Caring for the Caregivers

In an ideal world, all sick people would have a caregiver who could keep them company and give at least minimal medical care 24/7, or even 8/7. Un­fortunately, because of the way society (at least in the United States) is organized, work demands, financial demands, geographical dispersion of family members, and the nature of medical care make that impossible for many. In my hospital, I see many solitary, lonely patients who most probably have many loved ones who would, if they could, be with their sick relative.

My luck was different. I have 2 sons older than 18. At the time I was diagnosed, one had just finished his third semester in college and the other had just found his first postcollege job. Both temporarily suspended their own lives to be with me. One took a semester off college and the other took a temporary leave from, and then permanently left, his new position. Both traveled cross-country to a new city (the closest decent hospital covered by my insurance was 600 miles from our home city) to spend 8 months both in/near the hospital with me or at home with their younger sisters. Of course, my 2 younger daughters also sacrificed to take care of me: in seventh and ninth grades, they flew out as often as possible to sit by my bed and fetch me water, order food, and listen to my delirious rants when the medication took over my mind. They spent their summer vacation sitting with me every day, all day.

As the patient, I recognize the sacrifices each of my children made to help me through what I hope was the worst part of my illness. I am eternally grateful for both their existence and their family commitment. Given that they are my children, their well-being is my number one priority in life. So, when not asleep or too drugged to live in my own reality, I noticed every detail of how my nurses treated my precious caregivers. I must say, the recognition and respect given to my children/caregivers ranged from a 1 (horrific, mean, disdainful treatment) to a 10 (complete respect, recognition, and gratitude), with an overall average of an 8/10, or about a B- on a traditional grading scale. Was there room for improvement? Sure! Was I happy overall with the way most nurses treated my caregivers? Without a doubt!

So, for those nurses who want to improve their treatment of caregivers and those who want to know what I, as a patient, appreciate about your treatment of them, I have compiled my “Three Best Practices for Nurses in Their Treatment of Caregivers,” all requiring minimal extra effort on behalf of nurses, all of equal importance, and all incredibly important to me as the patient:

1. Greet the Caregiver Directly
   When a nurse first comes into my room, I notice whether she/he introduces her/himself to my caregiver (she/he always introduces her/himself to me). It does not have to be a long drawn-out greeting, just eye contact and a “Hello, my name is ________, and I am going to be the nurse for this shift.” From then on, a simple “Hi. How are you doing?” or something similar directed to the caregiver suffices. This greeting, or lack thereof, greatly influences my perception of how qualified my nurse is. After all, a nurse who is observant and courteous has probably been well-trained and recognizes that good medical care is holistic medical care—it includes not only scientific processes, but also the human component.
2. Make Sure the Caregiver Is Comfortable at Night
   This is the most oft-forgotten aspect of proper caregiver care in my experience. If the caregiver is going to spend the night in the hospital with the patient, it is imperative that he/she is comfortable. In my case, many-a-night my caregiver did not have sufficient blankets, pillows, or sheets for a comfortable stay. We constantly had to ask for them, and we often waited hours until they were brought, if they ever were. I understand the demand from patients for these necessities, but caregivers are an integral part of the care system, too (and they work for free, at least for the hospital!). If it is true that when the floor is full there are no extras to go around, then nurses need to make it known that the wash schedule or the supply quantities simply do not meet minimal needs. Please do not make us beg and constantly remind you. I, as the patient, need to get my rest (you, my trusted nurse, told me so!). I cannot do that if I perceive that my caregiver is extremely uncomfortable (have you ever tried to sleep with no pillow, sheet, or blanket on that vinyl expanding couch in the hospital room?). Please just make sure you remember to bring the bedding for my caregiver.
3. Acknowledge the Connections
   All the caregivers I meet in the hospital have a life outside of their caregiver role, and all give up something (free time, income, schooling, hobbies, time with other children, etc) to be there. Some are spouses who work and spend their off-hours in the hospital. Some are volunteers who spend a few hours sitting with strangers. Others are retired workers who pass hours on end at the hospital. Still others are children of patients. Regardless of the sacrifices necessary and regardless of whether, deep down, they want to be there, fate thrust them into the caregiver role. But, like all of us (including patients and nurses), they are so much more than that role; they are caregivers and _________ (fill in the blank: runners, “Twihards,” scientists, metal workers, students, unemployed teachers, grandparents, bridge champions, “Potterheads,” krumpers, or an endless combination of an infinite number of other roles). Some of my most triumphant moments in the hospital came when a nurse would comment to one of my caregivers, “Hey, I noticed you have on a Boston Red Sox cap. How are they doing this season?” or “You look like you might be in high school. I have a daughter who looks around your age, and she loves that book you are reading, too. What do you like about it?” It can be something as simple as comparing favorite colors, exchanging a few words that show you noticed something about the caregiver, or making a comment about a view outside the window. I know nurses are busy and often do not have time for small talk. Yet, when possible, such comments can be essential to lifting the morale of both the patient and the caregiver (and maybe even nurses) by creating a community of humans who get recognized for who they are outside the confines of the hospital. No matter how small the connection, there is one. Please just look for it.

I know that most nurses recognize that caregivers deserve undying respect. Apart from their function for the patient, let’s face it: they cover some of the duties that otherwise would have to be assumed by the nurse (do I hear helping the patient to the restroom, cleaning up minor accidents, getting ice, and filling water cups?). For those of you who treat my caregivers with humanity and care (even when you only get monosyllabic answers), thank you! For those of you who are really not too sure how to treat them, please try to implement a few of the practices mentioned above. We will all be better for it.

MMA is undergoing treatment for cancer. She wishes to use her initials.