| What will Happen to my Family? |
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When your parent has HD everyone in your family will be affected. Each person will be feeling a lot of different emotions. They might be sad, angry or pretend that everything is OK. There will be lots of practical changes that might need to be made in order to cope with this new stage in the family. Also your family might have to change some of their spending habits because treatment is expensive and your parent might even have to take time off work and quit eventually as disease progress. The following information will give you some examples of what might happen in your family. Emotional ChangesA parent's or other family member's diagnosis of HD affects the whole family. However, families usually don't talk about what's hard because people can get upset or angry. But talking can help and allow you to feel closer to each other. People can only understand how you are feeling and what sorts of things might help you if you talk to them. Financial ChangesLiving with HD can be pretty expensive. Your parent might have to stop working as the disease progresses and your well parent might have to take time off to go with him/her to appointments or to look after you and your brothers and sisters. Money problems can really be hard to deal with, especially if you have never had to think about them before now. Depending on your parent's condition and family situation, your parent might have access to some financial assistance to help meet the costs of living with HD. Your parent might also be eligible to receive assistance with personal care, meals and general home help. Our information and case management services might be able to assist and work with your family in exploring assistance and services available for your family. Your parents may no longer be able to give you spending money as much as they did before. You might have less than your friends do, and find it hard to ask for more money because you would feel guilty. You need to discuss your money concerns with your parents. They have had to deal with this before and they will have more ideas about ways around it. They might be able to help you organise what you need and explore what options are available in relation to financial assistance as well as other additional options open to them. What Can I Do to Help?After experiencing the initial shock of finding out that your parent has HD, you might realise that some things in your life are definitely going to change. It is important that you try to keep your life as normal as possible while your parent goes through the stages of the disease, but you might also find that you, and the rest of your family members have to make changes to your normal routine, which may include:
These are just some of the things that might happen as a result of your parent's diagnosis of HD. It can often feel really unfair when you have to take extra responsibilities and miss out on things you like doing just because your parent is sick. Talk to someone in your family or to another adult when you feel that things are getting really unfair. The person you speak to could help you work out other solutions to help ease extra pressure that is being placed on you. You might find that some things can be put on hold for the time being, until everyone gets back on their feet. Remember, people can't help you unless you let them know that things are not working out well for you. In some case, the family might just expect you to pick up some pieces when your parent is unwell. He/she might be so pre-occupied with worrying about your sick parent that he/she hasn't thought about the impact this is having on you. The best thing you can do is ask him/her to sit down and talk with you. Explain how you are feeling and ask your parent for help and advice. Resources
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