Being a teenager is hard enough, then you throw in HD and JHD and everything seems even more hectic! Calm down, being a teen impacted by HD and JHD isn't as awful as it may seem. You'll look back at these years and see the growth and triumph. You'll see the young man or woman you once were and be amazed at how you were able to fight on. Our loved ones may have HD, but HD does not have us!
The Person Being Cared for
Equally, as carergivers can take stress out on loved ones so can people with Huntington’s disease, as they become frustrated or upset over things. Often when people with Huntington’s disease get upset, even if it isn’t your fault, they may take things out on you. This tends to be because they feel comfortable around you as you are a family member or someone they trust and depend on. Try not to take any outbursts aimed in your direction personally, which is a lot easier said than done! But remember outbursts are quite a common symptom of the disease. If you do become angry or frustrated with the person who has Huntington’s disease, it can be a good idea to (if possible) walk away and come back when you feel that you have calmed down enough to handle the situation.
There can be times when caring for a family member can become too much and you either feel that you cannot continue, or you need a break. There is nothing wrong with feeling this way; in fact it is very common to feel like this at one point or another. The impact of caring for a family member with this disease is not just felt in the home environment. Many young carers find it harder in school or at work. A young caregiver’s results might start to fall at school, or their productivity and reliability at work might begin to drop. Sometimes young people leave school or work altogether, as they just can’t cope with the demands being placed on them. If you feel your education or career is being affected by caring for someone with this disease, it is important you speak to either your family, the school, work or a professional about this issue.
For a listing of HDSA resources and support groups as well as professional services in your area CLICK HERE or contact HDSA at 1-800-345-HDSA.
Being A Young Caregiver
As people with Huntington’s disease progress, a person affected with the disease will gradually begin to need more care. As a result, young people in a family with Huntington’s disease may provide care for a loved one at some point in their lives. Many young people find themselves taking on a caring role in a family with Huntington’s disease. However, becoming a caregiver does not generally happen overnight, it is usually something that happens gradually. Many young people may not see themselves as a caregiver or will provide care to their loved one without realizing it. You may be providing care right now without necessarily realizing it. Other young people have a more permanent or official caring role and provide regular care for their family member — doing all the duties that (perhaps) the family member used to do, whilst also making sure that they are looked after and cared for.Difficult Life Choices
Caring can have a big impact on young people’s lives. One of the biggest impacts is the guilt felt by young people who are torn between caring for their loved one and living their own life. Many young people feel guilty about leaving the person they care for if, for example, they are going off to college, or planning on moving in with a partner elsewhere, or even something as small as going out for the day — all of these situations may cause a young person to feel a sense of guilt for not being around to help look after their loved one. Young people may end up feeling that they should not think about their own future, but focus on the person they are caring for. It can be difficult for a young person to plan their future when they know in the back of their mind that they may be needed to help care for a loved one. However — it is your life to live and you should make decisions with your own individual future in mind. That’s not to say that you shouldn’t care for your loved one, it is your choice to make, but the important thing is that you understand you have that choice and you don’t have to put your life on hold.One of the biggest impacts is the guilt felt by young people who are torn between caring for their loved one and living their own life.
Looking After Siblings
It is not just the person with Huntington’s disease that young people may find themselves having to care for. Young people may have brothers or sisters that they have to look after as a result of the parent, who has Huntington’s disease, not being able to do as much as they did before. In a way young people can end up becoming almost like a parent to their siblings during this time, doing all the jobs that the affected parent normally would. This can be difficult for everybody in the family, especially for the siblings who take on the extra responsibility as they may feel that they have to be the ‘strong ones’, setting a good example to their brothers and sisters. This situation where a young person takes on the ‘parent role’ can lead to them believing that they cannot show weakness during this time, that their role is purely to be supportive to the rest of the family, often forgetting they deserve just as much support themselves.Role Reversal
This change of roles — from child to parent — happens to many young people providing care in a family with Huntington’s disease. As people progress with the condition and the person begins to lose their abilities such as walking, talking and generally looking after themselves, the young person begins to take a more parental role in the family, filling the gap left as a result of the parent having Huntington’s disease. Also as people progress with the condition they tend to become more ‘childlike’ in their nature, as they become more dependent on others, and this adds to the feelings of role reversal often experienced by young people.Feeling Guilty As a Caregiver
There may be times when you feel guilty as a caregiver, maybe it is for not being there when you felt that you were needed or perhaps you shouted at the person with Huntington’s disease because they were making things difficult and it was causing you some stress. Neither of these situations is anybody’s fault. Remember that it is the Huntington’s disease causing the person to be difficult and they usually cannot help their actions. But you also need to remember that you are only human and if something causes you stress then it is only natural to want to let that stress out. Sometimes that will mean you may end up shouting at your loved one affected by Huntington’s disease or other family members/friends. But try not to feel too guilty about that, everybody gets annoyed from time to time, you can always apologize and explain why you are stressed if necessary.The Person Being Cared for
Taking Things Out on the Caregiver
Equally, as carergivers can take stress out on loved ones so can people with Huntington’s disease, as they become frustrated or upset over things. Often when people with Huntington’s disease get upset, even if it isn’t your fault, they may take things out on you. This tends to be because they feel comfortable around you as you are a family member or someone they trust and depend on. Try not to take any outbursts aimed in your direction personally, which is a lot easier said than done! But remember outbursts are quite a common symptom of the disease. If you do become angry or frustrated with the person who has Huntington’s disease, it can be a good idea to (if possible) walk away and come back when you feel that you have calmed down enough to handle the situation.How Do People With Huntington’s Disease Think?
People’s thought processes change when they are affected by Huntington’s disease; this is as a result of the disease causing damage to the brain. Understanding the condition and how people with Huntington’s disease think can really help when trying to care for that person.
Hurry Up and Wait! by Jimmy Pollard is a book about the way people with Huntington’s disease think and strategies for caring for them. Below are some of the main points from the book to help you understand the thought process of someone with the condition. It is written from the viewpoint of someone with the disease.
I have Huntington’s disease - this means: 
- I like my own routine
- I do one thing at a time
- You need to get my attention and then tell me what you want
- Give me time to answer - don’t repeat what you said before I answer back, wait for me to reply
- I don’t know how to wait, so if I need something I need it now
- My brain gets stuck on thinking about important things — so I repeat the same words a lot
- I can still have fun and enjoy things!
- It can all become ‘too much’ at times
Making Time for Yourself
Caring for a loved one can impact heavily on a young person’s social life too. Often they can find themselves not being able to go out with friends much (if at all), as they are required at home to look after their family member. Try not to deny yourself opportunities to have a break and spend some time away from your family member. It is important that you don’t try and do too much and overload yourself. You can’t help anybody if you are not in a fit state to do so — look after yourself and seek support if you need it. Time away is not always an option for everybody, for example, you may be the only caregiver available to look after the family member. But if possible make sure that when you feel like things are becoming too much, that you listen to your feelings and have some time to yourself to relax. It might be useful to organize a regular time slot for yourself where you can relax. Perhaps you could ask a relative or friend to look after your family member for a night every week/month, or maybe you alternate care shifts with a sibling etc. There may be the option of having a paid caregiver come in for a few hours a week to give you some time off to relax and enjoy yourself. Time away might be beneficial to both yourself and your family.Enjoying Time Together
Just as having time apart is important, so is spending good quality time together. Sometimes it can be easy to forget that people with Huntington’s disease can still enjoy life. Being a carer doesn’t need to be hard work all the time, you can create some good memories together during this time too. It can be good to get outside, take your loved one for a walk, go watch a sporting event together or enjoy social events and family get-togethers. All these things can make a world of difference to both yourself and the person with Huntington’s disease. Enjoy the time together and create some great memories!Support
Caring for somebody with Huntington’s disease is difficult; it is emotionally and physically draining. If you get to a stage where you feel you need help, it is important that you are not afraid to ask for support. If you need help then absolutely make sure you seek it. There are possibilities out there for you that may make your job as a carer easier and less stressful.For a listing of HDSA resources and support groups as well as professional services in your area CLICK HERE or contact HDSA at 1-800-345-HDSA.