How Not to Become Lost in Caregiving During a Pandemic
May 23, 2020
June 1, 2020

I Am Not A Home Health Aide


I didn’t train to be a home health aide and I don’t have a certificate to work as one, but recently I did an eight hour shift because there was no one else. The job of a home health aide is simple yet complex. As far as prerequisite qualifications are concerned unfortunately there are none that I know about. They enter a certificate training program bringing only their native intelligence, personal work ethic and quantity of empathy. The training is basic and includes some content on aging and disability. If I were to describe what a home health aide does, I would say they span the gap in activities of daily living between what the person whose home they work in can't do and what they need to get done. The tasks we all do ourselves without intentional thought, such as bathing, grooming, dressing, eating, toileting and taking medications would be on the list. After that home health aides are primarily observers. They have to be observant for subtle changes and take that observation to someone who can contextualize the problem and find its solution. While not a requirement, home health aides should possess personal qualities of patience and empathy. I was a caregiver for my mother who had Parkinson's disease. I was the night aide for several years. I didn't train to be a home health aide, but I work with dozens of them and I have on-the-job experience.

Annie doesn’t need much. She is able to walk and just needs a reminder to use her walker which she treats as an afterthought. She uses the bathroom by herself. She self-initiates a type of entertainment of watching out of her 10th floor bedroom window to see how the people are now lining up six feet apart in front of the pharmacy whose door is in the plaza below. My, how the world has changed. People used to be able to walk into the pharmacy, now they are queuing up to be allowed in. Lets see how long the line is at 10 am again at 2 pm and a final peek out the window to see if everyone in line has been served before closing at 5 pm. Watching the world go by is something that the homebound do. Annie knows that the world has changed. She knows that the president whose photo is pasted in her living room is not the current president and she knows that the clippings of the male ballet stars taped to her kitchen cabinets are retired from the stage. She knows where her pills are and that she takes them in the morning and evening, but she loses track of what is morning and what is evening, therefore needing a reminder of when it’s time to take them. The same is true for meals. Annie doesn’t need hands-on care or spoon feeding. She just needs structure for common tasks that we all do automatically at the right time during the day. She needs the judgement of another person so that her misperception doesn’t take her outside to the street or to the knobs on the gas stove.

The day before my home visit, a home health aide called 911 because her employer told her to do so. The home health aide had reported to Alvita Care that Annie was coughing. I would like to take a long pause here ask you to consider if you were Annie, Annie's aide, or someone who cares about Annie's well-being, what you expect that a paramedic can do about a cough. Can a paramedic make a diagnosis? No, but all too often they give an irrelevant opinion. Can a paramedic prescribe an antibiotic or cough syrup? No. It is a fact that a paramedic cannot evaluate a cough nor can they effectuate a good state of health. Alvita Care, like many licensed home care agencies operates with an implicit policy of box-checking rather than goal achievement. This means when a home health aide whom they employ calls into a clerical or clinical supervisor with an important observation suggestive of illness, the procedure as happened the day before my home visit, is to document that someone pressed the phone key pad nine, then one and one again. An observation of cough was made. Inexplicably, instructions were to seek a solution to a cough from the emergency response system. In the agency office, policies were adhered to, boxes were checked, asses felt unexposed, but nothing was resolved with the cough.

The day before my home visit, I received a call from Annie's health care agent who is not a family member but a contemporary, someone born between the world wars. They went to grade school together. Imagine having a friend for over 80 years, a truly committed advocate. I then called Annie who told me she was "fine," but I ordered a home x-ray anyway because the context of a cough right now is the prevalence of novel coronavirus. I knew Annie had viral pneumonia the evening before I saw her because the x-ray report said so. I could see it myself in the image of her lungs. This disease is not a subtle thing.

When I arrived for a home visit at 10:45 am the next morning, a night home health aide was still in the apartment, but flustered and frustrated that she was late to arrive at her next sequential day job because Annie's day home health aide was very very late. She was fussing and fuming, but knew that she could not leave Annie alone. Home health aides who are in 24 hour care situations are taught that they can not leave until a hand-off to the next shift is done. “Never leave the client alone.” This is part of their training and they do follow it because I suppose that leaving the client alone will result in instant job loss. On the other hand, a home health aide won't lose their job if nobody finds out that they work a night shift for one agency and then a day shift for the next and so on throughout the week. The laws have made it such that in order to avoid overtime pay, the cost of which is passed on to the client, they just don't work overtime for any one employer, but add up overtime hours by working for multiple employers. The novel coronavirus has made it such that we need to stop and talk about that. I arrived for a home visit knowing that Annie had viral pneumonia and I met a home health aide who had been in the home regularly for weeks and for long 12 hour shifts. She was late to go care for another homebound elder who needed help with bathing, grooming, dressing, eating, toileting and medications. I wanted to pin a button on her that said "disease vector." So let’s talk about that. When I was my mother’s night aide, I worked overtime too. This was a choice and a necessity just like it is for the home health aides who I work with. The laws have made it such that certified home health aides can't get shift hours to add up to 40 hours per week without going over 40 hours per week and that causes an agency to have to pay and pass on overtime expenses just to create traditional shifts. They now have to work for multiple employers for up to 36 hours. Home care is not suitable to the framework of shift work laws. Delivering home care is living in a dependent person's quotidian life. Caring for someone is a continuous job which does not fit with labor laws for construction workers, sales staff or anyone whose job has a productivity quota. The actual job tasks are intermittent. The purpose of home care workers is their presence, not their product.

Annie had been not herself for just two days. She had a little cough and she had been uninterested in dinner. She has been laying down more and telling the home health aides that she was tired. Home health aides are supposed to describe what they see. "She’s not herself.” “She seems weak.” They observed one incident of diarrhea, but Annie did not recall that. "She didn't eat dinner last night." I wonder if Alvita Care tells their aides to call 911 when they get a report of "didn't eat dinner," a very significant observation because loss of appetite is a symptom of novel coronavirus. The purpose of my home visit was to confirm how sick she was and determine if her medications needed to be adjusted or if I should be concerned about dehydration. Annie had fever high enough to warrant an antipyretic but not the highest I had seen. To my relief her oxygen saturation was normal. I called her health care agent and Alvita Care to communicate a diagnosis of probable coronavirus infection.

As I was on the phone, the day home health aide walked in wearing a mask and gloves that she had on her hands when she pressed the buzzer in the lobby, opened the door and pressed the elevator button marked 10. By definition, her gloves were invisibly filthy and the box of gloves in the home was nearly empty. On prompting, she removed her gloves, washed her hands and used Lysol wipes to frenetically and randomly wipe surfaces in the living room. After I explained that Annie had fever, cough and viral pneumonia by x-ray, she called her employer and walked out of the apartment stating, “I have asthma.” I didn't train to be a home health aide and I don't have a certificate to work as one, but I knew that I was not leaving the home of a 94 year old woman who was sick today and on a good day incapable of getting through the tasks we all do automatically. Alvita Care told me that the home health aide who walked out was a substitute. They had no one else to send to replace the replacement for today. They offered no solution to home care for today, but told me and Annie's health care agent that given the new diagnosis going forward they were willing to continue to provide home health aides at a premium cost, a sort of hazard surcharge. The novel coronavirus is hazardous to home health aides, but it’s not the same exposure as hospitals and nursing homes.

I made a total of three calls to Alvita Care during my shift as a home health aide and I had lots of time to do the math on their hazard rate for homecare. Annie's health care agent was offered to pay for two 12-hour shifts per day of health aides at a cost of $50 per hour compared to their usual $29 per hour. They would be doing the same job of preparing three meals each day, announcing "it’s time to take your pills" twice per day and being observers during the remainder of their shift. You see, home health aides don't work all day. They sit and make calls or send and respond to text messages. They sleep, because most of them are on a job for 12 hours and another job for 12 hours. I know what you are thinking. How many of those 21 extra dollars per hour were going in to the paycheck of the home health aide who had to wash their hands, wear a mask and disinfect surfaces? The executive director told me the home health aide's hourly rate would increase from $16.50 per hour to $25 per hour. Now that we have done the addition, let me do the subtraction for you. The home health aide is getting an extra $9.50 per hour while Alvita Care is getting an extra $11.50 per hour. The executive director told me it was for the "administrative costs." You know the cost of gloves, hand sanitizer and cab rides so as to avoid picking up pathogens on public transportation. I didn’t ask who was the beneficiary of the extra precautions. The grand total after multiplication comes out to $276 per day of gloves, hand sanitizer and cab rides. For how long, you ask? I didn’t ask that either.

I am a home visit physician. I am Annie's doctor, and part of the obligation of that role is to advocate and advise. It seemed to me that Alvita Care was perhaps trying not to care for the homebound who were infected with novel coronavirus. In March and April of 2020, that would be an impossible goal for a homecare agency in New York City. Statistically Annie can not be their only client with novel coronavirus since I was making the diagnosis in homebound people in four boroughs of New York City. Novel coronavirus got into the homes of the homebound in the same way it entered nursing homes. It was carried there by people who give care to those who can not care for themselves. The irony of a surcharge being deserved by the disease vector was not lost on me. I'm not a home health aide, so I don't do what I have seen them do for the last three months which is to walk into people's homes wearing gloves from the street, a mask on their chin and treat their phone like it’s a clean object. I consider my hands dirty and everything I touch contaminated at all times. There is only one place for the invisible pathogen and that is to wash it with soap down the drain. During my shift as a home health aide, I made Annie wash her hands several times after she put her hand over her mouth during a cough. I didn't take those actions to protect her, but she was now a risk to me and others if she touched the table, the light switch and her walker. While the disease gets to the homebound from us, those who can't care for themselves also need direction on how not to pass it on.

I didn't do much on my eight hour shift as a home health aide. I microwaved some leftovers and presented them to Annie for lunch. I found a dusty coffee table photo book about Annie's ancestral country, a place where I have never been and will never travel to. We turned pages together as she struggled to tell me something of landmark cities. Next I found a beautiful photo book on Paris, a city we had both visited. When she said, she would like to see Paris again, I honestly said it would be a long while before either of us could do that. Despite aphasia, and with effort, she and I together read the French text. We did the best we could.

Let me tell you who helped me end my eight hour shift as a home health aide. I called Nicole at Senior Helpers. Nicole went to the home of Annie's health care agent to sign the home care contract. I can only imagine the number of calls she made to home health aides asking who might want to show up for a new job right now. At 6 pm Nicole came to Annie's apartment to meet the new home health aide and I was able to hand off care to someone who after greeting us said, "Where can I wash my hands?" It was a long day and I had completed many tasks. I made a frightening diagnosis without really telling the patient how scared we were for her. I fired a home care agency. I got a new home care agency hired. I read two books, tried to speak French and used the microwave. I saw the worst and best of homecare all in one eight hour shift.

It is now a month later and Annie is truly all better. She is one of the lucky ones who never got sicker than she was that day. I am not a home health aide. I am a home visit physician.

Thyme N. Haff

Our era of sirens 2020 May 21