My husband is 41 and has HD with cag of 48 I believe. I have been his caregiver up until Apr 24th when he went into hospital. He can walk, talk, eat (soft foods mainly) and use restroom but has accidents occasionally. He has lots of mobility issues with lots of falls and recently (past couple months) has gotten new cut/bruise daily from too many falls. Cuts on head/legs/arms/fingers/etc. He called 911 on Apr 24th saying his ankle was broken but it wasn't. EMS saw his movements & extreme anxiety (unfamiliar with HD) and took him to emergency room to give him a sedative to calm him down.

The major problem I've had over the past few months is he's become increasingly aggressive, agitated, and irritable. At home he was on citalopram hydrobromide & olanzapine but they have him in ICU and he is on Ativan and Haldol. When he first went into hospital on 4/24 they kept him in ICU for a week saying they couldn't admit him cause he didn't exhibit symptoms for admission. Well after a week in the ER he developed a fever and they admitted him into the hospital at that time. Well just this weekend they said he had MRSA in his bloodstream and also in one of the wounds in his skin. So he's now on antibiotics. All this time while he was in the ER and then in a hospital room (about 11 days), he had a sitter with him feeding him and helping him when he needed to urinate. Then late last night he got angry/upset and they sent him to ICU.

He has been yelling/screaming, pulling off seizure pads on bed, the iv lines, the heart monitor pads that attach to the skin, and anything else he can get too. I can't seem to get him to calm down and sometimes I feel I agitate him further. The staff at the hospital is totally unfamiliar with HD and the Dr. talked to me today and send he is late stage HD and I should consider hospice care.

My question is has anyone dealt with an extremely aggressive/agitated/disoriented PHD? If so, is this a potential medication management problem where his doseage may need to be uped or reduced or is this a sign of END STAGE HD? He's walking, talking, eating, and can fight men twice his size. It took 2 EMS workers and 2 police officers to physically restrain him and strap him into the stretcher. I feel like if his mood could be stabilized, then he could enjoy more of his life. Please advise. The hospital wants me to give them my decision of whether to put a PIC line in and continue care, or either pursue hospice care within 24 hours. Just a few weeks ago he went to church with me & our kids for Easter and we had a great day and now here I am contemplating hospice... Please weigh in with your thoughts...

Sorry meant to say they kept him in the ER for a week not ICU. He's only been in ICU for 24 hours now

I am not a doctor so this is just my opinion as a former caregiver and science writer. It doesn't sound like end stage HD and even if it was, he still needs to be properly medicated. There is no reason he should have to feel such anxiety and anger. He needs a medication change. Haldol is contraindicted for diseases like HD and Parkinson's according to the pharmaceutical guides. If he was doing well on olanzapine, the dosage may just need to be upped. The combination of an atypical neuroleptic like olanzapine, coupled with an SSRI like citalopram is probably the most common medication combination for HD. Some HD patients have done well with the addition of Abilify but others have found that it doesn't help. The more severe anger outbursts in the hospital could be related to his desire to come home and an inability to communicate his needs to the hospital staff and sometimes an infection can cause temporary behavioral problems. But since his anger was increasing before the hospital, it sounds like it's time to adjust the medication. His doctor can always consult with a Center of Excellence doctor; they are usually very willing to take calls from doctors who are less familiar with the disease. Finding the right medications and the right dosages can require some trial and error since patients differ.

As for Hospice, they can be very helpful so you may want to seriously consider having them come in and help since the doctor is willing to prescribe this service. I recommend talking to the hospice staff first though to make sure that they are in agreement with continuing to treat his psychiatric symptoms any other medical problem that might come up. We had hospice for my mother with multiple myeloma. We knew that treatments had not helped and it would eventually bring about her death but I wanted to make sure that if something else happened, say a UTI, that it would be treated. We wanted to make sure she was comfortable.

Thank you so much Marsha for posting. I am up at 2am praying to God to let me know what to do. This is so stressful because these people have only seen him in ICU for the past 36 hours or so now and they've already determined he needs hospice services. I'm afraid of putting him in hospice cause a couple years ago his nurse recommended I consider it and when I met with a hospice coordinator then, I was told he'd be taken off his Tetrabenazine. It is a very costly medication and has helped him tremendously, I feel, and I was told they'd pretty much reduce his medications and just keep him comfortable. I've internalized this to mean he'd be off his HD medication and pretty much sleeping all the time perhaps on a sedative. That is my biggest fear. I feel like we may come to that but now I just in my heart don't feel like he needs to be sedated to just keep him calm. my impression has been of hospice that he'll be in a hospice home and mainly sedated when we come visit and that isn't how I want his life to go when I know he can walk, eat, and talk (although I'm probably the only one who can understand him). He can still enjoy meals with our family and at Easter we all went to church. I just haven't got the impression that hospice would treat the psychiatric problems at all. I feel as though keeping him comfortable would be thru some form of sedation and mainly immobile cause the goal of hospice is to transition to death peacefully.

I was told by ICU dr. that he is END STAGE and there is nothing more they can do for him. He's currently in ICU with his legs and arms strapped down to a hospital bed and they are saying this is no quality of life for him (which I agree) but he wasn't living like that for the first 11 days he was in the hospital and I can't accept that there is no medication mix that can help him. I have been told that they have done all they can do by placing him on the medications he's currently on and it's not working. I will grant them that he is highly combative and acting out horribly and it's tearing me apart to see him lie in a bed restrained as he is but I do think it's for his safety but my biggest problem is these people won't at least acknowledge that there could be a different medication mix that could work for him. I also asked about why he was taken off the olanzapine and the citalopram and I was told cause he's in ICU and so he is being given medication intraveniously and apparently those 2 medications can't be given that way. We've not even discussed upping a doseage cause it's pretty much been we've called in a neurologist and he says it's end stage HD and that's it. I am going to ask that they consult with someone for the Center of Excellence for HD though but not sure how well that will go over. I just feel like I have to advocate for him. I pray to God that today is a better day for all of us.

You are right not to accept that there is no medication combination that will help. That is absolutely ridiculous! It can take a year or more to get the right dosage and combination for an individual patient and needs change over time. And I still don't think he is end stage.

Is he still on the tetrabenazine? If so, that could be the problem. Both tetrabenazine and Haldol are dopamine blockers so he is getting a LOT of that. There is a black box warning on tetrabenazine because it can precipitate and worsen depression so if he has been deprived of his antidepressant, it would be no wonder he feels so bad. If his doctor won't consult with a Center of Excellence doctor, can you get another neurologist in who does have HD experience for a second opinion about meds?

If that Hospice has a different philosophy than you have, then you are right not to use them. There may be a different one in the area that would be more compatible.

I am not clear on what the doctor wants to do. Does he want you to bring him home?

I am so glad that Marsha has been able to reply to you.

I think I am reading that she feels the same that this is not end stage. the change of enviorment alone would trigger similar response with my wife and a change in medication would just farther complicate things

Is the Dr that prescribed his current medication available to inform the hospital of his condition and work with them to get him calm.

Is the infection getting better. If you can handle him in his current state, maybe it would be best to get him back home and adjust his meds

In my opinion, it appears that if they continue, they will force him into "end stage"



Edited 1 time(s). Last edit at 05/07/2015 11:07PM by JFB.

I agree with Marsha. Unfortunately, soo many healthcare providers do not know about or are unfamiliar with HD. He does not sound like end stage to me. I think there is medicine out there to help with the aggression and the infection. A PICC line is not a bad thing if it means fighting infection or a means of giving him medicine. I place them all the time, it isn't a bad thing. It's just a long term IV if needed. And a convinience for you if he needs outpatient treatment or labwork. Try to find a doctor who is familiar with HD who can help you navigate this difficult time. Ask for another opinion... I don't thing you're at the end. I know it feels so impossible sometimes...

Jen

Besides the immense cost of tetrabenazine, I found my husband was more aggressive when he was on this med. Dr took him off this med and prescribed Risperidon instead. It calmed him down and reduced his chorea dramatically. He's been on the same dose of Risperidon for the last 2 years and it worked well until recently I noticed his movements are starting to increase again. Since he can no longer work and he is not bothered by the chorea, we opted to keep the same dose for now.
I will say, however, that it took 5 years to finally get the right combination of cognitive & behavioral meds to control both his chorea and various psych symptoms. It was a hell of a ride, sheer madness at times, but finally we've established a routine that makes him happier, and I've learned how to respond to him without agitating him.

I agree with Marsha!! I'm hoping that his doctor will have neurology consult...hopefully someone who is familiar with HD or like mentioned in previous post, maybe they can call an HD center of excellence to consult. I know my dad's neurologist stated that she had not seen many patients with HD. I wish you the very best!