Caregiving in Cuenca: My story
By Miriam Drake
It is challenging, anywhere in the world to care for a husband whose health has deteriorated to the point that he cannot speak, one side of the body is completely paralyzed, and he has no sensations in his core. In Cuenca, Ecuador it is beyond challenging. All the systems here are designed around the assumption of large family groups, with a male at the helm. My Ecuadorian-American husband used to be at the helm. Now it’s me, armed with my high school Spanish and a will of steel: to keep him alive, safe, and improving. I was alone. I was not prepared for this.
He was hospitalized for a massive stroke, then a week later for a failing bladder, then a month after that with a huge, infected and leaking gall bladder that had to come out. All of this happened in 10 weeks. Welcome to the medical system! Welcome to your new world! It was an explosion of stress and sadness!
The bright side was that friends rallied. But it actually takes more than friends, it takes someone else by my side constantly to help me make decisions, to lift him, bathe him, run errands, even to simply think! Take inventory of medicines and medical supplies, place calls, cook, clean, and much more.
Enfermeras, who are nursing assistants who took classes to become glorified babysitters, are not all equal. Some are quite good, but the majority quite poor. Most do not know to wash their hands before touching a patient, or after being in the very germy hospital for hours, or how to make a bed or how to shave a man’s face. The going rate for a Spanish speaking enfermera was $3.50 per hour back then. We used an enfermera agency, but later, were lucky to find Carmen, who had previously worked in U.S. nursing homes, spoke English and was a very effective advocate for my husband in the hospital. She actually ran and chased down a cardiologist who was headed down another hallway. He came back with her to talk with my husband and me. She earned $5 per hour and was worth a lot more.
Since I have no medical training, I learned new things every day about medicine and about the emergence of new medical problems. My medical Spanish grew with each problem. I invented the wheel every day, and every minute solved problems, found a better way, found out where to go, how to do it, planned ahead, worried, anticipated, and headed off catastrophes. I learned how to clean a wound that would never heal, ever. It was always something. And it would have helped if I had been prepared, had enough help, and had known what to do to care for the sick person step by step, not to mention getting enough sleep and rest. Stress and burnout became something I lived with daily, and my health was at risk. I lost bone mass in my jaw and back. Not good, but I kept on going. What else could I do?
There were plenty of sunny, funny moments, many bright spots when my husband and I looked at each other and burst out laughing. Finding the humor in the dark moment had survival value. Dumb funny things happened like the way he always had one fall after the first day back from each hospital stay. Every time, without fail, he fell. Another funny thing happened the time he kicked my laptop off the bed. Real funny that was … it cost me $350. Then there were the times when riding in the back of a cab, my sweetheart turned to me and said, “mamita”, and I quickly replied, “mamita linda”! Even the cab driver, our dear Walter, laughed along with us. Friends became family all of a sudden. It was a good thing too. Then there was the time in the ER when he was close to death, and began singing “Besame, besame mucho”! I was in stitches and full of love for my precious man. The doctors standing around him enjoyed the moment with us!
Speaking of doctors, the doctors here are what make the health care system work. I am not kidding. Without the quality of doctoring (not all, but most), the whole thing would be a mess, like India, or worse. Four times in one year my husband’s doctors saved his life. He had plenty of opportunities to check out, yet these alert and skilled doctors rescued him from the abyss: Drs. Rodas Jr., Rimbaldo, Celi, and Estevez.
And by the way, the hospitals rely on the presence of large family groups, rather than nursing staff competence, patient monitoring equipment and shared information. Always there is a family member in the room, or the whole family encircling the bed. They help the nurses with lifting and bathing the patient, and running errands. Out of medicine? end a family member to the farmacia. No need for the nurses to pay close attention to the patient, the family will call for the nurses when there is a change in the patient’s status. It’s a good system except that I was there alone, really alone. And stressed. No one was standing by my side helping me think. But the nurses expected me to lift him! And behave as if I were a large family group…all by myself! What? This in addition to everything else I was doing? No way! I didn’t have the energy, or literally the back for it! I hired a nurse from the ward to do private duty during the night so that I could go home and sleep. She kept him out of harm’s way while I rested. Next morning, I returned after a good night’s sleep, and found no catastrophes awaiting me. That was a nice change.
Both private and public hospitals need larger intensive care units to accommodate the needs of the sick. Both times that my husband’s condition required him to be in intensive care, there were no beds available, so he stayed on a med-surg floor. Not good for a fresh stroke patient needing close observation. Not good for a complicated, at risk, gall bladder surgery patient. Did I mention the lack of monitoring equipment at the bedside???? Another fun fact is that the doctors do not share information about the patient, so the nursing staff, who do not read the charts, didn’t know why my husband could only babble. He couldn’t speak! They didn’t know he had survived a stroke! Dangerous. Anything could have happened to him. And did. I had words with the Medical Director, actually. He was not pleased by my presentation of the facts of hospital care. Shook up the medical staff. Too bad.
We tried hyperbaric medicine with David Korchak and it helped a bit. Due to the vast number of decimated brain cells, my husband did not bounce as both David and I expected, or had hoped he would. So, I stopped the treatment, and yet was still unable to recognize the possibility that this was as good a recovery as my husband would achieve. I kept trying until the realization ultimately dawned on me.
Cuenca is a good place to die. The bright spot is FASEC, a nonprofit palliative and hospice care facility that runs on donations and kind volunteers. Squeaky clean and tightly run, don’t let its bare, basic furnishings fool you. This place and the people who run it are awesome professionals by any measure.
To be admitted to FASEC, just call or go pay the administrator a visit. You can elect in-facility or at-home care. Marcello in the main office, is an R.N. and the administrator. He’s wonderful and his Spanish is better than his English, but you will understand each other.
I learned many things from the day of my husband’s stroke through months of change, emergency surgeries, rehab, adjustment, problems, stress, complications, mess ups, infections, shingles, and the finality of death a year later. This experience saddened and enlightened me. After the dust settled, it became clear that no one would want to go through what I had. So, I made notes of everything I had learned during that time, and organized the information into a manual. When it became clear that a live teaching format coupled with the book would help people most, I offered this information in informal seminars, “Expat Medical Emergency Preparation”. These were attended by Cuenca expats who wanted to prepare a structured support system for themselves. The book of the same name is still available for purchase.
I cannot stress this enough: It is clear that we must form our own expat-large family group for mutual benefit, which I call our “Care Community”, if we want to survive medical crises and be cared for in a manner that will support us through the worst of times, may they never occur.
For those expats who wish to prepare for medical emergencies and end of life in Cuenca, the 2020 completely revised Edition of Miriam’s book, “Expat Medical Emergency Preparation Manual” is available for purchase. For more information about the book, and about her expat counseling services contact her: firstname.lastname@example.org
From 2015-2018, Miriam Drake, M.Ed., L.M.H.C., N.C.C., offered the seminar, “Expat Medical Emergency Preparation” which resulted in dozens of saved lives during and since then. She is a former healthcare administrator in Seattle, Los Angeles and San Diego. Later Miriam worked as a psychotherapist in a university counseling office and in private practice serving adults with grief, depression, anxiety and major life transition issues. Today she enjoys counseling others on their journeys, oil painting, world travel, learning new languages, Wudang and Yi Ren qigong practices, dancing, hiking and helping expats make improvements in their lives. She is the author of “Expat Medical Emergency Preparation Manual”, updated in 2020. For more information about the book, and about her expat counseling services contact her: email@example.com