Resources for Caregivers & Patients

Resources for Caregivers & Patients

Bladder cancer can affect the well being and quality of life for both a patient and those that care about him or her. It is important to know that you are not alone. A caregiver plays an important role in supporting the individual with bladder cancer. He or she often provides physical, emotional, and practical care on a daily or as-needed basis. Providing this support can become a caregiver’s sole focus, especially when a family member or friend is undergoing a long treatment plan. BCAN is here to help. BCAN’s Bladder Cancer Basics Tips for Caregivers shares many tips and suggestions that most caregivers wish they knew when their loved one was first diagnosed.

Cancer survivorship begins at diagnosis and includes all of the psychological, emotional, social, health, and financial issues cancer patients and their families cope with as they learn to live with their diagnosis. There are resources available to you. You can read more about bladder cancer survivorship and well being here.

Taking Care of Yourself During The Bladder Cancer Journey

As a caregiver, keep this proverb in mind, “Joy shared is doubled, a burden shared is halved.” You and the patient are in this together. Many caregivers wish they had let more people help them throughout their loved one’s cancer journey. Here are some ideas of things that others may be able to help you with. You can also write a list of things that may help you personally. Keep it handy and if someone offers help, you can look at your personal list! Some BCAN caregivers have suggested:

  • Make a meal that you can have in the freezer for dinner on a treatment day.
  • Help with care for your pets or young children if you have them.
  • Help with shopping.
  • Help with yard work. Does the lawn need to be cut? Does snow need to be shoveled?
  • Help in the home. Could someone help with laundry or tidying up?
  • Drive you to medical appointments.
  • Ask someone to spend time with the person with bladder cancer so you can just keep up with the rest of your life. Or so you can just do something for yourself. You must also take care of your mental and physical health.

Caregiver tip – John: “When my wife was diagnosed, I went into Superman mode trying to take care of everything at once. I tried to stay strong and do everything myself. What I should have done was let people help us when they offered.”

You can also take care of yourself by:

  • Set aside time for yourself.
  • Ask your healthcare provider about respite care. Learn more about respite care.
  • Get enough sleep. Learn more about tips for better sleep.
  • Eat well. Visit our nutrition page to get tips on eating well for you and your loved one.
  • If you work in addition to your role as a caregiver, you may need to take time off. The Family and Medical Leave Act (FMLA) helps many workers balance their work and family responsibilities. FMLA allows caregivers to take up to 12 weeks of unpaid leave. Learn more about FMLA here.

Talking about your loved one’s diagnosis

Many bladder cancers are diagnosed after the age of 70, but younger patients are also diagnosed. You and your loved one may have to talk to your children or parents about the bladder cancer diagnosis. There are several great resources for talking with your loved ones.

Difficult conversations about end-of-life

Many bladder cancers are non-muscle invasive and do not progress. Some are invasive and spread to other parts of the body (metastatic). Thinking and planning for what could happen is hard for some people to talk about. Talk to your loved one early and make decisions together about options if treatments don’t work. Knowing their wishes for end-of-life decisions can help you to help them. A legal counselor may be helpful. Having all legal documents completed is a relief for the caregiver and the patient.

Talk about:

  • A living will.
  • Advanced medical directives.
  • Life Insurance
  • Property Memorandum. Don’t forget to include things stored digitally.

The American Cancer Society and the National Institute of Health have some tips on managing end-of-life affairs.

Caregiver tip – Christi: “My husband was an attorney. We already had wills, living wills, healthcare surrogates and powers of attorney established before his diagnosis. We were young at 54 and 51! It was a blessing not to have to think about those things as we got deeper in the weeds of worsening health. Also, my husband lost the ability to speak about two months before his death (brain metastasis, chemo fog, overall weakening.) He was still working up to that point. If we had waited to discuss legal issues, whether and when to ask for hospice, funeral arrangements, etc., those conversations would not have happened. Of course, these are very difficult conversations!”

Other Helpful Resources

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