I recently re-joined this forum - don't know why I stopped following it. I've enjoyed reading the messages from the members the better part of today. And I find great comfort & support from everyone's experiences.

My husband tested HD+ in 2007 with a CAG = 44 (father died at 78 yr old w/ CAG of 41 the year prior to my husband.) He has three siblings - one who died young who most likely had HD and two who've tested negative. We have two children - 21 & 18. Over the last year or so, my husband has had an increase in his very angry/aggressive outbursts - they've escalated to people in public with whom he doesn't know (or doesn't know well). He gets very inappropriate - language, cursing - and his involuntary movements get severe. I've been bruised by him grabbing me or pushing me out of the way to get at someone. I've learned to not argue with him when he has an outburst - but the last two (over the last 3 weeks) were completely a result of a knee-jerk reaction to a missed appointment & another over a disagreement with a neighbor - literally barging into his house, unprovoked and with great anger - out of the blue. A year ago, he knocked someone down in a rage.

The police have been called on him twice. He is taking many meds to try to control his perseverence/anger issues as well as his OCD behaviors. (His doctor just upped one of his meds today.) He is still driving, but he says he's giving up his license very soon. And I have confidence that he will. He has also had some issues with spending money (larger sums) without my knowing until it's "done". I've also seen some concerns with his fine motor abilities. I work full-time and worry about him being at home alone - not just because of possible choking (he has developed a bad habit of sucking in his food to try to keep from dropping it off a fork) but also because of him being unsupervised (do I need to worry??)

I've been researching assisted living/home care. I'm not sure how to proceed (how to pay for it - he doesn't have long term care insurance). He is on SSDI and I might try to explore the possibility of using his 401K from his prior jobs - if that is even allowed. And is there a state-wide organization for which to contact for resources?

I'm just scared that he's going to hurt someone. I walk on eggshells most of the time - we don't have normal conversations b/c I never know if what I'm going to say will spark an outburst. I know what I'm describing is nothing "new" to most of you. I just don't know how to proceed. I do feel he is dangerous sometimes - we just don't know when anything scary will happen.

Thanks for "listening"! Any advice or suggestions are very much appreciated.

Sorry I don't have any advise on what to do just want to let you know that I will keep you and your family in my prayers.

If I were you I would first seek out advice from an 'elder' attorney who deals with seniors and medicare and who understands assets and how to do this the right way. Gather all of his papers and go and speak with a knowledgable person. Before you can decide what to do you must understand what is ahead.

You don't mention if your husband is on any medications. There are medications that would greatly control some of these issues.

Thank you for the attorney advice and the prayers. And I thought I had mentioned that he currently is on a group of meds. They are: sertraline, buspar, seroquel, clomipromine, & fish oil.

Danne,

Is your husband being seen at a COE? It would be wise to let the doctors know that his current medications are not working, ask them to make some adjustments in dosage or try something new. Sometimes meds need to be changed or tweaked as the disease progresses. Police calls and barging into others homes is not acceptable, nor is grabbing you until you are bruised.
It would also be a good time to suggest a driving assessment...if he is having rages it could be deadly on the road.
I encourage you to protect yourself, have a plan to get away at the first sign of violence.
It may be time to consider other living arrangements for him. Would he consider assisted living or NH?
You and the kids...well, even though they are not little kids, this affects them. And it affects you and your ability to earn a living. Consulting with Social Security might also be an option, maybe they could help you sort out who pays for what.
I'll be thinking about you, hang in there.

Take care,

Carla

Danne, I agree about getting the medications checked to see if something else could help him better with his outbursts, etc. With regard to nursing care, where we live, a nurse from public health had to come to our house to do an assessment on whether or not NH care was appropriate. It was more physical-type needs, dressing, bathing, toileting, eating, etc., daily living activities that they looked at. I hope you find some help and also have your husband see the doctor to see if there are different meds he can try to help control his behaviors, etc. Good luck and you're definitely in my prayers!
Michelle

Danne,
I've been in the same situation. You can't live your life walking on egg shells. I did and it almost ended with my husband burning down the house while the kids and I slept.
At the time my husband was on Seroquel too so I'm not sure if the drug could make the outbursts worse in some phd's. Our situation got so bad that police & EMS were called and he was transfered to the nearest psych unit while the Dr.'s changed his medication. They did take him off Seroquel and replaced it with Haladol. I know Haladol is not preferred for phd's but it was our only choice left to control his rages. From the hospital he was taken to a nursing home.
I felt awful putting him in a nursing home but it was the safest thing to do for him and for myself and the kids. I put up with so much the last 2 years he was home. I was punched in the face, kicked, hit, threatened, almost lit on fire numerous times, the neighbors were cussed at, the mailman was chased with a bat, I could go on and on! All while my young children watched.
I kept thinking the anger phase would pass but it just never did. He's been in the nursing home for 9 months now and it's the best thing we could have done for him. He's calm and doesn't give the nurses any problems about taking his medication or eating. Depression is still a huge issue for him so he has to be supervised 24/7. We can now go visit and enjoy those visits. When the kids get too wound up we can leave and give him his quiet time.
The kids aren't afraid of him anymore and after 9 months of therapy they've done a great job dealing with all the violence they witnessed.
It's always hard to see the whole picture while your right in the middle of the stressful situation. Sometimes it isn't until you step back that you realize just how bad things have gotten. I made 2 years of excuses for my phd's violence, always excusing it because of the hd. Consider your safety and that of your neighbors and, heaven forbid, other people on the road.

I totally agree with Indigo. My kids and I also went through some of the same things. I also had no choice but to have my husband placed in a nursing home. It has been the right choice for everyone. My husband was also on seroquel and taken off and put on haldol. Seems to be working much better. Please don't wait for something bad to Happen. At the first sign of violence call 911 and explain the circumstances. He should be hospitalized to have his meds adjusted and possibly placed in a nursing home.

You all have given me so much to think about. Thank you so much for your advice.

Part of our problem is that to most people he seems "OK" - and his family (mom, siblings) I don't think would support me in entertaining the idea of placing him somewhere. In fact, he has this plan that he will be "staying" with his mother (if this is full-time or during the day(s) or a mixture, I don't know, but he's tied this in to giving up driving.)

He doesn't have daily rages. Just when something upsets him - which are totally unpredictable at times. And he has agreed to stop driving (in 3 weeks - don't know why he won't let it be now.) I plan to take away his keys and hide our spare key, so when I am at work, he cannot have access to it. He does get aggitated easily and flustered/antsy frequently (almost daily).

I recently spoke to his COE doctor and she upped his clomipromine to 50 mg/day (vs 25). He's already on 200 mg seroquel & another 100 mg separate time of day; 150 mg sertraline, (I can't remember??)mg Buspar, (& fish oil, daily vitamin and drug trial of CoQ10).

While his daily living skills are getting worse, they're doubtfully not "bad enough" to qualify for any NH care options. I hate to sound so blasted negative, but sometimes I just wish it would go away. And I certainly hope this phase of HD ends soon - but what does that mean??

And I agree that our kids don't need to see his outbursts. It's done irreperable dammage to his relationship with our daughter - who will be heading to college soon. Our son has special needs (21 yr) - and while his father has outbursts, he's incredibly forgiving of his inappropriate behavior. (It bothers him and it definitely scares our son, though.) My family feels I should consider not being with my husband any longer, because he's so unpredictable and vulgar/mean/dangerous. I've had friends ask me why I haven't left him. It's hard to remember the "old" person that he was when he is so difficult now. I cannot talk to him about anything - he either ignores me (because he's watching television) or gets upset with me and what I say. We usually only speak about schedules, what's going on for the day, etc. We rarely have an in depth discussion (even on my work day), as he can interpret it as something that can have an opposite opinion and then he fixates on a misinterpretation and gets aggitated (at best).

Most of the families I know with HD where we live still have their family member with HD at home with them. I feel terribly guilty for even researching having him placed somewhere. I am seeing a psychologist and have been seeing her for around 4 years. She's very helpful and is assisting me thru this process. But there are some things she can mention, but not necessarily make a decision about (obviously). There just seems to be so much to consider - and I work full-time - and tend to procrastinate researching this type of stuff - it's hard to look deeper because it's such an uncomfortable thing to do.

I know you all have experienced the same issues or are currently experiencing the same concerns. I appreciate you taking the time out to respond. Thank you.

HD manifest differently in different persons. In some it has very little psychatric effects in others there can be very violent behavior.
I wil say that placement can be very good because of the consistancy of schedules and socialization. If you wait too long the adjustment to placement can be more difficult. There is no set answer for everyone with HD or one which is better than another. And don't listen to anyone or anything except your own heart. Deep down inside you will know what is best for all.

Thank you, Bridie. You're absolutely right.

Welcome back. I'm glad you are here. NH placement is a difficult decision. With my brother, the transition from home care to NH was made when his outbursts were physically affecting my mother, who was his caregiver. His medical doctor, the HD physician in our area, had him hospitalized, for a change of medication, and he was transitioned from the hospital to a NH. He started in the NH as self- pay and was transitioned to Medicaid when his money ran out. He was divorced at the time and had few fiancial resources, only his pension. The NH had staff who assisted with the financial piece. This was 28 years ago and the process may be very different now.I have recentkly read that some people have had challenging experiences finding NH for their loved ones. However, recently, I needed information, in relationship to my sister, who is on limited income (not HD), and NH staff were very helpful, on the phone.

I am going a very similiar situation with my wife. While she appears "normal" at times, certain events will set off her anxiety. I have been researching assisted living since she has such strong phobias of hospital type of environments. At one point she said she would like to move into her own apartment, she now admits she doesn't want to leave her home. She refuses to take medications as well, though myself, her daugthers, and sister have asked her many times to try them to improve her quality of life. Her OCD behaviors consume much of her day now. One psychologist suggested it may be one of the things holding her together with the advancing affects of HD. Ironic. She is not hostile as in your husband's case at this point, and still does appreciates some normal outings outside of our home. I am trying to make the same decisions on at home care vs assisted living.

Our family just recently made the decision to have my sister placed.
I have been full-time caretaking for the past year and a half.
Things were going as well as could be expected, yes her HD were progressing but she was happy as a clam, we traveled, went out for lunches, had stuff going on. She was soooo easy going.
About four months ago everything changed, call it med change or progression, who knows but her personality changed.
She no longer wants to live with me and has become completely delusional, (wants to have another baby, thinks she can be on her own etc)
I never knew who would wake up, the sis who loved me or "the other". Sis showed up less and less.
When she packed her bags and wanted to hitch hike to town I had to do something. Thankfully it didn't turn violent.
It was decided that she needed to be evaluated so off to the psych ward, she was agreeable, since now she could prove that everything was okay. A spot at the NH became available locally, her health team and the family strongly recommended it, I feel like a heel.
I pick her up next week from the psych ward for placement.
My sis presents so well that I'm sure they were wondering just what the problem was. Agreeable with them but argumentative to me.
It took her being there close to 6 weeks for them to get it.
I know deep down that it's for the best but I still feel like I'm abandoning her. My own stuff.
I have to admit though since she left there is peace in our house, we're not always waiting for the other shoe to drop.
I feel a bit burned, (I know she can't help her gross lack of appreciation) and burned out from the experience.
I concur, I hate this disease, I hate this disease,I hate this disease.

Colleen, I am so sorry that all of this is going on. It is so difficult. I hope the transition goes well for your sister and all of your family. I also hope your nephew's twitches (mentioned in another thread) are benign.
Love,

Paula



Edited 1 time(s). Last edit at 08/07/2012 12:28PM by paulabhouck.

danne our lives are so so similar. my husband is refusing to go to a nursing home. the last time he was in hospital the attending doctor social worker and phy rehab drs wanted him to go to nh but he said no . back home he is living in lower level of house we redone and he hates it . i would have your husband agree to power of attorney so u are able to make theses decisions . i am looking into guardianship now but its so expensive . i even had a l;etter from his dr that he can no longer make major decisions and that doesnt help. he rrefuses in home care to i dont get it i always hit a brick wall its so hard to get help.my email adress is jendoc6262@verizon.net if you ever want to vent or ask questions you have to have someone that is in a similar situation and i am . your in my prayers

Thank you so very much for the support and advice.

Unfortunately, things have taken a turn for the worst. While visiting my father, my husband became aggitated over a request to change the channel on the TV... he blew and became extremely aggressive... charging at my dad's guest and then at my father. He shoved my father after hitting him. My dad is 78 yrs old. His glasses cut a small spot under his eye, I'm hoping it doesn't turn black. I tried to pull him back... I had no chance against his sub-human strength. He charged again, but I was abled to wrap my arms around him and keep him away. I was yelling for my father to call 911, but he didn't.

My husband left, then came back yelling at my dad and me again. I was able to keep him away and yelled at him to leave the house. After making sure he wasn't coming back in, I gathered his stuff, packed up the car, called his mom and asked her to meet me after I drove for 2 hrs (she 1.5 hrs) & to take him to her house.

I saw him coming back to the house and beat him to the garage. He started yelling at me. I told him i'd packed his stuff and taking him home. He started yelling more and said he was taking our son w/ special needs. I said NO. He tried to go back into the house, but I was able to keep him away. And told him to get into the car. And he did.

For the first 1/2 hr I was cursed at, berated, belittled... I was wondering if I should call 911 and not risk the drive.

I am sick to my stomach. I'm exhausted. I'm back with my kids, dad and sister now, but have to go home tomorrow. He told me he was going to be at our house. I told him I did not want him to be at our house for a few days. His mom is supposed to keep him away, but I have little faith in her going against him.

I've called our COE social worker. I don't know what to do. I left a message. My daughter (18 yr old, going to college) has said she thinks we need to remove him from the house, placing him in a NH or hospital. Should I contact an attorney? I don't know how we're going to pay for this placement. I'm a school teacher. We are barely making ends meet right now, since he lost his job in 2006.

I will keep praying for guidance, support and strength. But I'm scared of him and what has happened and how angry he will be over not wanting him home.

I am so sorry danne! Your story brings back lots of memories. My husband chased me around the house, he wanted the key to his gun cabinet. I think that if he had been successful I may not be here today. Another time he was in our son's room with a knife. Thank God he was away at college. At the time the biggest mistake I made was not calling the police. There was No documentation as to his behaviors. My biggest problem is that he was able to fool a lot of people. He ended up having a reaction to a medication which allowed me to call an ambulance and have him taken to the hospital. It didn't take long for them to figure out that he needed nursing home care. I know The whole concept is very scary, but getting him placed is the best thing. I was able to get Medicaid for my husband which pays for the NH. Just so you know, Med changes don't always work. We tried for over a year to no avail. If he does end up in the hospital, you can refuse to let him come home. The nursing home spent many months telling me that he didn't need to be there and tried to make me take him home. I know my rights and refused to bring him home. If you have any questions feel free to send me a pm.

Danne, as hard as it seems you must begin to document this events. I would visit the police station first and explain HD to the station, just incase there is another episode. Reason being, you don't want him placed in a jail but sent to a psyc ward. Have a letter from a doctor explaining his 'medical' condition nearby at all times.
Because of the nature of the disease the explosions can come and go and by the time he gets to some help he could be calm. It takes seeing an episode for people to understand. Good Luck