I am now the primary caregiver for my brother-in-law. He is 32 and has Huntington’s Disease (HD) which is a neurodegenerative brain disease. It has been described as having Alzheimer’s, Parkinson’s and ALS at the same time. He has had it for 10+ years and is in stage three. He had sheltered himself for the duration of his adult life far from family but recently could not do so because of how far he has progressed. He is still able to walk though it is definitely hard to do so. His cognitive ability is impaired and he is prone to isolating behaviors, agitation, apathy and some aggressive behavior. In the short period of time that he has been living with us (my husband and me and our 2year old son) there has been noticeable progression. I am worried that soon he will require much more care than I can give him.
This disease is so rare that finding a care facility that not only would consider taking him but also knows how to care for patients with HD is a daunting task. I’m really concerned for him but also for everyone else in our family due to the symptoms and knowing there is nothing that will slow the progression. This disease is so multifaceted and there is so little support in our area so even though I have family support I’m overwhelmed. I’m trying my best to put on a brave face but there are times I’m scared for my son, who’s so young and can “sneak up” close behind. I don’t want to think about if my brother-in-laws aggression could be directed at my son but as a mother my mind races, perhaps over analyzing but I do feel that it is my job to be hyper vigilant of my son’s whereabouts at all times. When I am trying to do activities with my son it truly seems like my brother-in-law gets upset my attention is on my son as he will have a list of demands that he wants done “now”.
He tends to be extremely demanding throughout the day but it is absolutely crazy extreme when my attention is one someone else. Curiously he will not act like that when my husband is home so that makes it seem as if he knows it’s wrong. I have not allowed myself to be a pushover and have asserted my feelings every time this behavior happens. (Because really I do not have to pour your coffee out of your thermos wash said thermos and put the coffee back in. All dishes get done everyday and yes your thermos was washed) So that’s my life right now, stay at home mom of a 2 year old and caring for my brother-in-law who’s on the decline and so far no facility will take on his case due to the nature of his disease as well as his age when the time comes. Maybe someone here has some experience with cognitive disorders in adults while a small child is in the home as well? I am also just hoping for some pointers as to how to navigate with an individual who’s cognitive reasoning center is failing.