Follow
Share

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.

This question has been closed for answers. Ask a New Question.
Find Care & Housing

7 Answers

Most
Helpful Newest
First Oldest
First
I am sorry that your family is going through this. Your right this disease is so rare that there is not much research done on it. There is no Tx of the disease just the symptoms.

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!
Helpful Answer (0)
Report
A
amergin4 Aug 2019
So yes he definitely has a hard time walking. His chorea is pretty bad and his legs end up having a mind of their own. He tries for about a minute or two to get up out of a chair and often once he is on his feet has to catch his momentum on whatever is available sometimes resulting in a tumble. I assist him with getting up as often as I’m able to avoid him falling. He walks in a haphazard fashion. It is definitely slower as there are steps that are made to offset other muscle movements especially when it is his back or stomach muscles that fire off while he is walking. While he is in a standing position he has to catch himself often as well. When he tries to put his shoes on himself it can sometimes take upwards of 15 minutes. His speech is impaired. Sometimes I’ll have to ask him to repeat himself multiple times before I can get what he is trying to say. Yes he does often try to form a sentence and mixes up the words and even inserts words that aren’t pertinent, to where you have a hard time following him. He also will repeat the same word multiple times before continuing his sentence. Eating is a hard for him and I’m always worried he will choke but refuses purées, he won’t even eat apple sauce. His meals are cut for him in very small bites to help him.I agree that he is fully aware of most aspects of the ravages of this disease and I do believe it weighs extremely heavy on him. My MIL is aware that he will at some point need more care than I can provide. She knows how fast this disease can take you down. My BIL’s father was a healthy adult into martial arts and from the time he showed any symptoms to the time of his death was 5 years.
(0)
Report
See 1 more reply
Oh man, I feel for you.

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.
Helpful Answer (0)
Report
You have no reason to feel guilty. Your decision is sensible and it was very unfair and wrong to withhold the information about aggressive behavior. Your child would have to deal with being around an angry, unreliable adult and would feel endangered. You cannot expect a small and vulnerable child to understand what is going on. Anger, aggression, is NOT good for a child in his growing up years. Home should be a safe place. Stand firm - you are doing the right thing here.
Helpful Answer (0)
Report
I am glad that you are getting clarity about what to do. You have a lot of kindness in you. When you do find the right place, Your BIL just might have better care than you could give him at your home.
Helpful Answer (1)
Report
The disease runs in my ex-husband’s paternal family. His grandmother was kept in a family care home for years. She was completely bedridden for about 15 years. My ex FIL, his 2 brothers and sister had/have the disease. Ex FIL in a nursing home for about 4 years before he passed. The sister is still alive and living with her son. She has lost most cognitive functioning and in the last 6 mos. can no longer walk. Two male first cousins have been diagnosed in the last year. They are in their early 40’s. It is a devastating disease. ExFIL was very aggressive and angry.
Helpful Answer (1)
Report
A
amergin4 Aug 2019
My BIL’s father died from complications of the disease at age 35. His father only displayed symptoms for a short period of time it was apparently very rapid progression. My husband and my brother-in-law have different fathers so my husband and son are safe from its terrible grasp. I’m sorry that your family has had so much loss. My heart goes out to you and your family.
(0)
Report
I have no experience of this disease at all, but I am very worried about your choice to do in home care for this gentleman with a 2 year old. To be frank I wouldn't do it. As to placement, yes, it is an unusual disease, but placement should not be terribly different from others requiring memory care for dementia. When in fact you look at a Lewy's dementia versus an Alzheimer's dementia, the two are very different. But the outcome of course as deterioration goes on becomes more and more the same, and none of it good. You are trying to raise up a child. The sad truth is that this gentleman may physically live for all the years it takes you to raise your child. There is nothing to be done for him in so far as sparing him the ravages of this dreadful disease, but your own family can and should be spared. I am sorry. All the good intentions in the world doesn't change the fact you are giving up quality years your child deserves. This care will become more and more difficult. When you have to hospitalize this gentleman, and I suspect that will be sooner than later, I would tell the social worker on day one that he cannot return to your home as you cannot safely do this care any longer.
Helpful Answer (2)
Report
A
amergin4 Aug 2019
I am realizing just how difficult this is. My son HAS to come first. I was basically begged by my husbands family to let him into our home as “he has no where to go”. He was in a group home but was kicked out for aggressive behavior ( something I didn’t find out until a week ago and had I known I would’ve said no way no how). I’m also realizing that it is MY decision. I know that there will be drama regarding my “change of heart” but what choice do I have? Had I been told the REAL reason he was kicked out my choice would have been different. My husband really wants to help his brother but I know he will support me for asserting my feelings. Truthfully I will still help my BIL when he is in a facility because regardless of the aggressive behavior his mind cannot function as a healthy mind would. That was not “him” but I just can’t take a chance with my son. My son deserves his mama. Thank you for giving me your perspective as this helps me to come to terms with what I already know in my heart but what guilt is trying to dissuade me from voicing out loud.
(2)
Report
https://www.caregiver.org/huntington%E2%80%99s-disease

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!
Helpful Answer (0)
Report
A
amergin4 Aug 2019
So this is where this gets really wonky. When my husband picked him up he had several medications and took them at seemingly regular intervals so we didn’t think he needed assistance with taking his medications. Boy oh Boy were we wrong. While he was on his own he only rarely when to a doctor for his disease. When he ran out of those meds and asked us if we could “find” more we realized what he had been doing. At that point we were still getting him “on track” he had no paperwork ( no ID, no SSC, no Birth certificate and no healthcare card) we had to get all that and it took almost two weeks to gets all those. But To get back to the medications he had been taking.... long story short they were not prescribed to him. Not one! He has since been to a doctor who was honest and let us know he didn’t know really anything about the disease and gave us referrals to several specialists most are over an hour and a half away. So we have the referrals but my BIL doesn’t want to see them and doesn’t want to even see the doctor who gave us the referrals. My husband doesn’t want to pressure him but I believe it to be necessary. I feel like I’m so new to this I don’t even know what I don’t know.
(0)
Report
This question has been closed for answers. Ask a New Question.

Recent Questions


Popular Questions


Related Questions

Ask a Question
Subscribe to
Our Newsletter