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Huntington's Disease Caregiving

Post Emergency Info
What Is A Caregiver?
What Is An HD Caregiver?
Caregiving For A Spouse
Caregivers Bill of Rights
Helping Your Loved One
Your pHD Is Unique!
About Huntington's Disease
HD Articles of Interest
HD Guidebooks
Post Emergency Info
Early/ Early Intermediate Stages
Late Intermediate Stage
Swallowing Diagnostic
Speech & Language in HD
Swallowing Safety in HD
Early Advanced Stage
Swallowing Difficulties~Physician's Guide
Warning Signs of Swallowing Problems
Swallowing, Coughing, Choking & Pneumonia
Swallowing~Giving Medication
A Practical Guide: Nutrition and HD & Resources
Diet & Nutrition in HD
Nutrition and Huntington's Disease
Nutrition Information for the Care Giver
Texture & Consistency/Thining & Thickening Foods
Drinks/Shakes Recipes
Adaptive Equipment-Mealtime Help
Food Thickners
What Is A Feeding Tube?
When To Consider A Feeding Tube
Feeding Tube Decision in HD
Feeding Tube Resources
Advanced Stage
Late Stage Care
Commom Problems Encountered~Hospice Care
Temporary List of Resources
Personality Issues
Legal Issues
Disability Issues
At Home Care
Outside Care
Caregiver Tips
Caregiver Support
HD Facts
Helpful Forms-Download
Personal Articles/Stories
Miller Messages
HD Links
Fix It-R-Us?
How-To Tips
Have An HD Question?
Beautiful Memories
Caregiver's Chat Room
HD Caregiver Newsletter
Daily Humor & Health News
Dreams & Signs (Fun Stuff)
Share A Link
Send An HD Greeting Card
Location Map
Blank page
Source: Department of Pain Medicine
and Palliative Care Beth Israel Medical Center, NY
Although people with Huntington's Disease may rarely need "Emergency"
care, except during the stage where they may be falling frequently, it is
always best to be prepared.
The "Patients Bill of Rights" referenced in this article had a bad link.  I found
Post emergency information
To start, fill out the In Case of Emergency Form  to organize and
consolidate important emergency information. Make sure that you
list contact numbers, including the patient's doctors and other
members of the health care team. This information should be photo-
copied and put in places that are easily accessible, such as next
to the telephone and on the refrigerator.
Know when to call for an ambulance

There are certain instances in which recognizing an emergency and
calling 911 can save a person's life. However, since ambulance service
can be extremely expensive when not covered by insurance, it is important to know exactly when it is necessary. Always call for an ambulance if a person...

is unconscious
has chest pain or pressure
has trouble breathing or is not breathing
has no pulse
is bleeding severely
is vomiting blood or is bleeding from the rectum
has fallen and may have broken bones
has had a seizure
has a severe headache and slurred speech
has pressure or severe pain in the abdomen that does not go away
moving the person could cause further injury
traffic or distance would cause a life-threatening delay in getting to the hospital
the person is too heavy for you to lift or help

If you know CPR or other emergency procedures, you should call for an ambulance before doing anything else. Once you make the call, you can care for the patient until help arrives.
Learn first aid and basic emergency procedures
If you are not familiar with CPR or other emergency procedures, and
would like to learn, you can take a course from the American Red Cross.
You should always call 911 or an ambulance before performing CPR
or first aid.

To locate a Red Cross near you, contact:

American Red Cross
431 18th Street, NW
Washington, DC 20006
(703) 206-7090
Going to the Emergency Room (ER)

Most people try to avoid going to the ER at all costs. However, there are times when the patient's need for care is urgent, and you must go to the emergency room. Here are some things that you can do to make going to the ER more satisfying:

If you think that the patient's condition may lead you to the ER,
pack a bag in advance.
Make sure you are familiar with the patient's medical history, in case
the patient cannot speak for him/herself. Keep a list of important information, such as past health problems, allergies, and current medications and dosages.  Click here to print and fill out a My Medication & OTC list.
Going to the  (ER) continued

Be able to describe exactly what the patient's problem is, when it started, what may have caused it, and if the patient was given any medication or other treatments.
Know the patient's legal rights and responsibilities while in the hospital. "A Patient's Bill of Rights" is a document developed by the American Hospital Association outlining the patient's rights regarding health care and appropriate treatment from staff within the hospital.
Use good communication skills. Though the ER can be a frustrating place, it will not serve you well to take your anger out on the staff. Try to be understanding and patient, while being assertive. To do this, follow these tips for better communication:
Don't be afraid to speak up if you feel that the patient's rights are being violated or if you are not satisfied with the patient's care.
Tell the health care professional about your dissatisfaction with
care in a direct way that is not demanding or disrespectful.
Speak in a way that does not put the health care professional on the defensive.
When talking, use "I" statements, such as, "I don't like that my mother is in so much pain," rather than, "Why won't you do some-thing about my mother's pain?" This sounds less accusatory, and expresses how you are feeling to the other person.
Be clear about what you and/or the patient need in order to feel
comfortable and content with the care.
Listen carefully to what the health care professional has to say and ask for clarification to make sure that you fully understand what is being said before responding.
Be sensitive to the health care professional's limitations in his/her ability to help you and the patient. ER staff members are usually very busy, over-worked and tired. Don't assume that they are just unpleasant or unwilling to help.
For patients who go to the ER frequently (e.g. pHD's who fall, etc.), try to develop good relationships with familiar ER staff members.
Know the ER chain of command. If you are not happy with the care
the patient is receiving or if there is a problem with a particular staff
member, identify the appropriate person to speak to.
There is a nurse manager who oversees the nurses and a chief physician who supervises the residents and other physicians. You should speak to one of these two people for problems with staff on the floor.
If you still are not satisfied with the patient's care, you can always
make a complaint to the hospital patient representative or administrator.