If you are looking after someone with Huntington’s, it is very important to do what you can to look after yourself, as well as the person you are caring for. It is common for carers to ‘burn out’ mentally and physically from the demands of looking after someone with high care needs and challenging symptoms, day after day.
Caring for someone with Huntington’s, especially during the later stages of the disease, is very demanding. You are likely to need support, if not now, then in future.
Much of the information here is relevant to you, but also see Getting help with Juvenile Huntington’s.
If you are the main carer for someone with Huntington’s, you may feel concerned about who would look after them if something happened to prevent you from looking after them, e.g. you have to go into hospital.
Carers UK has good advice on planning for an emergency. In some areas there are emergency card schemes, often managed by the local council or carers centre. The schemes usually offer a 24-hour response service. Carers carry a card with the scheme's telephone number and a unique identification number. In the event of an emergency, you or someone with you would call the scheme. An operator would look up your emergency plan and make arrangements for replacement care. Check with your local carers' organisation to see if such a scheme operates in your area.
In order to function as a carer, from time to time you need to have a break from your caring duties. A lot of people find regular respite, such as using a day centre two or three times a week, to be helpful. In addition, having a longer respite break once or twice a year gives both the carer and the person with Huntington’s something to look forward to.
Although awareness is improving, Huntington’s disease remains a very rare illness so respite services may not have experience of looking after other people with it. You could ask your Specialist Huntington’s Disease Advisor (SHDA) to make contact with them and provide information, advice or training. Respite options that might be available to you include:
Caring for someone with Huntington’s disease can be very difficult. The right support can make a big difference and we’re here to help. You may also wish to contact an organisation specifically for carers, such as Carers UK, which lots of free information online and runs an advice line tel: 0808 808 7777.