Family Dynamic Alterations
The tradition roles in the family involve the parents that provide leadership,
nurturing, care, comfort and necessities and that of the child that must rely on the parent to provide these items. As we grow and mature the child takes on the roles of the parent as they become more independent. Eventually the child becomes a parent in their own right. They then have children of their own to take care of and also their parents may also require help as the grandparents now need assistance.
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:
- care for the parent
- become more independent
- turn to others for leadership, nurturing
- act out in order to get more attention
Some of the results of the parent's illness may be:
- neglect of the children
- require the child to do household chores:
- cleaning the house
- meal preparation
- abuse, neglect
When these problems become so severe that the family has trouble adapting,
then counseling is needed. Counseling sessions can help to teach family members techniques to deal or work with the problems. Oftentimes only one
or two sessions are needed in order to get the family working smoothly again.
This document was developed as a site where patients, families, professionals can find help in
caring for people with Huntington's disease. Included are articles on specific care issues, as
well as a list of other sites related to Huntington's disease. If there are additional care issues
you would like to see addressed please let me know. There is a growing community of professionals
knowledgeable about Huntington's disease and we would like to make their expertise available to you.
I don't recall what source the following came from so if your memory is better, please email me and let me know to give the proper credit: Jean Miller
What Kind of Care Does the Individual with HD Need?
Although a psychologist or psychiatrist, a genetic counselor, and other specialists may be needed at different stages of the illness, usually the first step in diagnosis and in finding treatment is to see a neurologist. While the family doctor may be able to diagnose HD, and may continue to monitor the individual's status, it is better to consult with a neurologist about management of the varied symptoms.
Problems may arise when individuals try to express complex thoughts in words they can no longer pronounce intelligibly. It can be helpful to repeat words back to the person with HD so that he or she knows that some thoughts are understood. Sometimes people mistakenly assume that if individuals do not talk, they also do not understand. Never isolate individuals by not talking, and try to keep their environment as normal as possible. Speech therapy may improve the individual's ability to communicate.
It is extremely important for the person with HD to maintain physical fitness as much as his or her condition and the course of the disease allows. Individuals who exercise and keep active tend to do better than those who do not. A daily regimen of exercise can help the person feel better physically and mentally. Although their coordination may be poor, individuals should continue walking, with assistance if necessary.
Those who want to walk independently should be allowed to do so as long as possible, and careful attention should be given to keeping their environment free of hard, sharp objects. This will help ensure maximal independence while minimizing the risk of injury from a fall. Individuals can also wear special padding during walks to help protect against injury from falls. Some people have found that small weights around the ankles can help stability. Wearing sturdy shoes that fit well can help too, especially shoes without laces that can be slipped on or off easily.
Eating & Swallowing
Impaired coordination may make it difficult for people with HD to feed themselves and to swallow. As the disease progresses, persons with HD may even choke. In helping individuals to eat, caregivers should allow plenty of time for meals. Food can be cut into small pieces, softened, or pureed to ease swallowing and prevent choking. While some foods may require the addition of thickeners, other foods may need to be thinned.
Dairy products, in particular, tend to increase the secretion of mucus, which in turn increases the risk of choking.
Some individuals may benefit from swallowing therapy, which is especially helpful if started before serious problems arise. Suction cups for plates, special tableware designed for people with disabilities, and plastic cups with tops can help prevent spilling. The individual's physician can offer additional advice about diet and about how to handle swallowing difficulties or gastrointestinal problems that might arise, such as incontinence or constipation.
Nutrition & Calories
Caregivers should pay attention to proper nutrition so that the individual with HD takes in enough calories to maintain his or her body weight. Sometimes people with HD, who may burn as many as 5,000 calories a day without gaining weight, require five meals a day to take in the necessary number of calories. Physicians may recommend vitamins or other nutritional supplements. In a long-term care institution, staff will need to assist with meals in order to ensure that the individual's special caloric and nutritional requirements are met. Some individuals and their families choose to use a feeding tube; others choose not to.
Individuals with HD are at special risk for dehydration and therefore require large quantities of fluids, especially during hot weather. Bendable straws can make drinking easier for the person. In some cases, water may have to be thickened with commercial additives to give it the consistency of syrup or honey.