Being a carer

If you are reading this website it is likely that there is someone in your family who has HD, and you may well have a caring role now or have been a carer in the past. You may not see yourself as a carer but as a son or daughter, brother or sister – but when you look objectively at the situation you are providing some sort of a caring role. Caring can have a big impact on your life and decisions you make. For example, you may feel guilty about leaving the person you care for if you are going to study or move in with a partner – you may think that you shouldn’t think about your own future, but focus on the person you are caring for.

Caring for someone in the family can be difficult, tiring and stressful. It can also be incredibly emotional especially if you are at risk for HD yourself or have had either a positive of negative test result.

Caring can also have its good times, when you see the person enjoy themselves and it seems like it’s all worthwhile.

People with HD often become dependent on one particular person. This is often a family member who they feel very comfortable with, so naturally they would prefer this to a stranger coming in to their home. This also means that it may be the person that they ‘take things out on’ - people will often be much harsher on their family members than professionals and this can be really tough.

This dependency can make you feel bad about trying to get outside help in, but it is really important to know about the support available. In England and Wales people with a disability may have an assessment from social services to see what support they are entitled to, and a care plan may be set up for them which is appropriate to their needs. Sometimes asking for professional help seems overwhelming, or even embarrassing if you think your situation is different to every else – you may wonder how carers coming in would cope with your loved one especially if they have some unusual behaviours.

It can be a good idea to contact your local Regional Care Adviser from the HDA for support. They can help you navigate your way through the care system and can support the professionals with information about HD. If carers start coming in to the home, they can offer training to them so they get to understand HD.

The Social worker can also advise if there are benefits that you or the person you care for may be entitled too.

Social workers can also assess whether the person may actually be better off in residential care. Sometimes this can seem like a massive stepping stone and, again, a time when people often feel guilty. However, people who have dreaded their loved one moving out often look back and say that it has been a relief – and that they are able to spend more quality rather than quantity time together.

As a carer there is a lot of support available and the HDA carer's guide goes through a number of issues in relation to caring for someone with HD.