The Ribbon - Care for Caregivers
Volume 2, Issue 8
April 30, 1999

Of all the things we deal with, it seems incontinence gets to us most. Because these have always been private matters, it's hard to accept in our loved ones. I hope this information will help you understand and give you a few tips to deal with it better.

(Wetting or Soiling)

People with dementing illnesses may begin to wet themselves or have their bowel movements in their clothing. This is called, respectively, urinary incontinence and bowel or fecal incontinence. The two are really separate problems, and one often occurs without the other. There are many causes of incontinence, so it is important to begin by assessing the problem.
Urinating and moving one's bowels are natural human functions. However, ever since childhood we have been taught that these are private activities. Many of us have also been taught that they are nasty, dirty, or socially unacceptable. In addition, we associate caring for our own bodily functions in private with independence and personal dignity. When another person has to help us, it is distressing for both the helper and the disabled person. Often, too, people find urine or bowel movements disgusting and may gag or vomit when cleaning up. It is important for both family members and professional caregivers to be aware of their own strong feelings in these areas.


Urinary Incontinence

Urinary incontinence has many causes, some of which respond well to treatment. Ask yourself the following questions.

  • If the person is a woman, is she "leaking" rather than completely emptying her bladder, especially when she laughs, coughs, lifts something, or makes some other sudden exertion?
  • Do accidents happen only at certain times of day, such as at night? (It is helpful to keep a diary for several days of the times accidents occur, the times the person successfully uses the toilet, and the times the person eats or drinks.)
  • How often does the person urinate?
  • Is the urination painful?
  • Did the incontinence begin suddenly?
  • Has the person's confusion suddenly gotten worse?
  • Does the incontinence occur occasionally or intermittently?
  • Is the person living in a new place?
  • Is the person urinating in improper places, such as in closets or in flower pots? (This is different from the person who wets himself and his clothing wherever he happens to be.)
  • Do accidents happen when the person cannot get to the bathroom on time?
  • Are they happening on the way to the bathroom?

Whenever incontinence begins, it is important to check with the doctor. You can help him diagnose the problems by having the answers to these questions. If the person has a fever, report this to the doctor at once. Do not let a physician dismiss incontinence without carefully exploring all treatable causes.

Incontinence may be brought on by either chronic or acute bladder infections, uncontrolled diabetes, a fecal impaction, and enlarged prostate, dehydration, medications, or many other medical problems. "Leaking" can be caused by weakening muscles and other conditions that are potentially treatable.

"Common sense" might suggest that giving less fluid would reduce incontinence, but this can be dangerous, because it can lead to dehydration. A first step in addressing incontinence is to be sure that the person is getting enough fluid to adequately stimulate the bladder to work. Both too little and too much fluid can be bad. If you are uncertain how much fluid the person should get, ask you doctor or nurse. A doctor or nurse can also determine if the person is dehydrated.

If the problem is that the person moves slowly or uses a walker or is clumsy and cannot get to the bathroom in time, you can bring the toilet closer to the person. For example, if a person must go upstairs to the toilet, renting a commode for the ground floor may solve the problem. You can improvise a portable urinal that will help when you travel. You can also simplify clothing to the awkward person can manipulate it faster. Try Velcro tape instead of zippers or buttons. Can the person easily get up out of his chair? If he is sunk in a deep chair, he may not be able to get up in time.

Sometimes people cannot find the bathroom. This often happens in a new setting. A clear sign or a brightly painted door may help. People who urinate in waste baskets, closets and flower pots may be unable to locate the bathroom or unable to remember the appropriate place. Some families find that putting a lid on the waste basket, locking closet doors, and taking the person to the bathroom on a regular schedule help. Remember that older people may have been taught as children to urinate outdoors or in a can by the bed. If so, it may be easier to supply them with a can than to clean up the waste basket.

Purchase washable chair cushion covers. Slide them on over a large garbage bag to waterproof cushions. If you have a favorite chair or rug that you are afraid will be damaged, take the easy way out and put it where the person will not use it.

Sometimes people need help and are either unable to ask for it or embarrassed to ask for it. People may have always used children's words such as pee, tinkle, or take a leak, or even obscure euphemisms such as go for a walk. The person with language problems may say "I want tea" or "take a peek." If the caregiver (particularly someone unfamiliar with the patient) does not understand what the person is asking for, accidents can result. Learn what the person means and be sure that sitters or other caregivers know also.

If the person is incontinent at night, limit the amount of fluid he drinks after supper unless there is some medical reason why he needs extra fluid. (The rest of the day, be sure he is getting plenty of fluids.) Get him up once at night. It may be helpful to get a bedside commode he can use easily, especially if he has trouble moving around. Night lights in the bathroom and bedroom greatly help, too.

Falls often occur on the way to the bathroom at night. Make sure there are adequate lights and no throw rugs, that the person can get out of bed, and that he has slippers that are not slick-soled or floppy.

A diary will provide you with the information you need to prevent many accidents. If you know when the person usually urinates (immediately upon awakening, about 10 A.M., an hour after he has his juice), you can take him to the toilet just before an accident would occur. This is, in fact, training yourself to the confused person's natural schedule. Many families find that they can tell when the patient needs to go to the bathroom. He may get restless or pick at his clothes. If the person does not give you clues, routinely take him to the toilet every two to three hours. A regular schedule will avoid most accidents, reduce skin irritations, and make life easier for both of you. While it may be embarrassing to ask the person to go to the bathroom, this routine will save the person the humiliation of wetting himself.

Certain nonverbal signals that tell us it is time or not time to urinate may influence some impaired people. Taking down one's underpants or opening one's fly, or sitting down on a toilet seat is a clue to "go." Dry clothes and being in bed or in public are signals to "not go." (Some people are unable to urinate when there are "no go" clues, such as in the presence of another person or into a bedpan.) Taking down panties when undressing a woman may cause her to urinate. You may be able to use such nonverbal clues to help a person go at the right time.

One man urinated every morning as soon as he put his feet on the floor. If this is what is happening, you may be able to be prepared and catch the urine in a urinal. There are urinals for women as well as men, but they may be hard to find. Use a plastic bowl for a standing woman. People may also be inhibited and unable to go when you are in the bathroom with them or if you ask them to use a commode in a room that is not a bathroom. It is often this involuntary "no go" response that leads families to say, "He wouldn't go when I took him and then he wet his pants. I think he is only being difficult."

Sometimes if a person has trouble urinating, it may help to give him a glass of water with a straw and ask him to blow bubbles. This seems to help the urine start.

Sometimes a person asks to go to the bathroom every few minutes. If this is a problem, it is helpful to have a urologist see the person to determine whether there is a medical reason why the person feels he needs to urinate frequently. A urinary tract infection or certain medications can give a person this feeling or can prevent his completely emptying his bladder. (If his bladder is not completely empty, he will soon feel the need to urinate again.) If you have ruled out medical reasons and are sure the person is emptying his bladder when he urinates, take him to the toilet every two to three hours and try to distract him in the interim period.

Some doctors and nurses may still dismiss incontinence as inevitable. It is true that some people with dementia will eventually lose independent control of their functions, but many do not, and many causes of incontinence can be controlled. Even when the person has lost independent function, there is much you can do to make your work load easier and to reduce embarrassment for him. If you are having problems, ask for a referral to a nurse or physician with experience managing incontinence in dementia patients.

Bowel Incontinence

Bowel incontinence, like urinary incontinence, should be discussed with a doctor. Abrupt onset or temporary incontinence may be the result of infection, diarrhea, constipation, or fecal impaction.

Be sure that the bathroom is comfortable and that the person can sit without discomfort or instability long enough to move his bowels. His feet should rest on the floor and he should have something to hold on to. A bar, made from a broom handle and crossing in front of the person between two professionally installed supports, will give him something to hold and will encourage a restless person to stay put. Try giving him something to do or letting him listen to music.

Learn when the person usually moves his bowels and take him to the toilet at that time.Avoid reprimanding the person who has accidents. Consult your physician if the person may be constipated or have an impaction.

Cleaning Up

A person who remains in soiled or wet clothing can quickly develop skin irritations and sores. It is important to watch for these. Keeping the skin clean and dry is really the best protection against skin problems. The skin must be washed after each accident. Powder will keep the skin dry. Using a catheter as a continuing way to manage urinary incontinence should be avoided if possible.

The personal care of an incontinent person can seem degrading for him and unpleasant or disgusting to you. Therefore, some families have made a deliberate effort to use the clean-up time as a time to express affection. This can help to make a necessary task less unpleasant.

There is wearing apparel available for incontinent people. Should you use them? Professionals disagree over the use of incontinence wear. Some think that "diapers" are demoralizing and encourage infantile behavior. some find that scheduled toileting is easier than managing incontinence wear. The answer lies in your own feelings about this and in the confused person's response. Incontinence clothing may make things easier for you and more comfortable for the confused person. However, nursing homes should not routinely use diapers as a cost savings without weighing the impact of this on the individual. We believe a toileting schedule is ideal when it works, but we recognize that some people resist it and others are incontinent even when a scheduled is tried. The doctor or nurse will help you decide what is right for you.

Disposable adult diapers and plastic outer pants are sold in drug stores and can be ordered through catalog stores. Some are more comfortable and stay on better if regular underpants are worn over them. Because of the negative feeling about the word diaper, these products are advertised as "adult briefs". Some are made so that one size fits all; for others, size is by hip or waist measurement. The type of filler used determines how much urine the brief will absorb. Products with a "gelling property", or super absorbent polymers, usually hold much more than fiber-filled materials.

There are both disposable and washable garments. Some washable garments are not lined with soft materials, so the protective layer comes in contact with the skin and is uncomfortable. Many families find disposable liners are better because they hold larger volumes of urine. Liners with "gel" hold more urine with less bulk than fiber-filled materials.

Several products consist of an outer, washable pant that holds a disposable pad. The ideal is a soft, cool material in which the absorbent pad tends to draw urine away from the crotch so that the person's skin feels dry. It is helpful if the garment is designed so that the pad can be changed without lowering the garment and so that the garment can be lowered for toileting.

The leg of the pant should fit snugly, to prevent leakage, but should not bind. Adult briefs may leak around the legs of a thin person. Families have found that using a toddler-size diaper plus the absorbent sections of an adult brief helps. Using a safety pin to attach the brief to the undershirt of a bedfast person will help contain a bowel movement. Some briefs have greater absorbency in the front, while others are more absorbent toward the back. Experiment to find the one that works best for you.
Garments that don't fit or that are too saturated may leak. Don't expect the garment to hold more than one urination. Pads may say how much fluid they will hold. A full bladder may empty eight to ten ounces (one cup) of urine.

In large cities, there are adult diaper services that save you the burden of washing these garments.

Disposable pads are made to protect bedding, and you can also buy rubberized flannel baby sheets. These are much less unpleasant than the older rubber sheets you may remember from your childhood.
Use a draw sheet on the bed. This is a regular sheet folded in half lengthwise and tucked in across the bed. It holds a plastic pad in place between it and the bottome sheet. Should the patient have an accident, you have only the draw sheet and the pad to change. Absorbent bed pads used in combination with a draw sheet and rubber pad will help keep the bed dry. Look for pads with a polymer (gelling) effect and an embossed back to keep them from slipping. Follow the manufacturer's washing and drying instructions.

It is not a good idea to use plastic pants, plastic bags, or rubber sheets that are not shielded by a layer of cloth next to the skin. They cause moisture to stay in contact with the skin and lead to irritation and rawness.

Mace, Nancy and Peter Rabins. The 36-Hour Day. Baltimore: The Johns Hopkins University Press, 1981

Please note corrections:

Chat Schedule Update

From BHostSTS

Service Subject Date Time (EST) Location
AOLAlzheimer's Support GroupTuesday8 PMPositive Reflections
(Keyword: BH)
AOLCaring for Elderly Loved OnesTuesday9 PMPersonal Empowerment
(Keyword: BH)
AARPCaregiving SupportWednesday8:30 PMAARP Events Room
AOLEmpowering CaregiversThursday8 PMMutual Support Room
(Keyword: BH)
AOLAlzheimer's Support GroupFriday9 PMHealth Conference
(Keyword: BH)

Click here for a printable version of this schedule

In Passing: Those We Must Remember

From Piano kf, forwarded by STSWILLIE

Mom passed away during the night. I still can't believe it. It turned out that she had been suffering with bone cancer all along. The doctor said she had it for about 6 months. She really suffered and I am glad she is Free now. It still hurts--the viewing will be tom and funeral on Thursday---thanks for all your kind words to me, love, karen

From Psears 123

To my freinds,
Dad passed on this evening, finally. I will write tomorrow.

Love, Paula

E-Mail Box

From MeeMawMoe

I realize there are different opinions on whether to tell your loved one that he or she has Alzheimer's. Of course as most, he knew something was wrong. I had already made of my mind to tell him if he did. I had seen the confusion in my brother-in-law because he wasn't told. Jerry was diagnosed at NIH in Bethesda, and they gave me no choice anyway. We had a conference, several doctors, my daughter and myself, and they told us the results of all his testing. Of course, Jerry took it better than Sheryl and I.
Anyway what I really wanted to tell you about is how I handled it later when we came home to face it all. This is what worked for me. We discussed the facts and what we would do, of course at that time we were broken and confused. It was very difficult. And after we worked through a variety of feelings, I realized he needed reassurance from me. I gave him reassurance, how much I loved him, that I was going to be there for him, and would be there to take care of him. It was like a miracle. He knows he can depend on me and I will be here when he needs me. I still do that often and like you have said, even if they don't understand our words, they understand our touch and our hugs.
I worried about the suicide thing at first. He had once said that he would kill himself if he ever had Alz. At first, I even went as far as to hide anything that I thought he could endanger himself with. But when he understood and felt the love I have for him and knew I woud be there for him, he never indicated that he would commit suicide. Feeling insecure is very difficult for them to deal with. In my situation, honesty was the best way to do it.
I again want to thank you for The Ribbon and all of you in the chat. I need all of you. You are my security and reassurance. love ya, Sharon

From Sgh34

When I read some of the e-mail in your newsletter about the frustration of not getting through to the Alzheimer's patient I thought of this piece I wrote. It is a mental conversation between a caregiver and a care-receiver. It is a battle that we all constantly wage with ourselves and our conscience.

The Conversation

Why me?? Why do I have to sacrifice my life, put my life on hold to take care of my father? I have a life to live, things to do, places to go. I feel like a prisoner in my own house. Where are my brothers? They have a life. They come and go as they please, no restrictions. How come I get stuck with this task?

Lord, I am so thankful for my daughter. You have blessed me with someone to take care of me in my old age. I know it is not easy because I am old and sometimes I can't remember things the way they should be and I can't do things for myself like I should.

This is so hard for me. He is in my space all the time. He never lets me alone. No matter where I go, he is there watching every move I make. I can't even go to the bathroom without him knocking on the door or looking to see what I am doing. Questions, questions, the same questions everyday. Let me alone! Let me do my thing.

Lord, it is wonderful to have someone here with me all the time. I would get so lonely if she was not around. I get scared to be alone. I can't remember what to do anymore. What if something happened and I was alone, and there was no one here to help me. I don't want to be alone. I know sometimes I upset her because I am always in her way when she is trying to do things, but I love to watch her and be with her. She knows how to do everything. I know I ask the same questions everyday, but I can't seem to remember anymore. Sometimes I don't know where I am or where my family is or where I am going to sleep tonight. She knows. She always knows. I feel secure when she is here. It is comforting to know she is always here. What would I do without her?

It is so embarrassing when I take him out. He is so slow at everything he does and he makes a mess when he eats, like a little child. He can't hear what I am saying and he can't see very well either. I have to read the menu for him and order his food because he doesn't remember what he can and can't eat.

Lord, I love it when she takes me out of the house. Even if it's just to ride in the car while she runs errands. I love to look at the scenery. I don't always remember where we are or where we have been or the familiar streets and sights I used to remember. But I enjoy getting out of the house and away from the four walls. I especially like to go out to eat and see all the people. I know I can't always hear what is being said and I get messy sometimes, but my body parts don't work as well as they used to and I spill things. She is so good to me, orders my food and cleans up after me.

Sometimes I wish it were all over. I know that is terrible to wish someone would die, but I am tired and I want to get on with MY life.

Lord, I look forward to meeting You so I can tell You all about my daughter and how good she has been to me. Take me home soon so she can live her life again.

Here he comes again. He wants a hug again. He is crying.

I love you. God bless you for what you are doing. I know it is not easy to take care of an old man like me. I love you.

Oh, God, forgive me for my selfishness. Help me! Help me to comfort him and make his last days as easy as I possible can. My time will come, I know. I'm sorry Lord. He has given me life and taken care of me for so long, help me now to take care of him for what little time he has left, for he has touched me, I have grown.


From Drnkbudlit

Thanks for another great ribbon and useful information. Every day seems to be a new learning experience with this awful disease. I feel so all alone at times and then reading this I realize I am not. Keep up the great work. You are touching so MANY people's lives....

From Bean2591

Thanks again for another great issue of The Ribbon. I would like to share my thoughts on to tell or not to dad was diagnosed at the age of 54 after having felt something was wrong for nearly 5 years. When he finally got a diagnosis of probable Alzheimer's disease he said, "Thank goodness I'm not just stupid or going crazy. There is a disease causing my problem." I am from a family, like many, who believe in researching diseases and illnesses. All we had to do was explain that AD is a disease of the brain, just like heart disease or kidney disease. We faced it head on and did the best we could. Twenty three years later dad passed away! It has been a long and painful journey. And one of the best life experiences I have ever had. Without question, my life has been enhanced by all the beautiful people who have been a part of our last two decades. We have found that education and support made all the difference. Our community now has a program for the person with a new diagnosis and their primary caregiver to go through an 8 week educational program to learn about the disease, the road ahead, and coping techniques. If your community has one, go for it! I've just returned from a caregiver retreat that was healing, rejuvenating, and relaxing. If anyone is interested in details let me know.
Sending each of you my heartfelt respect, love and support as you continue your journey.
Shellie aka

From JDunn56760

Thanks for being here for us all. My heart goes out to all of you. It has been 4 weeks
since hubby was placed in a facility and my grieving and guilt still keep me down
in a deep pit. I know it will lessen in time.

From BRAX228

Thank you once again for another thought provoking issue and commentary. In our case, there was never a question of whether to tell or not tell. My husband was only 51 years old and his job performance was being affected by the first signs of his disease. He was told he had to go to the doctor and was very aware that something was wrong, and was personally involved in all tests and diagnostics, leading to the diagnosis of Pick's disease. The other important thing that I need to stress is that because he was informed from the very beginning, we were able to do early financial planning, get legal things in place - POA and living will, retire on disability and we were able to "smell the roses" while he could, and he even helped make life style changes - moving to a smaller, easier to maintain home. And as stated in your article, he now does not remember anything, and would never be able to legally sign any documents. Had we not done the POA when we did, I would have had to prove his incompetency. This disease is painful enough without having to add more stress to the caregiver, and I truly believe that my stress was lessened by having my spouse be fully informed.

From NancCall

Many Many Thanks!! The newsletter was so informative and helpful. My mother has Dementia with Hallucinations. Can't seem to find the right medication right now. She is in a day care group now and is with us part time and in her home part time. We are hoping she can improve but are trying to prepare if she doesn't.

My Father passed away ayear ago Feb. and it seems besides not being able to accept his death she is having other problems too.

I will look forward to receiving your newsletter in the future. You are providing a great service in doing this and I thank you again.


From BHaley0777

My thanks for the positive responses to my article, Focusing On The Light that ran in the April 2nd issue of The Ribbon. What was not mentioned in the article is that my mother is also suffering from a severe short-term memory deficit and early stage dementia and other complicating health problems. She's been living alone in a single family home and for the past few years it's been very difficult to keep her safe. In the past year alone, she's had numerous falls and broken bones. I have two wonderful brothers, but most of the burden of caregiving has fallen to me as the only daughter. In the short time since the article appeared, she's had two fainting spells, a TIA, and a mild stroke. She was hospitalized, spent a week in a nursing home and another week in a psych facility to determine her competence and is now having a trial run in an assistant living facility's respite apartment. She's obsessed with being in her own home and so depressed and angry with her children about her not being there, that she's on a hunger strike. Believe me, I may sound like a Pollyanna at times, but we all go through periods when it's difficult to focus on the light. My brothers and I rely on each other and those who care about us to try to keep a healthy perspective. Today at work I received a notice about a meeting from a person who knows nothing about my mother's situation. Hand written on the corner of the page were the words, "Quality of life is a state of mind." It blew me away. Clearly, I can provide my mother with the opportunity for a full life in a safe environment, but I can't control her outlook on life. Only she can do that. If you rely on prayer as a source of support, remember that prayer doesn't just involve talking. It also involves listening and the answers often come when you least expect them. B. Haley

From JoanneR786

I lost all my favorite spots when I lost AOL for awhile. I had a place listed where you could check out prescription drugs given to me a long time ago in the support group. I am trying to find out info re Resperdol and Alz patients. Can you give me that site again.

Ta ta for now. See you in 2 weeks!

Hugs and Peace,

Karen (KMenges581)
Jamie (DrMOM1955)

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