"Taking Care" (Part 2)

Expectations in any relationship are important to know. They clarify interactions and avoid misunderstandings. In the patient-caregiver relationship, knowing what to expect is especially helpful in directing outcomes in a major illness. I outline these ideas, divided into categories of what might be required, in order to reduce the stress of having unexpected situations arise.

Nurse is another “hat” for a caregiver and is often thought of as the main or only duty. It certainly is the most demanding role for a layperson. I’d watch my daughter and husband struggle to learn, practice, and finally feel confident with various procedures. Both Becky and Frank were with me in the hospital to hear the nurse explain how to tightly wrap me with Ace bandages and both read the discharge information. Still, neither had experienced much more than putting on a Band-Aid before, so it was a challenge for them. I shook my head in wonder as my husband struggled with wrapping my wound since he claimed he had “seen it all” in Vietnam. I suppose managing a loved-one’s needs are very different emotionally than trudging through a war-torn jungle. Some patients are adept at handling the job of wrapping themselves tightly enough after a mastectomy, but many women require a home health nurse or caregiver to help. I was taught how to empty drains and I felt comfortable doing so, myself. After the first couple showers, I needed no help with bathing except I wanted to know my husband was within ear shot in case I would feel weak.

However, the first shower was a different story! I was at my daughter’s for a week after surgery, so the job of first unwrapping my bandages fell to her. Honestly, it was rather sad how unprepared we both were. While I was seated, Becky carefully unwrapped the cloth binding. She told me not to look down. Then, she ran into difficulty unwrapping the final section because the cloth was wound in between my drain cords. Becky instructed again: “Do not look down!” and ran to get scissors. I, also, had read the advice to first look at yourself in the mirror after a mastectomy because it is less shocking somehow than looking directly at yourself. Well, yes, I understand that advice now that I’ve ignored it! After I looked at my wound, or should I say, absorbed the sight of my amputated body, I felt suddenly weak. Some may object to my use of the word amputation for mastectomy, but I doubt those objecting have experienced a mastectomy! I have never felt faint, much less fainted, in my considerably long life. I fought the feeling. I’m a strong woman, I thought to myself. I have attended to the various injuries incurred by my six children, some involving copious amounts of blood. “I’m okay,” I reassured my daughter as she returned to the bathroom.

Becky eyed me dubiously. “You looked.” It was not a question. She finished cutting away the cloth, adjusted the shower to the perfect temperature, and helped me into the tub. After a couple minutes, I began feeling dizzy, so my alarmed daughter partially stepped into the tub to steady me, getting her clothes wet. At the time, we hadn’t thought of using a simple lanyard to clip to the drain cords’ safety pins. The only system we thought might work to keep the drains contained so I could use my hands was having me loop a plastic grocery bag on my good arm. That did not work well since the bag became filled with water. Literally, “I was left holding the bag.” So, Becky’s clothes were soaked; I was crying; and the bag was heavy with water. I carefully stepped out without completing my shower because I was simply too weak to stand. I sat disoriented on the closed toilet lid as Becky kindly wrapped me in towels. My advice for any mastectomy patient is to take things slowly; no need to rush a shower. I never had surgery before, so I didn’t understand that routine daily tasks can be Olympic events to a recovering surgical patient. 

 Just like an actual nurse, another physical need a caregiver may be expected to help with is the administration of medicine. A patient may be too forgetful from chemo-fog or fatigued to keep track of times and pills. I recommend the designated caregiver assume this responsibility from the beginning, rather than take a “wait-and-see” approach. Then crucial medicine will be administered timely and correctly. Becky also began the job of recording the output results each time I emptied my surgical drains, as the surgeon requested. This was important for the physician to determine when the drains should be removed. 

 My daughter also acted as nurse-communicator by calling my surgeon when any medical problem would arise. For example, Becky called when one drain had yielded no output for 7 hours. I didn’t feel up to talking. She asked if such a situation was urgent. My surgeon informed her the drains sometimes become blocked, but to not be concerned unless it lasted over 24 hours. Soon thereafter, the pesky thing began to work again. So, the handling of potential medical problems also falls under the category of “nurse.”

I had no idea, really, of what would be involved after surgery. I fully understand some people are more prepared than I was or are stronger after surgery since they are not simultaneously recovering from chemotherapy. In my case, though, I definitely needed help. I feel blessed that my daughter was able to assume the role of nurse during my first week post-surgery. As I write this, my heart is filled with gratitude toward Becky. I cannot honestly say I understood at the time all that she did for me—and what she had to endure, herself, until time distanced me from the experience.

 Be prepared if you are a caregiver, to not receive any thanks right away for all you do. The patient is likely unable to see or absorb all that is involved in addressing their needs. When I would apologize to Becky for not doing something, she would firmly inform me that my job as a patient was simply to recover and heal and to stay focused on that! If the caregiver is prepared for the patient not recognizing all they do or seeing the inconvenience they cause, they will be able to cheerfully continue.

If the person giving care cannot maintain a positive attitude, then they should not hesitate to call a professional home health nurse. For other services, such as rides to appointments, volunteers may be available from such organizations as the American Cancer Society. It certainly does not mean a caregiver is a less capable person if they admit to burn-out and enlist help. It only means they are wise and considerate to know they have to do some self-care first to be able to care for others.

(Continued in part 3)

Reflection:

1. If you are a caregiver, how could you find ways to practice self-care?

2. If you are a caregiver, how could you enlist help?