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Hi.

Welcome to my ramblings. We discuss MSA (multiple system atrophy), caregiving, and life dealing with a loved one with a debilitating disease.

This is it

This is it

I remember that exact moment, “this is it”. It was all a blur, all muffled voices, flashing lights, and a buzz in my ears … my head was reeling and everyone is scrambling in a flurry of stethoscopes, beeping machines, raised voices of “not getting vitals”, “start a line”, “Who came in with this patient”.

“The wife, get the wife!” I remember stepping up with my bag of medical records in hand, telling the nurse, “He’s a DNR …” and in synchronicity, every head turned to me with a look of bewilderment. “He’s a DNR, what’s your plan? Do you have vitals?” I remember one voice asking if I was sure; of course, I’m sure, because for months we had discussed the “what ifs. Every scenario we could think of and what would my love want at this very moment … this is it.

I remember the female ER doctor coming to me and explaining his vitals. Blood pressure of 42/24, core temperature of 92. I gave my short generic answer regarding MSA, the recent quest for the genetic marker, the search for amyloid in his liver and heart, and the ever-constant orthostatic syncope with MSA. I rattled off the events of the previous few hours; significantly low blood pressure and passing out once my love started to sit up. She asked a few more questions and then had a nurse escort me out so they could insert a central line. Escort me out? Are you kidding?

The waiting room is a lonely, sad place. At 1 am, it’s really a lonely place. TV talk shows droning on about unfaithful spouses, infomercials selling god knows what, and lots of out-of-date magazines. Uncomfortable chairs setting the stage for you to wrap your head around the established list of phone calls to make, people to call to make phone calls, loved ones to wake up and share news … every kid was assigned someone to call. Not ready for this now.

The slow creep, warm panic that starts to work its way up from your belly. “Don’t cry, don’t cry, crying is allowing the panic to spill over. Keep it together, you might have to call kids. Do I have my list? What about Hazel, should Hazel be here?” My heart is pounding and breaking altogether, short breaths are starting, my hands are shaking … Believe me, its absolute insanity.

“Mrs. Shearer? He’s stable for now. Come on back and the doctor will see you” are like music to my ears. I remember leaning over and trying to envelope as much of my love as possible in my arms, whispering “I’m here, it’s okay”. His eyes were wide, unsure of the recent events, and the sweetest sentiment comes out, “I realized that I didn’t write out directions for you for the tv, surround sound, and remote controls”.

In his silly quirky way, he was worried about me not being able to work the tv in the man cave. Is that love, or what? I made him promise that he would write it down as soon as he felt better; and as of today, it’s still not done.

Things You Don't Say ...

Things You Don't Say ...

Doing the best we can

Doing the best we can