Advanced Bladder Cancer: Resources to Support Caregivers.

Published 7 months ago

Caregivers of people with advanced bladder cancer may feel overwhelmed by their daily responsibilities. It’s important to reach out for support to maintain well-being and be there for your loved ones.

A cancer diagnosis can change the lives of all family members. The person with the diagnosis may rely more on caregivers to manage aspects of their medical treatment and activities of daily living. If you are a caregiver of someone with bladder cancer, the task can be meaningful but overwhelming.

It’s common for caregivers to feel at a loss for how to get help. You may neglect your own needs for emotional and financial support.

However, the bladder cancer community has many resources to help with your financial and emotional stress, as well as provide social support and respite so you can get a break from caregiving once in a while.

Here are some resources for advanced bladder cancer caregivers.

Why caregivers need support

Caregivers have an important role in the life of someone with bladder cancer. You may find yourself acting as an advocate for your loved one, helping with activities of daily living, and providing basic medical care, like administering medications.

It’s perhaps not surprising that the emotional lives of you and the person you care for are closely linked. A 2021 study with 382 people undergoing bladder cancer surgery found that the caregivers’ psycho-emotional well-being was deeply connected to those having the procedure.

Researchers concluded that better well-being among caregivers could improve quality of life and specific health outcomes among those with cancer.

A 2022 study analyzing social media posts made by people with advanced bladder cancer and their caregivers between 2015 and 2021 revealed a number of unmet needs.

For caregivers, the most common unmet need involved the cancer’s psychological impacts. Other unmet needs were support groups and the desire to share their experiences.

Fortunately, there is a growing list of supports available to caregivers. These may begin to meet the needs of people like you who are caring for those living with this challenging medical condition.

1. Emotional and social support

You can find support and comfort among fellow caregivers. Connecting with those who know what it’s like to care for someone with bladder cancer can be important for emotional well-being.

Toll-free line for emotional support

The Bladder Cancer Advocacy Network (BCAN) has a toll-free support line for caregivers, people with bladder cancer, and those who have lost someone to the condition.

The toll-free line is 833-ASK-4-BCA (833-275-4222). Oncology social workers with knowledge of bladder cancer offer emotional support as well as information and referrals.

The line is available Monday to Thursday 10 a.m. to 6 p.m. Eastern Time (ET) and Fridays 10 a.m. to 5 p.m. ET.

Peer matching with other caregivers

BCAN’s Survivor to Survivor program matches people with a new diagnosis of bladder cancer and their caregivers to survivors and co-survivors. All survivors who participate are volunteers.

To request a match, you can call 301-215-9099 or email survivor@bcan.org.

Online and in-person support groups

BCAN hosts an online support network through Inspire. The network is designed for caregivers, families, and people with bladder cancer to exchange information and support.

There are also many in-person support groups for people with bladder cancer, some of which welcome caregivers. BCAN maintains a list of such groups, organized by state. You can review the list on the BCAN website.

Counseling and therapy

According to the American Cancer Society, some caregivers, although not all, may develop symptoms of depression. Talking with a mental health professional, such as a therapist or counselor, can help you manage these symptoms.

You may want to seek help from a mental health professional if you:

feel physically sick
feel hopeless or depressed
feel like harming yourself or hurting those you care for
misuse alcohol or other substances
fight with family members or friends
do not show yourself self-care

Your primary care doctor or an oncology nurse may be able to refer you to a mental health professional to help you find support.

2. Professional home health support

Caregivers may take on a significant proportion of their loved one’s healthcare. A professional home care service can help with these duties, even part time.

A home care service can provide many healthcare professionals, such as:

registered oncology nurses who provide wound care, chemotherapy treatments, and pain management
physical therapists who can help with movement after an injury or procedure
occupational therapists who can help with daily task rehabilitation to support independent living
hospice care providers who offer emotional, spiritual, and other support to those living with advanced bladder cancer

Other services may be provided by nonmedical professionals, such as:

home care aide who helps with bathing, dressing, cooking, cleaning, and errands
personal attendant who does household tasks, like cooking and laundry
companion who may volunteer to provide respite care

Private agencies often give professional health support. An oncology social worker may be able to refer you to agencies in your area.

3. Respite care

Many caregivers feel overwhelmed or fatigued caring for their loved one. Respite care is designed to help alleviate this.

Respite care usually involves an individual or group of individuals who come into the home to give the caregiver a break. They may include sitter-companions, who spend a few hours each week with the person who has cancer. Community organizations and religious groups may offer this kind of respite care.

A different type of respite care has the person with cancer stay at a specialized care facility while the caregiver enjoys some time away. The person may stay for a few days or weeks at the facility. Insurance, Medicare, or Medicaid may cover some of the costs of this kind of respite care.

4. Financial support

Caregiving often means taking time away from work. This can create a financial burden for the family, as the person with bladder cancer may qualify for disability insurance while the caregiver doesn’t.

Government assistance may be available to caregivers. Several states offer paid leave to caregivers who qualify. Here are the links to more information and where you can apply:

California: Paid Family Leave for Caregivers
Connecticut: Connecticut Paid Leave
District of Columbia: DC Paid Family Leave
Massachusetts: Paid Family and Medical Leave
New Jersey: Family Leave Insurance
New York: Paid Family Leave
Oregon: Oregon Family Leave Act
Rhode Island: Temporary Caregiver Insurance Program
Washington: Paid Family and Medical Leave

The Cancer Financial Assistance Coalition maintains a database of financial resources for people with cancer. You can also contact local branches of the American Cancer Society or United Way to get in touch with sources of funding in your community.

Takeaway

Caregivers need support as much as those with bladder cancer. Paid financial leave, toll-free emotional support, and online communities are just some examples of where to go for help.

People can also arrange for respite care or hire professional healthcare workers to support their loved ones as they navigate bladder cancer so caregivers can maintain their well-being, too.