has had to change more than her share of urine and poop covered clothes, strip me down, wash me off and dress me again. That's the stuff people don't see when I roll into a room all clean and neatly dressed.

No one sees the ugly, practical side of choosing to live with ALS. In many ways we protect others from it by not talking about it. (And this article shouldn't be mistaken as a plea for sympathy or a public complaint. It's merely intended as a peek behind the curtain of our lives.)  

We've chosen not to disengage from interacting socially. We respect and honor those who choose a more cloistered existence but, for us, the best way to raise awareness is to let people see: 1) What ALS does to the body while leaving the mind intact, 2) That it's possible to enjoy life no matter what, 3) That my affliction isn't an excuse to not help others. And, as little credit as she gets for it, Linda has been a major part of #3. The same heartfelt mercy and compassion she pours out on me every day has continues to be poured out on others in small acts of discreet kindness and in some major, almost supernatural ways few would believe if they knew, given our financial and physical circumstances.

October is National Caregivers Month - and it's not specific to ALS. Every day, whether it's a broken leg, an aggressive form of cancer or one of millions of possible afflictions, Moms and Dads, Husband and Wives, Sons, Daughters, relatives, friends and strangers are pouring out their hearts to people in need of care. They wipe noses and drool covered chins with a knowing smile. They empty urinals and bedpans discreetly. They rub lotion, wipe up spills, comb hair and brush teeth. They do a million little things without being asked and ten million more we ask for. They rarely get a full meal. Sleep comes in chunks of minutes not stretches of hours. They are angels on earth and God smiles every time they act. He smiles often.

MY angel is also my wife and my best friend. She is the embodiment of our marriage vows "In sickness and in health". There is no way to express how much I love her. Not for what she does, but for who she has grown to be over these seven long years. Years that have tried our combined sense of patience, humility, humor and faith. Together, we've touched the face of God and we've felt the breath of Satan on our necks. But it is always Linda who silently goes about the business of lovingly, diligently and prayerfully caring for me. And Satan can't overcome that kind of love.

Hug a caregiver this month, and turn it into a weekly habit throughout the year.





1 comment:

  1. Linda is a Rock. Yet she is the softest sweetest person. When I look into her eyes, as she looks at you, there are 1,000 different emotions going on. Yet her love for you and God are ALWAYS at the forefront, and the strongest of those emotions.

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