Confessions of a Caregiver 2: The First Hospital

I really dislike parking lots. My preference is to park away from other cars to avoid dings in my doors. Then I usually forget to notice where I park the car relative to where I’m going. It’s February 12. The dark gray fog is hanging over my head like a cloud. I must remember where I have parked the car, the one I have borrowed from a friend.

My husband, John, is in this very scary place: a hospital emergency room. Running on instinct, I feel myself moving into “support” mode. I must be cheerful and helpful. I must disguise my fear for John’s sake. 

Ah, that’s what this cloud is, it’s Fear.

So it is Fear that is creeping in and settling in my psyche. I’m cold. It’s cold in this emergency room. Why are hospitals always so cold? Isn’t there enough to be uncomfortable with and afraid of without adding bone-chilling cold to the equation? I am not amused by this joke.

When I find John he’s thrilled to see me. He’s on a bed in some room, I don’t remember the room, either. I only remember seeing John. My focus is on him like a spotlight on a performing stage. Everything else is swallowed up in the blackness that exists outside of the spotlight. People in scrubs meander into the light every now and then and interrupt our conversation. Little did I know that these were the last real conversations I would ever have with him. 

The Scrubs tell me they are waiting for The Phone Call from the insurance company telling them that he is covered and they can treat him. Up until this point, there has been no treatment, merely observation, I speculate. I don’t know what time it is, or how long we have been waiting for The Phone Call, or even what “treatment” means at this time.

While I’m standing in the spotlight beside his bed, John suddenly takes his left hand and lifts up his right hand and arm. While saying “look!” he releases the right arm and it falls sickeningly to the bed. Neither of us knew what that meant at the time. It’s probably a good thing we did not know because Fear would have caused me to faint.

I vaguely remember being in an adjoining hallway with some cabinets and a phone on the counter. All of a sudden it rings and The Scrubs pick it up. They tell me it’s The Phone Call and they can now treat John. Relief spreads through me in little waves. I want to believe it is big waves but I don’t dare risk letting go of the dark Fear I’m clutching in my soul. I discover John has been whisked away from my spotlight. My thinking is so unlike my normal self. The cloud-fog is back in force because the spotlight is gone. Everything is so empty.

Later, in another more private room, not the emergency room, The Scrubs tell me they’re trying to stabilize John and keep his heart and blood pressure normalized. He’s on a monitor that sets off an annoying alarm every time he’s in danger. We now know it is definitely a stroke or Cerebral Vascular Accident. He’s had two.

I opt to sleep in a chair next to his bed overnight. His heart monitor alarm goes off and wakes me every hour or so. The Fear Cloud is becoming thicker. I run down to the nurse’s station repeatedly to tell them the alarm is going off. The Scrubs there give me the distinct impression that they can’t be bothered with coming to John’s room yet again to turn off the poisonous alarm noise spewing from the machines connected to John. 

This continues for more hours than I can track in my sleepless haze. There are far too many “whys” stomping through my brain leaving sucking noises in the muck.

Morning looms, I think, in this windowless room on February 13. It must be morning because there is the noise in the hallways of more activity. When John awakens he can no longer speak. Overnight, the swelling in his brain caused by the stroke has damaged his speech center, I later learn. Another series of “why” is jolting through my thought patterns as if I was speeding through a race over hurdles. Each hurdle a “why” appears, I leap over it, and pass on to the next hurdle. 

At one point, The Scrubs enter and tell me I may as well go home and get some real sleep. Apparently John will sleep for many more hours and there is nothing I can do. I will need my rest. I’m wrenched from the windowless room but I must have found the car I had parked the day before. 

I don’t remember driving home, either, as The Fear Cloud follows me.

The book, "Don't Stop the Music: Finding the Joy in Caregiving" which tells the entire story of the stroke with the Lessons Learned and Solutions for Caregivers will be published in late 2014.

You can view John's facebook page for the complete chronological story of his life and stroke at:
https://www.facebook.com/pages/Dont-Stop-the-Music-John-D-Swan/260829299098

Please feel free to share these posts with others and reply, with credit given.


2013 Nancy Weckwerth

Confessions of a Caregiver 1: The Phone Call

This blog is written to share my experiences, feelings, and growth that have occurred as a result of becoming a Caregiver for my friend and partner, John D. Swan. He had a massive stroke on February 12, 1991. 

There is no terror worse for me than getting that initial Phone Call telling me something had happened to my husband and he was being rushed to the hospital. He had been at a rehearsal with a small group of jazz musicians and collapsed. They were working out the tunes for a new album. I truly don’t even remember who called. It was February 12, 1991, two days before Valentine’s Day. The Phone Call told me it might be a stroke.

All I recall is a numbness setting in to my brain like a dark gray fog. Clarity went out the door for a walk – a walk that has lasted a long time. The clarity that left was that of knowing what my plans were for the future. Up until The Phone Call, my life was that of a professional musician. Each day consisted of a minimum of three hours of practicing my horn, some time writing music, performing, [depending upon what jobs or gigs (as they are called) for which I was hired], and then whatever else was in the date book. As far as I knew at this moment, this was still my life.

My husband, John D. Swan, was a very fine trumpet player. We were living in southern California. I play [French] horn and piano. We’re both composers. We’ve been publishing the music we write for about eight years now, through our own company, Trombacor Music. We also compose whatever music is required for the next gig in the date book.

When The Phone Call came, I was at my part-time job at the retail store. Since John had the car, I borrowed a car from a friend and left work to drive to the hospital, 35 miles away, to be with John.

As I drove, my thoughts were spinning. I remember thinking at one point, this is the end. This phase of our life is over. I sensed it more than knew it. In one extremely brief meme, I was sorry we had not had a child to carry his incredible talent genes to another generation. I tossed out that meme with the bath water quicker than it had appeared. It never returned and I am more than grateful for that now.

During the drive, financial panic set in until I remembered that John now had health insurance. It was a mere ninety days since he had gotten it from my employers. I was immediately grateful and relieved. 

The next panic meme was sticking me like a voo-doo pin. How will I pay the rent in sixteen days if John’s income from gigs is gone? What about the child support payments for his adopted son living very far away? Food, gas, phone bills, car insurance? A million pins were sticking me. I was quivering and trying to drive.

I don’t remember the drive, only the voo-doo pins. And the dark gray fog. 

The book, "Don't Stop the Music: Finding the Joy in Caregiving" which tells the entire story of the stroke with the Lessons Learned, and Solutions for Caregivers will be published in late 2014. 

You can view John's facebook page for the complete chronological story of his life and stroke at:

https://www.facebook.com/pages/Dont-Stop-the-Music-John-D-Swan/260829299098

Please feel free to share these posts with others and reply, with credit given.

2013 Nancy Weckwerth