Distracting influences can impair the ability of a person with Huntington's disease to accomplish a task. For example, one may be able to eat easily in a quiet environment, but have great difficulty eating in a noisy, crowded room with both a television set and a radio playing.
Realistically evaluate what a person with Huntington's disease is capable of and what they are interested in doing. If they can no longer sort the clothes properly when doing the wash, perhaps they can still do the wash if someone else sorts the clothes (or wash everything in cold water).
As a person can do less and less for themselves, their sense of self
worth may be lessened. Work to find tasks that the person is interested
in doing and that they are capable of doing. They may not be able to paint
as well as they used to, but they may still enjoy the act of painting.
Activities of everyday life, such as bathing, food preparation and other
acts may become more difficult for them to accomplish. If these acts can
be modified, the person can still maintain the feelings of accomplishment
and independence that come with the ability to help themselves.
Example: a person spits out the food that they are given to eat. What are the possible reasons:
In this case the behavior can convey many different meanings. Solving the behavior for the meaning can eliminate the problem. Remember that someone with Huntington's disease is still a person. They may not be the same as they were several years ago, but they deserve to be treated with respect and understanding to help preserve the quality and dignity of their life.
Once a pattern of behavior is established it may become difficult to break. If you initially decline a request (e.g., to allow them to watch a television show), they respond angrily and then you give in to their original demand, you have taught them that being aggressive and belligerent allows them to accomplish their goals. Along the same line of teaching behaviors, if you constantly remind someone that they were inappropriate (e.g., "you were out of control") you may also be reinforcing the behavior. Try not to concentrate on talking about the detrimental behaviors, try to focus on the beneficial behaviors. If you think that this sounds like a lesson in child rearing, you are correct. Children learn from everything that they see and do. So do adults, irregardless of whether they have Huntington's disease or not. By focusing on the inappropriate behaviors you may actually be reinforcing them and de-emphasizing the desired behaviors.
When aggression reaches the point where you have a concern about harm to yourself, to the affected person or to others involved in the care of a person with Huntington's disease, you must get professional help as soon as possible. Behavioral modification techniques can work, but there are times when medications may be clearly needed as an adjunct to other techniques. Health care providers with expertise in Huntington's disease can be most helpful in this area.
Apathy, withdrawal from activities, social isolation, changes in appetite and weight, wide mood swings are all components of depression. About one out five adults in North America will develop at least one episode of clinical depression in their lifetime, making it the most common psychiatric disorder. Depression can be caused by either a reaction to an external event (e.g., death of someone who is close to you, finding out one is seriously ill) or endogenous (from within). Depression is frequently an initial manifestation of Huntington's disease. Depression can also occur in the middle to later stages of Huntington's disease as a person is confronted with their diminished ability to do things and by social isolation. As one of our patients said; "Why don't they come and visit me? I'm not contagious." Depression can be treated in many ways including:
Sometimes depression can be managed without medications, even caffeine has some antidepressant effects along with its stimulating effects. As one of the longest continually used stimulants, caffeine has a good track record and relatively few bad effects, such as withdrawal. For imformation on other methods of treating depresion, including medications, look at depression at Yahoo for more information on depression. If you are worried that the one you care for is contemplating suidice visit the home safety page of this site for information about making your home safe for the person with Huntington's disease.
When obsessions or compulsions get to the point that they are consuming too much of one's time or they get to the point where the compulsion of obsession is in itself worrisome, something should be done. Sometimes, calm rational discussions with the person can help them to confront the fear that has led to their obsession and allow them to cope. In the above example of disability, the caregiver as well the health care provider can help to reassure the person with Huntington's disease that there disability status is not in jeopardy.
A compulsive behavior in a patient who has trouble communicating can be difficult. Carol Moskowitz and Lori Quinn have taken care of a women with Huntington's disease with excessive thirst. They found that when they cooled her room to around 60 degrees, her thirst diminished. Her compulsive thirst was apparently a reaction to a feeling of being hot. In a colder environment the thirst abated.
Paranoia can be associated with hallucinations or even trigger hallucinations. One of our patients who was in a nursing home became paranoid that people were trying to kill him, when the nursing placed a series of terminal patients as his roommate. When he was matched with a roommate who more closely matched his age and general health the paranoia diminished. The spouse of this patient taught him to orient himself by looking at all four corners of his room upon awakening and labeling where his clothing and shoes should go. By training him to place his possessions in the same place every day, they were able to decrease his misperception that people were stealing his shoes, when in fact he had not put them away where they belonged.
Medications may be needed to help to alleviate or control some of the more severe behavioral problems. The medications should be a second line of treatment after attempts have been made to understand or modify the behavior. One excellent source for health care providers is the second editions of "A Physicians Guide to the Management of Huntington's Disease" by Adam Rosenblatt, M.D., Neal Ranen, M.D., Martha Nance, M.D., and Jane Paulsen Ph.D., printed by the Huntington's Disease Society of America.
When a member of a family is ill, these roles can rapidly shift. While a child who is ill still remains a child, their level of independence diminishes. When the parent is ill, the child will need to take on adult roles while the ill adult becomes more child like in their need to be cared for. If the illness is short lived, the roles will be reestablished rapidly. If the illness is life long, as is Huntington's disease, once a person is symptomatic, the roles may never be restored.
When the parent is ill When a parent is ill and is no longer able to care for their child (children) the child's reactions may be:
Another excellent source of support can be found from other families
with Huntington's disease.