The Role of the Caregiver

When someone in a family is diagnosed with cancer, it changes things for everyone involved. These changes don’t come easily for the patient or the caregiver. The daily struggle caregivers face in caring for a loved one with cancer can be overwhelming. Often, they feel alone and unprepared for this new role. In fact, caregiving duties may include several different roles at once: nurse, counselor, motivator, gatekeeper, medical advocate, etc.

If you are a caregiver of a cancer patient or know someone who is, chances are you or that person have experienced one or more of the following emotions at some time:

Denial: This can’t be happening to us.

Sadness: Why does my loved one have to go through this?

Fear: What does the future hold?

Helpless: I want to help my loved one, but how?

Alone: Nobody understands what we are going through.

Frustrated: My loved one refuses to eat. Why won’t he/she try harder?

Guilt: What right do I have to complain when my loved one is the one with cancer?

Overwhelmed: How do I sort through all of this information?

Angry: Why can’t things go back to normal?

Anxious: How will I take care of my loved one if the situation gets worse in the future?

These feelings are normal. Also, in the midst of all of these emotions, you or the caregiver you know may also experience unexpected rewards that come with being a caregiver, such as forgiveness, compassion and courage, which can turn hard times into family solidarity, hope and healing.

Each caregiver faces a unique situation and experiences it differently, but here are some hints that might help with managing the journey ahead. These sets of tips may also help ease the stress on the cancer patient, who is probably just as concerned about the caregiver’s well-being as his or her own.

If you’re the caregiver, use them for yourself. If you know someone who is a caregiver, please feel free to pass them along if appropriate and needed.        

10 Tips for Caregivers:
How do I help my loved one cope?

Right now, you might feel like your life has no semblance of normalcy. Everything has been turned upside down. Imagine how your loved one feels. The following are some tips you can use to help your loved one cope with his or her illness, and help you in your role as caregiver.

1. Educate yourself and become involved.
Learn about your loved one’s particular cancer type, treatment options available (i.e., surgery, radiation, chemotherapy, etc.) and side effects. When possible, attend your loved one’s doctor’s appointments. Bring a list of questions to each appointment to ensure you remember to ask the physician everything you want to know. Remember, knowledge is power, and the more you know, the greater sense of control you and your loved one will feel.

2. Get organized.
Make an outline of your loved one’s medical history and keep the records (i.e., treatments, x-ray/lab results, etc) on file. Keep a current, complete list of medications, dosage and frequency. Also, keep a record of your loved one’s appointments, names of physicians, and contact information, including pharmacy number. Encourage your loved one to record his or her daily symptoms so you can point out any irregularities to the doctor.

3. Encourage independence when appropriate.
While you may find yourself taking over a lot of your loved one’s responsibilities, you still need to encourage him or her to be as independent and self-sufficient as desired. The more control the patient has over his or her own life and the more decisions he or she actively makes, the better. If the cancer patient is able to, let him or her perform certain activities without your assistance. Provide choices whenever possible (i.e., what to eat for breakfast, what to wear, etc.).

4. Don’t push your loved one too hard.
Sometimes, caregivers think their loved one won’t get better if they don’t make the patient “toughen up.” However, if your loved one is truly unable to eat certain foods or perform certain tasks, forcing the issue will only cause more frustration, anxiety and stress. Chances are, the loved one already feels like he or she is a burden on you, so don’t make the person feel worse about his or her inability to do certain things right now.

5. Try to find a light side.
When you can, try to keep the atmosphere light. Share a joyful memory or review a family album together. Put on a funny movie or TV show. Show your loved one stories from other cancer survivors who have fought and won. If your loved one is staying in the hospital during treatments, keep the atmosphere positive, bring in balloons or decorations.

6. Accept your loved one’s bad days.
Sometimes, your loved one might be depressed, angry, or just having a bad day. That’s okay. Your loved one can’t be expected to be upbeat and positive throughout this entire experience. So many times cancer patients are made to feel guilty if they express any negativity, because everyone constantly tells them to “stay positive.” This is unrealistic. There will be good days and bad days. Just try to make the good days extra special and the bad days less difficult for your loved one.

7. Learn how to talk with your loved one.
Since it’s impossible to know what your loved one is going through right now, it’s important to communicate sensitively with them. You should avoid saying things like: It’s all in your head; We all go through times like this; Stop worrying, you’ll be fine; Look on the bright side. Instead, you can say things that help like: You are not alone in this, I’m here for you; We will get through this together; You may not believe it now, but the way you’re feeling will change; I may not be able to understand exactly how you feel, but I care about you and want to help.

8. Listen to your loved one.
Don’t try to tell your loved one what to think, feel, or how to act. Just listen. Many cancer patients will tell you that just having someone who is there to listen, without judgment, makes all the difference. You don’t need to have all the answers, just a sympathetic ear. Follow their cue – be sensitive to what your loved one wants to talk about. They might not want to talk at all, and would rather sit quietly instead.

9. Have difficult conversations early on.
Find out what your loved one’s wishes are regarding financial matters, power of attorney, etc. As the caregiver, you don’t want to be left guessing what his or her desires would have been if the time comes when the patient can’t engage in decision-making.

10. Find other sources of support for your loved one.
While you may be a wonderful emotional support for your loved one, sometimes it helps the patient to have another, outside source, to whom to express feelings. Ask your loved one if he or she would like to speak to a professional (counselor, therapist, social worker, chaplain/clergy member) and have names and numbers ready.

10 Tips for Caregivers:
How do I cope?

When someone you love is diagnosed with cancer, it impacts both of your lives. You no doubt feel compelled to help your loved one any way you can. However, in order to help your loved one cope with the situation, you need to learn to cope with it as well. The following are some suggestions for making your job a little easier:

1. Embrace change.
Embrace the things you can change and accept the things you cannot change. Sure, this is not fair. But, what can you do to make it better? Remember, you are not the only family going through this. Instead of focusing on the past and asking why this is happening to you, think about what you can do in the here and now. Realize the special support you are giving to your loved one by helping him or her. Also, realize the gift you are giving yourself by being able to spend this time with your loved one.

2. Open the communication lines with family.
Hard feelings among family members result if one caregiver is doing all the work and others aren’t chipping in. Most of the time, people do what they are capable of. And everyone reacts differently in this type of situation. Try to be patient with other family members and remember that they are probably doing the best they can do. Don’t try to solve any underlying issues/conflicts while your loved one is struggling to get better. Try to focus on what is most important at this time and put feelings aside for now.

3. Ask for and accept help.
Let family and friends help share the load. They probably want to help, but they might not know how. Instead of waiting for them to make suggestions, give them specific tasks/household duties (i.e., going to the grocery store, fixing a meal, picking up the laundry, taking the car to be serviced, spending time with your loved one while you run errands, etc.).

4. Prioritize your responsibilities.
It may help to make a list of daily tasks and prioritize what needs to be done first. Space out your activities with short rest periods. If you’re in need of financial advice and assistance, contact your hospital social worker. Also, if you have children, allowing them to help gives them an active way of coping and feeling like a part of the family. Explain that the family is going through a tough time now and everyone has to pitch in.

5. Make time for yourself.
Caregiving can be a full time job. It can also be confining and a little lonely. You don’t have to feel guilty about needing some time for yourself. You can’t be the caregiver if you’re too tired and stressed. The following are suggestions for taking care of yourself: Get adequate sleep; listen to relaxation tapes or music; do an activity you enjoy (get a massage, play golf, go to a movie, take a warm bath, read a book); get regular exercise; keep a journal.

6. Pay attention to your own health.
Stay in tune with your own physical and emotional health. Watch for signs of stress, such as impatience, loss of appetite, difficulty sleeping, difficulty concentrating or remembering. It’s also important for you to maintain contact with friends and family. Social isolation can increase emotional distress. If you’re feeling constant sadness, fear, panic, or anger that makes it difficult for you to accomplish your usual tasks or activities, seek help with a doctor or social worker.

7. Try not to take things personally.
At times, your loved one might take some of anger and frustration out on you. Try to remember that he or she is going through a very difficult time and are probably scared and confused. You might resent having to be the “bad guy” … the one who admonishes the patient when he or she strays too far from the right diet and the one who nudges the patient to exercise. Know that you are being a tremendous help to the patient and he or she appreciates it, even if that appreciation isn’t verbalized.

8. Find support from other caregivers.
You might find comfort in being able to share your feelings and experiences with other caregivers. Consider joining a local support group at your hospital/medical facility. You could also join an online message board community to talk about what you are going through. You will find strength in knowing you are not alone.

9. Spend time together and say what you need to say.
This is something everyone should remind themselves to do with their loved ones, not just during difficult times. This is a time to let go of any issues from the past and enjoy your relationship with your loved one. Do things together now. Say what you need to say now. The best thing you can hope for is that you end up having many more cherished moments with your loved one.

10. Know your strengths and limitations.
It can be hard to give up responsibility, but at times, it’s the best choice. You might be struggling to balance your caregiving duties with your full-time job. Look into the family medical-leave policies at your workplace. Also, don’t be afraid to ask other family members for help if the responsibilities are becoming too difficult. Consult with your loved one’s doctor to determine if/when professional nursing services might be needed.