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 you 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 re-learn 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 encouragement and love, 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 on-going information."

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

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 understand your panic 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 this sort of rushing around takes more energy 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 when the magic works.  If the pad stays dry all day, good for you and good for them.

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 over feed anyone just prior to bedtime, including yourselves, because the digestive process won’t have time to do its job. However, 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, there is no ‘magic pill,’ that will end the accompanying toileting problems, which usually involve only urinating at this stage of care.  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, Tom, the only suggestion I can make is to make their bedroom a safe room where they can pace at will and you sleep elsewhere.  I will detail how this room is set up in the section dealing with "Taking Charge."

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. 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.

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 a 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 at a particular phase, and on very rare occasions the plateau can last for a year or so, 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.

• You leave prepared to deal with it elsewhere.

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?  Even those who keep their ability to read the printed word lose the ability to make sense of what they read.

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 begin 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. They can no longer do it alone.

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 unassisted.  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, whose 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 safely without help.

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.  It is more likely that your person will grab at the shower curtain or the shower doors before they will grab on to a rail.   If nothing else, make sure your curtain rod is screwed into the wall and not just a tension rod which can easily be pulled down.  As for shower doors, particularly glass doors they are an accident waiting to happen.  Remove them.  They only impede your ability to assist your person any way.  If they still need their privacy put up a shower curtain.  The time will come when you need neither unless other family members are also using this facility.    

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.  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 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 and they increase safety. Without them your person might actually fall off the toilet because their sense of balance and depth perception becomes 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. But in this case, using the walker in this manner did give the caregiver a sense of personal 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.

Use night lights so that the person can find the bathroom in the dark.

On the surface this sounds right, 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.

There is also this to consider. Making that kind of change is no joy for the caregiver either. It is very disruptive to be wakened by a family member and subjected to the full brightness of the bathroom in the middle of the night. And take it from someone who knows, you do not need noon level lighting to change a pad or assist someone onto the toilet. Subdued lighting, through the use of a dimmer switch, as well as night lights, may be a solution. The point of the lighting change isn’t to help the family member find the bathroom, the point of the lighting change is to allow the caregiver enough light to take care of business while leaving them and the family member relaxed enough to be able to return to sleep.

There were times, when I changed Tom’s pads, cleaned up the debris, got him back in bed and barely opened my eyes during the entire process, because I was afraid that if I became too awake, I would never get back to sleep myself.   I often worked in ‘night-light’ illumination in the wee hours of the morning for that reason.  I don’t recommend this, I simply offer it as a stroll into my desperation to maintain my own equilibrium.  I have been a chronic insomniac most of my life and once wakened I am often awake for the remainder of the night, a problem that was dramatically compounded by my husband’s restlessness at night.  Lack of sleep can make you feel crazy.  It affects thought process, reflexes, the nervous system, ability to focus, your immune system.  It is the greatest enemy of caregivers.

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.

Talk about inflicting a sense of guilt, failure, and all the responsibility upon 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, and Multiple Sclerosis as well, or is it just for people with Alzheimer's Disease, people who lose their ability to reason and think?  That advice is the result of bias about this disease.

Which brings me back to my oft stated point.  People with this disease are treated differently from those with other debilitating illness.  When you can't take yourself to the bathroom or bathe without help you are Incontinent.   The only difference between Christopher Reeve and my husband is the ability to give permission to use incontinence products.  As insurmountable a barrier as this might seem, millions of us cross this barrier every day in the care of our family members.  Tom's adjustment was much easier than expected and his adjustment correlated completely to my adjustment.  it was my barrier to cross not Tom's because he didn't have a choice anymore than Mr. Reeve has a choice.  Dignity has everything to do with the attitudes of others and nothing to do with the ability to perform tasks.  how are our people to navigate their world if we don't help them?  And that help must be given unconditionally with love and regard or it simply isn't help at all.  Thank goodness the tools are available for families facing this challenge inc are.  Using incontinence products is not a sign of failure, it is a sign of common sense and love well placed.

As a final thought:

On occasion, your person may begin using the toilet after you have accustomed them to incontinence products.  Their brain sometimes clicks in and you will have some 'normal' times for a while.  Enjoy these upswings when they happen and try not to feel as if you have failed when they fade again.

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.