Excerpted from A Caregiver's Handbook for Advanced-Stage Huntington's Disease by Jim Pollard.
People in the more advanced stages of HD no longer think and process information as quickly as they once did. Simply put, there are fewer healthy neurons available to process information. This often causes a delay in responding to your requests, questions, or comments. In fact, you may learn that there is a consistent predictable lag of several seconds before he responds. Too often caregivers mistake the delayed response to mean "No!" No response may not mean "No!" Allow more time than usual for him to respond. When they don't respond or do it as quickly as you and I, there is often an urgency on our part to do it for them. By understanding his cognitive deficits and anticipating processing delays, you can wait for him to respond and allow him to participate in his own care. Those who don't understand the deficits and delay can actively rob him of his independence or teach him to be helpless.
There is a myth that people with HD cannot learn new information. As HD progresses, it is certainly true that learning new complex notions and concepts becomes progressively more difficult. If people tend to learn by doing, it may take them many more repetitions or opportunities to learn. If they tend to learn by trial and error, they may not learn from their mistakes the first time they make them. But believing the myth that people with HD cannot learn new information can become a cruel self-fulfilling expectation. Try to give him all the opportunities he needs in order to learn new information.
A Neurological Lack of Self-Awareness
It is disturbing to see someone with severe chorea or impaired judgement get into a car and drive off. In the more advanced stages it is just as disturbing to see him with severe chorea and profoundly impaired balance get up out of his wheelchair and try to walk, only to fall down. He tries to light a cigarette, even though he can't hold the cigarette still in his mouth or get the lighter close to the end of the cigarette. It's easy to say these people are in "denial" about their disability, using a psychological defense mechanism in which they refuse to accept their limitations.
This becomes a great source of concern and anxiety to those around them, but the behavior may actually be due to a neurological lack of self-awareness, an inability to accurately perceive themselves. Someone with readily apparent chorea will often tell you that he is unaware of it! When you "confront him" with examples of his own disordered movement or disability, you are asking him to look at something he just can't see. Interestingly, some individuals, even as they deny that they have chorea or HD, will accept treatment or remedies for their symptoms or problems. Thus it may not be necessary to "convince" the person that he has HD in order to care for him.
An experienced caregiver observed, "People with advanced HD can't wait." As absolute as that sounds, it's based on a sensitive observation of the difficulty people have when struggling to control their impulses. When they want something, they want it now. Their demands are driven by the damage to their brain caused by the disease. They may be impatient, unrealistic, angry, selfish, and imposing but, because of their impaired ability to inhibit themselves and to control their impulses when they can't do something, they just can't wait.
If someone asks for your assistance, give it to him right away or as soon as practically possible. As disruptive as it may be to you, it'll be more efficient for you in the long run. If you're unable to assist him right away, try to set a specific time when you will realistically be available to help him. For example, you might say, "I'll do that for you in fifteen minutes, at four o'clock." Be sure to keep your promise! Do not leave your timeframe open-ended by using phrases such as "as soon as I'm finished what I'm doing." This will frustrate both of you as he will inevitably reapproach you many times before you're ready to help him. Asking him to wait is asking him to do something that he may be neurologically incapable of doing. Always make the effort to anticipate what he'll need and eliminate the wait!
Swearing and Racist Remarks
The combination of lack of impulse control and anger over loss of independence in a person with Huntington's may erupt in the form of bitter racial slurs and profanity directed at his caregivers. Even though we can understand that the foul language is fuelled by Huntington's disease, it still stings to be the target of racial slurs. It takes great tolerance on our part to disregard them. Consistently polite bedside manner will eventually build bridges over this prejudice. Racial intolerance will be replaced by his trust.
Created and maintained by Renette Davis. Send comments to her by clicking here.
Created: Jan. 2, 2001
Last updated: Dec. 7, 2010