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.
My sig other bestfriend died from HD. We will call him BC. BC died 10 yrs after being Dx.
You say Bil is in stage three. Is he having a hard time walking? Is he walking stiff and slow? When he talks is it normal or is he having a hard time getting his words out and saying what he means? Does he uses the wrong words when explaining something? Sorry about all the questions, I am trying to get a feel where he is at in stage three.
Here is the problem with having HD the person is fully aware of what is happening to themselves and they feel helpless. Does that make it ok for him to act like a jerk? No! I think Bil knows what he is doing or saying at times and can help himself and at other times not so much! Should you be aware where and what your child is doing? Yes! Someone with HD can have a fall at anytime and the worse part is they wake up one day and can no longer move their legs. Yes, it happens that quickly! One day they can say a few words and the next they can no longer speak. Most pts with HD do not live for 20 yrs. And if Bil is in stage three then he probably won't make it for another 10 yrs either. Sorry!
Most facilities are not setup nor trained in caring for HD pts.
So, here is the bad news you and hubby or someone in the family will have to care for Bil. Here is the good news for you and bad news for Bil, once the pt is declining the disease goes very fast. In other words, once the pt starts losing the ability to walk the speech starts to follow. This disease is mean and aggressive and it moves through the mind and body like a freight train. The aggressive behavior will not last. It is a short stage for most pts. Remember this disease is fast acting once it takes hold of the nervous system.
When a pt becomes bedridden and can no longer walk, talk, or move then the pt can linger for years. Not all pts do, but BC the guy I was telling you about stayed in that state for 4 yrs.
It wasn't right for anyone to withhold this kind of information from you or your hubby. But remember you have to do what you feel is right for all parties involved and what you can live with. I nor can anyone on here tell you what to do. I nor should anyone judge you for what you feel you need to do. So do not feel guilty at all. You have all rights to be worry about your son.
Just my 2 cents!
Couple of points, your inlaws lied to you to get you to agree, no guilt required. You were not given a chance to make a decision from a position of knowledge. That means all bets are off.
I would have my husband tell his brother that he stops trying to run you ragged and he either sees the doctors or he gets taken to the hospital and dropped off and he can figure it out.
I know that sounds harsh but you have a 2 year old at risk and your BIL doesn't get to have you pimping drugs for him, he goes to the doctor to get any and all drugs. Just imagine what would happen if you guys got busted buying prescription meds on the street. Yikes!
When someone needs help as your BIL does they need to do everything they can to help others help them and that means being honest, seeing doctors, showing appreciation by not being a demanding selfish pig. Anyone that shows jealousy when a child is recieving care and attention is a problem.
Get your husband to tell his family to make other arrangements and if they get ugly, knock em in the head with their lies. Sheesh did they seriously think that you wouldn't notice he has an aggressive attitude?
I know that your BIL can not help everything he does, but when behavior is modified around certain individuals, you know that he still has the ability to behave. He doesn't get to treat you poorly when husband is not home and then be a quite little lamb. Sorry, you have nothing to feel guilty about.
Are you familiar with this group?
It sounds like your BIL has some of the fairly common psychological problems associated with this dreadful disease. Are his care team aware of his irrationality and aggression? Meds may be needed to tamper down those problems.
I'm hoping someone in this group has some experience!