Community Conversation -
Updated: Sep 20, 2022
1. "The most frustrating thing we repeatedly heard was that my husband was too young. I would call care facilities, and he was immediately turned down because of his age."
2. "The biggest struggle was the nursing home not feeding Nana by hand once she literally couldn't...so she was starving! I had many wars about it!"
3. "I couldn't get in home care for my son...or didn't know how to request it. When he was hospitalized we had trouble getting him into a care facility. When we did find one the care was excellent. His doctor has since worked with a facility who will care for HD patients."
4. "Honestly my husband refusing ANY outside help, when really he is at the point he really needs to be out of our home and in a group home or assisted living at this time.cant get a case worker at the hospital he is treated at to even call and speak with me about options for him to receive outside assistance, whether he agrees or doesnt. I've called myself to nursing homes/assisted living locally about my husband and the disease and I'm basically being told I'll be lucky if medicaid and Medicare pay for him to be at a facility right now, and if he is forced to come now I will likely have to pay out of pocket.... which I can't. So I'm stuck and with little help and my husband refusing to acknowledge that it's not good for him to be here anymore."
5. "Finding qualified caregivers! Often we will get a great caregiver and then they will quickly move onto a new opportunity. We had one Caregiver who insisted my husband was just being stubborn when he didn’t listen to her, and that his disease could be “prayed away.” We had another caregiver who never once spoke to my husband. She just did not interact with him."
6. "Reliable aides
On time aides
Aides without a positive attitude
Aides falling asleep
Aides constantly on their cell phone.
Aides going on the patio to smoke and can't see if my daughter's choking.
Aides wearing perfume when you asked them not to.
Aides treating my daughter like she was deaf.
Myvson in law finally retired last year to care for her. Medicaid pays him for a certain number of hours. But he's still caring for her 24/7."
7. "I have HD, and my heart hurts when I read these comments, about how horrible we are to take care of, and that there are no good places/people outside the home for care. Please give us the right to assisted suicide, as that will be my choice, before I became a burden to anyone else."
~We have a broken system that doesn't foster education and awareness. Our loved ones with HD are not a burden, my mom and brother were amazing humans, and so many others who I love are people I would care for in a second. The issue isn't with "you" it's with "them." I'm thankful that you commented! We need voices like yours heard.
~This makes my heart hurt that you feel this way. My husband was never a burden to any of us. The system was the burden. Not having enough services for your loved ones and our caregivers that our community deserves. And having to fight for everything my husband that he needed. But we did fight for him because we loved him, and he deserved someone fighting for him.
8. "To be honest my worry is that the internet goes down."