Personal Care

Advanced Stages of Huntington's Disease
Caregivers Handbook

Personal Care

Bathing, Dental Care, Dressing, Toileting

Personal Care

If you can't lay out your toothbrush, toothpaste, a glass for rinsing, and a towel to dry your mouth, then brushing your teeth can be a very intimidating activity.

We often overlook the fact that before we begin to brush our teeth, we make sure we have everything we need and that we plan to follow a very set sequence of steps. Because these abilities to plan and organize such daily activities are often "automatic", we often take them for granted.

These are the very skills that present problems as HD progresses. The cognitive disorder of HD presents more problems with these activities of daily living than the motor disorder does.

People who face these difficulties in bathing, dressing and grooming react very differently. Having lost interest in themselves, some "give up" and easily let those caring for them "do everything".

Others plow ahead undaunted by the many challenges of caring for themselves, unfazed by an occasionally misbuttoned blouse or a t-shirt put on over a sweater. Either way, needing someone else's assistance is yet another significant loss to which the individual with HD must adjust.

Bathing

Many people with HD are reluctant to bathe in a tub or shower. There are many hard surfaces, protruding fixtures and close quarters to be considered. It may have been the site of previous falls.

Standing naked before an unfamiliar caregiver can be humiliating. Perhaps the feeling of water is no longer pleasing and being splashed is very unpleasant.

Maintaining both your modesty and balance while trying to help your helper to help you is certainly a tiring job!

Even though it is difficult, it is important for people with HD to bathe often.Many perspire profusely. Increased hunger and thirst require that they eat more food and drink more liquids, which leads to more frequent urination. Involuntary movements, dystonia, and problems with balance cause spills that soil both clothes and the people who wear them.

Changes in the tone and weakness of the facial muscles, as well as less effective and less frequent automatic swallowing, can cause some people to drool excessively. This frequent need for bathing means arranging times for bathing in the daily routine.

Try to keep the shower or bath as brief as possible by gathering everything necessary before beginning.

Using a shower chair allows people with HD to focus all their energy and attention on bathing and not on balancing in the shower.

Hand-held shower heads allow you to aim the water stream exactly where it's needed, minimizing the movement required and cutting down on the splash when it's held close to the body.

People who have difficulty holding onto soap, facecloths, and sponges may still be able to lather up with bath mitts that require no grasping and that fit right over the hand.

Toileting

Extra attention needs to be given to the bathrooms used by people with chorea, dystonia, and problems with balance.

"Flopping down" onto toilet fixtures loosens the hardware that holds the seat to the bowl, as well as the wax seal and fittings that hold it firmly to the floor. Men who stand to urinate may have difficulty keeping their urine stream aimed in the bowl.

Loose seals and urine on the floor = falls. The widely available padded toilet seats may be helpful since they cushion the impact of "flopping down" onto the seat, and the padded cover may protect his back and the toilet tank as well.

Dressing

Clothes should be changed and washed often, too. It's helpful if they're easy to get off and on and are durable enough to withstand many, many washings. They need to be loose enough to accommodate movements that are extra-ordinary in their range and frequency.

Warm-up suits are often a good clothing choice for those who have difficulty with buttons or zippers. Patterned shirts and blouses camouflage spills and stains; single-colour tops accentuate them. Fashionable patterned scarves may catch drool as effectively as institutional bibs.

Many people with HD feel hot and prefer to have the thermostat turned down or fans blowing in their rooms. They may even feel comfortable wearing light cotton clothes in the wintertime.

Be sure to allow him to complete as much of his dressing routine as he can without assistance. Giving more assistance than is actually needed is a widely accepted, usually unnoticed, unintentional but harmful act against a person. It robs him, little by little, day by day, of what little independence he has remaining. It leaves him increasingly dependent and docile.

Over time, you may teach him to be helpless. "Learned helplessness" is the inevitable consequence of caregivers unwilling to make or take the time to allow people to do what they can do for themselves.

Sometimes one particular caregiver or family member can get the resident to do things that no one else can; respecting this preference by allowing that caregiver to work with the resident as often as possible can be a comfort to the resident, family, and staff.

Dental Care

Having someone else put a toothbrush or anything else in your mouth is an uncomfortable experience. When you can't hold your head still and have difficulty speaking fluently, it's frightening-even more so when that person is someone unfamiliar to you. His anxiety can intensify his chorea and make it more difficult to help him.

Toothbrushing will be a comfortable activity if the person needing help and their helper take a few moments to relax together and to position themselves in such a way that the helper can gently stabilize the head.

The importance of oral and dental care increases as the disease progresses into its more advanced stages. He may breathe in his own saliva.

Effectively cleaning the mouth minimizes the bacteria that can be aspirated and reduces the risk of infection. Sometimes dipping the toothbrush in mouthwash rather than toothpaste is preferred since it can be difficult to spit out toothpaste.

Cleaning the teeth and mouth should be done after main meals and, most importantly, at bedtime.

HD presents a series of unique problems related to dental care. Due to involuntary movement and changes of muscle tone in the mouth, "bruxism" or teeth grinding is not uncommon.

Sometimes people regurgitate food. Over time stomach acid can damage tooth enamel, weakening the teeth and leaving them susceptible to breakage or decay.

Assessing pain in the mouth or teeth can be difficult when the person with HD can't communicate clearly.

IN SUMMARY...

HD damages the brain so profoundly that it changes movement, emotions, and thought. These changes affect the person with HD in ways that are difficult to understand. He may resist taking a shower, changing his clothes, and brushing his teeth. He may see your prompting as nagging, your direction as patronizing, and your insistence as antagonism.

A decreased interest in self-care is typical in HD. Establish a self-care routine. Understand the problems. Set clear expectations. Give no more assistance than needed to start or finish an activity. His disinterest is driven by the disease, not a lack of concern about his appearance or hygiene. He really needs your help and support in this area!