Caring for Someone with Incontinence: Emotional and Social Issues

Victoria Burke by Victoria Burke | Licensed since 2011
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This article was updated on: 08/31/2017

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Let’s start with a definition of incontinence. According to the National Institute on Aging, incontinence is the condition of being unable to control one’s bladder and/or bowels. If you’re a caregiver, read on to learn more about incontinence and some caregiving tips.

As a family caregiver, you may already have a very stressful job, even without having to deal with incontinence. It might not surprise you that, according to the Family Caregiver Alliance, major incontinence issues are often the tipping point between caring for a loved one at home and considering a switch to nursing home care. Aside from the physical demands of caring for someone with incontinence issues, there are also social and emotional considerations unique to this condition.

What causes incontinence?

Many people associate incontinence with Alzheimer’s disease. It’s true that people with Alzheimer’s – particularly in its later stages – sometimes do have this condition, according to the National Institute on Aging (NIA). But sometimes incontinence can be treated, and it’s not always related to dementia. The NIA lists the following as some of the causes of incontinence:

  • An enlarged prostate gland (in men)
  • A urinary tract infection
  • Dehydration
  • Diabetes
  • Certain prescription medications, such as water pills
  • Lots of caffeine (such as coffee, tea, or caffeinated soft drinks)

Are there tips for caregivers of incontinent loved ones?

The National Institute on Aging (NIA) recommends several things you might try, keeping in mind that different techniques might work for different people.  Check with a doctor or other medical professional to understand what approach is best in your situation.

  • Remind Mom or Dad to go to the restroom every two to three hours. Remember to keep it light and friendly. Instead of giving “marching orders,” try saying “Can you believe it? It’s already been three hours since you went to the bathroom! This would be a good time.” If the person denies “having to go,” say lightheartedly, “Oh, just humor me.”
  • Watch for signs that your parent might have to go. He might pull at his clothes or act restless.
  • Limit your loved one’s caffeine (coffee, tea, or sodas), especially before bedtime.
  • Encourage Mom or Dad to wear clothes that are easy to remove.
  • Bring a change of clothes, protective underwear, and cleaning supplies such as sanitary wipes, whenever you leave the house.
  • Make sure your toilet is easy for your loved one to use. You can get raised seats or toilet frames or rails to help her have something to hold onto while lowering herself onto the toilet.
  • Take care that cleanup is properly done. The Center for Disease Control says that fecal germs (from “Number 2,” or “poop”) can cause diseases. You might want to subtly observe Dad to make sure he cleans himself thoroughly. If this doesn’t seem to be happening, try to intervene cheerfully, perhaps saying “It’s so easy to miss something when you clean up where you can’t see, you know?”

If your loved one gets to the toilet “too late,” having soiled his clothes, try to be patient, the NIA reminds us; he probably feels embarrassed enough as it is.

My loved one won’t wear protective incontinence pads and undergarments; what can I do?

It can be extremely difficult for someone to admit he’s lost the ability to care for himself at this very basic level. It’s not unusual for incontinence to be met with anger or even denial, notes the Family Caregiver Alliance.

Try having a calm, honest conversation from your point of view, explaining that incontinence issues affect your ability to provide good care, and that using incontinence products would make things easier for both of you. Be tactful and avoid potentially hurtful comments such as “It makes the house smell bad.”

Sometimes it can help to keep a positive spin on things to help preserve your Mom’s or Dad’s dignity. You might want to try introducing protective underwear to your loved one as if it’s an exciting new idea. “I love these things,” you might say, implying that you wear them too. You also might want to refrain from using terms like “diapers” when you refer to these undergarments; try “panties” (for women) or just “underwear.”

How can I handle my embarrassment providing incontinence care?

Embarrassment is a two-way street for many families dealing with incontinence, says the Family Caregiver Alliance (FCA). Both you and your loved one may be embarrassed when an accident, and the accompanying personal cleanup, occurs. It’s difficult to be part of the loss of dignity caused by incontinence issues.

Talk to supportive family members and friends, or even a health-care professional, when you feel overwhelmed. Get help, the FCA recommends, either from another family member or a paid home health aide, when you feel unable to cope with your feelings of embarrassment over incontinence issues.

What if I’m angry or resentful of incontinence issues?

It’s hard to always be cheerful when you’re caring for someone with incontinence; you may feel as if the person did it “on purpose” to punish you or chose a particularly inconvenient time to have an accident, according to the Family Caregiver Alliance (FCA).

The FCA suggests seeking help with these very common issues through a support group, whether online or in person. You’re likely to find coping tips and strategies from others in your situation. You may also want to talk things over with a doctor or occupational therapist and get recommendations for products and equipment to make your job easier. Remind yourself that your loved one has no control over her incontinence.

Is there help if I’m feeling exhausted and overwhelmed?

There’s no doubt that incontinence issues add to your workload and frustration, notes the FCA. Extra laundry; deep-cleaning carpets, bedding, and upholstery; and frequently interrupted sleep can leave you exhausted, with limited time to manage your other family and household chores. Even if your loved one uses incontinence pads, there may be leaks, frequent changing, and personal care to deal with. Your budget may be stressed by the cost of incontinence supplies.

If your loved one has dementia, you may want to consult a support group to help you learn ways to communicate with, and enlist cooperation from, him or her.

Talk to other caregivers for help reducing the expense, the FCA suggests; you may be able to find coupons or better prices searching online. If it’s possible, this may be a good time to consider paid caregiver help to relieve some of the strain on you. In some cases, you may decide the best option is placement in an assisted living facility or nursing home. Although you may struggle with feelings of guilt and grief over the decision, it may help you return to your original role as adult child or partner and provide the love and support your loved one needs while caring for yourself and your family.

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