Please Scream Inside Your Heart

At a theme park in Japan there is a sign that asks riders of the roller coaster to “scream inside your heart,” meaning, don’t scream out loud on the ride when you are scared. Do it quietly. Inside of you. Where no one else can hear. While it is a very poor translation, it has profound meaning for our times.

Thinking back on your life, have you ever been so scared that even though every inch of your body said, “Scream!” you couldn’t make a sound?  Truth be known, we’ve probably all had a “silent scream” in our lives a time or two. And now, as a care giver, in the midst of a raging pandemic no less, I feel like they are a part of my daily life.   Long before life as we knew it, in all its comfortable nuances and predictable happenings, was irrevocably altered, we reluctantly traded in our day job to take on the mantle of caregiver. So, there we were, minding our business, adjusting and adapting to the changes care giving ushered into our lives when out nowhere, one fateful day in early March, someone snatched the rug out from under us yet again. Suddenly, the “caregiver normal” came to a screeching halt and we were told that “normal life,” whatever that meant for each of us, would never return.  How could our “old life,” the one we longed for, be pushed even further out of our reach? After all, as a caregiver, life had already unceremoniously tossed our old routines out the window, replacing them with complicated regimes of endless therapies, doctor appointments, pill schedules, fatigue, and burn out.  Spontaneous quick trips to run an errand were transformed into worries about leaving our loved one at home for even a short while; of debating if we should choose the alternative and convince them to come along for the ride, knowing that doing so meant waiting for the inevitable trip to the bathroom, the hunt for shoes, the quest for the elusive phone, and then, finally, finally maneuvering the walker into the car. Add dementia and cognitive impairment to the mix and it complicates matters even further.  You felt isolated and out of touch before, only to now be told to social distance, shelter-in-place, not see your family or friends. And so, you sit at night, after an incredibly trying day, long after you should have been in bed asleep, wondering, “Can I do this another day?”

 And, it’s then, at that moment, surrounded by fatigue, doubt, and grief, that you feel the silent scream creep into your body – that scream in your heart that can only be heard by you. The one that breaks your heart, but not your resolve. And it’s then that you pause. You close your eyes. You breathe.  Most importantly, you remind yourself that in the end, you tried and you cared. . . and sometimes, that is enough.

Broken at the Strong Places

Isn’t the saying; “Strong at the broken places”? I think this needs a postscript appropriate for the times. Today, as I enter Day 72 of being a 24/7 caregiver for my husband with late stage Parkinson’s Disease, I truly feel it is more like this should say; “Broken at the strong places.” Ah, yes, I feel broken in so many ways. Places that were my strengths before I entered this “caregiver-during-the-pandemic” role have now become one of those broken places in need of repair. And, conversely, the places that had been broken by adversity and refortified through hard work and personal fortitude, are now once again

What is that you say? That I am not alone in how I feel? Yes, I know that. I understand that there are others like me out there, especially now in these strange, surreal times of Covid-19. I know that when it feels like no one really cares, that it is not true: People do care – they just cannot understand because to do that you have to have lived in similar circumstances. I know that others cannot change the reality of what is, no matter how much they would like to. Yes, I know all these things, but when you feel broken, they bring you precious little solace.

So, how does one live through times like these? How do you come out on the other end with at least some semblance of your sanity, with broken places mended and once again strong? There are no simple answers, but this I do know: I know that I am strong; that if I dig deep within my being I have resources I can tap to keep me afloat, to help maintain the strengths I have and to begin to patch the ones that have been broken. And, in the end, I know that, as J. Cole wisely said: “The bad news is nothing lasts forever. The good news is nothing lasts forever.”

I’ve got this.

It’s late . . . and I’m tired

I want to write something meaningful, upbeat, and hopeful, but I just don’t have the energy.  Being the care giver for someone who used to be your partner, but now depends on you to make their day work right, is exhausting.  We are at this stage of limbo with my husband’s PD where he doesn’t need an outside caregiver  to come in and take care of him, but there is so much he gets confused about or can’t remember that it takes me being on duty pretty much 24/7 to make sure his day goes like it needs to. I live two people’s lives — but the part that is my own life is very much eclipsed by my husband’s needs.  And, every night it is the same . . . I am exhausted.

A word about me . . .

I have decided that I need this blog to keep my sanity, or at least what is left of it.  Twelve years ago my husband was diagnosed with Parkinson’s Disease, better known simply as PD, though there is nothing simple about it.  Sometimes I feel like my husband and I are the only two people in the world . . . the disease can be that isolating.  Friends and family are caring and well-meaning, but, unless you have first hand experience with  the disease, and know the zig-zag, unpredictable course that is one of its hallmarks, you can sympathize, but never empathize.  Alas, that is true for so much of life.  In the last three years my husband’s PD seems to have ratcheted itself up a few notches, and, in doing so, overturned both of our lives. Of late I have often  found myself floundering.  I have felt the need to put my thoughts and feelings into words and, in doing so, find solace, peace, and a connection to others on the same path on which I now find myself.  So, here I am.  I am ready to share my journey here with you.