What does someone with breast cancer expect, want, and need from a caregiver?
From the moment a loved one delivers the news of a breast cancer diagnosis, a host of questions arise about how your family is going to cope with everything that needs to be done in the days and months ahead. The role of caregiver can encompass a huge variety of responsibilities, large and small, and deciding who's going to do what is a process you and your family need to tackle together. Start by sitting down with everyone involved and making a list of everything that needs doing, so you can prioritize which ones you should focus on.
To get you started, here are some of the most common responsibilities that can come under the "caregiver" job description:
Helping with physical needs
- Communicating and coordinating with primary care physician, oncologist, and other medical staff
- Obtaining and helping organize medications, equipment, and other supplies
- Managing pain, nausea, vomiting, constipation, diarrhea, and other symptoms
- Handling grocery shopping and cooking, helping with eating and cleaning up
- Taking care of cleaning, laundry, and other household tasks
- Driving to and from appointments and running other errands
Helping with emotional issues
- Supporting and dealing with issues such as depression and anxiety
- Finding and coordinating membership in a support group or other supportive therapy
- Being available to talk through sadness, fear, and other emotional issues that arise
- Supporting her relationship with her spouse or partner
Helping with financial issues
- Paying bills
- Getting answers to medical insurance coverage questions
- Handling other insurance issues
- Planning long-term financial issues
Supporting her social life
- Helping coordinate visits with friends, family, support staff, and other community members so she doesn't become isolated
- Communicating with family and friends about her status and needs
- Helping her continue with favorite activities and hobbies
Breast Cancer Burnout
One caveat: It's important to recognize, from the very beginning, the dangers of caregiver burnout. There's no way you can take on all aspects of caregiving alone, and if you try, you're bound to grow frustrated and discouraged pretty quickly. Keep in mind that breast cancer treatment takes time, and you're at the beginning of a long and difficult journey. If you use up all your reserves of time, energy, and support at the beginning, during the "crisis" phase, you might not have enough stamina to hang in there during the prolonged phase of care management.
Your role will constantly change as you and the person in your care evaluate what she can do and what she needs you or someone else to do for her. "It will be a constant evolution as she goes through periods of helplessness and then through times of feeling empowered," says Bonnie Bajorek Daneker, author of The Compassionate Caregiver's Guide to Caring for Someone with Cancer . "You'll find you're constantly trying to balance between these two stances. You always have to adjust, depending on how she's feeling."
For example, Daneker says, it's common for cancer patients to feel strong and capable during periods between chemotherapy treatments, and then extremely fatigued and emotional during and right after treatment. Or you may find that the steroids often prescribed during chemo give the person in your care a short-lived energy boost that lasts for a day or two before dissipating, at which point the fatigue hits. "As a caregiver, you have to be so in tune with what the patient wants and needs," Daneker says. "It's important to be flexible and highly communicative to deal with the constant changes."
Breast Cancer Caregiving: What Are You Able to Do?
Becoming a caregiver for someone with breast cancer may be a role you choose, or it may feel like a role that's been thrust on you. After all, it's not easy for you -- or anyone -- to accept the idea that a serious illness has entered your life. You may struggle with denial and acceptance just as the person in your care is struggling with these issues.
By stepping into the role of caregiver, you're offering the incredible gift of having someone to turn to in a difficult time. It's important, though, to try to be as realistic as possible about what's needed, and about your own limitations, right from the get-go.
Start by accepting the fact that caring for someone with breast cancer is a very big job. Practical considerations such as whether you live nearby or at a distance, how much time you have available, how many other responsibilities you have on your plate (children? work?), and how comfortable you are dealing with certain situations will play a role in which aspects of caregiving you take on, and which you choose to delegate to professionals, family, and friends.
Talk as openly as possible with everyone involved about both your strengths and limitations as a caregiver, and explain what you're able to take on, and what you've asked others to do. You might say something like, "As you know, my job doesn't make it easy for me to take time off during the day, so I'm going to come to your oncology appointments, but Bob and Betty are going to take turns driving you to your chemo appointments."
One huge challenge you'll likely encounter is how to support and encourage her optimism and will to fight the cancer while absorbing information that can at times be frightening and discouraging. You may find yourself torn, for example, between wanting to say positive and encouraging things while still helping her face the reality of a less-than-positive prognosis.
How to Establish Lines of Communication as a Breast Cancer Caregiver
Talk with other caregivers, and you'll quickly learn that one of the hardest parts of being in this role is dealing with guilt, anxiety, and the constant feeling that you aren't doing enough. (That's why it's essential to let yourself off the hook: you're doing all you can, and that's good enough.) To help protect yourself -- and other involved -- from these feelings, you're going to need to set limits for yourself. And the key to doing this is clear communication.
You may, for instance, need to explain a little more than you ever have before about your job -- what your responsibilities entail, when you can get away, and when you can't. You may need to set some limits around your own family time, such as asking family not to call past a certain point in the evening unless it's an emergency, or setting up a phone tree so that calls about some issues come to you, and others are directed to your siblings or to family friends.
How to Set Expectations as a Breast Cancer Caregiver
Another way to establish limits is to set clear expectations with everyone involved, especially the person with cancer. What can she expect your help with, and what's b eyond the scope of what you can provide? Explain that while you're going to be the "point person" for caregiving, others will help you make sure everything gets done.
Using the list you made together of all the things she needs help with, focus on working together to assemble a reliable team of helpers to get it all accomplished. If you have siblings, set up a communications system that enables you to delegate tasks to them. Even those who live at a distance can take on a set of obligations. For example, you might give your sister on the opposite coast the job of dealing with medical insurance, or your brother could take over financial planning questions.
If you don't know all of your loved one's friends and neighbors, don't be shy about asking. Remind her about her bowling league, her church community, and any support network available, and ask how to get in touch with these folks.
Friends, neighbors, and other members' of her community will ask how they can help, and when they do, suggest that they pitch in with cooking, cleaning, driving, and other household needs -- then choose a specific task and assign it.
How to Set up a System for Breast Cancer Caregiving
To make everything run smoothly, you'll want to get your siblings, other family members, and other potential members of your caregiving team on the same page. What you especially want to avoid is the "Call me syndrome," where every problem that arises -- and there will be lots of them -- triggers a call to you. Protect yourself from becoming a communications hub by making clear who's doing what. You might say, "Sarah's handling insurance, so call her when you have questions about what's covered." If there's a friend or neighbor you can put in charge of coordinating driving for errands and routine appointments, then ask your family to call that person directly, and only call you when it's an appointment or errand that involves you. If it's hard for your loved one to keep it all straight, you might type up a list of responsibilities and contact numbers and tape it to the wall by the phone.
Another key to avoiding feeling overwhelmed is to marshal professional resources so that every issue that arises doesn't land on your plate. You might, for instance, need to discuss expectations about cooking, cleaning, and other household tasks. Perhaps there's money available to hire someone to clean once a week, or to call a handyman -- rather than you -- when routine maintenance issues cro p up.
One thing you'll probably start to realize fairly quickly is that there aren't any hard-and-fast rules for how involved or take-charge you'll need to be. There will be times when you'll be asked to step in and make key decisions, and other times when your role will be to simply listen and offer your emotional support.