What gives? Suddenly, your loved one with Huntington’s disease is making no sense at all; his or her behavior is totally off the wall. What in the world is going on? When it comes to irrational thought, and irrational behaviors, it’s important to note that rational thought includes logic and reasoning. When the brain is impacted by Huntington’s disease, there is often a lack of reasoning or logic. This is because of damage to the brain in the frontal lobe. As brain cells die, logic and rational thought are interrupted, confused, or even absent.
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If the thoughts and behaviors of the person with Huntington’s disease aren’t based on logic or reasoning, then what are they based on? The answer is need and an extreme anxiety that is overwhelming to the person with HD. Each person has many needs throughout a given day. Most of the time, we can meet those needs on our own, with little thought. This isn’t the case with Huntington’s disease. When HD is involved, the ability to act, process, sequence, and come to a logical conclusion doesn’t happen the way it does when HD is not present.
Although it can be very frustrating for loved ones and caregivers to understand and have patience with irrational thoughts and behaviors, the truth is this is a time for understanding and compassion. Remember that the thoughts in the mind of a person who has HD may demand the fulfillment of a need that doesn’t even make sense to you at the time. To that person, though, it is a pressing need that must be met.
Yes, it’s true that a person with HD can respond very rationally at times. That makes things even more confusing for those around them. It could be easy to think that sporadic irrational thought or behavior is on purpose. It isn’t.
What is a person to do? One thing that doesn’t work with irrational thought and behaviors is reasoning with the person. That person can’t be rational or logical at that time. Don’t even expect it. You might as well ask them to spread their wings and fly! The capacity to do so just isn’t there. Even worse, trying to use logic or trying to reason with a person in this state will probably escalate the situation and could lead to aggression or violence. Just don’t do it.
In addition to providing reassurance, love, and support to your loved one with Huntington’s disease, the following techniques may be helpful when interacting with someone who is experiencing irrational thought patterns or who is in an HD “episode.”
Distractions
Distraction #1 – The Switch – Sometimes it is much easier to distract a person who is behaving irrationally. Assisting that person to switch his or her thoughts can be helpful. To do this, present something to the person that will catch his/her attention and require some type of response or interaction. Offering a favorite food, perhaps, or shifting the conversation to something the person really enjoys and has an interest in. Sometimes, handing the person an unexpected object📷 that really catches his or her attention can help. Whatever safe and kind distraction you can come up with that fits the person, and the current need that he or she has, is an option. The more extreme the distraction, the faster it will catch the person’s attention. Again, we are speaking of safe, and kind, options. Something that is mean may seem to work, but it isn’t appropriate to use a negative behavior to “re-frame” another negative behavior. Doing something negative or mean will only backfire anyway. Any type of abuse is unacceptable. Treat your loved one with Huntington’s disease with kindness, love, compassion, and understanding. Your loved one truly isn’t trying to be difficult and certainly didn’t ask to have Huntington’s Disease. Be compassionate.
Distraction #2 -The “Oh No!” Shocker – In an extreme situation, the “Oh No!” technique offers a quick redirection of thought, by presenting a type of shock or emergency. This, of course. isn’t really a serious emergency that you have created, but is framed in a way to create surprise and urgency. Perseveration (getting stuck on a repetitive thought or need) can be a real challenge with HD, so it may take some very consistent distraction to make a shift from irrational thought patterns to something else. Sometimes, the perseveration is so severe that an average distraction won’t work. Something a little bit shocking and unexpected can redirect the mind very quickly. This is helpful when things are more extreme, and the person is getting aggressive or violent. Even a loud, unexpected sound can stop behavior in its tracks. Perhaps “accidentally” turning on music loudly, or banging a cupboard extra loud, blowing a whistle, or making some other loud sound can do the trick. It’s important to immediately follow the sound with another distraction. The idea is to take the person’s mind off the thought pattern he or she is “stuck” in, and to redirect the person to something else. If this technique is used, use it only rarely, or you will dilute its effectiveness. Misuse of this technique can aggravate aggression, so use it wisely, and with common sense.
Avoidance
Avoidance #1- The Subject Changer – If the subject or experience at hand is causing the irrational behavior to escalate, it’s important to change the subject, scenery, or other focus as quickly as possible to avoid continuing the negative escalation. It is possible to catch the irrational thought patterns or actions early. By acting quickly, trouble can be avoided. A soft reply, directed at something completely different (changing the subject), along with more distracting replies to follow, can sometimes avoid an escalation of irrational behavior. Sometimes, quickly removing your loved one from a situation that is creating anxiety is the best option. Take your loved one to a quiet area, and help him/her to calm down. Reassure your loved one. Often, this is what is needed. The point is to find a way to avoid the irrational behavior by using this technique.
Avoidance #2 – Remove Yourself – Sometimes the best thing you can do is to remove yourself from the situation. That may mean going into another room. If needed, use a locked door. At times, and if it’s safe for your loved one with HD, you may need to leave the house for a short time. Although you may need to avoid the situation, abandonment or neglect isn’t the answer. Make sure you aren’t leaving a vulnerable person unattended. Speaking of safety, in no way should you allow yourself to be abused in any way. Your loved one with HD may say terrible things when he or she is in an episode, and may also become aggressive or violent physically. It isn’t OK for you or for them to be abused emotionally, mentally, or physically. If you are not safe, get to safety and call for help. It is important to stop any abusive cycles before they begin. There are techniques for dealing with verbal abuse. Those will be addressed in a future article. If at all possible, simply walk away, without any response. Or if you must, say, “What you are saying to me isn’t OK. I’m going to leave until you are calm, and speaking to me appropriately again.” Remember, don’t rationalize, don’t get caught up in arguing, or talking about it right then. Just walk away.
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Avoidance #3 – Remove Them – It may be necessary for the person who is experiencing irrational behavior to physically change his or her environment. If caught early, this may mean taking a walk, exercising, listening soothing music, or similar ways to remove your loved one from the situation. If your loved one is wheelchair bound, consider taking him/her on a walk outside. We all get sick of four walls and need to get out. If your loved one can exercise, see if he or she can do that. That may be difficult when your loved one is extremely irrational; however, if you can get the exercise started early, it can help relieve the anxiety and confusion your loved one is feeling. In extreme cases, you may need help from others to remove your loved one for a period of time, either to take him/her outside, or in the extreme, for medical care until your loved one is calm and stabilized again. If you need medical help and intervention, call for it. Sometimes it takes a stay in the hospital to get your loved one stabilized again. Although that is more of a rare situation, it does happen, and if it does, be strong enough to do what needs to be done. You are the protector and caregiver to your loved one with Huntington’s disease. Our loved ones can’t do these things for themselves, and they rely on you to do what is in their best interest and well-being. Medications help to manage these types of symptoms, and it may take a hospital stay to get the right medications found and going.
Calming
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Calming #1 – Music – As mentioned before, soothing music can help with anxiety, and often, the high levels of anxiety experienced by a person with Huntington’s disease contributes to the irrational thoughts and behaviors. Nature sounds are also a good alternative. Music can calm a person, and can actually tap into someone’s mental brain patterns. If possible, dancing with the music can also help to relieve anxiety and has been shown to actually benefit the brain. Or if movement limitations don’t allow for dance, try to add some type of fun to the music. Which brings us to #2.
Calming #2 – Laughter – Humor is a must when it comes to dealing with Huntington’s disease, and when the irrational hits, it can save the day. Try to find the humor to laugh “with” your loved one, and to get him/her also laughing and being silly or humorous. Laughter releases wonderful things in our brains and can dissipate anxiety very quickly. Don’t be afraid to do something really silly and unexpected if it will get your loved one laughing.
Calming #3 – Relaxation – We all love a warm shower or bath, or to feel comfy and cozy in some form or another. Some have found that essential oils can help to calm, as can the use of melatonin. Melatonin helps a person relax. That means reduced anxiety levels and a better result for both of you. Melatonin is often used to aid in sleep; however, a smaller dose can simply help a person to relax. Consult with your doctor before adding any substance, even a natural one such as melatonin, to what your loved one is taking. The right medications are a must. Help your loved one to get them and to take them as directed. In addition to these, a soft, snugly blanket may help; a weighted blanket may also help. Treat pain as quickly as possible. Check for room temperature as well. Although the person with HD may think he/she is hot, his/her skin may be cold, and that is subconsciously aggravating your loved one. He or she may also be hot and need to become cooler to relax. Work with your loved one on filling his/her needs.
Find the Need
Pain, hunger, being uncomfortable in some way, having an infection or other health problems can cause undue anxiety which contributes to irrational thought. The best way to deal with an unmet need is to fill the need. It sounds simple; the problem is that sometimes people with HD don’t even know what the need is themselves. And if they do, they may not be able to communicate or express the need. Using visual cards, charts with images, phone apps, or apps on a tablet or other device that uses pictures and other visual clues can offer another option for communication. This is especially helpful when the ability to speak is diminishing.
If the problem is perseveration that just won’t go away, they need your help to change the mental topic. Coping well is not easy for people with HD. They are overwhelmed, frightened, confused, and their brains are giving them grief. Assisting them to cope with whatever is going on is what they need from you.
It can be overwhelming to be a caregiver to someone with Huntington’s disease. It may seem like you are always doing the hard work. That is because you are. Your loved one can’t do it for him/herself. You can learn and use valuable techniques that can help you and your loved one to have a better quality of life each day.
About the Author
Debra E. Andrew lives in Utah, is happily married, has seven children, 23 grandchildren, and one soon-to-be great grandchild. Her love of health and wellness has led her to empower others in all eight areas of health and wellness in her daily life and businesses.
Debra is the creator of Business Hands, a non-profit serving those who are disabled and their caregivers; the founder of Power HC, PWR HC – Preventative Wellness Resource Health Community; a Huntington’s Disease Regional Advocate; and she has established several Facebook groups supporting those with Huntington’s disease, their caregivers, and families. She also has a blog, http://hdinsider.weebly.com, where you can find more of her articles.
Debra’s educational background includes Business Management, Marketing, and e-Commerce, and she holds a B.S. in Community Health and a minor in Community Health Education. She is also a Certified Brain Health Coach.
Debra’s husband, Allen, has Huntington’s disease, and Debra is his full-time caregiver. The Huntington’s disease incidence rate in Allen’s family is 80 percent.
The Huntington’s Post is made possible by grants from Teva Pharmaceutical and The Griffin Foundation.
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