Huntington Caregivers: Let's connect

Posted by cjme @cjme, Apr 28 12:34am

Is anyone else caring for someone with Huntington Disease? If so, how are you getting through it? I currently have a caregiver to help twice a week, but may need more help soon. Keeping him safe is becoming more challenging as it advances.

Interested in more discussions like this? Go to the Caregivers Support Group.

agh | @agh | May 18 5:32am

Would also like to hear from others about caregiving for those with HD. Resources for this particular kind of dementia.

cjme | @cjme | May 18 10:53pm

In reply to @agh "Would also like to hear from others about caregiving for those with HD. Resources for this..." + (show)

@agh I posted somewhere else, my husband's care team has a neuropsychiatrist that specializes in disorders (mood and insomnia for him) specifically associated with HD and Parkinson's. The medication she prescribed was spot on for his symptoms, mostly aggression and anxiety.

Colleen Young, Connect Director | @colleenyoung | Jun 2 3:33pm

In reply to @cjme "@agh I posted somewhere else, my husband's care team has a neuropsychiatrist that specializes in disorders..." + (show)

@cjme, can you share a bit more? What stage of progression is your husband's Huntington's (early, intermediate, late-stage)? What impact of disease are you both facing at the moment? How are YOU doing today?

cjme | @cjme | Jun 4 8:54pm

In reply to @colleenyoung "@cjme, can you share a bit more? What stage of progression is your husband's Huntington's (early,..." + (show)

@colleenyoung I'm not sure which stage he's in. It's either late intermediate or late stage. He is not able to complete any ADLs, I dress him and prepare his meals. He has trouble with coordination, but is able to feed himself if the food is diced and "spoon ready." It's messy and he chokes almost every meal, but he gets it down and has not had weight loss. He has refused a feeding tube. He walks unsteadily and our wonderful non-emergent EMS "lift assist" has been helpful when we occasionally need them make him vertical again. He has difficulty with tremors and tetany, but medications give some improvement. He still talks as times but it is hard to understand. His doctor is ordering a Hospice consult so we will know criteria for admission and how they can help with his care.

Colleen Young, Connect Director | @colleenyoung | Jun 17 5:17pm

In reply to @cjme "@colleenyoung I'm not sure which stage he's in. It's either late intermediate or late stage. He..." + (show)

@cjme, when will you have the hospice consult? Would this be in-home hospice care, meaning they come to you? Or are you considering hospice care at a facility, called residential hospice?

cjme | @cjme | Jun 18 1:22am

In reply to @colleenyoung "@cjme, when will you have the hospice consult? Would this be in-home hospice care, meaning they..." + (show)

@colleenyoung His doctor will be ordering the Hospice consult, but they are also ordering a PT consult to teach me how to use the Hoyer Lift. They were concerned that the PT consult may be denied if the consult was ordered, so I'm waiting for PT. The Hospice consult would be for home visits. Our local Hospice team is wonderful! I'm not sure what they would assist with at this point, probably Palliative assessments, because he denies pain, tries to tough it out, but grimacing with movement tells another story. Also assisting with showering would be great. I don't think a consult should interfere with his other care, it may confuse insurance coverage, but it should only limit certain care if he's qualified for and admitted to Hospice.