The term caregiver describes the informal, unpaid role of taking care of a loved one with a serious disease or disability. Caregivers can be friends, family, or loved ones of someone with prostate cancer. They may take on many roles. When someone you love is diagnosed with prostate cancer, you may find that you quickly have to become an information specialist, financial advisor, medical translator, and a source for emotional support.
Some caregivers prefer the term care partner, because this term aligns closer to the shared commitment that the person diagnosed with prostate cancer and their loved one are partners in this experience. Whichever term you and your loved one prefer, ZERO celebrates the role you play and respects what you do to support a man with prostate cancer. On this page we provide tips and resources for being a caregiver.
Conversations with Caregivers: A Town Hall
Caregivers play a pivotal role in the prostate cancer journey. ZERO’s Vice President of Patient Programs and Education, Shelby Moneer and a panel of caregivers engage in a casual conversation, sharing their experiences.
Caregiving At The Time of Diagnosis
A prostate cancer diagnosis can be scary. There are usually no symptoms at the time of diagnosis, so hearing the words ‘you have prostate cancer’ may be a shock. It is okay to let yourself be upset and fearful. Everyone deals with the shock of a prostate cancer diagnosis differently. Be patient and understanding in view of the circumstances. Let your loved one take the time he needs to work through the news while you provide support.
Learn About Prostate Cancer
Research as much about prostate cancer as you can. Your knowledge will help you talk to doctors, understand different treatment options, and be supportive while you make decisions together.
A good place to start is the Learn section of the ZERO website. There we have information about treatments, side effects, and many resources. For every recommended treatment, it helps to know about possible side effects. It is also important to discuss the possibility of recurrence with your doctor. This knowledge may not soften the effects of prostate cancer, but it will help you face the future with courage and hope.
Everyone’s cancer is different, so the best place to learn about your loved one’s specific prostate cancer is at your doctor’s office. Visit our Questions For Your Doctor section to view, print, or download resources to help you talk with the doctor. Consider a second or even a third opinion with both urologists and oncologists.
Watch Liz Ostman talk about her own caregiver journey, and the importance of doing your own research after a prostate cancer diagnosis.
Communicate and Work Together
Even prostate cancer cannot destroy the bond between you and your loved one. You are stronger when you work as a team and open up to each other. It is important to communicate and support each other throughout the journey. Talk about your concerns with your loved one and show that you care.
Be there with your loved one at the doctor appointments. He may need you to remind him what questions to ask, to keep notes, or simply to hold his hand. It may help you feel empowered and prepared for the future to make a treatment plan together.
Be Understanding and Patient
Know that you are not alone—and most importantly, ensure that your loved one knows that you are there for support.
Your loved one may sometimes want to talk to his doctor alone so he can address his questions and fears without upsetting you. You are still an important part of his prostate cancer journey.
In addition to learning about the disease, you may also have to learn about managing the costs of treating the disease. Fortunately there are many resources available and people to help. Be in touch with your insurance provider to learn about what is covered. Try to keep notes from conversations with the doctors, insurance, and other specialists. Another good idea is to keep in contact with your hospital’s social worker, patient navigator, or financial advisor to see if they have resources for financial assistance, payment plans, or reduced rates. Set aside some time every week to sort through your bills.
You can also contact ZERO360, our free comprehensive support program that can help access financial resources and solve other financial and insurance issues relating to a prostate cancer diagnosis and treatment.
The New Normal
In some cases, continuing care for prostate cancer simply becomes a part of a man’s life. In living with the disease, make a daily routine that works for you. Determine how best to adapt to this new normal. Many times when people are diagnosed with cancer they use it as an opportunity to make healthy life changes, such as adopting a more nutritious diet or increasing physical activity. Encourage your loved one to make healthy changes, which may help them have better outcomes and recover more quickly.
Watch Bill and Liz Ostman discuss life together in the years since his prostate cancer diagnosis.
Cancer is tough to fight. Often you may not be able to do it alone. Don’t be afraid to ask for help. And when friends, family, and community members ask if they can do anything for you, say yes! If you are too tired after a hospital stay to cook, let them bring over a meal. Have you not had the funds or time to plan a date night lately? Let them treat you to a movie and dinner. Let them show how much they love you.
You provide emotional support to your loved one, but his journey can be tough on you, too. Consider finding emotional support for yourself in the form of a friend, counselor, or support group. There are many services and programs available to help caregivers. We encourage you to take advantage of these resources for yourself. ZERO’s Us TOO Support Group network has virtual groups specifically for caregivers.
Take Care of Yourself
Set aside time in your schedule for activities that make you feel good about you. You are best able to provide your loved one with care when you are feeling good about yourself. Providing support for a man with prostate cancer can be very stressful. Be kind to yourself and accept help from others. See this article for more on the importance of taking care of yourself and avoiding caregiver burnout.
- American Association of Retired People (AARP)
- A guide designed to help develop and implement a caregiving plan for a loved one or friend which includes tips for organizing important documents; a roundup of federal and national resources; information on caring for yourself; and checklists, medication charts and contact lists.
- Find online, telephone, and face-to-face support groups led by oncology social workers. You will also find one-hour workshops focused on caregiving, as well as monthly question and answer sessions with featured experts.
- Cancer Support Community
- Offers tips and resources for caregiving as well as an online, password protected support group.
- A free service where you can provide updates to family and friends.
- Family Caregiver Alliance
- Their family care navigator can help you find a variety of resources in your state, including services and government programs, disease-specific organizations, legal help, and general information.
- Help for Cancer Caregivers
- A resource on all aspects of the caregiver journey, including burnout and stress, finding help, dealing with practical matters, and self-care.
- Imerman Angels
- One-on-one peer support for cancer patients, survivors, and caregivers.
- Lotsa Helping Hands
- A free service where you can provide updates and get help from your private online community with meal deliveries, rides to appointments, and help with household chores.
- Triage Cancer
- Find resources for cancer caregivers on legal and practical matters like taking time off from work, managing family finances and medical bills, replacing lost wages, estate planning, and other matters.