A Struggle For Control
The person with HD who enters a long-term care facility or who is in your care at home has already experienced a tremen-dous number of losses. He has already lost his ability to drive a car, to manage his
finances and to relate to his family as he did in the past.
As the disease progresses, more losses will occur. If this person saw his parent or another relative in the later stages of HD, he has an idea of what is in store for him. No wonder he may seem angry or depressed or uncommunicative much of the time!
For the person with HD to keep control of what's done to and for him requires enormous effort. To express his feelings and needs is a struggle of monumental proportions. There are many ways we exert some degree of control over our surroundings. However, HD has entangled every one of them.
Difficulty in speaking makes it hard to clearly state wishes and needs. Antici-pating the future and planning any activity is hindered by the inability
to organize information. Undertaking even the simplest movement is hampered by trouble getting started. His capacity for hope that he can maintain some control is compromised by periods of depression and even more losses.
If you remember the struggle he goes through, you will understand that
every time he freely chooses which shirt he'll wear, what time he'll get out of bed, or how he'd like his eggs cooked, it is a significant victory in his great struggle to control his world. Help him do it!
Obviously, nothing is more important in your relationship with the person for
whom you're caring than communicating with one another. This becomes more and more important as it becomes more and more difficult.
The movement disorder affects speech in several ways. In the mid-stages of HD, people lose precision in making sounds, control of the volume of the sounds they make, and coordination of the speech and breathing mechanisms. This creates speech that is varied in volume, interrupted by grunting or breathing sounds, and hard to understand.
In the most advanced stages, people express their range of needs and emotions with a few intelligible words or sounds.
Just as the movement disorder affects speech, the cognitive disorder affects the content of what is said. The ability to form ideas, organize thoughts, and present them in an orderly sequence is compromised in
HD. Some people have difficulty starting a conversation, staying on the topic, or switching from one topic to another. Some may get stuck on one topic and have difficulty getting off it.
As clear speech becomes more difficult, it takes great effort for people with HD to carry on a conversation. They will have a tendency to rely on a very small vocabulary of more easily understood words. This allows you to take on a more active role in a conversation, picking up on those key words, anticipating the idea, and expanding on it on his behalf.
At the point where it is extremely difficult to be understood, some people simply stop talking. Your familiarity with a persons likes, dislikes, career, interests, hobbies, and relatives will keep the conversation going or allow you to become his "interpreter" with others.
It can be humiliating and frustrating for the person with HD, and embarrassing
for you, when you have difficulty under-standing his words. One way to show
him respect is to put the burden of understanding firmly on you. Ask him for
clarification. Ask his permission: "Do you mind if I repeat your words to you from time to time so you will know how I'm doing?"
Communication boards are commonly introduced to people who are having
difficulty being understood. As well-intended as they may be, boards are
not often adopted by people with HD as an alternative form of communication.
Speaking, as impaired as it is, is easier than learning to use the unfamiliar board. As with other adaptive devices such as helmets and wheelchairs, introducing the communication board early, before it is actually needed, gives the user more time to learn how to use it, practice with it, grow fluent in its use, and possibly adopt it.
Have the person with HD:
a.. Slow down, especially if his speech has a "racing" quality to it.
c.. Say the main word.
d.. Spell the word.
e.. Write the word, even if he can write only a few letters.
f.. Show you.
You, the caregiver should:
a.. Try to rephrase the main idea.
b.. Use short sentences.
c.. Ask for feedback.
d.. Allow plenty of time.
e.. Wait... for up to a few minutes... for a reply.
f.. Try not to repeat or rephrase a question while you're waiting for a response.
g.. Use touch to help keep him focused on the conversation.
h.. Ask for help from others when needed.
i.. Never pretend to understand!
j.. Consider using a simple communication board.
The family can:
a.. Make a scrapbook or memory book.
b.. Tell you about facial expressions or phrases that they understand.
c.. Continue to call or write even if he cannot respond clearly.
Eating and Nutrition
Preventing Weight Loss
Providing adequate nutrition can be the single greatest clinical issue in caring for a person with HD. Maintaining body weight will be a constant challenge for both of you.
It is estimated that some people with HD,
particularly in the more advanced stages, require a diet of up to 5000 calories a day just to maintain their weight. No wonder many people with HD say they are always hungry!
In long-term care facilities, nutritionists should consider double and triple portions for people with HD. In fact, free access to food may be the order of the day. When he asks for more food, some say reflexively, "But you just ate!" It may be more appropriate to say, "Oh, you just ate, but can I get you something else?!"
Someone in the later stages of HD who is
overweight is very rare. Take his requests for more food or supplements as seriously as you would anyone else who is very, very hungry.
Constant hunger can make it difficult to wait for lunch and dinner. Perception
of time may be altered. It may be helpful to serve five or more "mini-meals" through-out the day and while the patient is awake at night. This prevents constant hunger and may help to minimize gulping.
Another strategy is to increase caloric intake by creating a diet of high-calorie foods. Imagine: A person with HD can have a weekly menu of dishes that most people prefer, but choose to avoid because they're so high in calories!
Some High-Calorie Recipes
If each mouthful of food is so difficult to chew and swallow, then maximizing
the number of calories, in each bite can only help. There are anecdotal reports
that those who reach an ideal body weight report feeling better in general, may metabolize medication more smoothly, and maintain function longer than
those who have had significant weight loss.
Unfortunately, the involuntary move-ments that may knock food to the floor, the swallowing disorder, and the great concentration needed to chew safely complicate getting those calories into the digestive tract.
People often supplement their meals with high-calorie drinks. These commercially
manufactured supplements, common in long-term care facilities for many years,
are now available in most local pharmacies.
Family and professional caregivers
have cleverly invented "super-calorie" foods to quickly boost calorie intake
at a single meal. Recipes for two such examples, a "Super Shake" and a "Super
Cereal", are provided below. High-protein, high-calorie powders that add calories
to shakes, puddings and other foods are available through commercial institutional
food distributors and local retail health food stores across North America.
Eating is one of the primary pleasures in life. Against all odds, most people with
HD struggle to eat independently, then with assistance, for as long as they
However, with difficulty controlling the movements to get the food to their
mouth, involuntary movements that interfere with eating, altered or pureed
food, drool, bibs, sudden inhalation and possibly coughing, a meal can be a messy
A committed caregiver can make a big difference by taking the time to help the
person with HD take in as much food as possible, as safely as possible.
a.. Give frequent meals and high-calorie snacks and drinks to prevent weight loss.
b.. Help the person with HD eat until full.
c.. Ensure eating is slow and deliberate.
d.. Beware hot drinks. A decreased sensation of heat can cause burns!
Super Shake (Single Serving)
Whole Milk.......... 6 ounces
Ice Cream........... 2 scoops
OvaltineT ......... 2 teaspoons
High-protein high-cal. additive*
...l 1/2 scoops
Fruit.............. add to taste
In a blender, blend milk and high-protein additive together; add OvaltineT. Blend in two scoops of ice cream (or more) and fruit to preferred thickness.
Super Cereal (Single Serving)
Evaporated Milk....................... 7 ounces
Cream of Wheat"" .............1-1/2 ounces
Brown Sugar........................1-1/4 ounces
Heat evaporated milk in a saucepan. Dissolve margarine and brown sugar in heated liquid. Add cereal until it thickens. Add cinnamon to taste.
Super Cereal (Serves 30)
Evaporated Milk........................ 1 #10 Can
Margarine.............................. 1/2 pound
Cream of WheatT ....................... 14 ounces
Brown Sugar............................ 1 pound
As above. Add Cream of WheatT slowly to reach preferred consistency.
* High-protein high-calorie additive powders are readily available in
nearly all health food and nutrition stores.