Our Final Journey
About me
Tools For Viewing
Let's Talk About It
Section 1 - Assistive Technology
Section 2 - Divorce Issues
Section 3 - Drugs/Medications
Section 4 - Checklist, Documents, Forms
Section 5 - Employment Issues
Section 6 - Estate Planning
Advanced Directives & DNR's
Section 7 - Caregiver Resources
Patient Quality of Life: Should Doctors Guess It?
Incontinence Care
Section 8 - Children Seriously Ill
Children of The Chronically Ill
Siblings of Children with Special Health Needs
Guides To Disability Issues
End Stage Hospital & Home Care
Child With A Serious Illness
Individual Family Service Plan (IFSP)
Camps-Special Needs Children
Children's Wish Foundations
Section 9 - For Kids
Section 10 - Family Resources
Section 11 - Patient Resources
Section 12 - Financial Aids
Section 13 - Insurance
Long Term Care Insurance
Section 14 - Legal
Section 15 - Long Term Care
Section 16 - Symptom Support
Section 17 - End of Life
Section 18 - Funeral Planning
Section 19 - After Death Occurs
Hospice FAQS
Symptom Support
Behavoir Strategies
Ill Person's Feelings
Caregiving & Family Harmony
Caregiver Grief ~Article
End of Life
Comforting A Dying Person
End Stages of Life
When Someone Dies
Funeral Planning
Bereavement Fares and Discounts
Common Bonds of Caregiving
Tips For Helping Your Friend
About me
Free Greeting Cards
Estate Planning Definition
Living & Other Trusts
Wills & Beneficiaries
State Laws On Wills
Conservator~Guardianship Definitions
Insurance Issues
Avoiding Probate
Prescription Drug Program I
Prescription Drug Cards II
Disability & SSDI Insurance Questions
Long Term Care Insurance
Employment Issues
Divorce Issues
State Laws-Statutes
Making A Personal File
Emergency Info Form
Emergency Planning
Health Care Surrogate
Forms, Checklist
Family Resources
Patient Resources
Rehab Tools-Assistive Tech. Categories
State Map-Ombudsman Program
NH Your Rights-Fact Sheets
Nursing Homes and Your Rights - Factsheets for some seriously ill or their caregivers.
Long Term Care-Facts & Rights
State & Federal Resources
Drug Resources
Grief & Sorrow
When death nears - Signs and Symptoms
Some Facts About Artificial Nutrition and Hydration
Things To Consider-Artificial Nutrition and Hydration
             My Experience-Short Bio
First, I would like to clarify that I am not an "organization" just an independent person volunteering my time to try and support families who are facing a terminal illness or end of life.  I do not seek any recognition or derive any profit from this website.  I have tried to give credit and/or the source for each article contained in it's entirety on this website however if I've neglected to reflect this information correctly, please let me know.
My only child, Kelly Elizabeth Miller, had Huntington's Disease, an inherited, degenerative brain disease with no known current cure.  Kelly had the juvenile form of HD with symptoms starting at age 9-10, diagnosis at 16 and she gave up her battle at age 30 on November 15, 1998. During my caring for her at home, later with Hospice assistance, I searched for and found many resources on line not only to help with her care but primarily, to allow her retain her sense of dignity and self-respect.
The end stage of life for someone we love dearly, and have devoted a large portion of our lives to caring/sharing, is one of the hardest journeys to make in Huntington's or any disease. Never is there a time like now when more compassion is needed or a hand held out in support and love.
Since  Kelly's death, I've talked to a lot of HD families about things to expect when the end is drawing near.  It is a subject that is rarely discussed until the need arrives. But I have found that, most of the time, waiting until the need arises causes more pain for families.
It is more helpful to be aware of what is needed, and to expect, beforehand. Planning, together, for the end of our lives should be a "family event", done in healthier/more relaxed times, alleviating a lot of confusion, pain and grief when the time comes.

Loved ones who are facing the end of their life need affirmation of their love and worth. Caregivers and family members need to be reassured that they HAVE given not only their hearts and love to that person, but to their care too.

There are some excellent articles linked here to help you in talking about the needs of the both the person who has a serious illness,  to their family or for your own information and guidance as well as overall
Estate Planning for the entire family.

I've tried to put together a few sites which may help families in considering the future and deciding, now, what their choices are so that their wishes will be honored .
Links to more information:
My Daughter
Kelly Elizabeth Miller
Age 18 & 30
(on her last birthday January 1998-that's the Help CURE HD mouse on her head!)