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The Ribbon - Care for Caregivers

Volume 2, Issue 9
May 14, 1999

We got two lengthy emails from one of our readers in response to our last issue. I felt that they should be printed together, so this issue is strictly what you all have sent to us. Good work you guys!

From BigtreeMur

I just received the new issue of "The Ribbon", and read the article on Incontinence. I am in the process of writing a book devoted to that one subject. I spent 6 years dealing with my husband's incontinence as a result of Alzheimer's Disease and frankly I am still amazed that the myth continues to be made that incontinence doesn't happen to everyone with this disease. all you have to do is look at the stages of Alzheimer's, particularly that developed by Dr. Barry Reisberg, one of the foremost authorities on this disease, to know that. The only way it doesn't happen is if they die before they reach that stage of the disease, and the problems begin while they are still in the first stage of the illness. The problems begin because of the inability to deal with their clothing as much as it has to do with the destruction of the brain and their thinking process.

The hang up people have with using the word diaper is just plain silly. It is only a word, it carries no more importance than we make of it. As a culture we need to begin focusing more on how to find a sense of accomplishment and purpose and love in the tasks that face us in the long-term care of a family member and less time trying to sterilize it with more socially acceptable terms. We can call 'them' (aka diapers) anything we want, but the name doesn't change the purpose they have, which is to keep an incontinent adult, dry, clean, and free of skin abrasion.

I don't mean to minimize the problems caregivers face in entering this particular phase of care but perhaps it is time to examine some of the reasons we have for holding back, not the least of which is how others view us doing these things. Lets face it, if there is reluctance to enter the caregiving role, the reluctance to clean the bottom of a parent or spouse flashes through the brain big time. Here are a few of the most used reasons for avoiding the need to step into the forbidden space. Please excuse my directness in shooting them down.


1. I can't put diapers on your mother, she would rather die first.
Mom wore sanitary napkins for most of her adult life and she didn't die, she adjusted. As for Dad, well he didn't wear sanitary napkins, but I'll bet he wore a jock strap or two during his life and he probably adjusted to that too. If he was in the service he learned a lot about loss of privacy and anyone who has gone through childbirth or surgery adjusted to the invasion of privacy. Alzheimer's people adjust too. Their adjustment, to a very great extent is helped if the person helping them has a matter-of-fact attitude about the tasks and treats their person with respect and dignity.

2. My husband is too dignified to have to wear diapers. I could never do that to him.
It is so much more dignified to let him wet himself and need your help anyway, to change his clothes 5 times a day. And is it more dignified to keep him confined to his home than to allow him to continue to enjoy eating in restaurants or visiting family or taking part in events?

3. I can't help my mother in the bathroom, it would be much too embarrassing for her.
That makes sense as long as its less embarrassing for her to defecate in the sink and for the caregiver to have the added task of cleaning it up.

4. Your father will never agree to wearing diapers.
If he can no longer toilet himself, the chances are he is past the point of being able to give you permission to use them. It is time to take charge of the situation.

5. Your father knows very well how to go to the bathroom, he's just giving me a hard time.
Dad has probably lost the ability to organize the tasks involved in bathing and toiletting. And I emphasize how confusing bathrooms can be. it's easier for them to deny needing to bathe or use the toilet than it is to deal with the confusion. If they're urinating in potted plants and waste paper baskets instead of the toilet then you are getting a very clear message from them. They can't do it alone anymore and requiring them to continue to try is really unfair to them. They are being placed in a situation that is increasingly foreign to them. If the response they get from family members is only in the form of criticism or distaste, they also feel a sense of failure and incompetence. Denial my be the only survival tool they have left.

6. Before the wall-to-wall is ruined Mom, its time to put Grandfather in a nursing home. He would never want you to do that for him.
Well, chances are Grandfather didn't want to get Alzheimer's either, but he no longer has the choice and will he feel better having a stranger do what clearly needs to be done by someone, rather than a family member? As for the wall-to-wall, if incontinence products are used correctly there is no reason for the carpeting or the furniture to be soiled. Thank goodness the diaper companies have taken the time and the trouble to provide us with the tools necessary to make this job doable.

I have other points to make but I realize the space problem. What bothers me about the books that have been written and the counseling that is given about this subject, is that no one seems able to come out and say that incontinence care is a reality of this disease. Instead, the caregiver is offered little more than a band-aide approach to the care problems, most of which might work for people who do have their reasoning abilities, but which are little more than excursions into the land of avoidance for us. By avoiding open discussion, the caregiver is left floundering alone in a quagmire of misinformation and unspoken taboos about the most important barrier to care that exists in this disease. And I say that because our people are unable to give us permission to provide the help they need and the tasks change as the illness progresses. The care needs and the way we approach our people in the early stages are very different from the care needs of the mid and late stages. Believe me, Christopher Reeve and his wife received a very open frank discussion about his hygiene needs the moment his rehabilitation began and none of us pass any judgement on that new aspect of his life. We Alzheimer's caregivers are rarely if ever afforded the same dignity. For some reason, to have impaired thinking process makes dealing with bathroom problems more abhorrent. All I can say is that soap and water works, it is after all, just poop, it isn't toxic waste. The hang ups are ours they aren't their's. There are 4,000,000 people with this disease and all of them at some point become incontinent. That is a whole lot of people having their diapers changed.

Those caregivers include:

  • wives changing husbands
  • husbands changing wives
  • daugters changing fathers
  • sons changing mothers
  • grandchildren changing grandparents
  • in-laws changing in-laws
  • professionals changing patients.

It is not only being done, it is being done with dignity, strength, support, acceptance, competence and love.

Beverly Bigtree Murphy, MS, CRC, Caregiver Author: "He Used To Be Somebody, a journey into Alzheimer's through the eyes of a caregiver." and, the soon to be released, "Incontinence" a manual for caregivers facing Alzheimer's. Everything you need to know and hoped you'd never have to ask.

#2 From BigtreeMur

On the continuing subject of incontinence: Been there. Tried it. Didn't work!

It is important to note that I am not saying, don't try to keep your family member functioning as normally as possible for as long as possible. I'm saying that everyone has to find their own moment of truth when they realize running them to the bathroom just isn't working. I looked around one day and realized I hadn't been out of the house in days. Tom and I were literally prisoners of his need to be within 5 seconds of a toilet. There was no way to trust going out in public, anywhere. I had the rug shampooer standing ready in the kitchen for immediate use. It was just plain crazy. But, until I bought that first bag of incontinence products I was engaged in a whole lot of activities I felt obligated to try. We all go through it. The time span varies between us, depending on how driven we are, but that is the only difference. During this period you will be reading books, getting information sheets from agencies like the Alzheimer's Association and Senior Services. Depending on how 'open' your are, you will be talking to doctors and support group leaders and family members, (if they figure out what is going on), and you will receive a box full of handy hints all of which will be given to you on the utmost authority.

Most of the advice will amount to a great deal of hoop jumping on your part, the message being that all that hoop jumping will somehow preserve the dignity of the family member, as if using incontinence products is a prelude to indignity. That is as ridiculous as expecting a woman to not use pads during her menstrual period because using them will make her feel demeaned and useless. You will get little information on incontinence products unless you specifically seek it out. What you need to hear is something like the following:

"It is time to get incontinence pads for your mother. No one can keep up with her increasing needs without them. She is not going to relearn how to get in and out of her clothes anymore, nor how to use the toilet or the bathroom alone. In fact she could very well injure herself because she can't handle the faucets properly and who knows what she will flush down the toilet in her confusion. She needs supervision and help the way a young child needs supervision, and she needs love, and encouragement the way a young child needs those things. Incontinence is not something she has any control over, and it is something for which there is no magic pill. There is no medication that will restore her ability to toilet herself. Are you in a support group? Get in one if you're not. You will meet other caregivers who have gone through or who are going through this situation and they are probably your best source for ongoing information."

The problem is in finding someone to say them. In an attempt to waylay some of the more unproductive advice I received, I wish to challenge the following popular myths.


1. Make frequent trips to the bathroom in anticipation of their need to use the toilet.

It is really quite impossible to anticipate your family member's needs to urinate or defecate with any significant success on a regular basis over any extended period of time once the 'accidents' become more than a very occasional happening. For one thing; the anxiety attached to the whole process becomes very distressful to the family member. They really don't know what is going on to a large degree and by the time you get them to the bathroom they've become so distracted by all the rushing around that they lose the purpose for being there. They reach the point where they cannot process all the input and more likely than not you will be faced with a catastrophic reaction if you force the issue. And of course, as soon as they leave the bathroom, having refused to cooperate, they relax and go in their pants. For another; the energy it takes is more than the caregiver should have to deal with. It is much less stressful on everyone to change a pad at a more leisurely pace without all the anxiety attached to getting them to the toilet on time. If you have a pad in place there won't be an accident and you can still toilet them normally. If the pad stays dry all day, good for you.


2. Limit liquids and solid food prior to bed time to prevent nighttime trips to the bathroom.

Dehydrating and starving will not stop the problem of frequent trips to the bathroom at night. Common sense tells you not to overfeed anyone just prior to bedtime, including yourselves, because the digestive process won't have time to do its job. But half a glass of water or a light snack if it is part of the nightly ritual is not going to make any difference in this problem. If your person is accustomed to a glass of water before bedtime, depriving them of that ritual may only insure a total night of restlessness.

If your person is up and down all night it is most likely that they've entered the Sundowning Phase that many go through. Some family members get very restless at night. Their functioning also seems to diminish as the day wears on. This restlessness can result in a great deal of activity, inability to sleep, pacing, frequent trips to the bathroom, demands for food, and a need for attention. Think about how a toddler acts when they are long past a nap. The extremes of this behavior can result in sleep deprivation for both the caregiver and the family member. This is a condition you need to talk to your doctor about. However, where your physician might be able to treat the hyper-activism, the accompanying toileting problems, which usually involve only urinating at this stage of care, are along for the ride.

Which comes first anyway, the need to urinate or the need to prowl? Which ever, once they are awake they, like most of us, feel the need to use the bathroom. If you find you are changing bed clothes, pajamas, nightgowns, even once a night then it is already time to set up the bed for incontinence, which I cover later in this book, and start the family member on overnight pads.

Note:The biggest enemy of the caregiver is sleep deprivation. You cannot function without sleep. If you have to get up in the middle of the night to attend to their needs your sleep is being interrupted. Time matters and it take less time to change a pad than it takes to change bedding, the pajamas and wipe the floor. The point is to get them back in bed as soon as possible so that you can get back in bed. And while changing pads is one option, overnight briefs will contain urine for the entire night without putting them, or bed clothes at risk. If the nightly pacing becomes chronic, as it did with my husband, the only suggestion I can make is to make their bedroom a safe room where they can pace at will and you sleep elsewhere.


3. Put the Alzheimer's person on a four, (or as one publication suggested), two hour schedule through the night once they enter the frequent need to urinate stage.

In other words, get the person out of bed every two hours through the night and take them to the bathroom whether they need to go or not so that they won't accidentally wet the bed. This suggestion isn't only stupid, it will only result in sleep deprivation of the caregiver. The last thing you want to do once your person is asleep is wake them up. It makes a whole lot more sense to put a nighttime pad on them, protect the bed linens with appropriate padding, and hope they stay asleep the entire night so that you can sleep the entire night. Besides, behavior modification is a waste of time on someone suffering from a progressive disease like Dementia. They threw out the whole concept of establishing schedules for newborns decades ago. Why this is even a suggestion for an Alzheimer's person mystifies me. Does it help to maintain routines in daily living for them? Yes, and routine is a valuable management tool. But that is not what this suggestion is about. There is a big difference between establishing consistency in meal times, activities, respite, family visits and exercise periods, and waking them up 8 times a night just to avoid an over night diaper.


4. Keep a running notation of every time the Alzheimer's person urinates or defecates in order to determine their patterns.

"Now let me see, where did I put that chart?" This must have been thought up by an anally retentive data gatherer, instead of a caregiver. Keeping a journal is often therapeutic for caregivers, and keeping periodic notes regarding general changes that occur is a tool that can help you and your treatment team recognize and then deal with the course your family member's illness is taking. And commons sense dictates that if your person is taken to the bathroom after they eat a meal the chances are they will use it.

However, as the illness progresses even patterns that were life long rituals can be affected. If anything that approximates a pattern emerges, even that can change without much warning. In fact, it is probable that by the time a pattern is noted it is already in the process of change. And how dependable will the pattern be and for how long? Alzheimer's people can stabilize for months and sometimes years, but it is also true that changes can happen within hours. I hope no one is planning the event of their lives around when an Alzheimer's family member poops because if you are, you are setting yourself up for failure. (I just felt the need to add that.) Instead, why not look to the available products to take the anxiety out of the event instead of doing more hoop jumping as a way to avoid dealing with it?

How and when we eliminate what we ingest depends a great deal on exercise, diet, mobility, medication, and how the body assimilates these things, all of which are affected by the progress of the illness. If your person usually has a bowel movement within an hour or two of eating breakfast then you don't need a chart and you already know you have a couple of choices in terms of when you can take them out of the house. You either wait until they relieve themselves, or you leave prepared to deal with it elsewhere.


5. Label the door of the bathroom, the toilet, the sink and the toilet paper with flash cards as reminders and clues for the Alzheimer's family member.

If they have forgotten what a bathroom is for, and how to find it in their own homes, why would they retain the concept of what a flash card is for?

There is more going on in their brains that interferes with their ability to 'use the bathroom' than the simplistic explanation of 'forgetting where it is.' As for the purpose of putting signs on everything, aside from adding more clutter to an already cluttered environment, the meanings of words and concepts have already begun to erode so how effective can flash cards be? A white flash card is more likely interpreted by the Alzheimer's brain as a white flat shape with dark symbols, then as something as abstract as a 'clue.' And if the word bathroom is recognized at all, it may be broken down to the words bath room, the meaning so fragmented that it no longer includes the concept of being the place where the toilet is, as in, 'the place where I can urinate in private.' The flash card idea is only an attempt to avoid the inevitable. It is time to recognize that your person needs some assistance if they are to get in and out of the bathroom at all. It means that someone has to be there to help them.


6. Place a portable commode next to the bed for the family member to use.

The reasoning being that a commode in the bedroom will save the family member the need to remember where the bathroom is. Aside from giving your person something else to trip over in the dark it is unlikely that the family member will be able to understand its purpose by themselves or figure out how to use it. Aside from anything else, they can fall off it and injure themselves if not supervised. However, if the portable commode saves the caregiver the time and exertion it takes to move a family member, who's ability to walk is impaired, or one who is disoriented at night but who will use the commode with the help of the caregiver, then by all means do whatever makes your life easier. However, they will not be able to use it without help.


7. Place railings and grab bars in the bathrooms and along the walk ways.

Grab bars, unless they are a part of the family member's long history come under the category of new learning. It is doubtful that your person will understand their purpose and for many, the position of them in tub and shower areas often present a hazard if your person accidentally falls into them. They sometimes add to the clutter instead of providing safety in the bathing situation. However, grab bars can be of some use to the caregiver who might need to steady themselves while dealing with a family member in the tub or shower stall and in this instance they may hold validity as something to think about adding to the bathroom. I advise that you set your bathing routine so that you know exactly where you position yourself in the tub or shower stall while bathing your person, before you install any grab bars. Toilet seat risers with handles on the sides are often very helpful to Alzheimer's family members who are still able to use the toilet. The handles seem to give them a sense of security. Without them they might actually fall off the toilet because their sense of balance and depth perception is impaired. However, the main purpose this device serves for Alzheimer's family members is to keep them safely on the seat. Your person probably won't be able to grasp the handles and use them to lower or raise themselves with any consistency giving you the security you need to allow them to use this device on their own.

I have the same opinion of the use of walkers and wall rails. I doubt if an Alzheimer's person can master the use of a walker for any length of time. By the time their gait is that unsteady, it is time to get a wheel chair because what follows the unsteadiness is the inability to walk at all. I once observed a caregiver painstakingly holding the hands of her family member on the walker while she shuffled backwards literally pulling the walker and her person with her. That is not using a walker effectively. However, and this also needs to be stated, using the walker in this manner did give the caregiver a sense of accomplishment, and that reward cannot be underestimated. She used this time to talk to her mother, to encourage her and be close with her. She didn't mind the extra effort it took. In a manner of speaking she created a ritual out of a task that endowed both mother and daughter with a sense of closeness, instead of failure. Wall rails are something else to fall into and another line on the wall that often serves to break up the visual field. However, if they make the caregiver feel more comfortable then consider installing them.


8. Put night lights on so that the person can find the bathroom in the dark.

On the surface this sounds like a good idea. But my experience tells me that if my husband couldn't find the bathroom in the daylight how was a night light, which gives off more shadows than light, going to make his problems easier? Again, the problem isn't about memory it is about things much more complex than that. The night light might even add to the distortions and other visual problems the family member experiences, however, the glare of full illumination may also add to the visual problems. It takes the eyes a certain amount of time to adjust to brightness when moving from a darkened environment into a brightly lit one. We all have trouble going in and out of a darkened theater, for example. It can be assumed that this reflex may be compromised in an Alzheimer's person entering into the mid and late stages of their disease. It should be taken into consideration if a family member develops Sundowning tendencies. Taking them into a highly tiled, brightly lit bathroom in the middle of the night can be such a startling experience for them that they might be up for the remainder of the night.


9. Make sure your person has a bowel movement and urinates before going to bed at night.

I can't make myself have a bowel movement at night. Since inability to follow directions is an early symptom of this disease, my guess is that it is already too late for that suggestion to work but "...wouldn't it be loverly"? You can also use an over night pad and eliminate most of the apprehension you have about ruining the sheets and the mattress.


10. If all else fails then the caregiver might have to resort to the use of 'pads' or 'diapers.'

Talk about inflicting a sense of guilt, failure, and all the responsibility on the shoulders of the caregiver. I wonder, does this person feel the same about menstrual pads, tampons and baby diapers and is the advice generic to people with Muscular Dystrophy, Spinal Injuries, Parkinson's Disease, Multiple Sclerosis as well, or is it just for people with Alzheimer's Disease, people who lose their ability to reason and think?


The real question is this: How do our people navigate a world that is so vastly different from the world in which we live if we don't help them? This is also important: On occasion, your person may start using the toilet again after you have accustomed them to incontinence pads. Their brain sometimes clicks in and you will have some 'normal' times for a while. All I can say is enjoy these upswings when they happen and try not to feel as if you have failed if or when they fade. As you may recall, toddlers can control their daytime toilet needs long before they can control the overnight needs. It is the same for our family members with Alzheimer's. If your person remains consistent to the point where they always have a bowel movement at the same time each day, or continue to give you the clues you need to toilet them in time, all I can say is: "Yes Virginia, there is a sanity clause." Thank your lucky stars and don't question it. Once they start wetting the bed at night it is time for overnight diapers.

Beverly Bigtree Murphy, MS., CRC. Caregiver excerpt from: "Incontinence, A manual for caregivers facing Dementia. Everything you need to know and hoped you'd never have to ask!"

Medical News

From LIZA 513

DG Dispatch - AAN: Metifronate Improves Psychiatric
Profile Of Patients With Alzheimer's Disease

DG DISPATCH - AAN: Metifronate Improves Psychiatric Profile Of Patients With Alzheimer's Disease
By Cameron Johnston
Special to DG news

TORONTO, ON -- April 26, 1999 -- Patients with Alzheimer's disease who take metifronate appear to have fewer psychiatric symptoms than Alzheimer's patients who do not receive the drug, researchers from University of California Los Angeles (UCLA) Alzheimer's Disease Center reported this week at the American Academy of Neurology meeting in Toronto.

Studies involving other drugs to treat the disease have shown that the patient does not suffer as much cognitive impairment, but this is the first study that has shown changes in the patient's eating habits and moods while they are taking the experimental drug.

In the study, 830 non-institutionalized patients with mild to moderate to moderate Alzheimer's disease received either 50 mg or 60-80 mg daily over a period of 26 weeks. Using an Alzheimer's Disease Assessment Scale (ADAS-noncog) the patients experienced statistically significant improvements in their degree of distractibility, hallucinations, motor function and appetite.

The only domain in which the patients did not show an improvement was in their tendency to break down crying from time to time, said Donna Masterman, a UCLA researcher.

The fact that they seemed to experience an improvement in appetite is also important she said, because loss of appetite and poor eating habits are often warning signs that a person is losing the ability to care for himself or herself. Poor eating habits may also leave the patients susceptible to other illnesses.

The appetite scores in this study suggest that these patients could possibly go on living on their own, outside nursing homes or hospitals, without the need for an outside person to prepare their meals.

That's all the space we have this time. There are more e-mails on the subject of incontinence. If you have anything you'd like to include, please e-mail them to

Hugs and Peace,

Karen (KMenges581)
Jamie (DrMOM1955)

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