How I Made the Most Common Mistakes You Can Possibly Make When Hiring a Formal Caregiver

Glamaris Valentín Cameron

Migentegrande.com

While dad was an active and independent older adult, my brother and I once talked about long-term care for him. I remember that we had great hopes about it. “If we had money,” we would hire nurses to provide round-the-clock care and mom would only have to love and keep him company. The conversation did not go beyond a dream that led me to play the lottery more often than ever before. Today, I believe that it would have been more productive to research and ask how much a caregiver charges and other details that I learned the hard way.

Even when dad got sick, I never thought about the future. The search for a prognosis for him consumed every minute of my existence while mom took care of him as best as she could at home. As the disease progressed, the care he required became more complex, and my mom’s health deteriorated. It was then, when the problem was in plain sight, that I started exploring in-home caregiver solutions.

A Flyer

This was my only experience: five years earlier, dad was hospitalized three times due to open heart surgery complications. The time came when my brother, mom, and I were simply unable to provide the care he needed and I called an informal caregiver or companion who distributed flyers at the hospital lobby. It turned out that the caregiver was not a nurse, but a companion, and kept talking to dad the entire night. My dad, who was a very sociable and good-humored person, asked me to never again leave him with that person. “Once was enough,” he said. I talked to the nurses at the hospital and they explained to me that they could get a nurse to take care of dad for $110 a night. The licensed nurses who worked during the day in the same hospital were the best thing that could have happened to us. We could sleep at ease and dad rested without unnecessary interruptions. However, the financial investment was enormous.

The First In-Home Nurse

My father recovered from his open-heart surgery and kept healthy and active for more than five years, until he was diagnosed with a little-known condition called Lewy body dementia, which combines Alzheimer’s and Parkinson’s symptoms. He started having sleep disturbances, losing torso mobility and even his memory. Overnight, dad needed 24-hour care for everyday tasks. We decided to hire a nurse so that mom could sleep at night, and I considered calling one of the hospital nurses who took care of him five years before. I kept the names and phone numbers of four of them. I only got in touch with one, and I was touched when she remembered dad as “the man who wore a beret and read the newspaper every morning.” The young professional worked rotational shifts in a new hospital close to home and began taking care of him on the days her shift allowed. During the second week, mom had a big scare when she saw the nurse in front of the house, with her eyes closed and her head on the steering wheel, on a night that she did not have to take care of dad. “I thought she was dead and knocked on her window,” mom told me. The reality is that the young nurse seldom slept (maybe once a week) and did not even remember how she had arrived at our place. Mom grew really concerned for her, especially on the nights that she didn’t come or give us a call. With a heavy heart, I had to ask her not to come anymore. We learned a lot with her, from how we should protect the bed to techniques to get him dressed without hurting him. There is nothing like a licensed nurse.

References

We were left without a night nurse, and mom’s lack of sleep really worried me, but I couldn’t stop working to take care of dad. Several friends suggested in-home companions with excellent references. The first one that I called told me that she took care of a friend’s relative for some time, but that what she loved was cooking and she had found a job in a cafeteria. The second reference was spectacular: a group of three companions that had taken care of the mother of a mutual friend. They organized the shifts themselves so that nothing would be amiss. The “organizer” paid us a visit, talked to mom, and met dad. It all seemed perfect, until the companions found the area where my parents live to be withdrawn and dangerous. They never came back. I must clarify that my parents live next to the Luis Muñoz Marín International Airport, so you couldn’t live in a more central location in Puerto Rico even if you tried.

How did I Choose the First Caregiver?

By now, you must be noticing that I had been making many mistakes when choosing a caregiver for dad because I didn’t have information and a protocol to follow. I can now list my mistakes accurately thanks to “La Guía del Cuidador, información valiosa si estás a cargo de un ser querido.” This was a useful printed guide created by Triple-S Advantage that mom brought home after a medical appointment (and which I discovered months afterwards). On pages 20-21, the guide offers recommendations for before and after interviewing a possible caregiver for your elderly parents. Of the 15 recommendations provided by the guide, I only knew of one: “Clearly agree on a salary.” The rest I learned when it was too late.

Exceeding Our Budget

Dad had zealously saved some money for when he fell ill. But we didn’t know whether those savings would be enough.  A licensed nurse, or even a nurse practitioner, would definitely exceed our budget. I went back to my terrible tactic of browsing through flyers, but this time in my community pharmacy. A company advertised companion care services, and without even thinking of the problems that we had faced before, I made a call. They sent over a wonderful companion. A few weeks later, seeing that everything was going well, the companion herself suggested that we paid her directly, since the company barely paid her $7 an hour. We paid the company $10. Once again, without corroborating, I accepted this arrangement. Fortunately, this companion had been the administrator of a retirement home, was very professional, and never failed us as she provided services for the following three years. Thus, she became part of our family.  However, as my dad’s disease progressed, the care required became more complex, and mom and I didn’t even have the strength and knowledge needed to move him from the bed.

Six Months of Waiting

From the moment dad had mobility problems, we requested that the VA Hospital in San Juan provide a nurse who could bathe him at home and a home health aide to prepare his meals, at no cost. Dad was so sick that these services were immediately approved, but he ended up on a waiting list for six long months. The process usually moves forward as follows: when the time finally arrives, the Veterans Administration assigns a private company to hire the patient’s nurse and home health aide. In our case, we were only called by a company that gave us the name for the nurses and a short list of what they could and could not do. The long-awaited call lasted only 12 minutes. The arrival of the two home health care professionals changed my father’s health entirely. The nurse in charge of bathing him told us which products to buy to improve his skin, and the home health aide assigned to prepare his meals also happened to be a graduate nurse in the process of passing her board exam and obtaining her license.

They Changed Our Lives for Better and for Worse

It turned out that the licensed nurse in charge of bathing dad had personal issues that interfered with her work. She would answer incoming phone calls screaming and arrived for her shift already very stressed out by unpleasant situations that she faced with the patient from her first shift. Two weeks in, I noticed the situation and talked to my parents about it. They told me they trusted her, that her strong character helped dad move and that they preferred to retain her services. However, when dad started losing mobility, the nurse tended to raise her voice. I put a stop to this and had a conversation with her on the matter. I also talked to dad’s geriatrician and she confirmed that this behavior did not stimulate the patient, but instead frustrated him. So as to not affect the nurse’s job, I talk to her several times and asked for her to request a transfer from the company that hired her. Many weeks passed and she did not request the transfer. Therefore, I called the company and requested it. At that moment, I did not think of the other patients who had to face the nurse’s emotion management problems. My priority was for her not to lose her job, and yet it was the worst decision I could have taken at the time!

Meanwhile, the home health aide did an extraordinary job. She put into practice her studies and knowledge to help dad in different areas and even saved his life twice when he choked with food. So, my parents and I encouraged her to study and pass her board exam, hoping that she could eventually become dad’s new nurse.

The Plan We Hoped Backfired

Our home health aide passed the nursing board exam effortlessly. Back then, dad was in a very delicate state and could not congratulate her as she deserved, but mom and I celebrated her success effusively. The following week, on a Thursday, she arrived at our home very upset and explained to us that the company withdrew her from our home. The company never notified us of the change and we clung to the hope that it was all a mistake. The following Monday, the home health aide that was with my father for a year and a half did not arrive. She was never assigned to provide care at our home again.

It turns out that another family had also confronted problems with the nurse who had emotion management problems. The granddaughter of that family heard the nurse address the patient with foul language. The family immediately asked for her removal. The only nurse available at the time was our adored home health aide who had just passed her board exam, which is why the change was made. As dad’s caregivers, this was the worst blow that mom and I ever received. I admit that if I had made a formal complaint, both to the private company and to the Veterans Administration, we would have protected the rights of other patients and their families in a timely manner. I regret not speaking out about it.

A Parade of Nurses

Because the other affected family’s request was urgent and there was a shortage of professionals, the company started assigning different nurses and home health aides, to the point where we had seven different people over the course of a month. At that time, I filed a formal complaint against the Veterans Administration, but the change of company took three months. The parade of caregivers included a nurse that smoked and a home health aide who didn’t know how to cook. The rest were excellent professionals who warned us that they had their shifts full with other patients and could not stay with dad. The company only called us once to tell us about the first new caregiver; the other six arrived without any notice. The large number of different caregivers quickly affected dad’s mental stability and emotionally drained mom and me.

Lack of Supervision and Quality Controls

The long-awaited change of company in charge of hiring nurses and home health aides for my dad (as a Veterans patient) finally happened. We got a call from a new company, and a week later, during a home visit that lasted two hours, they explained to us in detail the duties and responsibilities of a nurse and a home health aide. The new company hired a graduate nurse to perform the two roles, a decision that greatly benefitted both mom as a caregiver and dad as a patient. We felt stable at home once again. At the end of the new nurse’s first month, the company called to interview us and evaluate the service provided. After dozens of questions, we confirmed that the problem we had faced went beyond deficient nurses; it was the first private company’s lack of supervision and my timidness in complaining that led to these circumstances.

 You can’t imagine the kinds of things I thought. I could have benefitted from using “La Guía del Cuidador” from Triple-S Advantage to supervise and demand better services for my dad. Today, I now know there is a “booklet” to help take care of our older adults.

I receive messages on a regular basis from caregivers asking about dad’s health. He earned the respect of his caregivers for the optimistic way in which he coped with his serious condition. One of them, the home health aide who passed the nursing board exam (and who was taken away from us without notice) came to visit him on her free time. I was taking care of dad then. She came to the foot of the bed and said, “I miss you very much,” and dad, who had started experiencing communication difficulties, told her, “I miss you, too.” Our home was filled with love towards Mi Gente Grande.

For more advice and real experiences from caregivers who help older adults, visit us at migentegrande.com and facebook.com/migentegrande.