Today, people are managing a cancer diagnosis better than ever before, and many are able to manage their treatment over the long term or are even experiencing remissions. For caregivers or individuals caring for a loved one with long-term illness, this can prolong their caregiving role. Here are some helpful hints for caregiving for a loved one with a long-term illness.

Long-Term Caregiving

When you are caring for a loved with a long-term illness, caregiving becomes a marathon rather than a sprint. A caregiver’s involvement and role may change depending on their loved ones’ health.

As a caregiver, it is important to know and accept your own limits. Stress develops whenever you start to feel that your responsibilities are greater than the time, energy, or other resources that you have to meet them. Stress is common among caregivers of people coping with cancer who face so many competing demands. This can be especially challenging when your role as a caregiver may change over time, sometimes unexpectedly, depending on your loved ones’ health. Finding ways to manage stress can help you feel better, protect your health, and make you better equipped to care for your loved one.

Acknowledge your emotions. A chronic illness might make it necessary for you to adjust the plans you had for yourself, and this can affect you emotionally. Set aside a few minutes to reflect on your thoughts and feelings about the pressures and expectations, and what it is that you would really like the day or month to be like for you.

Reflect on strengths you and your loved one have developed. Many families who face the challenges of cancer discover courage they didn’t know they had. For example, you may recall how brave your loved one was while receiving chemotherapy or how successful you were in advocating for their needs. Acknowledge the strengths you and your loved one have developed, and build on them whether your loved one is going through treatment or has a temporary break from treatment.

Adjust expectations, especially during holidays. A long-term illness may mean your loved one is in remission one year but undergoing treatment the next year. Consider if an upcoming event may place too much of a burden on you or your loved one. Think about how you’ve helped each other feel better during a difficult time in the past and how you can adjust going forward.

Find someone to open up to. Don’t keep your emotions bottled up. Sharing your feelings with someone you trust – a partner, sibling, other family member, friend, spiritual leader, or social worker – can make your concerns seem more manageable. Caregiver support groups are also available. These can give you an opportunity to meet and learn from others in similar situations. CancerCare’s professional oncology social workers provide free counseling and support groups (including online and telephone support groups for caregivers) to you and your loved one to help you cope with your role as a caregiver.

Recognize that you are doing your best. There is no “right” way to be a caregiver. It’s important to give yourself permission to acknowledge your efforts as a caregiver and to be patient with yourself as you navigate this role.

How Do I Care for Myself During this Difficult Time?

Caring for a person with cancer on a long-term basis can be stressful and overwhelming. Keep in mind that long-term stress can impact your own physical health. When unmanaged, long-term stress may increase your chances of developing chronic health problems, such as heart disease or high blood pressure. You need to make sure that you are caring for yourself so that you have the strength and energy to give your loved one the best care possible.

• Maintain contact with friends and family. Social isolation can increase emotional distress.

• Watch for signs of emotional distress: constant sadness and/or fear, panic or extreme anger. If any of these symptoms make it difficult for you to accomplish your daily tasks, speak to a doctor, nurse or social worker.

• Listen to friends or family if they notice changes in your mood. Sometimes they see changes that you might not recognize yourself.

• If possible, try to give yourself a half-hour to an hour each day outside the house.

• Remember to eat three meals every day. Even if the meals are small, they will give you energy to take care of your loved one.

• Drink water regularly.

• Try to get uninterrupted sleep (6–8 hours). This might require that you get some assistance in caring for your loved one at home.

• Take time to exercise.

• Allow yourself time each day to have quiet restorative time.

• Keep up with your own doctor’s appointments and medications.

• Reach out for support.

Edited by Carly O’Brien, LCSW, OSW-C

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This fact sheet was made possible by AbbVie and Takeda Oncology.

Last updated May 22, 2017

The information presented in this publication is provided for your general information only. It is not intended as medical advice and should not be relied upon as a substitute for consultations with qualified health professionals who are aware of your specific situation. We encourage you to take information and questions back to your individual health care provider as a way of creating a dialogue and partnership about your cancer and your treatment.

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