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Huntington's Disease Youth Organization

Being a young carer

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

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 carer does not generally happen overnight, it is usually something that happens gradually. Many young people may not see themselves as a carer or will provide care to their loved one without realising it. You may be providing care right now without necessarily realising it.

‘My mum was my dad’s carer, but I used to help out with things around the house and if my mum wanted to go out I would look after dad by myself - I was only about 14 at the time. I didn’t see it as caring; I just saw it as staying at home with my dad.’ Tony

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

Crossroads

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 study at university, 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.

‘There are times when I wonder if I should put my plans on hold to do stuff for mum or even if I should move out at all. My mum has told me that if I put my life on hold or base future decisions solely on her that she’ll be annoyed with me. She says I have to live MY life and do what’s best for me but there are times when it’s tough when I think about what the future may hold.’ Jackie

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. But the advice given by Jackie’s mother is generally good advice - 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.

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

Swapping roles

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.

‘When I was 12 my dad used to take me to the football games. By the time I was 19 it was me taking my dad to the games because he had progressed so much with Huntington’s disease’ Brian

‘Looking in the mirror’ syndrome

Whatever your caring role is, caring for someone with Huntington’s disease can be difficult, tiring and stressful. It can also be emotionally challenging because you may be at-risk yourself. Having to see the effects of Huntington’s disease on a regular basis can be tough for someone to witness when they know that they are at-risk of inheriting the same condition themselves. HDYO calls this the ‘looking in the mirror’ syndrome, where being around somebody with Huntington’s disease can become a little too much.

‘It became really hard for me to care for my father who had Huntington’s disease. I kept looking at him with his symptoms and thinking “that will be me in 20 years”. It was really difficult to deal with.’ John

The ‘looking in the mirror’ aspect is genuinely a difficult emotion to overcome. If this is something that worries you then perhaps the being at risk section will be able to help.

Feeling guilty as a carer

There may be times when you feel guilty as a carer, 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.

‘Sometimes my mum would be so difficult to care for that I would get extremely stressed out and usually ended up shouting at her. Afterwards I would feel so guilty because I knew it was not her fault, it was the Huntington’s disease. But it was hard not to shout at times and usually to make up for it I would give her a hug as an apology. It made me feel better too.’ Abbey

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 apologise and explain why you are stressed if necessary.

The person being cared for taking things out on the carer

Equally, as carers 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?

Jimmy Pollard's book

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. Jimmy Pollard has written a book all about the way people with Huntington’s disease think and strategies for caring for them. If you want to learn more about his book (it is available in many languages) then click on the image.

Jimmy’s book explains very well how people with Huntington’s disease think. But we have provided some of the main points from the book below, 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:

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 carer’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. Also, HDYO is here to help and support you so please do not hesitate to contact us.

Making time for yourself

Caring for a loved one can impact heavily on a young person’s social life too. Often young carers 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.

‘I remember during my late teens, when my friends were all going out at the weekends and enjoying themselves, I would have to stay at home, or at least be back by a certain time in order to put my dad to bed.’ Kevin

Out with pals

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 organise 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 carer come in for a few hours a day/week to give you some time off to relax and enjoy yourself. Time away can be very beneficial to both yourself and your family to have that time.

Enjoying time together

BJ and his mom

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!

‘There is nothing more rewarding than seeing my mums face brighten up when we go out and do something nice, it’s normally something as simple as going for a little drive in the car to the countryside so that she can see flowers and wildlife that she loves. It only takes an hour but it leaves me with a warm and happy feeling knowing that she has enjoyed herself and it has brightened her day.’ Chantelle

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.

What support is available?

HDYO: The HDYO can help in various ways. We are able to provide you with contact to your national Huntington’s disease organisation if you need it, we can direct you to more detailed information about being a carer, we can also provide you with contact to other young carers from families with Huntington’s disease via our HDYO message board and we are here to answer any questions you have so please contact us if you need support.

National Huntington’s Disease Organisation: Your national Huntington’s disease organisation is best placed to inform you about what support is available in your area and help you to get it. They may even be able to suggest conferences and events for carers from Huntington’s disease families, or even camps you can attend for a little time away. Making contact with your national Huntington’s disease organisation can open up a lot of support options for you, so it is important to talk with them and seek support. You can find a list of the national Huntington’s disease organisations here.

Young carer organisations: You may live in an area that has young carer organisations. These organisations are there specifically to support young carers for people with various conditions and provide them with support. Again, you need to check whether there are any organisations like this in your area, your national Huntington’s disease organisation should know.

Respite care: Respite care may be an option for you and your family. This involves the person with Huntington’s disease going into a care home or hospice for a short period of time to allow the family a break from their caring roles. Some areas may have respite carers that will come into the family home and look after the person with Huntington’s disease in their own home environment while the rest of the family take a break. There are also, in some regions, facilities available where the family can go on holiday to a respite ‘camp’, with the family member who has the condition, and they will be looked after by carers there. This option is not available everywhere so you will need to check with your national Huntington’s disease organisation to see whether it is available where you are.

Care support: You and your family may also be able to receive care support in the form of paid carers coming into your home to provide care to your loved one. This gives you a break from caring and allows you to do other things during the day knowing your loved one is being looked after at home. Again, this type of support isn’t available everywhere, but if you contact your national Huntington’s disease organisation they should be able to help you.

Financial support: The Governments of some countries provide financial support for people who are doing unpaid caring for a family member. This is so they can continue to look after their family member without having to worry too much about the lack of money due to not working. How much financial support people get varies from place to place, but it is usually a reasonably small amount and there tend to be lots of conditions that need to be met in order to be eligible for financial support (things like how many hours you spend performing care tasks, age and family support).

Care homes: Even with various support networks helping you, it can still be a struggle to look after someone with Huntington’s disease. As the condition progresses more care is generally needed for that person and this means loved ones have to put even more time and effort into their caring role. There may be a point when the family feel it is time for the person affected by Huntington’s disease to move into residential care. This can feel like a massive step to make and one that often leaves family members feeling guilty. It’s important to remember that you can only do so much and as sad as moving into a residential care home may seem, it is usually not as bad as first thought. There are care homes out there that specialise in Huntington’s disease and your family member should be well looked after there. You would be able to visit regularly and spend quality time together with your loved one.

Your national Huntington’s disease organisation should be able to help if the time for finding a suitable care home comes. However, having said all that, it’s worth pointing out that not everyone with Huntington’s disease goes into a care home. Some families are able to look after their loved one at home for many years. It depends on each family and their situation.

Overall, looking after someone with Huntington’s disease, at a young age, is difficult. HDYO cannot stress enough how important it is to make sure that, if you are a young person providing care, that you have some support for yourself - no matter how small that support is. It can make all the difference in the long run. You do not have to go down this road on your own; there is support out there for you. Again, please contact us if you want to discuss what support is available to you and you can also visit our HDYO Forum to talk to other young carers who may be going through similar experiences.