Defining Your Role as a Cancer Caregiver

What does your parent expect, want, and need from a caregiver?

From the moment your parent delivers the news of a cancer diagnosis to you, 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 parent need to tackle together. Start by sitting down with your parent, or parents, and making a list of everything that needs doing, so that you can prioritize which ones your parent most needs help with.

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 your parent's relationship with his or 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 your parent's social life

• Helping coordinate visits with friends, family, support staff, and other community members so your parent doesn't become isolated
• Communicating with family and friends about your parent's status and needs
• Helping your parent continue with favorite activities and hobbies

What to watch out for

One caveat: Experts say 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 care giving alone, and if you try, you're bound to grow frustrated and discouraged pretty quickly. Keep in mind that 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 won't have enough stamina to hang in there during the prolonged phase of care management.

Your role will constantly change as you and your parent evaluate what he can do and what he needs you or someone else to do for him. "It will be a constant evolution as your parent 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 your parent is 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 your parent 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."

What are you able and willing to do, and what can't you do?

Becoming a caregiver for a parent with cancer may be a role you choose, or it may feel like a role that has been thrust upon 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 your parent is struggling with the same issues.

By stepping into the role of caregiver, you're offering your parent 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 care giving for a parent with 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 care giving you take on, and which you choose to delegate to professionals, family, and friends.

Talk as openly as possible with your parents 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 routine chemo appointments."

A huge challenge you'll almost certainly encounter is how to support and encourage your parent's optimism and will to fight the cancer, while absorbing information that can at times be frightening and discouraging. You'll often find yourself torn between wanting to say positive and encouraging things while still helping your parent to face the reality of a less-than-positive prognosis.

Establishing clear lines of communication

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 your parents -- 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 to your parents 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 your parents 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.

Establishing clear expectations with your parents and others

Another way to establish limits is to set up clear expectations with your parents. What can they expect your help with, and what's beyond the scope of what you can provide? Explain that while you're going to be the "point person" for care giving, others will help you make sure everything gets done.

Using the list you made together of all the things your parent 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 parent's friends and neighbors, don't be shy about asking. Remind your parents about their bowling league, their church community, and any support network available, and ask how to get in touch with these folks.

Friends, neighbors, and other members' of your parents' 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 task and assign it.

Ensuring that the system works

To make everything run smoothly, you'll want to get your siblings, other family members, and other potential members of the care-giving 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 talking to your parents about 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 parents 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 parent 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 your parent's expectations about cooking, cleaning, and other household tasks. Perhaps they could hire someone to clean once a week, or call a handyman -- rather than you -- when routine maintenance issues crop 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 your parent asks you to step in and make key decisions, and other times when your role will be to provide empathetic listening and a strong shoulder to lean on while your parent makes his or her own decisions.