Juvenile-HD

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10 The Most Commonly Asked Questions
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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
Coping At The End

INDEX Page

 
I wrote the following to a mother who has asked for advice on
how to cope with the emotional strain of caring for a child in
the late stages of JHD in June 2000.
Kelly Miller who died of Juvenile HD

By Jean Miller  

This is not so much as a difficult subject for me any more, as it is for someone who is going through this with their child as you are. First, you DO HAVE the most important thing to give.....LOVE. This does not come freely and not all people have it to give!!!

 
My heart and soul died several times every day in
the last few years of Kelly's care and especially the last
6 months of her life since she went downhill so very quickly.
To have to tell your child that it is okay to let go, if they want
to....that you'll be with them again one day...is THE hardest
thing any parent has to do. And yet, we must when the time
seems near.
 
We have to let them know how brave they are/have been, how
much they have contributed to your life and your joy & love.
How very very special they are and will NEVER be forgotten but
remembered always with respect and love. It is so important for
them to hear these things and to know that you will miss them
but you understand when they get too tired to fight any longer.
 
The first time I told this to Kelly, when she was burning up with
unexplained fevers and delirious seeing Angels and talking to her
Grandpa who had died a few months before, I wanted to die with
her. I seriously had thought if my child goes, she is going with
peace and I will travel with her. That had been in the back of my
mind for years. I would NOT let my child suffer.
 
How did I survive before she died?  One day, when I once again
had to tell Kelly it was okay to let go, that God would not let her
suffer and both of our lives were in His hands, a great sense of
peace came over me. Then I realized what so many had said before
.....we cannot be superhuman and "fix" everything. There comes
a time when we all must give our lives over to a greater being and
trust His judgment that what happens was meant to for a good
reason. When I explained this great sense of relief to Kelly and
told her that from that day forward we were going to put our lives
in God's hands, as He knew what was best for us, she too smiled
and shook her head "yes".
 
The last week of her life I think I "knew" she was dying, and did not
want to accept this but in my heart did. I prayed, especially to the
Virgin Mary, that as one mother to another, I begged her to give my
child peace. To not let her suffer if she must be taken. This prayer
was said once again when sitting by Kelly's bedside a few minutes
before she died. When she stopped breathing, I had just stepped
out of the room for a second. Kelly knew if I was there I would have
done everything in my power to revive her, and this time she did not
want this. If you could have seen the biggest smile that had come
on her face in the moment she left, you would know the serene sense
of peace I felt knowing she had not struggled one second and actually
looked as if she had seen something or someone so beautiful, she
went gladly.
 
I wanted to die right then. I chastised myself so often for so many
months not being there in that second. I also knew in my heart Kelly's
quality of life had severely been compromised those past few months.
When I looked at pictures taken of her the month before, I was
shocked at what my heart and mind would not allow my eyes to "see".
One sense of peace through her death and afterwards was the fact
that we had planned what we wanted upon our death, together, two
years before. This let us have a warm and beautiful memorial service
for Kelly the week after she died.
 
Let me say I'm not a deeply religious person. I quit going to church a
hundred years ago but have always believed that there is a supreme
being (God?) and I also believe there is a different form of "life" after
death. I was raised Catholic, therefore had always felt a sense of
connection with the Virgin Mary. Now I didn't believe she was a virgin,
but a beautiful person at heart/a good soul who suffered watching her
son be tortured. Kelly and both had several experiences during the last
few years of her illness which gave us both strength in the confidence
she was being looked after. One night, even, when she was hallucinating
and thought evil spirits were trying to take her, with my own eyes I
saw this vision of a beautiful male angel come into her room and give
assurance she was safe.   Upon describing what he looked like to my
Mom, she said it was definitely Michael, the Archangel.
 
After Kelly's death I think I was numb and in shock for many many months.
I functioned every day. Went to work, made critical decisions which
affected many people, went out periodically with friends and tried to
accept their needs for me to "get on with my life as Kelly would want"
and only found true understanding in other parents who had lost a child.
 
The first few months I still heard Kelly cry out to me at night and would run
into her room. Sometimes I felt her come to me, when I would be crying,
assuring me she was really okay and that she loved me so much. Those
times were very real. The first time even her bedside companion/cat Cuddles
suddenly looked alert and went running into Kelly's room crying and
looking around.
 
I had lost my Dad two years before Kelly, my Mom 3 months before Kelly
and then my only child. My soul was tired. I found myself daydreaming
and unable to concentrate ...frequently. I cried to myself in solitude....
slowly I got on with life without Kelly. Since I took early retirement last
November, on the anniversary of Kelly's death, I have slowly come back
to being the person I was before Kelly needed constant caregiving.
 
Sometimes I feel very guilty, feeling "normal" again because I know this
freedom has come at a great loss. To keep my sanity, I constantly reassure
myself that Kelly IS at peace and we WILL be together again one day. My
life is now in "God's hands" and until such time as it is my time, to try to
find joy in each day. To always look for the good and beautiful that IS
surrounding us, when we are not too blind to see them.
 
I don't know if what I've been through offers you any consolation. It is,
unfortunately, a very great pain that you are facing. No one, not even
others who have gone through this pain, will feel the same as you will.
The only advice I can offer is to continue loving and caring for your son
as you do. Then when the time comes you will know that you gave him
everything you were capable of doing....and that he loves/loved you for
doing so. You will feel regrets over something you thought you could
or should have done, I think that's natural. At first we think that we
were at fault, in some small sense, in why our loved one had to die at
that second. The only salvation there is knowing, in your heart, you gave
everything you had to give.

Love,
Jean