Huntington's Disease For Families

Forum-Caring IS Sharing
Home | Index | Alphabetical Listing | Site Specific Resources | Advocacy | Caregiving | Disability Benefits | Map-Where We Live | Nursing Care In Late Stage HD-Home Page
Caring Is Sharing!
 
The MN HDSA Chapter newsletter has a section called Doctor's Corner  written by Dr. Martha Nance.  The recent article  discussed the tragic events of the Carr family in Georgia.  In this article,  Dr. Nance asks:
  • How can we get caregivers to recognize when they are worn out?
  • How can we get caregivers to ask for help?
  • Where can we find the money/time needed to provide the hands-on help that caregivers need?
  • And what can organizations like HDSA Chapters or support groups do to better serve ourselves and each other, so that tragedies like the one in Atlanta can be avoided?
  • What are your thoughts about end-of-life care in HD?
  • What can you or I could do to make more of a difference?
If you have beautiful stories to tell, please tell them - I think we often hear the negative stories, the disasters, the mistakes that doctors or nurses or brothers from California have made.  Perhaps we need to hear more of the good stories, to tell us what it is like when things go right.
 
Speak up, and speak often!!  Together we can improve the quality of life for people with HD, and their families.
 
Please use the below forum to share your thoughts, feelings and ideas!