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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 .
Love
Jean
Links to more information:
Links to more information:
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