Caregiving in Special Situations

There are many ways to be a caregiver. Not every situation is is the same, and it's possible things can change as the cancer and treatment change. Here are some circumstances that might need different or more creative solutions.

Long-distance caregiving

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 might be 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 you feel about your own responsibilities 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 live closer. 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.

• Be ready for unexpected travel on short notice if the person with cancer needs your help.
• Have someone ready to help with your children, pets, and plants if you have to leave suddenly.
• When you visit the patient check  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 those 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?
• Have your loved one use a recording device at the doctor appointments or have you on speaker phone to help you to know what is going on with treatments.
• 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 their phones for speed dialing.
• Use a website that lets people sign up for different jobs or tasks, such as Lotsa Helping Hands and CaringBridge. Then you can keep an eye on what’s needed and what’s being done.

Try to plan your visits. Talk to the patient ahead of time about what’s needed and set clear goals for your visit. Remember to 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.

Caregiving for a parent when you're a young adult

If your parent has cancer, you may feel torn between independence as a young adult and helping your parent. Caregiving can be a rewarding way to reconnect with parents. It may also limit your freedom and ability to explore new opportunities.

As a caregiver for your parent, you may be concerned about how to support them when you have limited time and resources. Meanwhile, your friends lives may revolve around careers, relationships, and outside interests. You might feel very alone in managing your new responsibilities and emotions.

Talking with your parent and siblings is important during an illness. You may feel uncomfortable talking about difficult topics and want to avoid these discussions. But talking about your shared concerns with family members may give you more support. It also helps each family member understand what is expected and needed. Here are some things that could help ease the burden you may feel.

• Avoid discussions when you are rushed, if possible. Schedule time for regular meetings.
• Respect your parent's privacy. Ask if it's all right to tell others about their illness.
• Ask your parent about his or her treatment wishes. Respect those wishes and your parent's right to control his or her own health care decisions.
• Talk about how to manage finances during your parent’s illness.
• Set realistic expectations about your caregiving role. Agree to review these expectations on a regular basis.
• Write a letter or record your thoughts if you find it hard to bring up these topics. This may help set the stage for easier in-person talks.

Caregiving for someone 65 or older

People age 65 and older may have other health conditions to manage in addition to cancer. These other health conditions are called comorbidities or co-existing conditions. Arthritis, diabetes, and high blood pressure are examples of co-existing conditions. Some things to think about and help your loved one manage include:

• Reactions to medicines - unwanted reactions between cancer medicines and other medicines.
• A slower recovery from cancer treatment because of other health problems.
• Cancer treatments making other conditions worse.

Make sure you know which pharmacies (and their phone numbers) are filling each medication.

Make the living space at home safer by adding grab bars, extra lighting, and removing clutter to prevent falls.

Caregiving for someone with a brain tumor

In addition to physical changes, a brain tumor or brain metastases may affect a person’s ability to communicate or make decisions. It's important for you and the patient to understand there might come a time when they will not be able to make decisions about their health care. It's important to think about naming someone else to make those decisions before it becomes necessary. Things for the person with cancer to consider include:

An advance directive: An advance directive is a legal document that explains how you (the patient) want medical decisions about your care to be made if you cannot make them yourself. Give a copy of the document to the health care team. Also, keep a copy at home.

Durable power of attorney for health care: A durable power of attorney for health care is a legal document that names a person to be your health care proxy, a person who can make health care decisions for you if you are unable to make these yourself.