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Huntington's Disease: A Caregiver's Guide /
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Huntington's Disease: A Caregiver's
By Frances Maguire Paist, Staff
The caregiver must accept responsibility
for but not control conversations. Patients should be
encouraged to speak slowly. Messages should be repeated
or rephrased and simplified as necessary. The caregiver
should ask yes/no questions to gain clarity and should
try to have an understanding of what the family member
may be discussing so as to make comprehension easier. If
the speaker gets distracted, he or she should be
refocused. Presenting two choices instead of asking
open-ended questions can help. It may become difficult
not to cause frustration or anger, but the caregiver
must exercise great patience to preserve equanimity.
Addressing requests promptly helps prevent angry
Non-verbal modeling and participating in activities
helps encourage patients to participate and prevents
apathy. In spite of the fact that the lurching,
dance-like, abnormal movements of a patient with
Huntingtonís disease can be awkward, making both of you
feel uncomfortable, encouraging involvement in
activities is important and can fight depression.
Sometimes activities can be found in which your loved
one can participate that will give a caregiver
Remember that in late stage Huntingtonís disease, a
person may not be able to verbally communicate any
longer, but he or she will not have lost the ability to
understand. It is at this point that it becomes critical
for the caregiver to maintain communication.. He or she
still has much to share, and helping them do that as
well as giving them something to think about will be
When eating and swallowing become difficult, the
caregiver should understand that eating in a peaceful
environment will help. Your loved one should not be
permitted to eat when he or she is upset or anxious.
Good lighting will permit the food to be seen more
easily. Caregivers should not talk when the family
member is eating. Good posture is critical, and the
patient should be encouraged to sit up straight, chin
pointed to chest and head tilted down for easy
swallowing. Try to remain at the table for 20-30 minutes
after the meal, and keep head movements to a minimum.
Because people living with Huntingtonís disease are
moving constantly, they are often very hungry. An
increased calorie load means that eating several smaller
meals more frequently through the day may be better than
three large meals. Encourage you r love one to take
smaller bites and eat smaller pieces of food. Drinking
from a straw is helpful, as is eating blended, softened
and pureed foods. Dry, tough and stringy foods should be
avoided, and thicker liquids are easier to swallow.
Caregivers should know the Heimlich maneuver.
Keeping in mind that a person with Huntingtonís has an
altered sense of reality, the caregiver must think
through what can be reached, how he or she will think of
it, and whether or not it would be dangerous to them.
Install grab bars in bathtubs and shower stalls. Shower
benches and flexible shower heads prolong independence.
Textured strips should be put on the floor of the tub
and shower for traction. Finally, raised toilet seats
and handles give the patient something to hold onto.
In the kitchen, put chemicals out of reach. Supervision
is important such as making sure the stove isnít turned
on by accident. Put items to be used within easy reach,
and keep the counters free of clutter.
Minimize furniture so that your loved one doesnít have
to maneuver around it. Remove rugs and carpets where
possible since they are stumbling hazards.
Pre-programmed telephones make dialing easier.
A tendency towards paranoia might mean that your loved
one may try to lock you out of your home. Prevent this
by installing locks that can be opened from the outside
as well as the inside. Keyless entries are a good idea.
For those who tend to leave home, nametags sewn inside
clothing with their name and phone number are useful.
Also, door alarms will allow you to know when someone is
coming and going.