Defining Your Role as a Cancer Caregiver

How to set clear expectations with the person you're caring for and others
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What does the person you're caring for expect, want, and need from a caregiver?

When someone you're close to delivers the news of a cancer diagnosis, a host of questions arise about how you and others in her life are 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 she need to tackle together. Start by sitting down with her and making a list of everything that needs doing, so you can prioritize which ones she 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 her relationship with her spouse or partner, if she has one

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

How to take care of yourself when caring for someone with cancer

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 caregiving 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 the person you're caring for evaluate what she can do and what she needs you or someone else to do for her. "It will be a constant evolution as the person 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 her 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 someone 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 she's struggling with the same issues.

By stepping into the role of caregiver, you're offering her 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 caregiving for someone 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? spouse? 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 and other family or friends.

Talk as openly as possible with the patient 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. Y ou 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 the patient'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 her to face the reality of a less-than-positive prognosis.

How to make caregiving for a cancer patient work smoothly

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 her -- 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 her 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 her 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 others who are close to her.

Establishing clear expectations with the patient and others

Another way to establish limits is to set up clear expectations with the cancer patient. What can she 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 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 others can help, 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, if your mother is the one with cancer 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 the person's friends and neighbors, don't be shy about asking. Remind her about her bowling league, the community at her place of worship, 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 task and assign it.

Ensuring that the system works

To make everything run smoothly, you'll want to get family members and other potential members of the 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 talking to the patient 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 her to call that person directly, and only call you when it's an appointment or errand that involves you. If it's hard for her 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 her expectations about cooking, cleaning, and other household tasks. Perhaps she 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 the person you're caring for 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 she makes her own decisions.

Melanie Haiken

Melanie Haiken discovered how important it is to provide accurate, targeted, usable health information to people facing difficult decisions when she was health editor of Parenting magazine. See full bio

about 4 years, said...

ok I am at burnout level. my mom has stage 3 cancer, has a colonoscophy bag and is in the middle stages of alzhemiers. I pray a lot and still I loose my temper. not a day off since end of august. both siblings live 1,000 miles away. no one out here unless you hire a nurses aid and will go thru her savings in a hurry and she thinks she doesn't need help.

over 4 years, said...

My husband has PTCL and is on his 4th round of CHOP chemotherapy. I noticed that my hair is beginning to thin and fall out. We are always extremely conscientious about cleanliness during the times we were given and he has his own room and bath. Has anyone else experienced this and if so, what has been the outcome? Thanks for your help.

over 5 years, said...

Fello Caregivers. I understand. Weather it's cancer (there), elderly (been there), sick (done that), injurred, etc. Any aspect of caregiving is a large responsabilty. With that responsability are other factors that affect you as a caregiver. The stressors of a caregiver are compounded by work/employer, financial strain, insurance, Dr. apts., family, moving, losing a home, help availability as well as the general day to day responsabilities of shopping, cleaning, laundry, cooking, etc. If you do not have the help or enough help you need, these day to day tasks will deplete you mentally, physically and emotionally, You may be able to do it all for a while but it will be a matter of time before you start experiancing burnout. Fatigue, difficulty thinking, difficulty remembering, nausea, waking up with what feels like a hangover, feeling irritable, mood swings, loss of appetite, headaches, migrains, depressed, withdrawn, poor sleep, difficulty functioning efficiantly at work or home. You can't survive that way. 1. Talk to your doctor. Sometimes medication is needed to help. 2. , Talk to your pastor, Faith is how I survived and do survive. 3. Talk to a therapist, They can help with coping techniques. 4. Talk to someone that will listen. You need to vent. If you crash and hit your brisk wall. You will be of no help to anyone that depends on you. You have to find time for your self! I know, I know. Easier said than done. 1. Excercise. I highly recommend it!!! 2. Some hobby time or something you enjoy. You will find out real fast who your "real freinds" are. Those that walk away and stay away. Don't take it personal. They just don't know how or perhaps they have other personal matters in their life you don't know about. And that's ok. That one or two "true friend(s)" is worth more that several. If someone asks to help. Take it! Their is no shame in accepting help. Their isn't much out their for caregivers or there is not enough. Being a caregiver has the feeling of feeling alone, beside yourself, you don't matter, you don't count, nobody cares about you. Caregivers feel forgotten. Nobody has a clue to the stress and starin we endure. The cancer patient and the cancer caregiver go through their own individual hell. It's not that one requires more attention than the other or one is selfish. They both need each other. They both need support. No matter what, you can't do it alone because you are going through it together. Just like my wife (colon cancer) we have been fighting it together since 06. We are winning! Our faith in Christ has sustained us and the few friends we have. The best cancer support we have ever had as a patient and caregiver has been through CTCA. Caregivers, focus on the presant. Yesterday is gone and tomorrow is not here. Take it day by day, moment by moment. For every morning you awake. You have survived and made it another day. You made it this far! Have faith, be strong. You can do it! Cancer Caregiver

about 6 years, said...

myself and my 17 yr old daughter live with my parents, my mother has pancreatic cancer, my father has beginnings of dementia, my sister lives three miles away and does nothing anymore, she never calls or stops by, my brothers live in Pa, we're in Md. I was doing pretty good, but now, I feel like I'm in over my head,

over 6 years, said...

Very happy to find this Website. It is 2-l/2 years since dx., treatment. Our medical team was and still is terrific. It took almost a year plus to feel normal. Notice memory not what it could be, as well as fatigue. Husband had Stage IV nasopharyngeal CA., rare in Caucasian Americans. We felt we went thru treatment and recovery fairly well. The aftermath of coping was not realized until months after treatment. In the dark moments, as caregiver, I found very little support groups to talk over feelings and coping skills. Eventually, almost 1-l/2 years later, we found a hospital that had a group meeting, once a month, for people with head and neck cancer. This group helped my husband very much.

over 7 years, said...

Suggestions about how to delegate care giver assistance.