Caring for Caregivers

Supporting someone through diagnosis and treatment of cancer may be one of the most important things you’ll ever do. It’s a big job. Organization can make the difference between an overwhelming experience and a difficult but manageable one.

Making a Family Caregiving Plan

You cannot do this alone! Putting a plan for caregiving support in place early will help avoid burnout and even physical illness later on.

  • Know what you might need: babysitting, transportation, respite for yourself, meals, shopping, housekeeping or lawn care help, a dog walker. Your list is your own. Add to it as you go ahead.
  • Let people know what you need. Many people do want to help but don’t always know what to do. Be specific.
  • Put key information and lists in a notebook where you can find it and use it easily.
  • Give your children things to do. Kids can feel left out and alone when a parent has cancer.
  • Organize help. Ten chicken casseroles in one day and no dessert the next week can be more stressful than no help at all. Lotsa Helping Hands provided through the Family Caregiving Alliance is an online tool that can keep helpers organized. Or try asking a special friend to keep track of supporters.
  • Be ready to accept help. Accepting help is not an admission of failure but a sign of strength and being in control.

Family Caregiving Burnout

Without good support, some family caregivers will begin to burn out. Some signs of burnout are irritability, constant fatigue, apathy, guilt, beginning to blame the patient for problems, difficulty sleeping, changes in appetite, depression, and resentment.

Isolation can contribute to burnout. So can unrealistic expectations of yourself and the situation you are in.

Some ideas about how to deal with potential or actual burnout are available from the Family Care Research Program at Michigan State University. They suggest that you:

  • Share decision-making with the person you are caring for.
  • Get exercise and good nutrition.
  • Set realistic goals.
  • Set aside time for yourself every day; self-care is not a luxury but a necessity.
  • Plan for regular respite to do something that you want to do.

Assess possible overload using this checklist and get help from your doctor or nurse, a local support group, or an organization that helps caregivers. Partners in Care at Michigan State University also provides other self-assessment checklists to gauge anger, stress, stress in the person you are caring for, and your level of support.

Give yourself credit, not guilt.

You’re only human. Occasionally, you may lose patience and at times be unable to provide all of the care the way you’d like. Remember, you’re doing the best you can, so give yourself credit. Being a devoted caregiver is not something to feel guilty about. Your loved one needs you and you are there. That’s something to be proud of. And if your loved one could – he or she will thank you.

MSU Family Care Research Program

Where Can You Go for More Information

Partners in Care, developed by the Michigan State University School of Nursing, has excellent information and extensive links to more good websites developed through their Family Care Research Program. Partners in Care has a focus on cancer care.

Ten Ways to Reduce Caregiver Burden and Stress from Partners in Care.

The Family Caregiving Alliance advocates for the needs of family caregivers and provides excellent information through their publications, fact sheets, and audio teleconference archives. Online discussion groups sponsored by FCA are a place to get support and share information and tips with other caregivers.

Caring Connections is a project of the National Hospice and Palliative Care Organization and provides support and information for patients and caregivers through the process of planning, care, and grieving.

The National Cancer Institute When Someone You Love has Advanced Cancer: Support for Caregivers can be read online, downloaded and printed, or ordered from NCI.