Incontinence

  • Usually occurs in the bladder first, then in the bowels

  • Urgency and frequency of urination, with decreasing output as fluid intake stops

  • Might require a catheter or Depends

  • May not know that voiding or excretion has already happened, or may express urgency that results in no urination at all

  • May experience more active urinary activity at night, even every hour or two

  • Increasingly frequent accidents in clothing or bedding

  • Potential for urinary tract infections increases once accidents occur

The Signs


  • Embarrassed if an accident occurs while in public or while visitors are present

  • Uncomfortable over modesty issues if someone other than the spouse (or parent, if a child) handles the caregiving

  • Guilty about causing the "burden" of extra laundry

  • Ashamed over the need for a "diaper"

  • Angry at the loss of privacy

  • Frustrated if these basic duties are conducted in a "public" room of the house,
    such as the living room

  • Self-conscious about odors

  • Rushed and panicky as urinary urges occur with decreasing notice

  • Apprehensive about visitors or outings "in case something happens"

  • Depressed about being unable to control basic bodily functions

What the patient may be feeling


What the caregiver may be feeling

  • Vigilant about keeping the patient clean and free of infection

  • More attuned to odors as signals for caregiving duties

  • Tired from doing extra laundry or from getting up through the night for urinary duties

  • Uncomfortable if the patient is someone other than one's spouse or child

  • Afraid to disturb the patient if asleep while the bed clearly needs changing

  • Afraid to hurt the patient while rolling him or her during clothing and linen changes

  • Careful about maintaining the patient's dignity by remaining very casual about these duties

  • Concerned about disinfection so self and others don't become sick

  • Fearful of awkwardness while visitors or children are present

  • May find the clothing and linen changes physically difficult, especially if the caregiver is smaller than the patient or suffers from back pain

  • May sense a shift in the relationship, if husband and wife, to one that is more heavily caregiver/patient


  • When the patient is still able to leave the house, it is wise to bring a fresh change of clothes in a bag left in the trunk or in a canvas bag carried by the caregiver.

  • Cleanliness becomes of paramount importance in order to avoid uncomfortable urinary tract infections. Urine, which is very acidic, is extremely irritating to the skin, especially when left uncleaned for a period of time.

  • As the patient begins sleeping more and more, it can be challenging to keep him or her clean and unsoiled. Perform cleaning routines at the earliest opportunity.

  • Hospice can provide the caregiver with Chucks, which are large, thin, rectangular pads that, when laid atop the bottom bed sheet, can protect the bed linens from wetness and soiling, thus requiring fewer laundry runs.

  • An adult protection product such as Depends works well in absorbing urine. There are various options with regard to the tape closures at the patient's hips---there may be some trial-and-error to find the type that works best for the patient and caregiver.

  • Moistened baby wipes that come in an easy-grab container make excellent cleansing cloths for the soiled patient, can help the busy caregiver wash hands quickly when unable to leave the room, and come in handy for other spills.

  • Hospice workers can share some bed-changing tips that will make life a lot easier on the caregiver and less disruptive on the patient. An easy technique (best done with a helper) is to set the bed flat and then roll the patient onto one side, having him or her hold on to the bed rail or the hand of your assistant. Undo both the top and bottom sheet corners of the exposed half of the bed. Scrunch the soiled sheet toward the vertical center line of the bed and sort of roll it beneath the patient's body. Wipe the bed covering with a baby wipe, if wetness went all the way through the Chuck. Pat dry with a towel. Then fit the clean sheet onto both exposed corners and smooth the sheet and a new Chuck toward the center of the bed, so that half the bed is now made. Roll the patient in the opposite direction, pulling the old sheet off the bed the rest of the way and smoothing the new sheet onto that half, tucking in the other two corners. As the patient becomes more disoriented, it is good to alert him or her that you will be rolling the body, with clear instructions on how they can help you, if able. (It can startle and hurt the patient to be rolled roughly without warning.)

  • Most caregivers have found that condom catheters are ineffective (they leak, fall off, etc.).

  • A regular catheter is a possibility that can relieve the caregiver of nighttime care duties, but infection potential increases with long-term use. A nurse will need to check it frequently for cleanliness.

Tips

End-Stage Landmarks