How do I deal with this?
How to cope...
We often hear that Huntington's disease is a family disease. There many be only one person who has the disease, but the entire family becomes affected and this includes the children and teens who are also struggling to understand what is happening. Like kids, teens need to have support and guidance throughout the process and stages of HD. For most teens it is hard enough being a teenager, especially in this day and age, but throw in HD and everything that comes with it, it can be even more so devastating to a youth struggling to understand what is now happening and how quickly life can change.
First finding out about Huntington's disease
Huntington's disease comes into people's lives at many different ages. Some people may find out about Huntington's disease at a very early age, while others may be coming to terms with the emergence of Huntington's disease in their family later in life (perhaps as a young adult). No matter what age this illness comes into your life, it can be difficult because when someone you love has Huntington's disease there tends to be lots of changes to cope with in your family.
Early stages and sudden changes
Many young people find out about Huntington's disease when a family member is diagnosed with the condition, usually when that person is in the early stages of the disease. This tends to bring with it various symptoms, some of which are more obvious than others. For instance, you might notice your family member dropping things more often, tripping up and generally being clumsy. These are as a result of the involuntary movements (the chorea) caused by Huntington's disease and it may mean your family member's balance could begin to become an issue.
There may be sudden behavioral changes with the person who has the disease, with people being affected by things such as depression, tiredness or temperamental outbursts. For a young person in the family, these sudden changes in their family member can be incredibly confusing. Sometimes it is hard to understand or remember that it is the disease affecting that person, and not the person themselves.
The person with Huntington's disease may also stop working or driving, and may struggle to look after themselves. The effect of that person suddenly not working or driving can have a huge impact on the rest of the family. Financially and socially it begins to restrict the family and make things difficult. You may find that you are unable to do the things you used to do with your affected family member and that the dynamics of the family begin to change.
Having an illness in the family can, at times, make you feel embarrassed or ashamed. With Huntington's disease in particular, the involuntary movements caused by the disease tend to be very noticeable. People with Huntington's disease can become very clumsy and this has a way of drawing attention from the general public, as they don't understand why that person is acting the way they are.
As a young person, you may find yourself in a situation where you feel embarrassed or even ashamed to be seen out with your family member in public. This can make you feel very upset (sometimes with yourself because you feel you shouldn't be embarrassed), but feeling this way is very common - many young people experience the same emotions.
One of the main reasons people get embarrassed when out in public with someone with Huntington's disease is because people tend stare at them. Having people staring is not uncommon either, almost everybody who has lived with a family member who has Huntington's disease will know what it feels like when members of the public stare.
People staring can cause a lot of anger, but it's important not to let that anger get the better of you. This can often be more difficult than it sounds. One option to consider is bringing more people - family or friends - along with you when you go out in public with the person who has Huntington's disease. They may be able to help you feel more relaxed and comfortable, and able to handle any issues that arise. If all else fails then using 'The Look of Doom' tactic is a useful way to let people know when they are being a little rude. Also, if you feel the person with Huntington's disease is getting upset because of people staring, you may decide that talking to the people who are staring and explaining the condition to them might help. However, if you don't feel talking to them would help then simply ignore them. Many people with Huntington's disease seem to develop this wonderful attitude of not caring who is staring at them, so they don't notice anything (it is usually the people accompanying them that notice and take offense).
If you are able to cary with you a Fast Fact's on HD pamphlet, this can be very helpful also. You could tell the person or people who are staring that your loved one suffers from Huntington's disease and hand them the Fast Fact's. It is human nature to stare at things that we do not understand, but turning a negative into a positive helps everyone in the situation. It also helps to spread more awareness to someone who might of otherwise never known about what HD is and help them become a little more compassionate towards other people and their feelings in future situations.
The involuntary movements people with Huntington's disease have not only draw people's attention, but make them wonder what is wrong. Unfortunately, because the awareness of Huntington's disease isn't great, one of the first thoughts that these involuntary movements provoke is that the person may be drunk.
This is a case of people assuming incorrectly, and let's be fair - how are they meant to know that the person has Huntington's disease? But that is not to say that when people make these comments to a young person, about their family member, that the young person is not hurt by those words - they are emotionally upsetting. Again, just like the staring issue, explaining the condition to people may help and don't lose your calm in these situations. Experiences like the ones above are why raising awareness of the disease is very important, so that people will understand the condition better.
Having Huntington's disease in the family (as you have seen) can cause great amounts of stress, and many young people speak of their homes turning into a very stressful environment. This usually is as a result of symptoms getting worse for the person in the family with Huntington's disease and the demands on the rest of the family becoming greater.
When the home becomes a place that stresses you out, then life can become difficult. You can feel like you have nowhere to turn to, nowhere to relax and get away from things. It can feel like the disease is constantly in your face and on your mind. As a result you may feel like wanting to get away from it all. You should not feel guilty about “wanting space” during this time. When there is so much stress in your life you naturally need an outlet to get your emotions out and relax. It is important that you seek support, and you should contact either us or your and ask what support is available to you locally through an HDSA Chapter or Affiliate, even a support group. It is also important that you look after yourself in these situations, and no matter what age you are, take steps to get rid of the stress in your life. Whether that means as a teenager you spend more time with friends or getting involved in after school or evening activities.
The person with Huntington's disease may get angry and lose their temper over things that seem unimportant to those that don't have the condition. This can cause lots of arguments in the family home which doesn't lead to a nice atmosphere for anyone. It also doesn't help that often people with Huntington's disease will not recognize a problem and refuse to discuss the issue. The best thing to do in these situations is not to argue back and perhaps go for a walk while everybody calms down. And keep reminding yourself that it is the Huntington's disease causing the person to act this way, and not the person themselves. However, if something is causing you a lot of frustration then talking can help, either with family, friends, or your local HDSA Chapter, Affiliate, or support group or NYA. Getting your frustration out and discussing things can be such a great relief mechanism - don't be afraid to bring up your concerns, there are plenty of people willing to listen and offer support.
In some cases, people with the Huntington's disease can become abusive to family members, either emotionally or physically. This is as a result of people with Huntington's disease experiencing the behavioral symptoms of the condition. In these situations you should always seek support from HDSA or the local authorities. It is always important to remember that it is Huntington's disease causing the person to act this way, and not the person themselves. But this in no way means that you should put up with abuse, whether the person has Huntington's disease or not it doesn't matter.
The impact of the disease is not only felt in the home environment. Many young people, as a result of being in a family with Huntington's disease, find it harder at school. Their results might fall, or they may start acting out in class and getting into trouble. Sometimes young people leave school altogether as they just can't cope with all the stress and changes in their lives. If you feel your education is being affected by Huntington's disease being in your family it is important you speak to your family and the school about this issue.
For young adults, careers can also be affected. A job and the increasing demands on you at home can become too much to handle at once. Having to perform caring tasks for your family member can end up becoming tiring work on top of your full-time job - one that can cause great stress too. It is important that you don't try to do too much and overload yourself. You can't help anyone if you don't take care of yourself first. Look after yourself and seek support when you need it. Your national Huntington's disease organisation should be able to offer you advice and support. Again, HDYO is here to help you so please contact us if you want to.
Having Huntington's disease in the family can also influence the decisions, especially young people make in their lives. Some young people may be caught in two minds: whether to go to or continue at university, for example, or take a new job in a different area. They have a family member at home with Huntington's disease and they feel torn between living their own life and looking after their family member. Having to make such decisions can be extremely difficult.
Looking after a person with Huntington's disease
Many young people help care for their family member in some manner at some stage in their lives. Some may provide care for their family member without even realising it. We tend to put ourselves into categories of child, parent, or at-risk or negative, or positve for HD. For many, these categories don't allow themselves to be open to interpretation. You may think I am a student, a child, and at-risk. But, you may also be a caregiver.
Other young people take on the responsibility of the caring role on a more permanent basis and provide regular care for their family member - doing all the duties that (perhaps) the family member used to do and making sure that they are looked after. This may also include looking after other family members, such as brothers or sisters and making sure they are cared for.
Trying to care for or help someone with Huntington's disease can sometimes be hard, because people with the condition may not want or see a need for support - this may be due to denial that they even have Huntington's disease or simply because they are proud and do not want to be looked after. If you have mutliple persons in your family who have either HD or JHD, you may find that their attitudes are different also when in comes to HD. One may want help and ask for it, while the other may refuse your help and become angry for you asking if they need assistance.
Eventually though, everyone with Huntington's disease gets to a stage where they need to be looked after. This can mean family members having to leave jobs to become full-time carers. The family home may need to be adapted to suit the needs of the person with the condition. Eventually, people with Huntington's disease may need to be moved into a care home for specialist care support.
Not all persons with Huntington's disease go into a care home. Some people remain in the family home for the duration of the illness. It depends on each family's situation. But if your family member does go into a care home then this, again, can be an emotionally difficult time for everybody involved. Visit the care home section for more on how care homes work and the impact on a young person's life.
Nursing/care homes can be especially scary when you are younger. Placing a loved one into a facility can be a heartbreaking experience. It is important to be educated on the facility you chose. You have become an expert on HD and may have helpful tips when it comes to how to care for this person. Providing educational materials from HDSA for staff persons whether they are a CNA, Nurse, or and Admin. It is important to ensuring the best care possible for a person with HD.
Some may find that the person with Huntington's disease gets to a stage where they find it either very difficult to communicate or can't communicate at all. This can make it very hard to interact with the person who has the condition and young people may find it difficult.
It is important to remember that, just because the person with Huntington's disease can't talk, it does not mean they can't hear you. If you speak to the person with the condition they will and do understand what you are saying to them. So keep on talking to your family member who has the disease and tell them all the latest stories from your life, so they can share in what you have been up to. Having a conversation where you are the only one talking can feel very odd, knowing what to say can be difficult. Try talking about things that you both share an interest in, or news that you think they would want to hear about. There are many things you could talk about, sometimes thinking beforehand about what you could talk about can help you plan ahead, so that you don't end up unable to think of anything to discuss.
Tell this person about school, your extracurricular activities, or your friendships. Even if you are having a difficult day, they want to hear about it. Huntington's disease may prevent them from giving you the adivce you might be seeking, but they are still your loved one and care deeply about you and what may be going on in your life.
It can be very difficult to watch a loved one gradually deteriorate with Huntington's disease. The gradual decline can be so slow and happen over so many years that you may feel like you've forgotten how your loved one was before they had Huntington's disease. You may have forgotten how family life was before Huntington's disease affected it. Having pictures and videos can help you remember those fond memories from years gone by and it is good for you to reminisce. However, some people are so young when Huntington's disease affects their family that they may not have many memories of life before Huntington's disease:
It can be upsetting not being able to remember your family member before they were affected by Huntington's disease, but that doesn't mean there aren't good times and good memories to treasure. You may not have many pictures or videos of your family member before Huntington's disease, but other family members may have lots of pictures, videos and good memories to share with you if you asked them.
You can still have good memories of family members, even if they have Huntington's disease. You may have lots of funny moments that you have witnessed or been a part of over the years that have had you smiling and laughing with your family member:
Laughing at stories, and your own stories of living in a family with Huntington's disease, is so important. They say laughter is a great medicine and taking the time to laugh can be a great way to relieve some of your worries and anxieties.
Young people living in a family with Huntington's disease have to go through a lot of changes in their family, at a time when they may be growing up themselves and having a lot of changes in their own lives. Support and understanding from family and friends is important at this stage, however, if you don't feel like you can talk with your family or friends about a particular issue then NYA is always here to discuss things with you, so please contact us if you wish.
The NYA was founded by young people who are dealing with Huntington's disease. Even today, the members of the NYA are more than happy to be a shoulder to lean on when times get tough. It is important to understand as lonely as it may seem, you are not alone in this. Living with HD in the family as a child or teen is much more difficult than as an adult. There are enough changes going on at this time in your life, throwing HD into the mix makes it more confusing.
Living in a family with Huntington's disease provides a lot of difficulties and challenges. But it is not all bad and even in the midst of Huntington's disease you can enjoy life and find things to laugh about. It is important for both young people and the family to learn about Huntington's disease, so that everyone is aware of the condition. Knowing about the disease and how it affects families may help young people cope when these changes start to impact on their own lives.
Being positive and proactive is also very beneficial for young people and the whole family. Fundraising and generating awareness are two great ways of getting your family and friends involved in something positive with regards to Huntington's disease. It is amazing how much of a positive impact both can have on not only family life but the support you receive from others.
It is easy for us to get down on the battle we are facing, and we may tend to have our negative days where nothing said, no advice, or words of wisdom can help. But, again it is important to remember that you are not alone. Friends, family and the NYA are always there for you. Take a step back, breathe, reflect on the day and having a positive attitude can help, though it may not change everything going on.
Thank you to our friends at HDYO (Huntington's Disease Youth Organisation) for putting these tips together! If you would like to add anything that has helped you, shoot us an e-mail at firstname.lastname@example.org.