For those of you with a son or daughter who requires 24-hour care, you know exactly what I’m going to talk about. It is something that those outside of this demographic take for granted. It is something called “privacy”.
We have very little of it in our world given all of the caregivers in Ben’s world. Without question, these important team members have helped to lighten our load and give Ben a break from us invading his life all of the time. As I say this, I guess Ben has even less privacy than we do. Nevertheless, as the Friday evening person leaves, we are looking forward to a “private” weekend.
For the most part, we’ve been lucky to find engaged and motivated caregivers because this job requires a unique set of traits. It’s hard work, it’s exhausting work, and it can be monotonous some days without any adult interaction. These people assist Ben with the most private, most personal tasks. Their trustworthiness is absolutely critical.
These caregivers see us at our best and at our worst. They are there when we wake in the morning as we try to fix our hair to look presentable and rub the sleep from our eyes. They are there when we arrive home from a stressful day at work. They are there when the phone rings and the conversation gets animated. They are in our home, which, of course, is their workplace. At all hours.
Everything we say is on record whether we like it or not. Our lives are on display all the time which can make it challenging to balance that delicate employer/employee relationship. It requires a lot of energy for us to maintain a pleasant façade especially when we’re troubled inside. And if we are less than cordial to them because we are running on little sleep or we’re frustrated because we didn’t get approved for that new, super expensive piece of equipment that Ben needs, it can affect that relationship. And it might just be the one thing that tips the scales on that particular day with Ben paying the price.
I have to be honest. I feel a faint pang of worry from time to time about what these caregivers might do when we’re not around. Everyone can have a bad day, and everyone has emotional baggage they bring with them to the workplace.
Since Ben can’t speak, there is the risk, however slight, that something could happen and we’d never know. Like deciding not to give Ben his meds just because, or giving the wrong dose because they got distracted. Or yelling at him because he wasn’t cooperating. A few days of this would go unnoticed and probably would not be a big deal. We’re all human. But if it happened repeatedly, at some point Ben would behave differently and we’d have to try to figure out why. Suspecting one of his caregivers would be far down the list of possible causes.
I take some comfort that our battle-weary psyche has made us wiser over the years and Ben has developed an uncanny sixth sense to let us know when something is not right.
Our upcoming “private” weekend holds more meaning than simply being caregiver-free. You see, it also officially marks 29 years together. Little did we know back then, when we stared so blissfully and naively into each other’s eyes, how our world would unfold. To actually make it 29 years with so little privacy is a blessing. This is our anniversary gift to each other – a private weekend … with Ben, of course. Can’t wait!
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