Incontinence in a relative or someone else close to you is impossible to ignore: the odor, the mess, the cleanup. Ironically, the subject is often ignored anyway -- at least for a while -- because of the complicated emotions connected to a loss of bodily control. Embarrassment and frustration may feed denial on either side. And because urination and elimination are so personal, awkwardness about broaching the issue can feel almost paralyzing.
Looking after someone in failing health is fraught with tough conversations. But as challenging as unfamiliar and emotionally charged topics can be -- especially those that tend to flip our usual family dynamics -- they don't have to be forbiddingly uncomfortable. Talking is almost always better than ignoring, provided you prep yourself first on what to say and how to say it.
Before you say a word
Talking about incontinence successfully starts with careful thinking.
Know your role. If you're going to help someone, you need to be perceived as being helpful. "Be the person's advocate, not an adversary," says geriatric psychiatrist and internist Ken Robbins, a Caring.com senior medical editor. Anytime you feel strongly that a behavior is unsanitary, unsafe, or otherwise problematic, it's wise to get a third party involved. This sidesteps nagging and arguments and instead gives you the role of supporter, helping the person follow someone else's advice.
This distinction is especially useful with a touchy issue like incontinence. "It's hard to stick to a calm discussion where you're kind and supportive when you're thinking, 'Dang it, this is the eleventh night in a row he's peed in the bed!'" Robbins says.
Know your goal. With incontinence, the caregiver's number-one job isn't to coax the person into adult diapers -- it's first to get the problem assessed by a physician, so you can help the person deal with expert recommendations.
Before deciding on your own that diapers are the solution, it's always wise to get medical clarification of the problem. Many causes of incontinence are easily treatable, including urinary tract infections, prostate problems, medications, and consuming certain foods or drinks.
How to set up the conversation
Your first incontinence discussion should simply do two things: raise the point that there seems to be a problem, and encourage the person to agree to a medical evaluation.
To set the scene for success:
Figure out who should do the talking. Is it you? Maybe, if you have a close, minimally-contentious relationship or already handle doctor visits. Also consider if the person might feel more comfortable discussing personal hygiene and/or medical problems with someone else -- for example, an adult son or daughter of the same gender, or a close friend.
Picture the person's conflict style. We all respond differently in situations that involve negotiation. Reflect on how the person has reacted when asked to do things in the past: Is he or she usually open-minded? Easily angered? Or someone who simply clams up? Anticipating a reaction helps you work around it. For example, if the person tends to greet your suggestions with anger because he or she feels like you're being controlling, take extra care not to get angry yourself, or you won't get anywhere.
Pick a pleasant time. Potentially awkward conversations tend to go better when people are doing something they enjoy, such as playing cards or engaging in a hobby. Activities like driving or walking have the added advantage of not requiring eye contact, which often helps people open up. People tend to deal with contentious subjects especially well while being fed, Robbins says.
Rehearse your tone. Aim for a casual, empathetic, matter-of-fact tone of voice. "People tend to feel they'll shame their relative by bringing up incontinence, but the only way you can have a productive conversation is to be straightforward," Robbins says. If you show your discomfort, you'll only make the other person more uncomfortable.
The reality is, incontinence isn't about willfulness, spite, or lack of conscious control; it's a medical issue.
So how to plunge in?
Try a gentle, indirect route. "Gee, Marylou said her mom was having problems with incontinence and then she found out it was a urinary tract infection. I can see this has been a problem for you lately, too -- what do you think about seeing a doctor about it, like she did? Apparently there are a lot of easily fixable problems that cause it."
Empathize. "I wish this wasn't happening to you, too. But something's not right, and the doctor can figure out what it is, so you don't have more accidents."
Let the person know they'll be helping you out. "I'm really worried about you. I wouldn't want you to wind up with some kind of complication we don't know about, so it would put my mind to rest if you had the problem checked out."
What to say to the doctor
It can be helpful to call the person's doctor before the evaluation. He or she can't give you information without HIPAA authority to do so, but the doctor can receive information from you. Assume the doctor will tell the patient that you called; if you're not comfortable with that, mention it.
Give honest, detailed observations. Say, "I know you can't talk to me about Mom's condition, but let me fill you in on what's going on." Note the frequency and timing of accidents, the nature of the trouble (needing to go a lot, or not getting to the commode on time), what else is going on at the time (do accidents happen in public, at night, when the person can't physically get to the bathroom fast enough?).
Share insights into the person's conflict-coping style. Especially if it's a new doctor for the patient, explain how receptive the person is likely to be, and how he or she has tended to react to advice in the past -- with denial, anger, acceptance. This provides clues that fuel a better-prepared conversation.
Ask for a preview. Ask, "How do you usually deal with this? What might you suggest?" That gives you a chance to read up on the therapies or otherwise prepare yourself in advance.
In some cases, it works to attend the evaluation and have this discussion in front of your relative, in a casual and respectful way. This minimizes the risk of appearing to go behind his or her back.
What to say after you get "doctor's orders"
Whether the recommendations include incontinence products (like special briefs), behavioral changes (like scheduled bathroom visits), therapies (like pelvic floor exercises), or medication, cast yourself in the role of supporter to get the best results.
Be sympathetic to the person's perspective. "I know you think this is a drag, and I wish you didn't have to do this, but the doctor says you to in order to be safe." Or, "I know you don't like that, but it's what the doctor wants you to try for now." Nobody likes wetting himself, and people are usually relieved and cooperative about finding a solution.
Use terminology that feels right to the person. Most people cringe at the phrase "adult diapers." These days, incontinence-care products are usually called "briefs" or "underwear." (Many products are styled just like regular underwear, to be pulled up, and they come in men's and women's styles.) Explain, "These special pants are made of an absorbent material so that if you leak, it won't show before you can go and change."
Emphasize the advantages. "If you have an accident, nobody will know. You'll also save your clothes. Now you can keep going out and living a normal life."
Normalize incontinence. Humor helps. "Weak bladders happen to a lot of people when they get older, Ma. Why do you think there are so many products out there to help people deal with it?"
- Don't fall into some common traps. Learn six things never to say to an incontinent person.
Incontinence and Mild Dementia: How to Talk About It
Recent memory is lost first with dementia. So you'll need to adjust your approach accordingly.
Keep invoking the doctor. In early to moderate dementia, the person is likely to understand and respond to the doctor's prescriptions. But the problem is that they forget that this conversation ever took place. Frame your prompts each time as coming from the doctor: "Here are your briefs. Remember what the doctor said, that this is what you need to do for now."
Empathize. "I can understand why you don't like this. But I care so much about you -- I wouldn't want you to wind up with a bigger problem, so if the doctor said it, I guess we better do it, huh?"
Switch cold turkey. If the person can use underpants-style incontinence products, remove all the cloth underwear and replace them with the disposables. If the person notices the difference, or panics that the old underwear has been "stolen," casually remind, "Those are yours. They're the special underwear the doctor wants you to use." With repetition and adjustment, the person can learn to think of them as the "new normal."
Incontinence and Severe Dementia: What to Expect
In later stages of dementia, the person may no longer be capable of insight into the fact that they've been incontinent. They may wake up and say, "Oh, you must have spilled water in my bed." An hour later, they may forget even that.
At this stage of impairment, Robbins says, the person may remain cooperative. Or the person may begin to refuse therapies such as scheduled bathroom visits -- or may even try to remove a diaper. It can be difficult to convince someone in late-stage dementia about the importance of following doctor's orders or staying clean. By this point, there are usually other behavioral problems going on as well.
It's often not helpful to try to reason with someone who has late-stage dementia. Often their beliefs are fixed, and your attempt to change their mind will be met with anger rather than as new information to consider.