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Tuesday, February 4, 2020

Who Cares: A Thank You to Caregivers

By Scott Layman

I still smile as I remember helping my wife, Joy, care for our infant son (some 14 years ago) ... changing diapers, feeding the hungry little creature, buying cute outfits, and even playing until the cackles of laughter seemed to never end. Doing all of that, while also helping to raise three stepsons, work a job that required extensive travel, and doing other grown-up stuff, seemed at times overwhelming and hectic for me. In hindsight, however, it all just became part of our daily routine and was as normal as normal got for us.

“Normal” changes as we age, and it changes differently for different people. When I was in high school, my routine was to sit through six classes, then go to football, basketball, or track practice and have a game or meet every week or so, eat meals with my parents (who, I must say, did an excellent job of raising me), and hang out with my friends. The next day I repeated what I did the day before, and so on. That was “normal” for me at the time.

As I entered my college years (Go Hokies!), the competitive running continued, for a while. I had more time on my hands, presumably for studying, but it took me a year or two to figure out that part. By the time my senior (and architectural thesis!) year came along, I was carrying 18 credit hours and just trying to graduate on time (to make up for ‘too much time on my hands’ and my declining GPA), all while working a part-time job, going to weekend (and the occasional weeknight) fraternity parties, and juggle time with a girlfriend who had graduated a year prior and lived 45 minutes from campus. I was “busier than a one-armed wallpaper hanger,” as a former boss and good friend of mine used to say, but that was my routine at the time and my “Normal.”

My present “Normal” is nothing I ever envisioned during those early days of life and parenthood. Those who know me know that I have Parkinson’s Disease. For those who don’t know me, well... I have Parkinson’s Disease, and I’ve had it for over 11 years. When I was first diagnosed, the symptoms were not bad at all, and with a little medication, one would hardly know anything was wrong with me. My daily routine continued unchecked. But as the symptoms gradually worsened, the medication increased, and this caused crazy side effects (remember the “hitch” in my right leg when I walked?). The side effects of the meds reached a point where I decided to have DBS (brain) surgery in 2013, after which things really changed for the better.

However, after six or so years post-surgery, the PD has progressed and the meds and DBS programming don’t always work like I want them to, and I struggle with a lot of daily tasks. The tasks I used to do without a thought now take forever to do... things like showering and drying off, loading and unloading the dishwasher, washing and drying clothes, simple house projects, yard work... I could go on and on. When the meds are wearing off, I literally move at a snail’s pace. I don’t like it, but I guess this is my new “Normal.” Add to this the tendonitis in my shoulder, exasperated by the constant tightening of muscles in my left arm and upper body (it’s a PD thing), and I’m a real mess sometimes.

People with Parkinson’s Disease typically have good days and bad days, and some really bad days, and they are unpredictable and occur without rhyme or reason, at least for me. Last summer, we needed to attend a family gathering to celebrate a nephew’s marriage. I had to get cleaned up, but I could barely move or function. My meds were seemingly ineffective, and I felt like a zombie. This was definitely starting off as a really bad day. I reluctantly asked my wife if I could shower with her. The old Scott would ask that for erotic reasons, but that day was totally different. I simply needed help. As my wife washed me, I remembered feeling somewhat embarrassed and humiliated. My only saving grace is that I didn’t cry during the ordeal. I asked myself, “How on earth had I deteriorated to this point?”

This is where the real meat of this writing begins. You see, this article isn’t about me, but it rather reflects upon the person who cares for me. My wife, Joy, and people like her, have my utmost respect and love. That day in the shower provided me with a snapshot of my future. As much as I hate to think about it, the fact is that I will very likely need a full-time caregiver at some point down the road. Joy already does a lot for me, on top of working her tail off at her job and in our home. If we need to go somewhere, she will usually drive us. She cooks for us. She cleans for us. She drives me to appointments with my team of physicians at the University of Cincinnati. She never complains about any of this, at least not in front of me. I know that as I age and the Parkinson’s continues to progress, I will lean on her even more. Joy is my Rock, and I cannot survive without her. My love and appreciation of her is immeasurable.
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Everyone I know struggling with Parkinson’s has someone like Joy in their life. Their Caregiver is a spouse, a life partner, a son or daughter, a friend, or a hired professional. We are seeing a lot more commercials for in-home healthcare services, which is in response to an increased demand not just from Parkinson’s patients, but also from those suffering from other illnesses and an aging population who just needs a little help to live every day. Being a Caregiver is a noble profession in a growing industry.

Most of you have heard of Dave Parker, the former Major League Baseball player who has Parkinson’s Disease. I do not recall exactly when or where I first met Dave, but I have seen him countless times since. We always greet each other with a hug. I love the guy. MLB Network recently aired a show called “The Cobra at Twilight” – if you haven’t watched it, I highly recommend that you do. It showcases Dave and his incredible major league baseball career, but more importantly for me, it shows Dave in his new “Normal” as he lives each day with the struggles of Parkinson’s Disease. Dave is a true champion. The co-star of the show is Dave’s wife, Kellye, who demonstrates her commitment to her husband with grace, passion and love – this is obvious as you watch them together. It will bring a tear to your eye.

Neither Joy nor Kellye asked for this added responsibility at a time in their lives when they could be doing so many other things, and yet they both have accepted the role of Caregiver without hesitation. Maybe it comes down to a “for better, for sickness and in health” kind of thing. Regardless, the people for whom you care with love and compassion notice everything you do for us, and that goes for all of the Caregivers in the world and those people who depend upon their care and support.
As we all get older, our bodies will age, some with grace and some not so much, and most of us will need help in one way or another. Whether you are a child caring for a sick parent or a parent caring for a sick child, a spouse caring for a sick husband or wife, a professional Caregiver, or simply a good neighbor who periodically checks in to bring a smile to elderly person’s face, your actions do not go unnoticed, and those you help appreciate you and what you do. The old can often be grumpy, and the young can sometimes act too proud, but their silence does not mean that your actions are not appreciated.

Caregivers, your ticket to Heaven has been stamped.

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