""Nancy Weckwerth has written a powerful book that guides the reader through the practical issues that arise when we face life's sudden changes. At the same time, she supplies a deeply inspirational and authentically emotional look at living with celebration amidst the transient nature of existence. The reader is left with a clear feeling that, with love and willingness, everything and anything can be integrated into a well-lived, well-loved life.""
-William Martin, author of The Caregiver's Tao Te Ching, and The Parent's Tao Te Ching.
""Don't Stop the Music is a narrative of John's acceptance of his disability and Nancy's transformation to a caregiver. Nancy shares their journey through every triumph and challenge with honesty and openness. Her insights disclose the light, the lessons, and the laments that guided them across uncharted territory from surviving to thriving.""
-Martha Paterson OTR/L, CHT
Artistic Advantage ~ Performing Arts Medicine
Author Nancy Weckwerth has created a ""survive and thrive"" manual for Caregivers. Based upon over twenty-five years of caregiving for her friend and partner, John D. Swan, the book describes how to find the joy in caregiving. The wisdom within is meaningful for any caregiving situation
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About the Author
Nancy Weckwerth holds the Master of Music degree in Performance, the Bachelor of Music degree in Music Education, and the Certificate in Composition for the Music Industry. She has over 25 published musical compositions and arrangements. In addition, she has 3 prose articles published in professional music Journals.
She currently works as a REALTOR® in Southern California.
Her hobbies include making pottery and jewelry. Ms. Weckwerth volunteers regularly as a Foster MomKat for abandoned kittens, working with several non-profit pet adoption agencies.
Read an Excerpt
Don't Stop the Music
Finding the Joy in Caregiving
By Nancy Weckwerth
Balboa PressCopyright © 2015 Nancy Weckwerth
All rights reserved.
Emergency! A Life Changing Event
The Phone Call hit me with a terror I had never felt before. My life-partner was being rushed to an ER. 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 settling on my brain like a dark gray fog. Clarity went out the door for a walk–a walk that lasted for many years.
Up until that moment, my life is that of a professional musician. John and I live in southern California. He is in demand as a trumpet player. I play (French) horn and piano. We are both composers. We have 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. For me, each day consists of a minimum of three hours of practicing my horn, some time writing music, performing, teaching, or working at a local retail store. I am happy in the certainty that this is and will be my life.
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.
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 moment, I was sorry we had not had a child to carry his incredible talent genes to another generation. I tossed out that thought 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 panicked thought 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 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 do not remember the drive, only the voo-doo pins. And the dark gray fog.
Looking back on that drive now, it is interesting that I was not thinking about John's condition. Since I knew nothing more than it "might be a stroke", and I knew nothing about strokes, I did not have enough information to think about that. All of the other emotions and thoughts about security are the ones that leapt into my head. Suddenly I was out of control of my thoughts. I needed to control the car.
* * *
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 is still February 12. The dark gray fog is hanging over my head. I must remember where I have parked the car, the one I've borrowed from a friend.
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. Fear is 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'm not amused by my own half-hearted attempt at humor.
When I find John he is relieved to see me. His bed is in an empty black space that must be a large room. 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. We chatted, I guess. I have no recollection of what we said to one another. Little did I know that these were the last real conversations I would ever have with him.
The Scrubs 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 is probably a good thing we did not know because Fear would have caused me to faint.
He was having another stroke. This second event paralyzed his right arm immediately. His right leg was gone, too, but we didn't know it yet.
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, after finding John in a more private room, not the emergency room, the Scrubs tell me they are trying to stabilize him and keep his heart and blood pressure normalized. He is on a monitor that sets off an annoying alarm every time he is 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. In my opinion, the Scrubs there give me the distinct impression that they cannot be bothered with coming to John's room yet again to turn off the poisonous 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. John awakens for a moment every now and then. I don't know if he knows where he is, or who I am.
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 must have found the car and driven home, but I don't remember any of it. Only the Fear Cloud that followed me home.
* * *
It was Valentine's Day: the morning of February 14, 1991. I had rustled through John's dresser at home looking for clothing for him and discovered a brand new woman's blue sweater in one drawer. I realized that it was his Valentine's present for me. I decided to wear it. After having spent the rest of the previous day making arrangements with a friend to drive me to our car, I drove to the hospital. The ever-present Fear Cloud was still with me. It had now settled into a large knot in my stomach. Breathing was challenging because my chest was so tight. At least I was warm in my new sweater.
When I arrived in his room, an awake John could not greet me because his speech was completely gone. Another shock. Overnight his brain had continued to swell from the stroke damage, and he was unable to speak. More and more of "John" had been whisked away during the night.
He saw the blue sweater and reached for me with his now only working arm, his left. He grabbed my arm and tugged on the sweater with the hint of a smile. Facial muscles were not working right either. That hint though, told me that he was still there, inside the cocoon of brain damage. I sputtered some words of comfort and he turned away from me towards the wall, refusing to be a part of life.
A moment of pure divine inspiration came to me and I said "John, this did not just happen to you, it happened to us. We have two choices here, we can do this well, or we can do this poorly. You and I will choose to do it well." In that moment, John made a choice. He turned back to me and with his eyes, he told me "Yes". We had made a pact. We became a different team. We had always been a team as musicians, now we had unwittingly become a team for "rehabilitation from stroke" even though that entire term was unknown to us at that time.
It is impossible to describe the POWER we both felt, together, at that moment. The Cloud was starting to dissipate.
Later that day John was moved to yet another room. This one was private. A White Coat finally arrived to talk to me. It was my first conversation with him. I asked him what a stroke was, because I really didn't know. I was so naïve. He explained what it was and told me that John would not be able to work for at least two years, and probably never again.
Anything else he said to me went unheard after that announcement. When he left the room, I literally crawled on the floor and hid under John's bed and sobbed. John slept through all of this with the head end of the hospital bed raised. I don't know how long I sat on the floor, in my private space of collapse. Eventually, I crawled out from under the bed and faced The Cloud from a position of strength. I had to. There was no one else to help. John and I were alone in this new and unfamiliar path.
John remained in the first hospital until he was fully stable. Then I was told he would be moved to a hospital closer to our home that was on our insurance plan. On the appointed day, I waited at the second hospital for him to arrive. I waited several hours, or at least what seemed like several hours to me. Time had become a non-entity for me. I was always either waiting or moving to the next situation to wait. The Cloud-Fog was never gone. It just gave me moments of respite, only to return when I was not looking.
I think it was either the fifth or sixth day after the stroke when John was moved to the second hospital. I only remember seeing him come down the hall on a gurney and saying to the driver, "This one belongs to me!"
The days were now a blurry haze within The Cloud-Fog. I had gone back to work after three days off. Now I needed the money from my barely-above-minimum-wage part-time job. Gratefully, I was the manager of the department in which I worked. The first thing I did was to give myself a full thirty-five-hour work week to increase my income. They needed me there more, anyway, so it was a win-win. I had flipped into "solution" mode to solve our financial concerns.
Well, my concerns. I quickly realized that John was no longer a part of the financial team as an asset earner in our household. He was now a complete financial liability. The full realization of this fact was an explosion of dirty-bomb capacity on my time and awareness.
All the "whys" of the previous days since the curtain dropped had now turned into "hows". My thoughts revolved around "How was I going to provide the income? How was I going to find the time to hold down a full time job? How was I going to support him emotionally, physically, psychologically? How was I going to get him back to normal?" I actually believed normal was still possible.
At this point, I added another layer of duty to my roster. John refused to eat hospital food at the second hospital as he had at the first. So, I cooked his food each evening, and brought it into the hospital for him each morning when I visited at 7:00 a.m. The kinder Scrubs at this hospital were happy to refrigerate it and heat it for him at noon. In the evening after work, I went back to the hospital to visit and bring another meal for him.
It never even occurred to me at this time that I was heading down a path of no return. That path was one of permanent Caregiver to a person with a handicap. Each new self-assigned task was assumed without even a twinge of anger or resentment. There was no time to be angry or resentful. It just "had to be done", so I did it. I added layer upon layer to my schedule. I was in shock. It was months before the shock began to dissipate and I allowed the anger and resentment to drop in for a long visit.
After a week or ten blurry days of a regular hospital stay with minimal rehabilitation, John's insurance moved him to the rehabilitation unit. Since this unit had a reputation as being one of the finer rehab units in Southern California, I was delighted. I felt that now he would begin making some real progress.
On a daily basis, John received speech, occupational, and physical therapy. The Phone Calls at my work became a ritual. "Nancy, Line 1" became my new dreaded words as they bellowed over the retail store intercom system. Especially memorable were the reports from the speech therapist. Her statement, "John will never speak more than 150 words" still echoes in my nightmares. When I heard that, I did nearly crawl behind the counter in the store and hide again. This was not my definition of the "normal" to which John would return. I decided that somehow John and I would prove this therapist wrong. The seesaw ride for me from "pronouncement to determination" to "new pronouncement to further resolve" was now making me dizzy within The Cloud-Fog.
The Phone Calls continued ad infinitum as they came almost daily, and often more than once in a day. The telephone cord began to feel like a hangman's noose to me.
After two weeks in the rehab unit, the next life-shattering announcement from the White Coats was that there may be a cheaper way to do this. Something inside me snatched those words and etched them on my forehead, even though I had no idea what they meant at the time.
It became clear a few days later when The Phone Call came that John was being moved in an hour, to a Skilled Nursing Facility, abbreviated, SNF.
They had to be kidding. I was told to get there to register him. I felt as if I was swimming upstream in icy unknown waters again. The "whys" returned. "Why are they taking him away from this wonderful hospital. Why are they placing "normal" further from his and my reach?"
I was so alone. I could barely breathe with the rope squeezing my chest.
I now know that this was only the beginning of many ridiculously short notices for massive changes in the system in which John was hopelessly entangled.
In my effort to remain as cheerful and supportive as possible in front of John, I arrived at the SNF with a smile on my face and went to the reception desk. After an introduction there, the young gal at the desk took out her clipboard and began questioning me. When I quickly answered her third query and gave his social security number, she asked "How do you know that so quickly?" I was shocked by her comment. Why would I not know my life-partner's social security number, especially since I had had to repeat it about four thousand five hundred and seventy-six times since the curtain fell?
Excerpted from Don't Stop the Music by Nancy Weckwerth. Copyright © 2015 Nancy Weckwerth. Excerpted by permission of Balboa Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Life is Transformed, vii,
Foreword by Dr. Engel, ix,
Foreword by Dr. Peterson, xiii,
Introduction: About this book, xix,
Chapter 1 Emergency! A Life Changing Event, 1,
Chapter 2 Paradigm Shift: Embracing Change, 16,
Chapter 3 Finding Balance between the Health Care System and Personal Well-Being, 36,
Chapter 4 Happy Accidents are Miracles and Gifts, 57,
Chapter 5 The Caregiver's Health, 76,
Chapter 6 The Survivor's Health, 100,
Chapter 7 The Long Road: Physical and Occupational Therapy, 127,
Chapter 8 Silent No More: Re-learning to Speak, 146,
Chapter 9 Socializing Again: The Joy of Forgiveness, 165,
Chapter 10 Re-creating the Joy of Travelling, 177,
Chapter 11 The Pro-Active Caregiver: Patient Advocacy, 200,
Chapter 12 Moving through Mourning, 217,
Chapter 13 Don't Stop the Music: An Incredible Sense of Purpose, 235,
Chapter 14 A Triumph of Spirit: A New Kind of Music, 258,
Epilogue: Don't Stop Your Music, 281,
Appendix I, 289,
Appendix II, 297,
Appendix III, 311,
About the Cover, 319,
About the Author, 320,
Most Helpful Customer Reviews
Nancy's book is so powerfully written. My life was changed by a major tragic event back in 2012. Nancy's vivid accounts brought us back to that moment. It deeply resonates with our own experience. It is amazing how she prevailed. The tips she shared is spot on. Thank you Nancy!