Community Conversation - Do you feel like hospice is a service that is helpful for HD/JHD families?
1. I feel like Hospice should be the very last option at the very end of life. In our poor county, the only benefit they could provide is morphine for pain control. They have a limited staff and no grief support. Palliative care is the best option for JHD and not all Hospice organizations provide that type of care.
2. Hospice staff was invaluable to me as I navigated end of life care, on two separate occasions with unhoused men in Adult Family Homes with HD
3. They worked with the person who ran the home to get the best possible care by educating them gently as they progressed. They also helped me get supplies and home care items that made life safer for them. And, they offered services for me to deal with my own feelings and grief, before and after they died
4. I think hospice is so important but it takes one person to change the whole experience. The one thing I learned is if you don’t like someone on your hospice team or they make you feel like they aren’t going to do what’s best for you and your loved ones ask for someone different right away. You don’t want that person there in your loved ones final last days. BUT besides that hospice brings comfort to our loved ones and that is something so important for the family as a whole.
5. Hospice has been very tricky for me as my mom navigates her transition in an inpatient unit
6. I'm not quite sure HOW to answer. I think it would be a good thing. But WHEN is the time? I thought many times it would be a help to call them in. BUT....I refuse to bring anything that is about "End" around Jimmy. Many say No its not end they help blah blah blah but I want NOTHING remotely end like. Keeping my son alive, living, going, having a future all the positives. But I THINK it would be good. WHEN the time is here.
7. We'll know. Our hearts will let us know 😔
8. I knew for my Mom. Hospice was a blessing tho. I was able to give my Mom 100% of my time without doing all the changing, meds. I spent all my time just talking with her, holding her hand. But when the time came, my heart knew.