Community Conversation - What's the most rewarding part of caregiving for someone with HD/JHD?
Updated: Sep 20
We asked - and you answered! There are so many variables regarding Huntington's Disease and caregiving. We were excited to see everyone's responses to the simple question, "What's the most rewarding part of caregiving for someone with HD/JHD?" The answers were similar yet different, here are some:
~ Knowing that your HD loved one had made an impact and impression on others by seeing her HD resilience and fight to survive. The warming of my heart to witness the care facility staff (nurses, housekeeping, laundry, other residents, activities director) who showed their love, care, and respect to my 37-year-old daughter with HD in her last hours.
Knowing my daughter educated so many people on living with HD and the impact it has on families.
~ For me, it was how grateful he always was for everything I did for him. Seeing the big smile every day no matter how he felt.
~ I help take care of my granddaughter,________, who has JHD. She is so special to me because she always has a smile. I take her to horse therapy when_______can’t. Just to see her happy face when she is on the horse, my heart smiles. I even have her name tattooed on my wrist.
~ The hugs and appreciation from my pHD When he recognizes my efforts. Gives the best hugs!
~ I agree. The hugs and appreciation from my sister. She passed away a few years back, but I can still remember her smiles and hugs...
~ Spending more time with them than would otherwise be the case. Many more years to enjoy reading children's books and playing children's games. Savoring our time together, knowing it won't last but making the most of all good presents.
~ The hugs ______gives me, they are the best hugs.
~ When they remember little things long after you thought they were gone forever. Every time my mom says my name. This year for the first time in 8 years, she remembered my birthday. She still thinks I'm in my 20s, but I'll take what I can get. Also, her favorite artist is Rod Stewart, and on good days I put his music on, and she can sing every word.
~ My mom is a blessing; she was a nurse for 30 years before she became an active HD warrior and cared for everyone all her life. I get to care for her now.
~ My son was in hospital yesterday; he looks into your eyes, and they are saying thank you. We stayed with him for 26 hours until released.
Don't forget to join us on July 23rd, at 9 AM PT, to hear from the HD community and their different journeys. #TogetherWeAreStronger #Help4HD #HD #HuntingtonsDisease #JHD #JuvenileHuntingtonsDisease #HIPE #CommunityConversations