September 2014 Ask the Expert: Coping as a Caregiver

September 1, 2014

When someone you know is diagnosed with breast cancer, you may immediately step into the caregiving role. You might help by taking on daily chores, going to doctors’ appointments or by listening when your loved one needs to talk. If you’re supporting someone with metastaticinfo-icon breast cancer, your role as caregiverinfo-icon may become even more involved, as treatment is ongoing.

Though you yourself may not have breast cancer, your loved one’s diagnosisinfo-icon and treatment can have an impact on your life. As a caregiver, you may find yourself stressed, worried, tired or overwhelmed out of concern or because of the challenge of balancing your life needs with those of someone else.

During the month of September, Living Beyond Breast Cancer expert Page Tolbert, LCSW, answered your questions about how to copeinfo-icon with a loved one’s diagnosis, where to go for resources as a caregiver, and when to seek help for yourself if you feel you need it.

Remember: we cannot provide diagnoses, medical consultations or specific treatment recommendations. This service is designed for educational and informational purposes only. The information is general in nature. For specific healthcare questions or concerns, consult your healthcare providerinfo-icon because treatment varies with individual circumstances. The content is not intended in any way to substitute for professional counselinginfo-icon or medical advice.

Question: How can you let your chronically ill loved one know that you do understand what they are going through? You are experiencing feelings and emotions as well.

Ms. Tolbert: There are really two questions here. Let’s take the first one – how can you let your loved one know that you do understand what they’re going through?

My response to this one may seem a little tough, but it’s based on years of clinicalinfo-icon work with patients, both individually and in groups. Time and again, they have cited as one of their pet peeves people who say “I know (understand) what you’re going through.” This may seem odd, because surely the folks who express that feeling are trying to be helpful and caring. But the fact is, as empathic and sympathetic as we caregivers may be, we can’t really know what it’s like to be undergoing chemotherapyinfo-icon or radiationinfo-icon. Usually, it’s better to say “I can’t actually know what this is like for you, but I want you to know that I’m there, and care very much about you.”

The second part of the question is really a statement, and a true one. How can we be close to someone who is going through cancer without having our own reactions? Whether we are the child, partner, parent or good friend of a patient, we are going to be affected. We worry about losing that person to their disease. We wonder whether the experience of illness will change them in some fundamental way, making them less available or willing to spend time with us. It’s certainly all right to let the patient know that their illness affects you deeply – up to a point. While undergoing treatment, the patient has the “right of way” when it comes to expressing fear, anxietyinfo-icon and discomfort.

Question: How can you stop feeling guilty about self-preservation and not wanting to focus on only the negative?

Ms. Tolbert: A great question. Many a caregiverinfo-icon has admitted to me that they need a break from doctors’ appointments, errands and focusing on illness so much of the time. Not only are family members and friends entitled to such breaks – it’s imperative that they have them! And breaks should include more than just “time off.” They should include fun with friends, pleasant activities, exercise, massages and whatever else helps to balance the picture. And I want to be clear that I say this not just out of sympathy for those who help and support patients. In fact, if I had a prescriptioninfo-icon pad, I’d write these orders down! After all, if you cave in, become ill or are so tired you can’t think – how helpful can you be to anyone?

Question: How do you support your loved one while taking care of your own emotional health?

Ms. Tolbert: As indicated above, you can let your loved one know how much you want to be there for them in any way you can. AND you can stressinfo-icon that such a plan must include some time to recharge your own batteries, so that you can be helpful to the patient and other family members who may be affected, like children.

Question: Is there any assistance for children who have already lost one parent to cancer and has the second parent fighting cancer now?

Ms. Tolbert: I’m a little unclear on what you mean by assistance, and also whether you are speaking of small children or adults. Let me start with resources for adults. There is certainly always counselinginfo-icon available for family members through agencies like CancerCare. Such organizations can help you find a professional counselor in your area, and many also offer phone support that you can access no matter where you live. Group support may also be available through a hospital, church or cancer organization. In leading groups for adult children of cancer patients, I have often found that more than one member will be going through a second cancer experience with a parent. Such members can offer a lot of help to one another, and can even “buddy up” outside the meeting, if this is permitted. And remember: While it seems unfair to go through a second parent’s cancer, think of all the expertise you gained the first time around.

If you’re talking about small children, it may be necessary to help them out by finding a professional counselor who specializes in working with children around illness. It’s also vitalinfo-icon that their teacher and any guidance professionals at school be made aware of the situation at home.

Question: My 44-year-old daughter-in-law has been fighting stage IV triple-negative breast cancer since January 2012. She has an 8-year-old and an 11-year-old. They know mom has cancer but are not in any therapy. Should they be? She has had no evidence of disease for the past 9 months so everyone walks around not talking about it much, acting like everything is OK.

Ms. Tolbert: First of all, the good news: Your daughter-in-law’s cancer story is becoming an increasingly common one. I see more and more patients who are doing well for longer and longer periods of time. Both they and their families are able to pursue “business as usual,” and, of course, this is a good thing. But I also hear your concern that the kids may have feelings or needs that should be addressed. What I’d want to know here is how the kids seem to be doing. Are they eating and sleeping normally? Seeing friends? Getting along in school? If so, I’d say that therapyinfo-icon can wait until there is a change in the picture. You might want to suggest getting some recommendations of good child therapists, or even having a consultation now, so that the kids can be assessed. Another reason to meet someone earlier rather than later is that the therapist can become a familiar face, so that, if the time comes when he/she is needed, kids are not meeting a stranger.

Question: My son’s wife has stage IV disease. They have two young children. I would like them all to go to therapy but they won’t. Do I just let them handle this on their own or should I be pushing them to get more support?

Your question obviously has much in common with the one above, so some of my comments apply here, too. I also want to add that – given my career – I obviously think therapyinfo-icon is valuable! But it does generally have to be something a person seeks out for himself. Again, I would want to know how everyone is doing, whether you are seeing signs of depressioninfo-icon or intense distressinfo-icon; if not, it may be that therapy can wait. That’s especially true if the diagnosisinfo-icon is relatively new. Sometimes the dust has to settle a little, before folks can get a sense of what they need.

I think the key word in your question is “push.” This word gives me the sense that you may already have suggested therapy, but your suggestion wasn’t heeded. If this is the case, I’d let it go for now. Many patients and family members have told me that well-intended advice from friends and family can be overwhelming. But that doesn’t mean that if you’re seeing something that worries you, you can’t offer a gentle reminder a little way down the line. You might even say that you know the advice of loved ones can be too much at times – and that’s why talking to an outsider could be helpful. But, in the end, that’s all you can do – besides being available yourself, and showing that you care.