Caregiving for a Loved One With a Long-Term Illness

When you are caring for a loved one 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 during and after treatment.

Long-Term Caregiving

The demands on a long-term caregiver can be considerable. In order to provide the best care, it is vital to also take care of yourself.

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 you feel, and what it is that you would really like the day or month to be like for you. Writing down feelings can create a concrete record of your experiences.

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 these strengths 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. Consider alternatives to the usual celebrations and the creation of new ones.

Find someone to open up to. Don’t keep your emotions bottled up. Sharing your feelings with someone you trust—a partner, 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 resource navigation, 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.

Edited by Mary Hanley, LCSW