Caregiver of the Month Spotlight
Barbara (Phyllis) Palmer
My name is Barbara (Phyllis) Palmer. In my personal life I am a speech and language pathologist working in private practice for the past 28 years, an artist who works in pastels and watercolors and creator of super sculpy fairies and angels dressed in silk flower outfits, a collector of antique dolls and a psychic/healer.
I was raised in Minnesota, moved to Buffalo for my first job as a speech pathologist, met and married my husband and moved across the country to settle once and for all in the San Francisco Bay Area.
In our younger days when we first met, we enjoyed folk and square dancing. We participated with a semi professional exhibition group. I loved the music, the feeling of being twirled around and lifted into the air by my Gene and the colorful costumes of the many nationalities we represented. (I am Polish so this was always my favorite.)
We have no children but have always had a home full of loving companions. Our home was filled with as many as seven cats at one time, three lively Jack Russell Terriers and three lovebirds. Our pets have aged and moved to the rainbow bridge where they await our arrival. Ironically, since Gene's became ill we lost one of our dogs and three beloved cats. One by one, they were diagnosed with conditions like their Daddy, cancer, liver disease and diabetes. Many friends have told me our dear kitties had given their remaining 9 lives so Gene would have more time.
Now our home is much quieter, our last cat died several months ago. This is not the time to bring a new kitty into our lives. Miraculously, another cat has chosen our house to watch over. It comes by daily and just sits in the driveway or by our front door watching our house. I feel protected and safe knowing this being has chosen to watch over us.
Or should I say, I was all the above and more until my beloved husband and soulmate of 43 years became seriously ill with two terminal conditions and I became his caregiver and the one responsible for keeping him alive. It has been a difficult and lonely journey but something I do lovingly for the one I love more than life itself.
Let me start by saying that Gene is a remarkable man; a retired attorney and CPA. He has been on a spiritual quest for many years and has proven that he lives what he believes even with a body ravaged by illness. Gene has given me the strength to be different and to take responsibility for my actions and my beliefs. This has created roadblocks dealing with a medical system that is not geared to work with "out of the box" medical conditions and caregivers who advocate for what they believe to be right.
My Gene was diagnosed with esophageal cancer two and a half years ago. It took us both by surprise and changed our lives completely. The doctor was doing a routine endoscopy looking for varicies from the cirrhosis diagnosed the previous spring. Gene had almost died from draining too much ascites fluid from his abdomen without replacing the albumen. For almost two months he was totally dependent on me. But esophageal cancer was what the two biopsies confirmed and the liver problems were put on the back burner.
Surgery was scheduled and Gene passed the preop physical that fateful March morning when our lives would change completely. I had been telling all the doctors for weeks that something was desperately wrong but they wouldn't listen to me. As caregiver I knew every subtle change in Gene's system and would standby helplessly as his symptoms of encephalopathy increased. After all, surgery was his only chance to have additional years for without surgery Gene had only months to live. For esophageal cancer is very aggressive and never goes into remission without equally as aggressive treatment.
But that evening Gene fell into a coma; it was determined he had a mild bladder infection that threw him into liver failure. Surgery was no longer an option, nor was chemotherapy or radiation unless Gene wanted to die with his boots on as the oncologist informed us. Gene was in liver failure and could not survive any form of treatment. His system was so delicately balanced that tweaking him ever so slightly caused him to crash. More words of encouragement from our oncologist. Gene was sent home to die and I was left without a support system to make whatever time my husband had left meaningful and comfortable.
In July, 04 Gene went into home hospice for comfort care. The ER had already told us that people in liver failure were not sent to the emergency room; what could they do for us. And our health plan system did not have outpatient palliative care services. The problem was uncontrolled encephalopathy caused by his liver's inability to eliminate toxins from his blood. Every time Gene was put on antibiotics he improved; a week after stopping antibiotics his symptoms overwhelmed his system. Through trial and error and fighting and pleading we finally convince the medical establishment that only the rotating antibiotics were keeping Gene alive. Normal bacteria in his body were depositing toxins that overpowered Gene's liver. As his Hepatologist stated; Gene would be dead in a week without antibiotics. Score one for the caregiver. It was my idea and my bull dogged determination that won that round.
Gene miraculously improved. Even his hemoglobin returned to normal and we stopped the Procrit. The cancer did not spread and Gene's liver stabilized with the antibiotics. I did some energy healing on Gene and we all prayed. Gene was discharged from Hospice in January 05 and I again became the sole caregiver and micromanaged his symptoms as best we could. Gene remained medically fragile and the slightest thing threw him into liver failure. He had already outlived his doctors prognosis and they were all helpless to do anything. Every doctors visit started with, "None of us ever thought you would still be here." And they all said Gene was alive because of me and my troubleshooting.
Recently, Gene entered another Hospice following a near fatal iron toxicity caused by a lab error. I relaxed a bit knowing we again had a safety net for the next crisis. We thought the hospice understood Gene's fragile condition and how his needs differed from traditional hospice needs. But after about four months problems emerged and attempts were made to discharge Gene for extended prognosis. Miraculously someone in higher authority than the medical director discovered what was happening and came to our aid. The discharge was reversed, Gene's doctors explained why hospice was appropriate and services we had been denied previously were suddenly available.
I am now getting the help from social worker and chaplain that were so long overdue. I'm worn to a frazzle, not eating or sleeping and trying desperately to keep Gene here with quality to life for as long as God sees fit. For some reason his time has not come.
I feel very blessed and grateful for each new day that dawns with Gene by my side. We try to live life to it's fullest and live in the moment. I wish I could say that happens every day. Unfortunately, with each passing month, I find myself more emotionally and physically drained. Anticipatory grief is very difficult to keep under control. I want to be there for my husband. I know we have not yet reached the main event and I'm trying to prepare myself for what lies ahead. This rollercoaster ride is taking my breath away.
If anyone had told me five years ago that this was to be the course our lives would take, I would have told them no way. We had everything we wanted; our health, financial security and always Gene's wonderful sense of humor. I certainly never thought I had the strength and resolve to swim upstream against the medical bureaucracy, to assume responsibility over my dear husband’s very survival and to withstand criticism for following what I know to be the truth. Gene had always been the strong one, he took care of me, I was totally dependent on him.
Our roles may have become reversed but our love and resolve to be there for each other has not faltered. We live on the edge of a volcano which threatens to erupt at any moment but our love has just matured and deepened and shown itself to be eternal. We see beauty in life even in it's most terrifying moments. And those of you who know me are aware of how frequently the tears flow and how long my sleepless nights become. But this journey of self discovery has been awesome. Friends have fallen by the wayside and new friends and fellow caregivers have come into my life to offer comfort and guidance. Would I choose not to have life threatening illness our daily focus? Of course, not. But would I change things, of course not. For “Thy Will Bd Done”..
Barbara Phyllis Palmer
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