If you provide care and support to a family member you may view yourself as a wife, husband, son, daughter, or partner before a 'carer'. Due to the hereditary nature of HD, you also may be looking after more than one member of the family at the same time. Add to this the possible personality and behavioural changes in the person you care for and the long duration of the illness and we can see why caring for someone affected by this disease can be particularly challenging and demanding for you - physically, emotionally and financially.

Physically

Caring for a person with HD can be physically exhausting, especially as there are usually mobility, bathing and nutritional care needs. Looking after someone with HD also takes immense physical strength, due to the challenges of involuntary movement control. In particular, the jerky and uncontrolled movements can make bathing and dressing more difficult, preparing special diets takes more time and meal times can feel like a marathon. Additionally, carers may find that they cannot get any sleep if their partner's movements keep them awake at night. Many carers often have bruising and injury to themselves, as the uncontrolled movements cause the person with HD to accidentally thrash out.

Emotionally

The behaviour and personality changes in a loved one can be distressing for the carer and can lead to a difficult caring relationship, which is often in stark contrast to their former relationship. HD sufferers can be inflexible and mentally rigid, often having set behaviour patterns and an unwillingness to adapt to new circumstances. They can be emotionally volatile and flare up for no apparent reason, having great difficulty in seeing another person's point of view, whilst often denying that anything is wrong at all. In trying to cope with these changes, HD carers commonly suffer from stress, anxiety and depression.

Again, due to the complex hereditary nature of the disease, carers can also experience feelings of anger, guilt and constant grieving for their family.

Financially

Nearly all carers suffer financially. In many cases, carers have to eventually give up employment to care for someone full time. There are, however, specific financial burdens in caring for someone with HD.

Due to the involuntary movements, people with HD often break chairs, beds and other household items, and these need to be replaced on a regular basis. Food spills and torn clothes create extra washing, shopping and electricity bills. One of the biggest financial burdens is food bills. Individuals with HD require up to three times more calories per day to help maintain their weight.