Living with Incontinence: Social and Emotional Challenges
By Family Caregiver Alliance
Most people who live with incontinence do not tell anyone about it, often not even their doctor(s) and especially not their friends. Family members might be the ones to bring up the subject, especially if the house is beginning to smell or furniture is soiled. It’s not an easy conversation to have. If you are faced with incontinence, know that you are not alone. One in 15 Americans are searching for ways to deal with this very personal issue. Here are typical feelings associated with continence issues and some coping strategies to consider:
Since becoming toilet trained as a youngster, we never expected that there would ever be a time when we were not going to be able to get to the bathroom on time, or would leak when we sneezed, coughed, or laughed. Certain conditions can even cause you to stop paying attention to your body cues to urinate or have a bowel movement. But now, as an adult, those with continence problems face a negative stigma and too often offensive communication from others.
Coping: You can make it less embarrassing by admitting to it, making a joke, and understanding that this is very common. You have not failed. Your body is going through changes that you can’t control but can only manage the best way you know how.
Outside of embarrassment and shame, you may also feel a sense of impatience, frustration, annoyance, anger, fear, and/or disgust. Or you may sense others experiencing having these reactions. It can feel dehumanizing, as if the condition has robbed you of your quality of life. Grief is triggered when one feels the loss of control, loss of privacy, loss of dignity, or loss of independence. Who do you talk to about all of these feelings? Does keeping these feelings inside make you feel depressed?
Coping: It’s important for you to find someone you can talk to about your feelings. Consider confiding in your physician, a counselor, possibly an incontinence support group, maybe your hairdresser, your sister, or a best friend. Keeping these feelings inside can only lead to a sense of sadness and possibly depression. Admitting to your feelings helps to “take the charge off” and normalize the situation.
Loss of Privacy
The bathroom is the ultimate place of privacy. We can close the door to the bathroom so that no one invades our space when we are there. To have someone come with us into the bathroom can cause a loss of dignity, sense of dependence, and loss of self. Using a commode next to the bed or a urinal will require weighing your need for privacy with your capacity for independence. You are not alone if you feel embarrassed about using products or needing help with these most basic of human functions. What if you need someone to help you wipe yourself? What if your bed partner wakes up to find the bed wet?
Coping: Think about what you find to be the hardest part(s) of needing help. Talk to your caregiver or others sharing your home about how this feels for you, and see what you can work out that will be more comfortable for those directly affected. For example, stashing pads and wipes in a bathroom cabinet and using an effective room deodorizer can help keep the issue private or at least from being ever-present for others who share the bathroom. Putting a drape over a commode and keeping the pot emptied can help normalize the environment.
Anxiety and Isolation
When you go out, do you think about how long you will be gone and where the bathrooms are along your route? Does cold weather make you more anxious about your ability to confidently leave home? Are you afraid to travel or make plans with friends for fear there won’t be a bathroom when you need one? Incontinence often leads to limiting activities, declining social invitations, and avoiding travel. The anxiety of trying to find a bathroom in a strange place or needing help from someone when you go to the bathroom may keep you from leaving the house. Always thinking about this issue is not only tremendously burdensome but can keep you from enjoying activities and companionship.
Coping: Carry extra protection with you, whether it’s pads, underwear, or both, to give yourself confidence knowing that you have extra security on-hand. Know that whatever happens can be dealt with. Let friends/family know that you have to stop frequently to use the bathroom. This allows everyone to plan accordingly. Coping by socially isolating yourself isn’t healthy. Isolation can lead to depression and increased risk for other illnesses. Allow others to help you search for solutions to help address this problem.
It’s not easy to be odor free when you are living with incontinence. You may not smell anything out of the ordinary, as our sense of smell adapts over time to a constant odor. It’s also true that sense of smell decreases with both age and many chronic illnesses including Alzheimer’s disease, Parkinson’s disease, and stroke. If someone else brings up the topic—hopefully in a respectful way—be open to reevaluating what you can do to manage odor better.
Coping: Denial happens when you don’t want to admit a problem.When someone else brings up the topic, be willing to discuss the problem and possible solutions. Talk with your physician, nurse, or an occupational therapist for more tips on managing and living well with incontinence.
There are many products to help deal with incontinence. Different products help in different situations. What you use will depend on whether there is urinary incontinence only or also bowel incontinence, and whether you are dealing with a more advanced case of incontinence or simply minor leakage. Available products include commodes, urinals, pads, adult incontinence underwear (wrap-arounds or pull-ups), and plastic covers for the bed and a favorite chair or couch. Urinary incontinence in early stages can be dealt with by using absorbent pads in underwear. Pads come in different sizes for mild to severe incontinence. If the condition worsens, protective underwear can be used. These undergarments are now available like regular underwear with elastic waistbands and are easy to put on and take off. For lighter leaks, underwear liners often work well and are the least intrusive.
Coping: Talk with your physician about products, or check out the options at your local pharmacy. Your physician can give you a referral to an occupational therapist who can evaluate what products would be best for your situation. Often people find it easier to accept wearing underwear liners or absorbent pads than protective underwear.
It’s not “giving up” to use a product. Using a product can help keep you maintain dignity and independence.
When It’s More than Urinary Incontinence
Bowel (fecal) incontinence presents additional issues. There can be the issue of odor and the discomfort of having stool next to your body for any amount of time. There is the need to clean up after an accident, which might mean bathing or showering, and the problem of disposal of the underwear that is soiled. At some point you may not be able to handle these tasks independently, relying on help from someone else. Paid help can often assist with these tasks easily, but a family member or partner taking care of the same task might have more difficulty. A negative reaction can leave you feeling ashamed and vulnerable. If help is needed in the middle of the night, not only is there a higher risk for falling, but also you might find yourself reluctant to wake your care partner to help. But not doing so is uncomfortable and not good for your skin. What is the best thing to do?
Coping: Again, talk openly with those directly involved about your and their discomfort can make it easier on everyone. It’s important for you to state that this loss of incontinence is not intentional. Using language that is appropriate can also raise the conversation to a more mature level, for example not using indirect terms such as “ca-ca,” or “diapers,” but rather directly discussing a bowel problem. You may want to talk with your physician along with a family member or care partner so everyone is on the same page.
Finally, know your options. Sometimes there is nothing that can be done, and sometimes there is. Have your physician do a complete health check-up to rule out a urinary tract infection, prostate problems, and other treatable conditions. If you take diuretic medicine such as Lasix, or other medication that causes frequent urges, look for a way to time taking your dose to maximize the time when you don’t have to be close to a bathroom. Exercise generally helps overall and specific exercises such Kegels are designed to help—but be sure to check with your doctor for what will work best for your specific condition. Alcoholic beverages and caffeine will cause you to urinate more. Consider limiting or timing your intake of coffee, black or green tea, some soft drinks, energy drinks, and over-the-counter medications that include caffeine. Tomato and spicy foods, as well as citrus fruits and drinks, can be irritating to the bladder.
Keeping in mind that you are not less of a person because of incontinence helps you to maintain your sense of self. Recognize that you are not your health condition. Retaining a sense of acceptance and yes, even a sense of humor, may be your best defense to leading a more stress-free and satisfying life.
Family Caregiver Alliance
National Center on Caregiving
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Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research, and advocacy. Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues, provides assistance in the development of public and private programs for caregivers, and assists caregivers nationwide in locating resources in their communities. For San Francisco Bay Area residents, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, ALS, head injury, Parkinson’s disease, and other debilitating health conditions that strike adults.
FCA Fact and Tip Sheets
A listing of all facts and tips is available online at www.caregiver.org/fact-sheets.
Other Organizations and Links
National Association for Continence
Incontinence Support Center
This fact sheet was prepared by Family Caregiver Alliance. Copyright © 2014 Family Caregiver Alliance. All rights reserved.