Independence in bathing depends on:

• Ability to get in and our of shower or tub unassisted.  

• Ability to distinguish hot and cold water and regulate the faucets

• Ability to rinse off properly

• Ability to handle clothing, towels, robe, etc.

• Ability to use equipment, shampoo bottles, soap, razor, hair blower

The bathroom stands out as the biggest physical obstacle in caring for our people.   

• The problems begin in the early stages while our people still have the ability to not only express themselves verbally but a developing inability to understand why they need help.    

• As the mid-stages surface they are plagued with distortions both visual and auditory that contribute to their reluctance to even enter the bathroom and the increasing problems with motor control, balance, and rote memory make the bathroom a truly dangerous place for them to be in alone.    

• As your person enters the late stages different needs surface and the caregiver is faced with conducting hygiene care with an adult who has to be physically moved and who is unable to make even their basic needs understood.   

There are things that can be done to help alleviate some of the trauma caregivers experience when entering this very private space on behalf of a family member with this disease.     

While your person is aware of the changes you will be making in the supervision stage of care it is important to consider their feelings as well as their attachments.   I am not suggesting a full scale renovation of their entire living space.   As important as it is to anticipate problems before they happen, that can't always be done.   It is so important to become the eyes and ears for your person.    You have to become the observer of how they move within their world.   As things become obvious problems then deal with them and changes that involve redecorating, rearranging can be couched in terms of personal taste instead of the constant reinforcement of deficits.   Try to keep their feelings, their preferences, their sense of self  in mind while you do what has to be done to make everyone's life a little easier.

THE SUPERVISION STAGE:

The key to helping your family member during this stage of care is always one of simplification.   You want to simplify the bathroom environment as much as possible.   Since it is impossible to predict when the symptoms that lead into the mid-stages of this illness are going to surface it is vitally important to anticipate some of the problems before they happen.    Some changes can be made early to make this environment as user-friendly as possible for them and in many ways prolong their independence in this very private matter of hygiene.

Basics to consider:

* Shower or Tub?   Your person will lose their ability to step into it as the disease progresses.  There are transfer benches and chairs as well as hydraulic lifts for handicapped people to use in the tub, which certainly make the tub usable and relatively safe, but at a point the bathing will not be done in the tub, it will be done on a chair or bench in the tub.  It is very difficult for the caregiver to maneuver safely in the tub and trying to get an increasingly immobile, sometimes combative person in and out of it can result in injuries for both the family member and the caregiver.   

If you don't have a shower stall in your home and you have the ability to finance building one, now is the time.    I say now, because as this disease develops your person's ability to handle the distraction, noise and clutter that accompanies any major house renovation will only make their symptoms more pronounced.   As for dimensions etc.,

•  your local plumbing company has specks on building bathroom facilities for chair-bound people.   

• Your local center for disabled people is also a good source for information.    

• Any rehabilitation center in your area can supply information and/or referral to resources to help you with this project.   

This is not a do-it-yourself project.  Whoever takes on the work has to understand the limitations your person has and it will be your job to make sure they get the information.   

* Faucets:    Change the knobs for handles.   As their rote memory deteriorates, your person will lose the ability to know which way to turn the knobs to regulate the water.   Single handle faucets, round Lucite knobs which give no sense of direction and the traditional double knobs that twist to regulate hot and cold don't give a clear sense of 'on' or 'off.'  Without this your person has less and less of a chance of being able to operate faucets safely.    Add to this the fact that few homes have knobs that twist in the same directions for each and every sink and you have one big booby trap for your person to deal with.   

• This relatively simply task may have more to do with their reluctance to bathe than almost anything else.  

• They will either leave the water running or spend an inordinate amount of time yanking, pulling and turning the knobs, often working themselves into a highly frustrated state in the process.    

• They are also in danger of scalding themselves because they can't mix the hot and cold properly any more.   

• As this stage progresses, one of the problems the caregiver will face is the constant turning off of water faucets throughout the living space and the mounting frustrations that are along for this particular ride. 

• We naturally tend to push handles to shut off the water and pull to turn it on. 

• You do not need to buy handles designed specifically for handicapped people, or those you see in hospitals and medical centers.  By the time their physical abilities are as impaired as those for whom these devices were designed, the caregiver will be the one using them and they don't need them.

* Glass/plastic sliding bathtub doors and shower curtains:    By the time the mid-stage is upon you, remove the doors and store them elsewhere.    Whether they are glass or plastic they present nothing but a obstacle and a hazard to the family member and the caregiver.    I know some families are highly attached to these doors but the possibilities for serious injury for someone with the sort of hallucinations and combativeness that can erupt during the bathing process makes their removal a matter of common sense as well as safety.   

By the time your person reaches the mid and late stages of care the need for an enclosure for the tub or shower is quite unnecessary.   

Better to accustom your person to a shower curtain for privacy needs during the early stages of this disease.  By the time they are into the mid stage the curtain becomes unnecessary and once the behaviors develop, the curtain can also be a real hazard. 

* Curtain Rods:  Bolt them to the walls and make sure the bolts will hold the weight of a grown person.   Do no use tension rods and buy substantial curtain rings and a fabric, (cotton duct) curtain that won't easily rip if grabbed.   Your person, if they slip, is more likely to grab for the shower curtain, or you, than any grab bars you might install.  The colorful plastic rings break and plastic curtains tear.  You don't want the rod to fall on your or your person if yanked.  

Catalogue like those from The Company Store, Pottery Barn, Pier I,  Restoration Hardware, Crate and Barrel, to name a few all carry rods and the duct curtains, as do many hardware stores, department stores, etc.    This is a simple and relatively inexpensive way to make the bathroom environment safer.    

* Make sure no-skid strips or tub mats are in tubs and showers and surrounding area of the tub/shower.    Bath rugs should have non-skid backing.    This may seem an obvious point to make, but it is amazing how slippery this area is when wet in spite of the non-skid finishes now offered in tubs/showers and floor tile.

*Toilet:   There is little that needs to be done in this department at this time, except your person may forget to flush or they may clog the toilet with too much paper.    Have a plunger handy and know how to shut the water supply off in the bathroom.   

*Mirrors:    You might want to consider replacing the full wall mirror you now have in the bathroom with a medicine cabinet mirror at this time.  Do this in the bathroom you have designated as your family member's bathroom.    Eventually the other bathrooms will be totally off limits and can be left as they are.   If you cannot remove the mirror, then be aware that at some point you need to cover it.   They won't need a mirror at all once they move into the mid-late stages of care.    The image won't translate as anything useful to them in the first place and may only contribute to combative behavior and hallucinations and you certainly won't need a mirror to shave them or brush their teeth, or comb their hair and apply makeup.

The medicine cabinet, on the other hand, only presents an image from the shoulders up, it may appear more like a window to the family member than a mirror as the disease progresses and they won't be able to observe the ministrations of changing diapers, washing their bottoms and misinterpreted views of loads of people in the room with them.    It can be covered with a towel when your person is in the room if necessary and the family will still have a mirror to use if they are still using that bathroom.    

*Remove all unnecessary clutter:    Baskets, hanging plants, pictures, art work, glass shelves, highly patterned towels and window dressings.    Anything breakable should be taken out.   Simplify, simplify, simplify.   And don't make a drastic change all at once.   Use your common sense, remove these things piecemeal.   

*Wallpaper:   If your bathroom has highly patterned/reflective wall paper, and you are even considering redoing it, now is the time.    Or, hold off on the new paper until later and simply paint it at this point.    Choose a soft soothing color such as some of the earthy tones now available through Martha Stewart paints, and use a flat or satin finish paint.    These are less reflective than hard enamel.   The new satin finishes are quite hardy for everyday normal use.  You want to cut down on the reflective surface as much as possible.   

*Carpeting:   Use your common sense.   Rugs are easier to wash than wall-wall.  Highly patterned tile floors aren't going to be a big help either.   During this stage, there probably aren't any changes that will be needed but the floor does need to be considered as time passes with this disease, particularly in the mid stages.    

*Install a hand held shower nozzle with 8 feet of hose.    You want a light weight nozzle with an on/off switch that is easily operated with one hand and held comfortably in one hand.   The one I eventually settled on worked with a trigger that allowed me to control the water flow and when I put it down it automatically shut off so that it wasn't hopping around the room while I readjusted Tom's position or reached for more soap or shampoo.   

• Hardware stores, drug stores, department stores as well as medical supply companies carry such things.   

• You do not need a heavy multi-faceted spray device.   You want something that gives a good steady stream of water and nothing more.    

• As this disease closes on the early stage, your person will have difficulty knowing when the soap is all off.   They may even have difficulty standing under the shower itself.    

• You want to be able to reach in the shower, take the nozzle and make sure all the soap is rinsed off the body and the hair before they leave the tub/shower.   

• You will be able to do this with the shower curtain practically closed and with your person having little awareness of what you are doing if you do it in a matter of fact way and with as little fan fair as possible.    

• The length of the hose may not be crucial at this point but it will become so later on.   The good length is necessary to reach down, under and around them, the main point being able to wash off poop.   Whether they are still able to stand or they are now seated on a shower bench or chair, getting the stuff off all that pubic hair isn't easy and the only way to insure a good, clean, healthy bottom as this disease progresses is with soap and water, and a good rinse is as important as a good soap.   

My hose actually reached as far as the toilet.   This enabled me to rinse off the wash cloths, I used to clean him outside the tub, and flush the remains down the flue without a whole lot of fuss.   The spray got most of the stuff off and then the cloths went into a pail of soapy water for later washing in the laundry room.

I have noticed that medical supply sections in drug stores are now offering hoses longer than the traditional 5 feet that was only offered when I was facing these problems.   Apparently the need is catching up with the industry.   If you can't find a long hose, your local plumbing supply company can put one together for you.    All you need is a plastic hose with the fittings on either end to attach to the showerhead and the water supply.   These are standard sizes and there is no mystic as to whether this can be done or not.    

Do not let them talk you into the more expensive, metal spiral covered hoses unless you like to spend more money.   These just aren't necessary.    They are heavy, unwieldy, they can whack your person in the head and the one I bought lasted one week.   Tom bent the hose in a fit of pique and the metal sliced the plastic insert, and that was the end of that.    

*Lighting:   Florescent lights are very harsh and bright.   There are new developments in florescent lighting that combat this and you might want to look into this.    I prefer incandescent lighting with a dimmer switch.   You want to be able to control the level of light as this illness progresses.    The last thing you want to do in walk into a fully lit room at 3am to change a diaper.   No one wants to be jolted into total wakefulness in these circumstances, not the caregiver and not the family member, and being able to control the level of light will be essential .

As for your role.    Do as you would with a 12 year old going on 5. 

• You may want to put toothpaste on the brush when working the tube becomes problematic for your person.  

• You may want to hand them their tooth brush while in the shower. 

• You might want to hover near the tub to hand shampoo and soapy washcloths to your person. 

• You might want to run that bath or set the temperature in the shower before they get in and reach in to turn it off when they are finished.

• You might want to be there to do the towel and robe thing as they get in or out of the shower.

• You might want to be sure the razor is charged and ready for use and look to get the missed spots when they are finished.

• You might want to have their clothes laid out in order to aid them in dressing.

• You want to work from behind them as much as possible.   Do not confront them face on with their deficits.  You help them undo snaps and buttons and belts from behind them.   (It is much easier to be unobtrusive if you don't have a full wall mirror giving your presence and hovering away).  

You want to keep your voice low and soft.   Raising your voice will only add to an already emotionally charged situation.   Don't reason, and don't expect to invited in to do anything.   Be firm, be confident, be understanding and accepting.   After a while they will begin to rely on your help, your presence will become less intrusive and you will have already set the ground work for what is to come.  In a sense act like their valet or lady's maid.   Your role is to become a quiet presence in their lives during this phase of care.   

The Taking Over Stage

By now, the bathroom is off limits to them.  They are unable to do much  without someone being there to help them.   The key to helping your family member during this stage of care is one of organization.    The chances are most of the above recommendations have been done and the bathroom, for all intents and purposes is ready for this next phase of care.

During this phase their perceptual abilities will be bombarded by this disease.   Hearing, sight, touch, will be compromised.    They will also retain much of their sense of self, needs for privacy, a feelings of failure.    Much of the resulting combativeness and denial of problems evolves out of these unarticulated feelings.   Their inability to communicate effectively will be a constant source of problems. 

This is the time when you begin to assert your authority.    This is when you have to decide whether it is better to let them pee all over the house or start dealing with the mounting incontinence and bathing problems.    You can no longer remind them to bathe or go to the toilet.    They no longer have the capacity to follow through on any suggestion or reminder or direction.   You are past the point of hovering.   You are now in the process of taking over the controls.

*Toilet:   Get a riser seat with handles on the sides.   These are available in health care catalogues, medical supply companies, drug stores, etc.   Wal-Mart, K-Mart, and a host of other sources carry these products now.   Make sure this is affixed to the toilet.  The handles/arm rests will give your person a sense of security on the toilet while they are still able to use it efficiently and they will help you maneuver them onto the seat as well.  Your person will be losing their ability to sit straight and they are in danger of falling off the toilet if not supervised.    They will also be losing their ability to sit and stand without some assistance and their visual problems may make sitting on the toilet a real problem.   Many manifest a reversal of sight input.   They may look at the toilet, for example, and try to sit while still facing it, thus falling on the floor or in the tub if that's where it is located.    

*Floor mats and rugs:    They will become very sensitive to changes of temperature and texture on their feet.    Try to cover the floor with bath sheets or floor mats that are as close to the color of the flooring in the room adjacent to the bathroom.     For example, the white marble threshold between our brown carpeted bedroom and the light gray tile floor of the bathroom created an obstacle that Tom refused to cross.   Once I covered the threshold and the tile floor with a large terry towel bath sheet, the same color as the carpeted bedroom, the problems with moving him into the bathroom ceased.

The cold tile floor on bare feet may send messages to the brain that will literally stop them in their tracks and they will become almost rigid and filled with fear if you try to force them to move.    This often is the trigger to a combative episode.   Cover the floors if at all possible.     

*Mirrors:    I have already explained the problems mirrors bring, but in the bathroom they can be devastating to what is left of the reasoning process of someone with dementia.    Aside from anything else, the caregiver doesn't need to witness the ministrations of toileting and bathing their family member  anymore than the family member needs to watch it.     Mirrors reflect light, images, noise, and contribute to their brain's inability to utilize input.   The result can only be fear, mounting frustration, and the ground work for yet another combative episode.

*Noise:    Turn off the television, and the CD player in the other rooms.   Don't have your son mow the lawn or test his new motor at this particular moment.   Keep your voice as soft a tone as possible, don't talk too much and don't carry on conversations with others outside the room.   Be aware that the sound of pouring water is much louder than we think because our own hearing filters it out.   The hard surfaces in the bathroom magnify noise as well.    Noise is unfiltered by the Alzheimer's brain and is a constant source of confusion and frustration for them.    Keep this environment as quiet as possible.

*Tub:    It is very likely that they will be having trouble getting in and out of the tub by now.    Transfer benches are the only route to safe bathing at this point.     Get rid of the sliding doors if you haven't already and get the best weighted bench you can afford.    These come padded or not.    I recommend that you get one that had a hole in the seat, a back rest and arm rests.    

• The hole is essential so that the caregiver can reach under the family member to spray them clean.    

• This is where that 8 foot hose comes into real use.   Getting them clean is much more difficult on the solid seat.    

• The back rest is to keep them from falling back and off the seat.    

• Frankly speaking, it is better to bathe them with another helper if possible.    Once they lose their ability to stand and walk without help they are in danger of falling off the bench.   One person holds them steady, the other washes.   

• It is possible, with the use of a hand held shower head, to stand in the tub with your person and clean them without having to disrobe yourself.   The beauty of the hand held device is that you are the one who directs the spray as needed.    Work from behind them when possible.    They will be less and less aware of your presence if you are out of direct view and it is less embarrassing to them to not stand in front of them and all their nakedness and vulnerability.    

*Shower Stall:    As long as your person can walk and stand unassisted you can continue to use the shower stall without extra help.    Face them towards the back of the stall and you work behind them for the same reasons as above.   They can't see what you are doing and it is less embarrassing for both of you.    Once your person becomes unsteady on their feet it is time to get a shower chair or bench.    As with the tub, get one with a hole in the seat for easier cleaning and a back rest.    Make sure it has arm rests on the sides to keep them from falling off the chair.   You may also want to put a bath pillow on the wall where the head rests as an extra precaution.   Some shower chairs come with wheels.    It is possible to seat them in one room and then move them into the shower that way.    

*Soap, conditioner, shampoo , moisturizer dispensers:    It is easier to use smaller hand-size bottles with pop-top dispensers than the large bottles with plunger dispensers or flip tops (the flip tops tend to flip back when you tip them upside down and you end up with soap all over the place).    With one hand holding the shower nozzle, you need the other handy to dispense soap, etc.   These require more frequent filling, but, take it from one who knows, they were the easiest to utilize.     Get different colors for different contents.    Don't forget a quick wipe with moisturizer on the bottom after the final rinse.    

*Nylon netting scrubs/washcloths:     These nylon scrubs are available everywhere and they generate an amazing amount of foam with a relatively little amount of liquid soap.   They offer stimulation of the skin, are easy to rinse off, light to handle, and I preferred them to washcloths once I began using them in the shower.   They were also handy for the final clean up after a bowel movement.    

*Dental care:    Your person will lose their ability to spit and rinse after brushing.    You might want to begin brushing teeth in the shower.     Rinse their mouths with the shower nozzle on low flow but remember to hold their head forward so that the water can flow out of the mouth.    This way they can get most of the paste out of their mouths without swallowing it.    Do not drown them.   If you can find someway to rig up a Water-Pik in the shower this would be the ideal way to get their mouths clean.   There are health catalogues that have numerous dental care products for incapacitated individuals.    Teeth and gum care is vitally important for this population.   Good dental care results in better nutrition.   Better nutrition translates into healthier and more regular bowel movements.    Healthier and more regular bowel movements makes life easier for the caregiver.    One needs to be selfish about some things, sometimes.   And that's okay!

The In-Charge Stage

Your person will be chair-bound and bed-ridden by now.    They are completely incontinent and except for bathing it is unlikely that they will be able to utilize the toilet.  However, it needs to be pointed out that some are.   Any equipment you need has already been acquired and you have probably established a routine of hygiene care that works well for you.

I hope you have help.   Moving someone at this stage of care alone is a dangerous business.   They are literally dead weight and unable to assist in any part of that task.   Having been through this phase of care, there isn't much to offer in terms of adapting the environment at this stage.  However I do need to emphasize their continued needs for nurturing, love, acceptance and dignity which is, at this point, reflected in your eyes, your manner and your voice.    It is possible to continue to shower them regularly and I have already shared my views with why I feel this important.    Do it with help is the only real advice I can give.

The care is very hands-on at this time and I direct you to the section on Incontinence care titled...... Pads, Tools, and How to Use Them Effectively for information on how to deal with hygiene needs.

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