Caregiver Support

Interstitial cystitis/bladder pain syndrome (IC/BPS) is as concerning for those that love and care for the ones suffering, as it is for those experiencing the condition. And coping with the demands of living with or caring for someone with IC/BPS can be challenging or even feel overwhelming. Following these do’s and don’ts may help:

• Do learn what you can about your loved one’s condition and gain an understanding of their diagnosis so you’re better able to participate in discussions or decisions regarding their treatment options.
• Do keep a list of all medications your loved one is taking, along with the dosage and how often they are taken, and keep the list current.
• Don’t forget to take care of yourself. Your needs, health, and well-being are just as important as your loved one’s. You’re not being selfish and you will be a better caregiver.
• Don’t think your help isn’t necessary. Even though the IC/BPS sufferer may get short tempered, angry, or even seem ungrateful for your help, your caregiving is still needed.
• Do acknowledge your own feelings of anger, frustration, worry, or sadness. Your life has been impacted as well and it’s ok to feel that way.
• Do allow your loved one to make their own decisions. You don’t have to decide everything yourself and they need to feel in control of something, even if it’s small or relatively insignificant.
• Do what you said you would do. Your loved one is relying on you.
• Don’t overdo it yourself and don’t be a martyr. Decide what’s important, what can wait, and what can be delegated. Reach out to family and friends for help and accept it when it’s offered.
• Do take advantage of community resources. They are available so you can take a break and not do everything yourself.
• Do find support to prevent or overcome feeling isolated or stressed. Connect with other caregivers that understand your experiences and challenges.

Learn more at Care Givers Action Network.