Caring For Someone With Bladder Cancer: A Partnership

Caregiver, patient expert

According to the National Cancer Society, the majority of bladder cancers occur in the older population, with the average age of at the time of diagnosis being 73. This makes bladder cancer an additional awareness issue for older adults and those who provide care for them. As with other cancers, taking preventive steps is best, so stay on top of any possible symptoms.

Dementia caregiver Jennifer Rowan knows this firsthand. Jennifer told me that she noticed a sudden decline in her mother’s demeanor, so she took her to a doctor who then diagnosed a bladder infection. Because of the severity of the infection, Jennifer’s mother was referred to a urologist who discovered cysts in her bladder. Because these cysts could eventually turn into cancer, her mother must have an exam every two years, and any new cysts must be biopsied. This is an example of why it’s wise to address any sign of a bladder problem.

What if there are no signs of disease until cancer is diagnosed?

If this is the case, you have now become a caregiver for a loved one who lives with some stage of bladder cancer. As with all diseases, the person who must live with the symptoms of the disease—and the often-unpleasant treatments—has the worst end of the bargain. However, being a caregiver for someone with bladder cancer will bring with it emotionally and physically draining challenges for you, as well. But caregiving, or care partnering, can strengthen your connection with your loved one, adding a new dimension to your relationship.

What is your role as a caregiver or care partner?

As a long-term caregiver for multiple people, I believe that while we provide innumerable services to our loved ones, caregivers’ primary goal is to provide support and comfort. This applies across the board; however, how we do this will vary with personalities, diseases specifics, and relationships. Even the timing of the kind of care we provide may vary over the course of the disease.

For example, let’s say you’ve been married for nearly 30 years. You are aware that your husband is stubborn about going to see a doctor, yet he seems preoccupied, and his expression, especially when he exits the bathroom, seems worried. If you notice a pattern, gently ask him if something is wrong. If he brushes you off, you may want to give him some space, but approach him again later. Maybe, with some gentle nudging, he’ll eventually mumble something about seeing some blood in his urine but he’s sure it’s “nothing.”

This could be your cue to press the issue further. You can do some online research, even if he says he has that covered. Then, talk with him firmly, explaining that the blood may be harmless, but it could also indicate a problem with his prostate, his kidneys, or his bladder, and the sooner the cause of this bleeding is determined, the better. Most likely it’s fear that’s keeping him from taking action, and he may need that extra push from you.

A caregiver’s role adjusts with the challenge

Finally, he agrees to see a urologist, he has tests, and together you wait for the results. You, the caregiver, will likely need to go back to your kid-gloves approach. You are scared to death but you’ll have to remain strong. While you’d like to scream at God and fate, you need to remain positive. Demanding so much of yourself is draining, but for now you need to determine what your husband needs and do your best to provide it.

Is your head spinning yet? Do you wonder how you can fulfill the demanding role of being a caregiver to the person who has always been your rock? You aren’t alone with this feeling. Most caregivers are fearful that they won’t know what to do. But you will. Educate yourself, stay tuned in to your husband’s changing needs, and you’ll be fine.

Here are some possible duties that will fall to you:

  • Helping your husband with scheduling appointments, transportation, picking up prescriptions, and experimenting with how to provide relief from pain in the home setting.
  • If your husband is worried about the effect of his disease and treatment on your sexual relationship, tell him that you are happy to talk with the doctor together about this, too, if and when he chooses.
  • Family caregivers are now often expected to perform some medical procedures for their care recipient. You’ll want to discuss with the doctor whether or not you can learn to do these procedures or if you should hire an in-home health agency to help out.
  • You will be the intermediary between your husband and his family and friends, helping them understand what he needs in the way of support, companionship, and time alone.
  • One vital part of caregiving is to know how much care to provide while letting the care receiver do as much for himself as possible. Don’t get so carried away with your role that you take away your loved one’s dignity. Work to find a balance as his need for care shifts.
While we provide innumerable services to our loved ones, caregivers’ primary goal is to provide support and comfort....How we do this will vary with personalities, disease specifics, and relationships.

Caring for the caregiver

If you find that you are one of the many caregivers with your own health conditions, you’ll likely need extra help with caregiving duties sooner than if you’d had no illness of your own. That’s okay. Caring for your own needs is vital at this stressful time, so do what you need to do.

No matter how healthy you are, you may need to hire an in-home care agency if your husband needs around-the-clock care, or even just a few hours of care each day. You need to have time to go out on your own, see friends, attend to your own health needs, and/or go to a caregiver’s support group.

Long-term caregiving can take a terrible toll on the caregiver, and letting your health go will not help your husband. You need support from those who understand what it takes to be a caregiver. The Bladder Cancer Advocacy Network (BCAN), the American Cancer Society, and the Cancer Support Community websites are all good resources for online support. These sites have hotlines that you can call if you have questions. The oncology department treating your husband may be able to help you find a local specialized support group, as well. Self care is a crucial element to being an effective caregiver, so don’t relegate it to the back burner. Remember that your husband is counting on you to stay healthy, and self care is of part of your job description.