Story is below im going to ask the question and post recent update here. My father has a g tube and we just got on hospice Friday after rapid decline from huntington's disease untreated due to him saying nothing is wrong he doesn't need but he is home and the past 3 days hes felt hot and cold, has severe secretion in throat and coughing up thick formula color/yellow mucus, no fever but his hands and feet are always cold abdominal area and back are always so hot to touch, hes been so very irritated,his speech decline is extensive in the past 5 days he went to me the one who knows him so well not even able to understand him, hes always grabbing at stuff and picking at his blankets trying to move and he gets confused I know all this is early signs of dying but today he was fine i mean semi fine he smoked a cigarette (COPD and dying be dammed an smoked his "medicine") put on his hat and slippers and showered talked to me and just like almost a "rally" and he started antibiotics last night for upper respiratory infection but yesterday he had coffee and then he got sick didnt eat much yesterday and nothing last night for over 16 hours and today hes barely been able to tolerate any fluid or food without obvious discomfort today he has peed maybe 100 ml every couple hours if that when normally he pees every literal 20 minutes a LOT at a time but he says hes fine always and refuses meds but I give him pepcid to help reflux regardless but this evening he has been asleep a lot kind of talking about going to bed I gotta go an mouth is dry eyes are glassy hes not in pain or stressed but secretions are present weak coughing (I did give guafisen to break up mucus) is this what I think? Is he transitioning to dying? What other signs will follow? Anyone dealt with HD with comorbidities like COPD and failure to thrive, calorie malnutrition and so much more. His stats are good the hospice nurse yesterday said hes fine but he was different yesterday than today. Is he just sick? I mean I know hes not and hes refusing all meds.... he knows but he says im not sick, ill get better, nothings wrong with me. Hes cognitively present most of the time but he has preservation and gets stuck on certain things and idk what to do. My mom died suddenly a year ago and this is traumatic and hospice hasn't been comforting at all tjey say hes fine dont listen to me and send meds
My dad has Huntington's (HD) and recently had a rapid decline to total care and im his caregiver. We just got on Hospice. It happened so fast within a span of maybe 4 to 6 months but beginning of December he started falling, broke his clavicle, couldn't swallow (symptom was present just progressed to needing a GI Peg tube), breathing problems (COPD so O2 is always good but shortness of breath always "drowning"), speech decline, mobility (walking to walker to wheelchair and bow hes so rigid he can barely transfer from chair to bed )and went from independent to total care within a month to 6 week period. He went from 130 to less than 110 in 4 months. They diagnosed him with the swallowing issues and placed a tube bc he wanted it (his cognitive has declined so much, he knows hes sick but says hes gonna get "better") it was so sad reading doctor notes he said "I wanna get better for my daughter's and be able to walk out of here and live my life better now". Anyways he was admitted after placement of the tube into a rehab facility for two weeks where he declined further (palliative scale score? Was 50 but went to between 30/40 within days), he was sent home on palliative care about 10 days ago. We switched to hospice Friday due to so much so fast I had to take a LOA from my job with LWOP because he needs care round thr clock. I am up on my feet from 5am to midnight or 1 with maybe 5 to 10 minute breaks 5 or 6 times on a good day. Today everything is changing and I thought I was ready but im not. I need supportive people and stories of passing of your loved ones. Thanks for listening
I so hope you, siblings and children have been tested. My friends grandfather and two of his children had it. One was my friends mother. Out of her 4 children only one had it and passed. My friend and her children don't carry the gene.