I know you are feeling overwhelmed right now. You are searching for direction, answers, hope.
I am here to help. Each month, I will send you some information and advice to make your journey a little more manageable...
When your loved one has cancer:
The role of the caregiver
When someone you love is diagnosed with cancer, it changes things for everyone involved. These changes do not 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, caregivers 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, chances are you 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?
Know that these feelings are normal. Also, in the midst of all of these emotions, you 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 you manage the journey ahead. These sets of tips may also help ease the stress on your loved one, who is probably just as concerned about your well-being as their own.
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 their illness, and help you in your role as caregiver.
- Educate yourself and become involved.
Learn about your loved one’s particular cancer type, treatment options available (e.g., 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 be sure 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.
- Get organized.
Make an outline of your loved one’s medical history and keep their 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 their daily symptoms so you can point out any irregularities to the doctor.
- Encourage independence when appropriate.
While you may find yourself taking over a lot of your loved one’s responsibilities, you still need to encourage them to be as independent and self-sufficient as they want to be. The more control they have over their own lives and the more decisions they make on their own, the better. If they are able to, let them perform certain activities without your assistance. Provide choices whenever possible (e.g., what to eat for breakfast, what to wear, etc.).
- Don’t push your loved one too hard.
Sometimes, caregivers think their loved one won’t get better if they don’t make them “toughen up.” However, if your loved one is truly unable to eat certain foods or perform certain tasks, forcing them will only cause more frustration, anxiety and stress for them. Chances are, they already feel like they are a burden on you, so don’t make them feel worse about their inability to do certain things right now.
- Try to find a light side.
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.
- Accept your loved one’s bad days.
Sometimes, your loved one might be depressed, angry, or just having a bad day. That is okay. Your loved one cannot 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.
- Learn how to talk with your loved one.
Since it is impossible to know what your loved one is going through right now, it is 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.
- Listen to your loved one.
Don’t try to tell your loved one what to think, feel, or how to act. Just listen to them. 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.
- Have difficult conversations early on.
Find out what your loved one’s wishes are regarding financial matters, power of attorney, etc. As their caregiver, you don’t want to be left guessing what their desires would have been if the time comes when they can’t engage in decision-making.
- Find other sources of support for your loved one.
While you may be a wonderful emotional support for your loved one, sometimes it helps them to have another, outside source, to whom to express their feelings. Ask your loved one if they 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:
- 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 them. Also, realize the gift you are giving yourself by being able to spend this time with your loved one.
- 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.
- 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 (e.g., 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.).
- 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 are 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.
- 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 cannot be the caregiver if you are 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.
- 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 is also important for you to maintain contact with friends and family. Social isolation can increase emotional distress. If you are 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.
- Try not to take things personally.
At times, your loved one might take some of their anger and frustration out on you. Try to remember that they are going through a very difficult time, they are probably scared and confused. You might resent having to be the “bad guy.” The one who admonishes them when they stray too far from their diet and the one who nudges them to do their exercises. Know that you are being a tremendous help to them and they appreciate it, even if they don’t say it all the time.
- 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.
- 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.
- 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.
Supporting Caregivers at CTCA
At Cancer Treatment Centers of
America (CTCA), we put the patient first, supporting their needs as
we would a member of our own family. We also understand that caring for
patients also means supporting you – the caregiver – as well. We
provide several different sources of support for you and your loved one,
including the following:
- Family Counseling/Support Groups:
CTCA provides regular support group sessions, as well as private
and group counseling, for patients and their caregivers.
- Spiritual Support:
CTCA provides spiritual support to families who request it. A member from our pastoral care team will meet with the patient and/or their caregivers individually or together.
- Mind-Body Medicine Offerings:
mind-body medicine specialists offer mind-body tools and techniques to
patients and their caregivers to help you both deal with the physical and
emotional issues that may arise during treatment. Some mind-body
services include: Stress management classes, relaxation and guided
imagery training, deep breathing training and humor therapy.
- Online Message Board Community:
CTCA offers CancerCompass, a unique online
community of people who are affected by cancer. With CancerCompass, patients and their caregivers have access to the latest cancer news, cancer information and decision support resources, as well as a disease and interest-specific message
board. Through the message board, members share
common experiences, discuss cancer news, and offer support and encouragement to each other.
- Personal Web pages:
offers private Web pages, called CarePages, to patients and
their caregivers. Through CarePages, members can privately interact
with friends and family, share news and provide health updates. This
way, caregivers do not have to relay the same news over and over again
to several different people—it is all housed in their private Web
At CTCA, we are more than a network of cancer treatment hospitals
and facilities. We are the patient's “home away from home,” where
they can receive all of their care under one roof by highly-skilled,
compassionate physicians and
practitioners. Using a holistic
approach to cancer care, we aim to nurture the patient's whole
being – mind, body and spirit. We understand that as a caregiver, you play
a significant role in your loved one’s journey of healing and hope. That
is why we are committed to caring for our patients and supporting their caregivers. At CTCA,
help is just around the corner.
I hope this information has helped you in some way. I will
check in with you again next month. In the meantime, stay strong and