Finding a New Normal
By Sharon McClellan Thomason
“December 15th will be two years since we lost Cory,” says Stacey Sargent, who lost her son to JHD when he was 21. “Every holiday and special occasion feels incomplete; however, Thanksgiving and Christmas are especially hard. I feel anxious this time of year, trying to remain strong for everyone else in the family, when all I want to do is hide under the covers and cry. It’s exhausting, actually. I go somewhere and see Christmas lights or decor, gifts that I would have bought him, and my heart breaks all over again.”
As Stacey so poignantly puts it, the holidays can be an especially challenging time for people who are grieving the loss of a loved one. The holidays can also be daunting for those who are still living with Huntington’s and Juvenile Huntington’s disease. Whether it’s anxiety over being around a lot of people, swallowing and choking issues, having a loved one in a care home, dealing with irrational behavior or aggression, or just plain missing someone, holidays can be anything but jolly for people with HD/JHD and their care partners.
So what do you do with these feelings? How do you cope? Can you do more than just “get through” the holidays? The key to surviving the holidays lies in finding a new “normal.”
Stacey says that since Cory passed, “A few close friends give me angels for Christmas, and the fact that others think of him gives me such joy. At our annual family Christmas party, something always happens that makes us all think of Cory, and that, too, brings me joy, though I usually ride home crying at the heartache of missing him so much. Missing him doesn’t getting any easier. I think of him daily; this time of year, it’s just harder to hold back the tears. My husband asks me every Mother’s Day, birthday, anniversary, Christmas for gift ideas . . . the one thing I want, my son, he can’t buy or make or give me in any way. We place something of his under the tree, a pillow that he didn’t get to open or see two years ago. We make donations in his memory. We (Terry and I) release a balloon on his birthday, Angel Day, and Christmas. These things help a small bit, and my faith. I know he is celebrating in Heaven, and try to imagine the party there……”
Others try to carry on traditions started by the loved ones they have lost.
Katrina Hamel, who lost her mother to Huntington’s five years ago, says, “Thanksgiving and Christmas remind me so much of my mom and her holiday spirit. She dressed up, she decorated from top to bottom, she always invited everyone over and always cooked a feast, for as long as she could. This year, I will channel her. I have invited family and friends, I will cook, I may dress up, but most definitely, I will decorate! I choose to give the best of myself to others because it makes me happy!”
Holidays can be hard not just for caregivers but for those who have Huntington’s, too.
“I find that Christmas is the best and worst part of the year for me,” says Cameron Wedge Howard. “I absolutely love the holiday decorations, watching my kids open stockings and presents . . . there’s no better feeling. But at the same time, we’re busy with extended family, and that’s overwhelming. Also, my impulse control is horrible, so I lose myself in buying presents. I’m not fond of stores, so I pretty much shop online. It makes it easy to go overboard.”
Dealing with all the emotions, the excited chaos, and grief can mean it’s time to find a new “normal.” For someone who is struggling with impulse control, that may be as simple as handing over the credit and debit cards to a trusted family member so that spending doesn’t get out of control. Another possibility is to provide the loved one with a pre-paid card that limits what the person with HD can spend.
Since anxiety is such a huge part of Huntington’s disease, anticipating and avoiding the things that cause anxiety can go a long way toward making happier holidays for everyone. This, too, can be part of creating a new “normal.”
“Planning to serve the meal at the regularly scheduled time may be helpful,” says Ginnievive Patch, who has a husband and two sons with HD, “and minimize extra noises (no TV or music), since family is noisy.”
Limiting holiday outings and limiting the number of people sharing holiday meals (immediate family vs. extended family) can also help to ease anxiety. For the caregiver, allowing others to help prepare the holiday meals, ordering food from a restaurant, or even going out to eat at a restaurant are all possible alternatives to wearing yourself out by trying to juggle cooking and caregiving. Again, finding a new “normal,” one with new traditions that can provide everyone with the most enjoyable, stress-free holiday possible, is important.
If your loved one is in a care home, you might consider taking the holiday to the person rather than bringing him/her home. Nursing homes and assisted living facilities are usually willing to let the family have the dining hall or a conference room for a celebration. I can remember when my daddy (non-HD) was in the hospital after suffering a stroke. We took a small tree, presents, and our traditional holiday meal to the hospital and had Christmas there.
Depending on the temperament and care needs of your loved one, you may be able to bring him/her home for the day. When my husband was in a nursing home, a family member would bring him to his mother’s house for the holiday, and then one of us would take him back.
Jacki Harrison, who lost her husband, Ken, two years ago, says, “I was a married widow for ten years, so he was gone way before he left this earth. After a while, it was difficult him going to our friends’ anymore for Thanksgiving. He would sneeze at the Thanksgiving table, and the saliva would reach people’s faces. He would growl, groan; he would need to go to the bathroom and needed help doing so. He would try to talk, and people would get impatient, although [they would] be polite. This was the point we realized it was better for him to stay home. He was much more comfortable being at home, even alone for one or two hours, and then in later years with [his sitter]. The first couple of years, I felt bad for him, but I understood how much better it was for him to be at home where he was comfortable. Also, even though I felt bad, it was much easier on me, too.”
Jacki says that she and her children go to visit Kenny at the cemetery and say prayers during Thanksgiving. Her daughter talks privately to Ken, and she talks to him, telling him her heart. Their son reads prayers from the Jewish prayer book. This has become their new “normal.”
Kevin Jess, whose wife is in a nursing home in end stages, says that as Jehovah’s Witnesses, he and his family do not celebrate the holidays, however, “My wife, Sheila, always celebrated it. In her current condition, it is not possible for her to do things such as gift shopping or baking, etc. She also prided herself on an incredibly large collection of village pieces that took up an entire room. She enjoyed the smell of turkey roasting and pumpkin pies baking, and yes, she enjoyed the music which drove my son and me crazy. However, since I also love turkey and pumpkin pie, as well as giving and receiving of gifts, I usually gave gifts at other times of the year, when I could afford to do so, and when it wasn’t obligatory. I also do cook a turkey and all ‘the fixin’s’ once a month. She always thinks it’s Christmas, and during the holidays, I make her a sock to rummage through, and I turn on her holiday music that she loved as it stirs memories that she cherished.”
Preparing a holiday meal that is both palatable and easy to swallow for those with dysphagia (swallowing disorder), can require some real creativity to find a new “normal.” In the Nov. 14 issue of Today’s Caregiver e-Newsletter, Bobbi Carducci shares the following recipe for “A Dysphagia Thanksgiving”—her creation for her father-in-law who wanted “real” food:
Turkey – I tried pureeing both dark and white meat turkey and found it too grainy so I used a well-known brand of junior baby food and pureed it further to remove all lumps.
1 cup homemade stuffing – Place in food processor with 2 tablespoons of homemade gravy. Puree until smooth, making sure all the lumps are removed. (Add gravy one teaspoon at a time as needed.)
½ cup mashed potatoes – mash or puree to remove all lumps. Add gravy to the potatoes for flavor.
½ cup creamed spinach – puree until very smooth
For dessert – remove crust from one slice of pumpkin pie, top with whipped cream.
The measure of the meal’s success was her father-in-law’s comment that, “This is just like my wife used to make.” (https://caregiver.com/articles/thanksgiving_w_dysphagia/?utm_source=Caregiver+Newsletter&utm_campaign=844894ef8d-Caregiver_Newsletter_10_10_17&utm_medium=email&utm_term=0_8c5d5e6a5e-844894ef8d-94190545&mc_cid=844894ef8d&mc_eid=ce0f1754d1)
Thanksgiving this year was an opportunity for me to practice finding my new “normal.” My son suffers from extreme, isolating anxiety and did not want to be with anyone on Thanksgiving; he emphasized, though, that he wanted me to go and be with people I love and have a good time, that it wasn’t going to bother him to be alone and miss all the festivities. I had to fight back a lot of guilt in order to do this, but since plans had been made a month before my son decided he couldn’t go, I went ahead and joined family and friends. Was it hard knowing that Randy was home alone while I was off having fun? Yes. Was he happier not having to leave his comfort zone to socialize with people? Yes. Would he have enjoyed Thanksgiving if I’d prepared dinner at our house and invited people over? No. This goes against everything I’ve always believed about celebrating holidays, but this is our new “normal.”
I suspect I’ll get to try it out again at Christmas.
Tune in to “Help 4 HD Live!” on Wednesday, Dec. 6, at 4 p.m. Eastern/1 p.m. Pacific, to hear Katie Jackson’s interview with Dr. Bonnie Hennig-Trestman, a clinical therapist providing teletherapy.
The Huntington’s Post is made possible by grants from Teva Pharmaceuticals and the Griffin Foundation.
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Dealing With Irrational Behavior
Dealing With Irrational Behavior
Tools and Skills for Dealing With Irrational Thoughts and Behaviors in Huntington’s Disease
By Debra E. Andrew
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.
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.”
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 #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.
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 #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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