“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. That’s why I’m posting this on her birthday. Out of mad respect of what she does for me and for ALS families everywhere every day.
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. Now, thanks to Donna York Of HARK, she drives our second ‘Hopemobile’ and me to events, meetings and Doctor appointments. That includes driving to Boston for appointments at MGH and Spaulding to troubleshoot my weakened neck and with that, revisiting my wheelchair configuration. Driving to Boston is easy. Driving to Boston, after waking at 4 AM to get me toileted, cleaned, pack my food and travel necessities in the van, get herself showered and maybe fed and be sure we hit the road in time for the two hour trip is exhausting-even with help. And the ride home with me often asleep in the back, after a stress-filled day (even visits where everything clicks are stress-filled). Linda often is wiped out after Boston trips, but she gets up the next day and carries on.
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 "Whatchu looking at?" stare 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.
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. Earlier this year, we realized that the tenuous method we had developed to get me on the toilet was simply too dangerous for both of us. Over 12 years we’ve become adept at adjusting to new hurdles presented by the progression of ALS. So, we’ve adapted to this challenge too. I now use our dining room as a bathroom. I’ll spare the details but they can be found in our May 31st Blog at: http://hope-jg.blogspot.com/2019/05/
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 continued 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.
The most significant accomplishment of 2019 was certainly getting Linda’s Caregivers Bill signed into law by Governor Mills. Linda was the inspiration behind the bill. I say she was the inspiration for the bill with a bit of my tongue in my cheek. She actually bent poor Representative Patrick Corey’s ear long enough on our front landing to a point where she made her case with a purpose few professional advocates posses.
Every day, whether it's a broken leg, an aggressive form of cancer or one of millions of possible afflictions, Moms and Dads, Husbands 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 twelve 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 week, and turn it into a daily habit throughout the year. We recently had a group of friends, some of whom we’ve never met, show up and shower us with love demonstrated by flowers, chocolates, meals for Linda and hugs. They also showed love by cleaning our gutters, cleaning and organizing our garage, dusting, vacuuming, taking down drapes and washing them and organizing our wall unit. At the end of a hectic afternoon, they gathered in the living room and prayed for us. That kind of support will sustain us for a long time.
Caregivers not only deserve our support, they deserve respect and care themselves. I’ll never be able to repay Linda for the sleepless nights, the emotional and physical exhaustion and the worry ALS has brought to our marriage. 12 1/2 years ago, when we thought ahead to this time in our lives, we thought we’d be traveling , reconnecting with friends and enjoying the fruits of our combined labor. Instead, we spend most of our waking hours focusing on keeping me going, some on dealing with the mountains of papers that come with ALS and the rest we spend on what has become our passion - helping other families fight “the beast”.
I worked on this for awhile with the goal of posting it on her birthday, December 28th. If you will, please join me in wishing my dream girl, caregiver and wife and your tireless (and often far too quiet about what she does for ALS families) advocate, a very happy birthday. Drop her a PM, text her if know her number or comment wherever you see this posted. Happy Birthday Babe. Love you until the end of time. 😘⚓️💪🏼❤️❤️❤️❤️
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