During the course of our role as a caregivers we find ourselves:
Becoming the single "breadwinner" of the family which often means not only abandoning any "career" plans we
may have had but placing your family in dire financial straits.
Forced to become more knowledgeable then the average physician on what is best for a patient with
Becoming the "legal expert" and "union leader" combined in fighting to get your loved one on disability
plans they are entitled to, the work/insurance benefits they've earned, the rehabilitative therapies they need/will
need, the at-home help needed to maintain quality care or the best nursing home care, the respite you will need,
and the list goes on and on.
In other words HD Caregivers need to become the "top cop"
in making sure your loved one gets the BEST quality of care and at the same time is able to maintain their dignity and respect.......all
while keeping your sanity at the same time! Often we do this without any help or support from other family members,
friends or "the system"!
In addition there is the overwhelming loss of:
The dreams you shared as a married couple for a long life and
a blissful retirement together.
Those of watching your children grow, together, and sharing
the joys of being grandparents.
The loss of your partner in life often both emotionally and physically.
Sadly, but true especially in later stages of Huntington's
spouses have referred to this as being "married
If your child has Huntington's Disease there is the loss of not
being able to see them mature, to watch them
reach their goals in life, for them to know and
enjoy the love of
a significant other, to get married
and have children, to live to
a "ripe old age".
We will go through a long period of grief over the losses
Huntington's Disease brings to our lives, not only for ourselves but for our loved ones. This is a slow and insidious
disease and we are forced into the longest period of "mourning" anyone could possible imagine.
The only way to survive is not only to become the most knowledgeable
in the disease, through each phase as we need it, but through the support of others who are walking, or have walked, this
path. To share, to comfort, to understand, to have empathy and compassion. To reach out to each other; because
we are the only ones who truly understand.
Being a caregiver for someone with Huntington's Disease is a commitment,
whether you care for your loved one at home or in a nursing home. You are here for the long haul. You will learn
that life is THE greatest gift of all and every second we are given is to be savored to it's fullest. That we can get
through this with love, some beautiful memories and, yes, even laughter.
It is my hope that this website can help you find the information
you will need to become the best caregiver you can be, and to let you know your are not alone in this journey.