What You Need to Know as a Cancer Caregiver

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Long-distance caregiving

Caregiving from a distance can be even harder to do and can cost more, too. The cost of time, travel, phone calls, missed work, and out-of-pocket expenses are higher when the caregiver doesn’t live close to the person needing care. Sometimes paid “on-site” caregivers are needed, and this can be another large expense.

There’s often increased stress and greater feelings of guilt with long-distance caregiving. You may worry, “What if something happens and I can’t get there right away?” Or, “Who’s going to make sure they ______ (take their medicine, eat, don’t fall, etc.)?” And if you do have family living close to the person with cancer, you might feel guilty that the burden falls on them and you aren’t doing your share.

Along with this, there’s the guilt felt while you’re with the person with cancer: “Who’s going to ______ (pick up the kids from school, cook dinner, walk the dog, etc.) at home while I’m gone?”

You also may feel left out of decisions made by the person with cancer and those who do live nearby. But there are things you can do to help your loved one and take an active role in their care – even when you’re far away.

  • When you visit the patient check the house for safety issues like cluttered walkways, loose rugs, or bad lighting. Maybe grab bars in the bathroom or a shower seat would be helpful. Help make improvements or arrange for someone else to do so.
  • Is the house clean? Is the yard cared for? Is there food in the house? Arranging help for chores like these can be a big help to the person with cancer.
  • Get in touch with people who live near the person with cancer. This may be other family members, friends, neighbors, or the doctor. Call them. And make sure they know how to reach you.
  • Plan for a crisis. Who can you count on to check on your loved one any time, day or night?
  • Keep a list of all the medicines and treatments the patient is getting (include doses and schedules), and update it regularly.
  • Make sure the person with cancer can reach you and others who help with care. This might mean buying a cell phone for your loved one or arranging for a long distance plan on their land line phone. You can also program important numbers into the phones. This can serve as a phone number directory and help with speed dialing.
  • Set up a website that lets people sign up for different jobs or tasks. (See Lotsa Helping Hands and CaringBridge websites in the “To learn more” section.) Then you can keep an eye on what’s needed and what’s being done.

Try to plan your visits. Once you get there you may be overwhelmed by everything that needs to be done, but having a plan keeps you focused and less stressed. Talk to the patient ahead of time about what’s needed and set clear goals for your visit. And don’t forget to visit! Remember to just spend time with them and do some activities together – things that you both enjoy.

If other family members are doing most of the hands-on work, you can step in for them to give them some time off. Maybe you can plan a visit so they can go on vacation or just take a much-needed break.

From a distance, it may be hard to feel that what you’re doing is enough or important. But sometimes the distant caregiver is the one who ties things together and keeps everything organized. You may be the one called because you know what to do or where to go for help when something is needed or a problem comes up.

Last Medical Review: 03/05/2014
Last Revised: 04/28/2014