The kind of support that a caregiver provides will be different for each person. In general, caregiving support falls into one of three areas: informational, practical and emotional. This booklet provides examples of how caregivers can help in each of these areas.
A person diagnosed with bladder cancer can feel overwhelmed, and may need informational support directly related to their diagnosis and treatment. Here are specific types of support caregivers can provide:
Learn about your loved one’s diagnosis and possible treatment options. There is information in this booklet on current treatment approaches for bladder cancer. You will also receive information from your loved one’s health care team, and can ask a member of that team what additional resources they recommend.
Understand the potential side effects of the chosen treatment approach. In addition to information on treatment approaches, this booklet lists potential effects of bladder cancer therapy. Your loved one’s health care team can provide additional information on potential side effects, based on the specific drug or drugs used in treatment.
Help your loved one communicate with health care professionals. As you help your loved one manage their bladder cancer, it’s important to remember that you are both consumers of health care. In addition to educating yourself about the diagnosis and treatment options, get to know the members of their health care team, including doctors, nurse practitioners, physician assistants, nurses, dietitians, social workers and patient navigators.
Here are a few things you, as a caregiver, can do to ensure that communication with the extended health care team is as effective as it can be:
Help create a health care journal. Having a health care journal or notebook (either on paper or in a digital format) will allow your loved one to keep all of their health information in one place. It should include the names and contact information of the members of their health care team and details of their treatment plan. The journal can also be used as a diary to capture their experiences while undergoing treatment, and your experiences as a caregiver.
Help prepare a list of questions for their next appointment. This list should include your questions and concerns as well as those of your loved one. Because the doctor may have limited time, create the list in order of importance.
If you can, accompany your loved one to medical appointments. Even if they have a journal and a prepared list of questions or concerns, it’s always helpful for them to have support at appointments. You may think of additional questions to ask, or remember details about their symptoms, treatment or overall quality of life that they may have forgotten.
Write down the doctor’s answers. Taking notes will help you and your loved one remember the doctor’s responses, advice and instructions. If you have a mobile device, ask if you can use it to take notes or record the discussion, which will help you review the information later.
There are many ways that caregivers can help with practical matters (the activities of daily living), including:
Personal care. Depending on how they are feeling, people going through bladder cancer treatment may need help with a number of activities they would normally handle themselves, such as bathing or dressing. Ask your loved one to let you know if they want help with these activities. Some people may want help, but would prefer that it is provided by a paid helper, rather than a spouse, significant other or friend. If that’s the case with your loved one, ask a member of their health care team for recommendations on local home health agencies that can provide these services.
Health care. As a caregiver, you may be involved in some health care tasks that are more typically handled by a nurse, such as administering medication and changing bandages. If you need help with these health care needs, ask the doctor, nurse or hospital social worker about local home health agencies that can send in-home nurses to provide these (and other) services.
Organizing medications. Keeping track of prescription and over-the-counter medications can be a challenge under any circumstances. An inexpensive pill organizer (available at most drugstores) allows for the sorting of medications by day of week and time of day. There are also free medication reminder apps available for use on a smart phone or tablet.
Household tasks and errands. If you are a caregiver to a spouse or significant other, you may already be handling a large share of household tasks and errands. This would be a good time to take short-term responsibility for additional chores, if possible.
It’s hard to watch someone you care about go through the difficult emotions that may arise with a cancer diagnosis, which can range from denial to sadness to anger. There are things you, as a caregiver, can do to help both of you cope:
Listen to your loved one. It’s important to listen without judging or “cheerleading.” Simply listening to and validating what your loved one is expressing can be one of the most important contributions you make.
Support your loved one’s treatment decisions. While you may be in a position to share decision making, ultimately it is your loved one who bears the impact of their bladder cancer and its treatment.
Get information about support groups. Joining a support group gives your loved one a chance to talk with others coping with cancer, and learn what they do to manage difficult emotions. Ask a hospital social worker for a referral, or contact CancerCare. CancerCare offers free face-to-face, telephone and online support groups for people affected by cancer.
Continue your support when your loved one’s treatment is over. The end of treatment means fewer meetings with the health care team, whose support you have likely relied on. You may also have questions about how to transition away from being a caregiver, so getting support during this transition can be helpful.
Remember to Take Care of Yourself
Taking care of a loved one can be a positive experience, but it can also feel like a full-time job, and be very stressful. Many caregivers tend to put their own needs and feelings aside; however, it’s important for you to take good care of yourself. Here are some tips to help you do so:
Ask for help. Consider using My Cancer Circle™ (mycancercircle.net) to organize help from friends and family. My Cancer Circle is a free, private and customizable online tool that enables people facing cancer to organize and coordinate a circle of family members and friends to provide practical and emotional support. This tool provides caregivers of people facing cancer a simple, effective answer to a question they are constantly asked, “What can we do to help?” In addition to family, friends and neighbors, look for professional or volunteer resources in your community.
Stay active. Experts recommend at least 150 minutes (2.5 hours) of moderate-intensity aerobic activity per week, preferably spread throughout the week. Aerobic activity includes the use of cardio machines, walking, running, hiking, swimming and dancing.
Pay attention to what you’re eating. Keeping a balanced diet is an important part of taking care of yourself. Include fruits and vegetables in your meals. Nuts, yogurt, and peanut butter are easy snacks with lots of protein that will keep your energy level up. Pack snacks if you know you will be with your loved one at the doctor’s office or the hospital for an extended period of time.
Get enough sleep. Caregiving can be emotionally and physically draining, and you should try to get enough sleep. The Centers for Disease Control and Prevention (CDC) recommends at least seven hours per night for adults. Also, take naps during the day if you need them.
Keep up with your own checkups, screenings and medications. Your health is very valuable. Stay on top of your own medical appointments, and have a system for remembering to take any medicines you need to stay healthy.
Get emotional support. Caregiving is hard work that can affect your emotional well-being. Taking care of yourself includes coping with many of your own feelings that come up as you care for your loved one. Here are some tips to help you cope:
Take a break. Take some time for yourself regularly. Even if it’s just for a few minutes, doing something you like can help you recharge.
Open up to friends and family. Ask friends or family members if they would be willing to be “on call” in times of stress. You can also plan a regular “check-in” time. And be sure to make time for socializing with friends or family, preferably outside of your home.
Talk to a professional about your feelings and concerns. Many caregivers feel overwhelmed and alone. Speaking with a counselor or oncology social worker may help you cope. CancerCare’s oncology social workers are just a phone call away.
Join a support group for caregivers. CancerCare offers free face-to-face, telephone and online support groups for caregivers. These groups provide a safe haven where you can share your concerns and learn from others who are going through a similar situation.