A Personal Experience

Is there any real way to cope with behavioral problems? I guess it depends on you and your situation, as everyone's is different. Frank was a very nice, gentle soul who never had a bad word to say about anyone. He was always willing to help wherever and however he could. He was taken from his family at the age of 12 and was raised by an aunt and uncle with three daughters. It was my family and I that taught Frank what a family was like. He adored my parents and brothers.

Frank passed away on January 7, 2000 leaving behind two sons and myself. We were his caregivers in every way possible.

When Frank's behavior problems began I was scared to death, because it happened suddenly one afternoon. He was fine when I went to work, but by noon he was in a fine stew. Paranoia was first, and it was aimed at my mother who would never hurt anyone. Frank said she was going to turn him in to the sheriff if he drove his truck down on the highway. He was very serious about this, as he knew it was fact! My Mother lived 9 miles from us so I knew this wasn't going to happen in the first place. There was no talking him out of it so I did the next best thing. I told my Mother what was happening and what I was going to tell Frank to see if we could avoid disaster in my home. The next time Frank brought this up I told him I would take care of it and be right back to let him know what was going on. That was the first time I lied to him.

I came home and told Frank I had confronted my mother, which I didn't really do, but I had to make sure that he thought so. This continued. He would come up with something someone had supposedly done to him, and I would "confront" them and report back to Frank what was said. I went to these people and told them his HD was making him paranoid, and that he would imagine that people wanted what he had. Most of the time this was very hard to do, but they had to be forewarned that something might happen. Everyone was understanding and knew I was only looking out for both their welfare and Frank's as well. Afterward I would go home and tell Frank that I told these people to back off or I was going to the sheriff. It satisfied him to the point of calmness. My nerves were shot however!

Frank also got into the habit of talking to himself twenty-four hours a day. There were times when he would threaten to do others bodily harm, like he was going to shoot someone. I would look at him and say, "Haven't I taken care of you? Don't I go out and tell these people to back off? You know I will be here to see that you are taken care of and that no one will bother you." It got to the point that I had to go to most of the family and let them know what was going on just in case the law showed up on their doorstep.

I was so bewildered that I wasn't sure which way to go. All I knew was that these people had to be warned about the problem. If I had their understanding and help it would be easier for the boys and me.

Then the rages hit. Do you know what the rages are? Big fits or temper tantrums that scare you more than the monsters under your bed when you were a child. These rages can vary from throwing things, yelling, verbal abuse, simply not speaking, and physical abuse. I have seen it all in Frank. There were a lot of times I feared for my life and that of my youngest son.

The doctors could never regulate Frank's medicines in a way that would help the rages. The more they upped his Haldol the meaner he became, to the point where he hurt me for the first time. I knew to stay out of his reach but this time I was not fast enough. I got away from him somehow without hurting him. Frank hit me but had never threatened to shoot us. Nonetheless I took all firearms out of the house so that wouldn't be a worry.

One night (and it always happened at bedtime) his rage started and it was the worst one yet. That night I tried to ignore him and slept on the couch. He would go to bed, and because I was not in there he would come back to the front room and yell at me. I remember this was one time that nothing was going to work, so I prayed every second I could that Frank would calm down and I could sleep some. The medicines were not working at all! By the grace of God I made it to morning and got my youngest out of there and sent him to spend a few nights with his grandparents. This was a routine we got very familiar with! Frank, however, never remembered what happened after it was over.

I changed doctors and finally got some relief, but not much. It went from lasting days/weeks to just a few hours to a day or two. I went to a family doctor whom I had to teach about HD. Some doctors who are familiar with HD are not that great either. Been there done that! Just remember that not all doctors are alike--there are good ones and bad ones. You just have to hunt for the good ones most times!

At the last the rages and his care were more than I could deal with. I learned that when a rage started I should NOT go head to head with him. I would turn and walk away and he would cool down and forget that he was mad. I have had to meet him nose to nose on occasion, but always had a sick feeling afterwards. I wondered where did my Frank go? But even though his reasoning was gone something was still there. When he started acting up I would be sure to tell him that kind of behavior was not tolerated in this house, and I tried to reinforce it somehow. This is where each situation is different. You know your Phd better than anyone else, and which triggers might make it worse, or what may help.

If you get nothing out of this article please remember this: If your Phd gets out of control call 911 or law enforcement. Don't try to handle it all by yourself. I did and would recommend that no one else follow my footsteps. My sons agree with me, and I believe if Frank were himself, the person he was before HD, he would agree with me as well.

The best thing you can do as a caregiver is to go to local law enforcement and paramedics with information about HD before you have to call them. Then if they are called to a domestic dispute with a Phd they will understand that this is an unusual situation and handle it accordingly. I also told our 911 coordinator that Frank had HD so if there was a call it would come up on the screen. I also kept them advised of his medications.

No one can say do this or that and it works. You will have to find your best option and go from there. Talking to caregivers and others who have gone through or are going through this phase of HD will be your best support. Talk out your fears and it will help you to be able to decide what is best for you and your situation.

I wish you the best!

Suggestions by Convention HD Specialists

During the 2000 HDSA convention, a panel of HD specialists were asked what caregivers should do about aggressive or explosive behavior. Four types of responses were discussed:

1. Analyze the situation to find out what might be precipitating this that could be changed such as a problem in the environment or another medical problem that could be treated. [For an example from the HDAC message board, recently an alert caregiver at a nursing home realized that the combative behavior of an HD patient occurred only when he was placed in the sun. The patient was actually light sensitive and uncomfortable and could not communicate this.]
2. Look for non-drug solutions.
   1. Analyze and manipulate the environment to decrease the occurrence. For example, reduce noise and other distractions.
   2. Give the person your undivided attention and let them communicate. Be patient.
   3. Overlook and forgive irritability and unpleasant remarks.
   4. Use distraction and redirection when the person can't move on from something that they are upset about.
3. Pharmacological solutions may be necessary. Some of the possibilities to discuss with your doctor include olanzapine and SSRIs such as Paxil. (SSRI is a type of drug that acts as a Selective Serotonin Reuptake Inhibitor). Inderal is sometimes used with selected patients with a 'hair trigger' temper. A doctor who is familiar with the medications currently being used for HD symptoms can be a real help.
4. If the person becomes violent and is a threat to others or himself, call 911.