Juvenile-HD

HOME

INDEX Page
Tools For Viewing
10 The Most Commonly Asked Questions
Clinical Trials & Research
Huntington's Disease~WeMove Info
Advocacy/Donations/Press Info
Clinical Definition & Search
Facing HD~Family Handbook
JHD Handbook-Chapter 1
JHD Info-Stanford Univ.
Physician's Guide To HD
Caring for People with HD
Physical & Occupational Therapy In HD
Understanding Behaviour in HD-Dr. Jane Paulsen
Understanding Behavioral-Dr. Edmond Chiu
Advanced Stages Caregivers Handbook
First Shift-Certified Nursing Assistants
Activities of Daily Living-HD
Unified HD Rating Scale (UHDRS) Motor Section
Westphal Variant
SECTION 1 - AT RISK
Age & Probability Chart
At Risk For HD-What Next?
At-Risk Checklist
Best Interest of Child?
Crystal Ball?
Food For Thought
Parent Hasn't Tested?
Q&A On Risk of Inheriting JHD
Testing Children
SECTION 2 - GENETIC TESTING
Genetic Disorders & Birth Defects
Genetic Testing for HD
Genetic Counseling-In General
Psychological Impact
Intro: Genetics/Genetic Testing
Prenatal & Preimplanation
Prenatal Testing-In General
o Genetic Testing Resources
o Personal Stories
SECTION 3 - JHD
Coping With The Early Years
Age of HD Appearance
Age of Onset-Historical
Family-HD Underestimated
Children of Parents With HD
Child~Parent Ill
Clinical Description JHD
HD - What Kids Are Saying
HD & Me
JHD-Duration of Illness
JHD-Clinical and Research
JHD Symptoms
Parenting With HD
Patients/Families Coping
Talking With Children About HD
5 Stages of HD
JHD Resources
SECTION 4 - SYMPTOM RECOGNITION
Parent Resources
8 Fears of A Chronic Illness
Anxiety/Apathy/Irritability~HD
Anxiety, Fears & Phobias
Apathy-Physician's Guide
Ataxia
Attention-Perceptual/Unawareness Physician's Guide
Bed/Pressure Sores
Bed/Pressure Ulcer Guideline
Behavior Management
Bi-Polar Disorders
Botulinum toxin therapy
Bradykinesia
Caring Tips
Child Abuse-Reconizing Signs
Chorea-Physician's Guide
Chorea
Cognitive/Decision Making/Impulsivity
Cognitive-Short Tips
Contractures~Joints Locking
Dehydration-Physician's Guide
Dehydration
Delirium
Denial of HD
Depression~Physician's Guide
Depression-Understanding It
Depression-How To Help
Depression - Treatment Resistant Patient
Depression-Other Resources
-Read If Your Child Is On Antidepressant
Disgust - Impaired Recognition in HD
Dissociative disorders
Driving - Physician's Guide
Dyslexia
Dyslexia Resources
Dystonia
Dystonia/Rigidity & Spasticity Physician's Guide
Dystonia-Predominant Adult-Onset HD
Epileptic Seizures and Epilepsy
Epilepsy-Seizures~PG
-Seizures ~Special Populations
Falling~Safety
Falling - Subdural Hematoma Risk
Fevers - Unexplained
Fevers, sweating & menstural cycles in HD
GERD (Stomach)
HD Principle Treatments
Hallucinations/Psychosis~PGHD
Hand muscle reflexes in HD
Hypothalamus - A Personal Theory
Insomia ~Physician's Guide
Irritability~Temper Outburst Physician's Guide
Learning Disability
Mania/OCD~Physician's Guide
Mood Disorder Rate In HD
Myoclonus (Movements)
Nails-What To Look For
Night Terrors
Obsessive Compulsive OCD
Panic Disorder
Personality disorders
Pneumonia
Pneumonia-Advanced Stages
Pneumonia - Aspirated (Inhaled)
Prosody - Social Impairment
Sexuality~Physician's Guide
Skins Sensitivity
Sleep Disorders
Smoking-Physician's Guide
Spasticity
Stress
Tremors
Why Certain Symptoms Occur
Symptom & Treatment Resources
SECTION 5 - COMMUNICATION
Communication Resources
Communication Problems
Communication Strategies For HD~Jeff Searle
SECTION 6 - EATING/SWALLOWING/NUITRITION
Hints For Weight Loss in HD
HD & Diet~HSA Fact Sheet 7
Nutrients: Some Possible Deficiency Symptoms
Nutrition and HD~Anna Gaba (Recipes)
Nutrition Information In HD~Naomi Lundeen
Speech & Swallowing~Lynn Rhodes
Swallowing & Nutrition Physician's Guide To HD
Swallowing & Nuitrition Resources
Swallowing Warning Signs
5 Swallowing Problems
Taste changes in HD
Weight Gain
Resources-Drinks/Shakes
-Feeding Tubes~Advanced Stages of HD
-Feeding Tube~Jean Miller
-Feeding Tubes: One More Word ~Jean Miller
-Feeding Tubes & Baby Foods
-Feeding Tube~Dental Care
-Feeding Tube Instructions~Jean Miller
-Feeding Tube Resources
SECTION 7 - THERAPIES
Finding a Therapist - Behavoir
What Is A Physiotherapist?
Physical Therapy In HD
Speech-Language Therapy
Therapy Descriptions
Therapy Resources- Easter Seal
Therapy Resources
SECTION 8 - MEDICATIONS
HD Treatments
Medications-Movement Disorders
Medication/Emergency Info Forms
Cutting Prescriptions
Drugs-Look 'Em Up
-Adolescents Under 25
-Antidepressant Adverse Effects
-Anti-psychotic
-Anxiety-Antidepressant
A-Z Mental Health Drugs
-Creatine
-EPA~Fish Oil
-Haldol/Haloperidol - Clinical Sheet
-Haldol~Clinician Description
-Haldol & HD
-Haldol/HD Patient Experiences
-Haldol~ Patient Handout
-Mood Stabilizers: ASK 3 Questions
-Neuroleptic Malignant Synd WARNING
-Olanzipine-Risperidone/blood tests
-Celexa/Luvox/Paxil/Prozac/Zoloft
-Psychiatric Drugs & Children
Sertraline ~Zoloft
-Spasticity Meds/Treatments
-SSRI Medications
-Tardive Dyskinesia WARNING
-Weight Gain Medications
-Sites/Help the Medicine Go Down
-Vitamin & Mineral Deficiencies
SECTION 9 - SURGERIES
Surgery-Movement Disorders
o Surgery Resources
SECTION 10 - PROCEDURES
Clinic Visits-How To Prepare
CT Scans, MRI's etc.
Swallowing Tests
Tests Commonly Used
o Procedures Resources
SECTION 11- ALCOHOL/DRUGS
Alcohol-Parent's Guide
Alcohol-Talking To Your Child
Drugs-What To Do?
Drugs-Talking To Your Child
Disciplining-Ages 0-13 & Up
SECTION 12- SUICIDE
Straight Talk On Suicide
Teen Suicide-You Need To Know
o Suicide Resources
SECTION 13 - DIVORCE
Divorce & Child Stress
Tips For Divorcing Parents
SECTION 14 - DISABILITY ISSUES
Guides To Disability Issues
Caring-Child & Medical Technology
Caring for a Seriously Ill Child
Child Long Term Illness
Disability-Special Education Plan
IFSP Early Intervention Process
Disability Resources
Financial Planning
Wishes Can Come True-Children's Wish Foundations
Special Needs Resources
Special Needs Camp - About
Special Needs Camp - Finding One
SECTION 15 - ASSISTIVE TECHNOLOGY
Child Assistive Technology
Adaptive Equipment Resources
Products
SECTION 16 - EMOTIONAL ISSUES
Signs of Unhealthy Self-Esteem
Emotional Behavior Links
o Emotional Support Resources
SECTION 17 - GRIEF
Helping Child Deal With Death
o Grief Addtional Resources
SECTION 18 - ADD/ADHD
ADD & Teens
Conduct Disorders
FAQS & Related Info
Understanding AD/HD
What Is AD/HD?
Research Articles
Resources
SECTION 19 - HD SUPPORT GROUPS
HD Support Groups
National Youth Association
SECTION 20 - HD LINKS
HD Links
Related Resources
Tips For Friends
SECTION 21 - BENEFITS/INSURNACE
HD Disability
Benefits Check UP - See What You Can Get
Medical Insurance Bureau's Facts On You!
Medicare-Medicaid
Medicare Rights-Home Health & Hospice
Medicare Rights Center Resources
No Insurance? Try This!
Prescription Drug Cards Part I
Prescription Drug Cards Part II
Social Security-Children With Disabilities
SECTION 22 - ARTICLES/JHD
JHD and ADD
SECTION 23 - CAREGIVING
Articles-Resources
Caregiver Self-Assessment
Caregiver's Handbook
"First Shift With A Person With HD"
Getting Respite Care/Help At Home
Helpful Forms-Info
Home Emergency Preparations
Symptom Management
Ten Tips
Useful Tools
SECTION 24 - BIO
Our Personal Experience
Coping At The End
Kelly E. Miller
Song & Verse
Letter From My Heart
GUESTBOOK
Getting Respite Care/Help At Home

INDEX Page

Click on Section to be taken to information.

Getting "Respite" Care or Extra Help at Home

Overview

Understanding the Problem

What "respite" services are
Why extra help may be needed
Who "respite" helpers are

When To Get Professional Help

Situations indicating that extra help is needed
What to say when you call for help

What You Can Do To Help

Make sure you involve the person being cared for in all decisions
Make sure the extra helpers are both reliable and honest

Possible Obstacles

"We've never had anyone else help us before."
"The person I'm caring for doesn't want anyone else here."
"I feel funny having strangers come into my home."
"It's too expensive."

Carrying Out and Adjusting Your Plan

Ask yourself and the person you are caring for how well the plan is working
If your plan does not work, consider temporarily moving the person you are caring for into a nursing home

Topics with an arrow (--) in front of them are actions you can take or symptoms you can look for.

* The information in this plan fits most situations, but yours may be different.

* If the doctor or nurse tells you to do something other than what is recommended here, follow what they say.

Written for cancer but you can substitute any life threatening illness or condition. Source American College of Physician's/Internal Medicine (ACP/ASIM)  http://www.acponline.org/public/h_care/6-respit.htm

Some other articles on this website (click on topic)

Communication - Problems with Communication, Mental Confusion and Seizures

Helping Younger People cope with death and funerals

OTHER RESPITE RESOURCES

Visiting Angels
http://www.visitingangels.com/
1-610-642-HOME
Contact Central Office:
http://www.visitingangels.com/contactus.shtml

Our Visiting Angels are screened and bonded, and have experiences and qualifications which range from providing companionship to caring for the terminally ill. Their backgrounds include strong prior training, working in nursing and convalescent homes, hospitals, day centers and private homes. Many have obtained certifications such as C.N.A.'s, L.V.N.'s and Home Health Aides. These traits enable them to provide you with the quality care you deserve.  Most of their websites say they offer "hardship" discounts to families too, vs the typical $14.00 an hour, if you meet their financial hardship requirements.

ARIZONA: Chino Valley
CALIFORNIA: Fresno; Northridge; Woodland Hills; Exeter; Sacramento; Santa Clara; Moreno Valley; Alamo;
                       Redondo Beach; Los Angeles.
COLORADO: Colorado Springs; Pueblo.
CONNECTICUT: Brookfield.
DISTRICT of COLUMBIA: Washington.
FLORIDA: West Melbourne; Fort Myers; St.Petersburg; Tarpon Springs; Delray Beach; Ft.Lauderdale; Clermont.
GEORGIA: Albany; Valdosta.
IDAHO: Kuna; Marion.
KANSAS: Overland Park.
KENTUCKY: Florence.
LOUISIANA: Baton Rouge.
MARYLAND: Laurel; Bowie.
MASSACHUSETTS: Worthington; Marshfield; N.Attleboro.
MICHIGAN: Frankenmuth; Holland; Grand Rapids; St.Clair Shores.
MINNESOTA: Anoka; St.Louis Park.
MISSISSIPPI: Hattiesburg.
MISSOURI: St. Louis.
NEVADA: Henderson; Sparks.
NEW JERSEY: Long Valley.
NEW MEXICO: Albuquerque.
NEW YORK: Goshen; Williamsville.
N.CAROLINA: Raleigh; Durham; Greensboro; Charlotte.
OHIO: Akron. OKLAHOMA: Yukon.
OREGON: Central Point.
PENNSYLVANIA: Havertown; Cogan Station; Allentown; Wilkes-Barre; Lancaster.
S.CAROLINA: Sumter; Mt.Pleasant.
TENNESSEE: Chattanooga.
TEXAS: Mesquite; Houston; Spring; Austin; Round Rock; San Antonio; Corpus Christi; Humble; Flint.
UTAH: West Valley.
WASHINGTON: Bellingham; Seattle.
WISCONSIN: Pewaukee; Milwaukee; West Allis.
CANADA: British Columbia; Ontario


This website lists all of the California Respite Programs (wish all states had this) http://www.chtop.com/calstate.htm

National Respite Network
http://www.chtop.com/archbroc.htm
Contact your State's respite coalition, click on your state at http://www.chtop.com/coalitions.htm

ARCH National Respite Network
provides a variety of informational resources to the general public:
a National Respite Locator Service: 
http://www.chtop.com/locator.htm

Respite for Families with Children Experiencing a Serious Emotional Disturbance
http://www.chtop.com/archfs34.htm
Finding respite services for a child with challenging behavioral issues, can be difficult for families. This factsheet discusses the definition and characteristics of emotional disturbance, issues for families, program considerations including the referral process, the matching of respite providers and families, liability, training, and evaluation, as well as the need for state involvement in program planning. Written by Judith Sturtevant, Director of Vermont Federation of Families, and Sandra Elliott, former Director of Family Respite Services of Overlook Center, Inc
    Introduction
    Definition
    Characteristics
    Family Considerations
    Program Considerations
    State Administration
    Summary
    References
    Resources

Providing Respite at Conferences for Children with Special Needs
http://www.chtop.com/archfs38.htm
More and more conference planners are understanding the value of offering respite services to families attending their conferences. Written by Susan Bridges Robertson, who has direct experience in offering respite at a large national conference, this comprehensive factsheet covers logistical concerns, liability issues, staffing questions, meals, registration basics, budget issues, and evaluation.

Respite Services for Families with Adolescents at Risk of Abuse or Neglect
http://www.chtop.com/archfs39.htm
An often forgotten population in the field of respite, teens and their families in crisis can greatly benefit from temporary relief. Program design, services for parents, and services for adolescents are discussed. Written by Jill Edwards-Sutton, Child and Family Services Director with Mid-Michigan Community Action Agency.

Adult Day Care: One Form of Respite for Older Adults
http://www.chtop.com/archfs54.htm
Adult day care centers, also known as adult day services, have been providing a form of respite for caregivers for more than twenty years. In 1978 there were only 300 centers nationwide. By the 1980s there were 2,100 centers, and today there are about 4,000 centers nationwide, according to the National Adult Day Services Association (NADSA). NADSA reports that the need for such centers has "jumped sharply to keep pace with the mushrooming demand for home and community based services."
    Introduction
    Benefits of Adult Day Care
    Types of Adult Day Care
    Who Uses Adult Day Care?
    How Long do Participants Stay?
    How Do I Choose a Center?


ELDER CARE  (59.5 or older)
http://www.eldercare.gov/default.asp
Eldercare Locator, a nationwide toll-free service, has helped older adults and their caregivers find local services for seniors. The U.S. Administration on Aging is now pleased to make part of this service available on-line so that consumers can easily link to the information and referral (I&R) services of their state and area agencies on aging. These I&R programs can help you identify appropriate services in the area where you or your family member resides.

The toll-free Eldercare Locator service operates Monday through Friday, 9:00 a.m. to 8:00 p.m., Eastern time, and can be reached at 1-800-677-1116.  Find a facility in your state at above website

National Adult Day Services Association's
NCOA Office Location
409 Third St., SW
Washington, D.C. 20024
Phone 202/479-1200
E-mail  
info@ncoa.org
Directory of Adult Day Services http://www.nadsa.org/

Hollywood  CALIF  Senior Angels
http://www.hollywood4seniors.com/hollywood_senior_angels.htm

Finding Federal Funds for Respite and Crisis Care Services
http://www.chtop.com/archfs52.htm
This fact sheet provides basic information about each of the federal programs that provide funding to states which they could, if they chose to, use to fund respite and/or crisis care programs. For more complete information about each of these federal programs, readers are encouraged to see the ARCH Guide to Federal Funding for Respite and Crisis Care Programs

Results of ARCH 2001 Survey of State Respite Coalitions
http://www.chtop.com/archfs56.htm
From an historical perspective, planned and crisis respite are relatively new services for families caring for a dependent family member. Although respite programs were developed in the 1960s, most States still report a serious shortage of respite for families in need. This nationwide shortage of respite programs, coupled with the realization that there is strength in numbers, planted the seed that has lead to the growth of State respite coalitions