A Caregiver's Perspective

First, I'd like to make it clear who I am and therefore what type of baggage I lug around and the assumptions you need to make concerning me. I am a caregiver husband. My perspective is that of a man. But, I am the oldest of five children and had four sisters, thus I am comfortable around women and have few hangups. My perspective is world centric and I have a strong liberal bias. Due to circumstances, I have been the principal cook in the family for over 25 years, thus that was not a major shift in my household responsibilities. 

There are many support groups for cancer caregivers. I did not use any but they are there. Search and ye shall find.  (Cure Magazine has a good survey, with a list of groups, here.)

Here is what I have learned about being a caregiver for a cancer patient:

⁕     Hugs, freely and often given, are the best things a caregiver can provide.

⁕     The diagnosis of cancer will change your world forever. Cancer is not like the flu; even if the patient gets the report "No Evidence of Disease," life will not return to what it was before. There will be physical effects of the chemo and radiation treatments that will affect the patient the rest of their lives. In addition, from the day they receive the dreaded words, "the tests show you have cancer," they have had to face the reality of their end, the prospect of their death. This causes psychological changes.

⁕     Some marriages or partnerships will not survive. I would hazard a guess and say that the safest partnerships are those where, before the onset of cancer, the roles are balanced and each views the other as an equal. 

⁕     Being a caregiver is stressful. The focus of treatment is on the patient and the caregiver is in a supporting role. If someone offers to help, accept it graciously even if you don't think help is needed and would rather do it yourself. The offer may not be made again and it will give you a break.

⁕     Unless the patient refuses to have you there, try to attend all doctor appointments and chemo and radiation treatments. For doctor appointments, you serve as a backup memory. Take notes. After appointments compare your impressions of what was said. Remember, what we recall is affected by our emotions. How something is perceived is as important as the words spoken.

⁕     Having full faith and confidence in your doctor is essential in all aspects of health care, especially in a cancer treatment program. Having the caregiver there helps the patient validate their impressions if the doctor-patient relationship is not working.

⁕     Be prepared for the patient to have emotional meltdowns over trivia that would have never bothered her (or him) before.

⁕     The patient's dietary needs will change greatly and more than once  during the treatment program and during the post recovery period. Many changes are permanent. Some patients lose their ability to eat favorite foods for years.

⁕     Be prepared to deal with very intimate things like wiping the patient's butt and applying medicated gauze pads to the anus and vaginal area.

⁕     If the patient feels they have failed in some way and the cancer is the result of something they did or didn't do earlier in life, shift the focus to what needs to be done to deal with life as it is and move forward. What-ifs have no value. Looking backward only helps if one is trying to understand the lessons needed for the future.

⁕     Be free with compliments. It shouldn't be necessary and would be counter-productive to make fake compliments. If you notice the patient and think about what she or he is going through, you will find things truly worth commenting on positively and make the comments into a compliment.

⁕     Give lots of hugs and show lots of affection.

More on being a caregiver:  Dealing with your feelings and your relationship with the cancer patient

People have varying ways of dealing with people who are ill or have been injured and have visible reminders, such as scars or impaired movement. From when we are children, we have to deal with this and we do it in different ways. Children can be very cruel and tease someone who is different and look down on them--you wouldn't tease someone who is better than you. Some people find it difficult to talk to someone who is disfigured. They are well aware of the disfigurement but do not know how to deal with it. They are also uncomfortable talking with and dealing with someone who is seriously ill. They are uncertain what to say. As a result, they often ignore and do not discuss the most significant thing in that person's life at the moment, their illness. In many cases, because they do not know how to deal with it and consequently feel uncomfortable, they break off contact. These failures to acknowledge the illness and express concern with the treatment and the patient lead to impaired relations afterward.

This is especially damaging when the person who cannot handle the illness is the patient's partner, the person who is closest to the patient; he (most likely) or she, cannot take care of the patient.

One of the worst consequences of an illness or accident or combat is to lose part of your body or be disfigured. Put yourself in the place of a young man starting out his life who is injured and loses part of his leg. Think of his self image, with only part of a limb. How do you think he would feel if his loved one turns away at the sight of the injury? She might find it painful to look because she is hurting for him but he can equally be thinking of her reaction as turning away because he is no long "whole" and therefore is repulsive. If, on the other hand, she were able to express her feelings in a loving manner by touching the stump and expressing her empathetic pain, it would serve as acceptance and reaffirmation of love. Look at the photos of breast cancer survivors shown on The Scar Project. If I were the partner of one of those women, I would not have hesitated to show my love for her by applying creams to her scars as soon as possible to help her discomfort and ease her recovery.

This is an anal cancer site and the part of the body involved is the anus and there are all sorts of taboos associated with that. They are silly when you think about it. All creatures have one. They are necessary for the functioning of our bodies. What passes through is the result of our bodies' processes on the foods and drinks we ingest. Babies are unable to care for themselves and their waste matter can really be messy and stinky but we can deal with that in a loving and caring manner. Those of us who have dogs have to learn to take care of their waste. Why do we have problems dealing with our loved ones when they have bowel problems or burned skin as the result of cancer treatment?

The radiation portion of the treatment for anal cancer is focused on the area around the anus. It is harsh because it is supposed to kill cancer cells. It damages other cells in the area. The vagina is separated from the anus by a short distance. One of the effects of radiation treatment is burning, like sunburn in that area. Another is vaginal stenosis. If you have ever made love to your partner, you have had your hands or fingers in this area. Many couples use a finger in the anus as an erotic stimulus. Sex is messy. Placing cream to soothe the burned tissues is less messy.

When a person is undergoing radiation treatment for anal cancer, their most private parts are exposed to the personnel in the laboratory. The laboratory personnel are courteous and treat each patient professionally, but in a detached way. A woman's most vital part, the object of her partner's erotic thoughts, is treated as if it doesn't exist. Her sex is depersonalized. If when she returns home her partner ignores it and is unwilling to help her by applying pain-relieving creams, it hurts emotionally. On the other hand by helping her through applying cream, he becomes part of her treatment program, reassuring her of his love.

I believe it would help a couple to discuss this before the treatment program starts. I would go so far as to suggest that they start applying cream and get comfortable with this from the beginning, before the burning becomes noticeable. After my wifes diagnosis, I bought a massage table and oils and started giving my wife massages well before she started. It was a way for me to express my love and to help her relax.

Helpful Websites

The National Comprehensive Cancer Network site has a section dealing with the needs of family, friends and caregivers.  Registration is easy and quick.  See also the National Family Caregivers Association site.   The American Cancer Society also has pages for caregivers, as does the American Society of Clinical Oncology.  For a very personal website created by a caregiver in memory of her husband, see Caregivers4Cancer.  And CancerCare and Boehringer Ingelheim Pharmaceuticals have created a web resource for caregivers here, helping you to put together your own caregiver support group; also see this for web support groups for caregivers.   Web MD has a good discussion on burnout, also discussed here by Cure Magazine.  Two other suggestions:  Caregivers Action, and the National Alliance for Caregiving.   November is Family Caregiver Month!  And here’s an article about a new site for caregivers.

Couples who are confronting cancer treatment and recovery together may well find that they are not communicating as well as they thought they did; see "Battling Cancer Together" for some reflections on how to prevent a diagnosis from destroying your relationship.  Author Dr. Dan Shapiro and his wife Terry have both gone through cancer treatment, so he knows the subject very well.   Another blog from the New York Times presents the problem of long-term anxiety, which may affect the partner caregiver even more than the patient.  Still, as the patient becomes a survivor, your role will also change!  Eventually, you will resume "normal life."  It may be a "new normal," as cancer has been in your life, but you, like the patient, will recover.

For tips on "how to help" see this essay, which speaks specifically about lung cancer but is relevant for any cancer patient.   M.D.Anderson has a powerful article about this from a caregiver here.  And Cure Magazine has helpful tips and a list of online resources.  Help family and friends talk to the patient - and the caregiver - without saying unwittingly painful things.

Ruth Cohn Bolletino's book, *How to Talk with Family Caregivers about Cancer, Norton, 2009, is another important resource - for your doctor as well as yourself.

© H. M. Carter-Tripp 2012