When Loved Ones With Huntington’s Disease Need To Be Placed

At our last HDSA San Francisco Bay Area Affiliate Board meeting, I had invited Natasha Boissier, social worker who facilitates the monthly Huntington’s Disease Society of America El Cerritos Huntington’s disease (HD) support group, to give insights into the challenges of Huntington’s Disease families.         

One of my questions was, “what is an issue that comes up over and over with the participants in the support group?”  Her answer was, “Placement when caregivers are no longer able to care for their loved one.”

There are so many facets to this issue when HD families are confronted with this dilemma.

Lora, Cindy and Marcia Marin

And I can relate to what families go through because John and I were accosted with this tough decision with Marcia and Cindy, my sisters-in-law, who had HD. 

Some of the concerns might be: (every family is different and deals with it in their own way)

  1.  How can we find the right facility?
  2.  How are we going to pay for the care in a skilled nursing home/residence care facility?
  3.  Is this the right time to move him/her?      The emotional toll on family members making this decision is difficult and heartfelt.  Some worries might be:
  1. Am I giving up on my loved one?
  2. Is death imminent at this time?
  3. Will the care be loving and kind?
  4. Will my loved one understand?
  5. Can I handle another loss?

HDSA has online support groups for caregivers specifically.  Please visit upcoming meetings here:

We Can Never Lose Hope…….

I’m a Huntington’s disease (HD) advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  Visit my website and learn about HD:



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