When a loved one is diagnosed with cancer it can have a significant impact on the entire family, especially the primary caregiver. A primary caregiver is an individual who holds responsibility for the mental and physical well-being of a person in need. Many family members or friends will find themselves in a caregiver role at some point in their life. It may be an unexpected role that you have not performed before. The Caregiver Action Network estimates that in a year more than 65 million people in the United States will care for a family member or friend.

The caregiver role can be complex and may entail:  

• Providing emotional support 

• Assisting with decision making 

• Providing transportation, errands, and meals  

• Coordinating medical care 

• Assisting with childcare or housekeeping responsibilities

• Assisting with activities of daily living (ADLs) such as bathing, dressing, or feeding

• Managing finances and so much more

Like most new roles, caregiving can require time to adjust to the changes and challenges. While a range of emotions is normal, many caregivers share feeling frustrated or unappreciated at times. Your loved one’s treatment may lead to unexpected or complex emotions, and they may sometimes not seem like themselves or it feels like they are taking frustrations out on you.

Sometimes the patient wishes for independence while you recognize limitations and ongoing needs. It can be challenging to find ways to respect the patients’ need for autonomy while continuing to provide care. You may also find that caregiving gives you pleasure, as it may make you feel as if you are giving back to someone who has given to you during a time of need. You may also experience moments of peace or satisfaction, knowing that you are a part of your loved one getting appropriate care.

The role of the caregiver may result in changes in the daily tasks you are needed to handle. If you are caring for a spouse who typically does the cooking or cleaning, you may need to take on those responsibilities or others that require learning new skills.

If you are an adult child taking care of a parent, you may feel as though the relationship dynamics have changed as you take on more of a parental or provider role. If this is new to you, give yourself time to adjust, realizing that no one expects you to be perfect. Both you and your loved one will likely be adapting as you go and learning something new each day. Embracing curiosity and checking in with yourself and your loved one about these changes can help.

Common Challenges for Caregivers: 

1. Real or perceived lack of appreciation       

2. Misunderstanding                                                    

3. Role reversal                                                              

4. Caregiver fatigue                                                  

5. Lack of support   

Common Rewards for Caregivers:

1. Appreciation

2. Satisfaction

3. Gratitude

4. Increased meaning or purpose

5. Quality time with a loved one

Many caregivers will find balancing self-care with caring for a loved one challenging. Taking care of others can be emotionally and physically exhausting. You may also feel guilty when you take time away to tend to other responsibilities or to care for yourself. Guilt may cause you to neglect your own needs which in turn can further impact your emotional and physical health. 

Coping styles vary from person to person. Research on coping and stress recognizes five coping styles:

• Problem-focused 

• Emotion-focused 

• Seeking understanding  

• Seeking help 

• Avoiding the problem

1. Get active. Look for opportunities to get away from the clinic, take a break from your patient to exercise, or just move your body. If your patient is in active treatment, take a break and schedule time for yourself to focus on things other than cancer.  

2. Share responsibilities. Consider your strengths and the strengths of those around you when sharing responsibilities. Focus on your areas of strength while soliciting help from other family and friends who may be more capable of taking on other tasks. For example, you may have the organizational skills to manage records and coordinate medical care, while someone else in the family may be more capable of handling finances and medical bills. Some individuals are doers who get things done. Others are good at emotional support providing a safe place for others to process and be open and honest. Some are thinkers who can offer practical or unique solutions to problems. Sharing responsibilities alleviates stress. It’s important to prevent pushing yourself beyond your limitations to avoid caregiver burnout.   

3. Communicate. Talk with your patient when you are feeling misunderstood, when it seems nothing you do is good enough, or when you may feel helpless as you attempt to alleviate your patient’s pain and suffering. Reframe how you positively discuss certain topics and use “I statements” to express your needs. Examples include:

   • “I understand that you don’t have an appetite, but I would appreciate you taking a few bites.” As opposed to “I cooked all day and you have barely eaten a bite.”

   • “I am overwhelmed with how much there is to do and I’m not sure of how to manage it all.” As opposed to, “I don’t have enough time to do everything.”

4. Take care of yourself. Attend your medical appointments and follow up on recommended care. Making time for your appointments may be difficult but caring for yourself and staying as healthy as possible ensures your longer-term ability to care for your loved one. 

5. Talk to someone. You may feel similar emotions as your loved one – times of sadness, anger, or fear. Discuss those feelings with your family, or if this is too uncomfortable, share your feelings with a trusted friend or professional. Iris offers mental health therapists to assist with counseling and support needs. Your community or treatment center may also offer a caregiver support group and there may be options for online support as well.  

It takes strength to feel comfortable asking for and accepting help. It can be a humbling experience but can be beneficial to your well-being. Remember, you can always connect with your Iris mental health therapist for more caregiving support.