"Taking Care" (Part 1)
Being a caregiver is a peculiar type of “job.” No interview is conducted. No advanced degree is required, and contrary to other jobs, you receive no salary for endless hours of work. For other positions you need to apply and polish up your resume. Not so with caregiving. You are thrust into the job, usually without much warning or time to learn what may be required. Suddenly, you are juggling “hats.” You likely didn’t need another hat. You already have several. Perhaps you wear the hats of child, spouse, and employee. I hadn’t given much thought to the role of a caregiver until I became a cancer patient. Then I saw firsthand what my daughter and husband had to navigate as my primary caregivers. So, from what I learned, I offer expectations for others trying to manage their own life plus the life of another. Following are some of the roles I saw my husband and daughter assume throughout my cancer diagnosis, treatments, surgery, and recovery.
Advocate was the very first title I gave my husband (Frank) and my daughter (Becky). The word is full of endearing meanings. In the Greek, advocate (paraklétos) means: called to one’s side; intercessor; a counselor, comforter, helper, or encourager. We could all benefit from having one of those! Becky went with me to my initial oncologist’s appointment and insisted on going to any appointment when my husband was unable to. At the time, I told her it certainly wasn’t necessary. I said, “I am fine.” I’ll always be grateful she didn’t heed my claims. So we were introduced both to my oncologist and the word “cancer” at the same time. Even if your loved one doesn’t physically “need” you to go with them, it is comforting to have someone alongside at appointments. My daughter did more than simply sit there, however. She came prepared with a list of questions. Becky wrote down the answers while I hardly recall anything after being told I had an aggressive type of cancer. An advocate is prepared to do as little as you wish, maybe just stay near you, or as much as you need—maybe clarify statements and take notes. Being an advocate is not limited to appointments. Becky and Frank also met my surgeon, asked questions, and verified information. An especially significant time for an advocate is when they represent the patient. For example, while I was still in recovery, my surgeon talked to both my husband and daughter. They listened carefully and asked relevant questions. Most importantly, they communicated that information to me when I was awake. I appreciated them clearly explaining what I needed to know.
In general, an advocate looks after the interests of another. Though it is time-consuming to serve as an advocate, my daughter claims it is an honor to promote the well-being of one you love. Being on the receiving end, I know having an advocate is calming and priceless.
Researcher was the second “hat” my daughter wore since my husband is not computer-savvy. The day Becky heard I had triple negative, stage four breast cancer, she began researching. Being a teacher, she already knew how to seek out credible sources of information. Her favored university and hospital sites kept her a step ahead of information I was able to absorb. Becky told me later that she had related only limited information periodically so as not to overwhelm me. The worst thing a friend or relative can do is to bombard a patient with radical and conflicting information. Becky tried to cull the best and most pertinent information from the internet. She also asked the oncologist’s office to recommend local support groups. I was too fatigued during chemotherapy to attend; though later I found them helpful. At the time, neither she nor I knew about the many caring on-line support groups. It is helpful to have others who have “been there” to share with and learn from, so make sure to consider those for your patient. Perhaps even better is to have the person talk directly to a survivor. You can do this by contacting the American Cancer Society and requesting someone call from their “Reach for Recovery” program. I know how helpful that program is since I am a volunteer for it.
Medical Manager is the term I use for overseeing myriad medically-related tasks. The variety of tasks is extensive, so I present them in list form. Of course, your situation will vary. You may have more or less to do or have different types of duties, depending on the health of your patient.
1. Expect to take care of medicines. In my case, this included checking that the prescription dose was accurate (one time it was not); that they found the least expensive price for it; and, in the case of one pain-killer, it meant signing for it and hand carrying the prescription to the pharmacy. Also, you may need to oversee the taking of medicines. Once my husband saw me reach for the wrong painkiller and reminded me the oncologist said since I was on blood thinners not to take a nonsteroidal anti-inflammatory drug. I forgot because I still had chemo-fog. Also be prepared to remind the patient of the times to take their medications.
2. Expect to handle communications of a medical nature. There may be insurance companies to deal with, as well as hospital staff and doctors. My daughter was especially pro-active about calling either my surgeon or oncologist when necessary. I’d have a question I thought maybe I should wait on, but she’d get me an answer right away. I was fortunate to have a surgeon who promptly called back whenever his answering service was contacted. My oncologist also had both a nurse to answer questions in the day and an after-hours answering service.
3. Expect to become a medical record keeper. Frank dedicated a file cabinet drawer to my paperwork. Becky kept folders organized with various scans and copies of procedures. At every appointment, even a simple blood test, she asked the office for my results. I was glad my daughter stressed the importance of having a hard copy of everything, not leaving it up to various offices. Becky also suggested I get a copy from the hospital of my surgical record. When I was fully recovered, I did so and learned something I hadn’t previously realized. Also, Becky kept a calendar for me of blood tests, infusions, chemotherapy treatments, and more. Paperwork could also include creating a schedule for others so they know when to help. In my case, that wasn’t necessary, but if you have several people caregiving, it is a useful idea.
A goal vital to the relationship of patient and caregiver is to maintain a willing, positive attitude in spite of inconveniences. An example I found stunning in this regard was the sacrifice my daughter and son-in-law made for me without letting me know. A year later through a relative’s remarks, I discovered they were planning to move before I was diagnosed with cancer. Their lease was up, so they wanted to move to a smaller and less expensive house. Their current house had a guest room though, and was near my oncologist’s office and a hospital. They recognized how convenient for me it would be to stay there after treatments, surgery, and more. So they renewed their lease and welcomed me to stay with them. Hopefully, while you are advocating for a loved one, you can make them feel as if they are a blessing and not a burden.
Reflection:
1. People enjoy hearing an expression such as, “I’ve got your back.” That is a good way to describe caregiving, though it is easier said than done. What could you do to put action to the phrase, “I’m here for you,” for someone else?
2. If you are currently caregiving, be sure to take care of your own health, both physical and emotional. What things could you do to maintain your health and meet your emotional needs so you can avoid burn-out?