Family Caregiving and Toileting Assistance: Answering Some Questions by Catherine D'Ambrosio, RN, PhD

Questions on Family Caregiving and Toileting Assistance

by Catherine D'Ambrosio, RN, PhD      dambrosi@uw.edu 

Supporting an elderly family member's toileting continence is a very important responsibility.  It is also however labor-intensive, time consuming, unpredictable, -and sometimes thankless, unpleasant, irritating, provocative, and even dangerous.  Maintaining continence is essential to your elder's self-esteem, pride, and dignity.  Preventing incontinence is also imperative to your elder's healthy, well-bing and their ability to stay in their own home.  Incontinence that cannot be self-managed is the single biggest reason for institutionalization (nursing home placement) of elders.

Is incontinence a normal part of aging?

No.  Although the risk of incontinence increases with advancing age, incontinence is NOT a normal part of the aging process.  Any incontinence should be evaluated by a qualified professional -optimally by a board-certified urologist- -prior to purchasing large quantities of incontinence undergarments.  Some people suffer from multiple forms of incontinence.  Some incontinence problems can be resolved with surgery.  Other types can be effectively treated or reduced in frequency and severity with daily medication.  Other types of incontinence can be effectively managed through the use of behavior modification.

What causes incontinence?

Many things can cause or precipitate incontinence (ranging from infection and dehydration to a prolapsed bladder, enlarged prostate, and detrusor (bladder) muscle instability).  Some medical and surgical treatments can resolve the incontinence entirely.  Other medical and surgical treatments can only lessen the severity of incontinence for some individuals under particular circumstances. 

Some types of incontinence are caused by mobility and / or cognitive impairments (problems).  Other types of incontinence are made worse by mobility and / or cognitive impairments.  Incontinence that is caused by -or made worse by cognitive or mobility impairments are called "functional incontinence".

So while your elder:

1. may have a normal bladder, or
2. may have had a bladder surgery to correct a problem that was causing incontinent episodes, or 
3. maybe getting medication that might lessen the severity of their incontinence, 

the incontinence may still be a problem.

WE HAD THE PROBLEM FIXED WITH SURGERY AND TREATED WITH MEDICATION EVERY DAY.  SO WHY IS MY ELDER STILL INCONTINENT?

Incontinence is often still a problem after surgery and despite being on incontinence medication because your elder may have "functional incontinence" (a nursing care issue) on top of their medically or surgically-treatable incontinence.

Functional incontinence is defined as incontinence caused by physical access or mobility problems, or cognitive impairments -such as stroke or dementia that prevent or impinge upon an individual's ability to get to the toilet and use it appropriately in a timely manner.  Functional incontinence can exist independently, worsen the effects of other forms of incontinence, or continue to persevere after other forms of incontinence have been effectively treated.

Being diagnosed with something like "detrusor muscle instability" and treated with incontinence medication, or having the prostate removed or prolapsed bladder repaired isn't going to affect your elder's ability to get up out of bed and safely get to the toilet.  Likewise, if your elder is confused -because for example, they are suffering from some form of dementia, the incontinence medication is not going to help your elder figure-out how to resolve the sensation of a full bladder.  The incontinence medication doesn't help your elder figure-out what steps they need to take when they feel the urge to urinate or have a bowel movement.

Once an elder requires routine assistance with toileting, they have only FOUR options for obtaining toileting assistance:

1. Obtain toileting assistance from family caregivers.
2. Hire and pay nursing assistants (out of pocket money) to provide toileting assistance.
3. Leave their home and enter an institution -such as a nursing home.
4. Suffer the deleterious (bad) effects of neglect.

Because most elders desire to remain in their own homes and cannot afford to pay for private duty care, by the time they need assistance with toileting, elders are entirely dependent upon their family caregivers. Family caregivers are often carrying many heavy loads and managing a wide range of responsibilities including:

1. raising their children,
2. managing work responsibilities,
3. maintaining spousal relationships,
4. managing their household, and
5. often tending to the needs of more than one elder
6. routinely spending time commuting between their obligations and responsibilities

Determining how best to help your elder to and from the toilet can be a very complicated process -but if it is done correctly- -can make life easier for all parties and postpone or even prevent your elder's need to ever be institutionalized.

There are two areas where your elder may need your assistance to maintain their functional toileting continence: Cognition and Mobility.  An elder's physical mobility needs and their cognitive prompting needs around toileting cannot necessarily be predicted by or from each other.  So while some elders require detailed cognitive prompting and minimal physical mobility assistance, other elders require minimal cognitive prompting and intensive physical mobility assistance to get to the toilet.  Other elders require both detailed cognitive prompting and intensive physical mobility assistance to get to the toilet.  The easiest elders to assist are often (but not always) elders who require minimal prompting and minimal physical mobility assistance.

Cognitive Assistance:

There is a wide range of cognitive assistance your elder may need in order to support and maintain their toileting continence.  Too little cognitive guidance can be confusing and frustrating for all parties.  Too much (cognitive guidance) can be labor-intensive and time-consuming for you (as the family caregiver), and irritating and even provocative for your elder.  

Determining the optimal level of cognitive support can be a tricky business and the amount can vary a bit depending on the time of day and other factors.  A substantial change in the amount of cognitive prompting required for a successful toileting episode can be an early indication of bigger problems (such as delirium) that need to be addressed. 

1. Some elders need only the question:  "Do you need to go to the toilet?" and require no further cognitive prompting.  They know exactly what needs to be done to get to the toilet.  They still may need physical assistance, but you won't need to narrate each step.
2. Some elders may need additional prompting after the initial question of "Do you need to go to the toilet?"  Such as:  

• "Stand-up." 
• "Walk this way."  
• "Step-up here."
• "Watch your step here."
• "Turn around."
• "Pull your pants down."
• "Pull your underwear down."
• "Sit-down."
• "Its OK to go now."
• "Are you finished?"
• "Wipe yourself"
• "Pull your pants-up", etc.

3.  Others require even more intensive prompting with continuous feedback and redirection.

Cognitive prompting can be the most challenging component of assisting the elder to the toilet, requiring time, kindness, patience,