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Huntington's Disease Caregiving

What Is An HD Caregiver?
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What is an Huntington's Disease caregiver?
by Jean Miller
 
All of the things described (in first article) and MORE!!  Why?  Because those of us caring for a loved one with HD typically start our "caregiving" role when we first hear the words "you are positive for Huntington's Disease".
 
 Many of us have known about Huntington's Disease in the family and the at-risk status of our loved one(s) and are prepared.
 
 Many, although they have known about the risk of HD, made it through the "critical 30's" and felt we had skipped this monster only to find our loved one has late-stage HD.
 
 Many not only have a spouse with Huntington's Disease but now have children with Juvenile HD or children at-risk.
 
Our role as "caregiver" starts with the diagnosis of HD and continues for 15 to 25 years.  Yes years.  According to various literature, there are 5 Stages of HD and we are supposed to be prepared and knowledgeable to go through each and every one of these, mostly on our own.  
 
If we don't have a clue what HD is all about, the course is more difficult because we unknowingly think each "phase" we are passing through is IT and we've passed the critical point in our role as a caregiver. 
 
However before we know it,  we realize we were "WRONG" unfortunately there is more involved and it doesn't get any better.
 
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 Huntington's Disease.
 
 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 Disease,
   spouses have referred to this as being "married widows".
 
  If your child has Huntington's Disease there is the loss of not
   being able to see them mature,  to watch them graduate and
   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.