Huntington's WA recognises the vital role that carers play in providing care and support for those affected by Huntington's Disease (HD). Carers are often partners or other family members, such as parents or siblings. The care provided can vary from simply helping someone out on a regular basis with shopping, cooking or washing to providing support 24 hours a day, seven days a week.
However, many carers who provide this care and support will not view themselves as a "carer". First and foremost they will view themselves as a partner, parent, child or sibling. Additionally, due to the hereditary nature of HD, carers may be looking after or supporting more than one member of the family at the same time. Along with the possibility of personality and behavioural changes in the cared for person and the long duration of the illness, caring for someone affected by this disease can be particularly challenging and demanding - physically, emotionally and financially.
This information and advice is provided on various aspects of caring for a person with HD and aims to support carers who are looking after a family member affected by the disease.
Some aspects of caring for someone with HD
Caring for a person with HD can be physically demanding, especially as there is usually mobility, bathing and nutritional care needs. Looking after someone with HD also takes physical strength, due to the challenges of involuntary movement control. The jerky and uncontrolled movements can make bathing and dressing more difficult, preparing special diets can take more time and you may find that sleep is interrupted by the person's movements, restlessness or needs.
The behaviour and personality changes in a person with HD can be distressing for the carer and can lead to a difficult caring relationship, which is often in 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 may 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 on going grief for their family.
Many carers suffer financially. In many cases, carers have to eventually give up employment to care for someone full time. There are often added costs associated with the need for special equipment, food supplements, pharmaceuticals and care assistance.
Support services for Carers
Huntington's multidisciplinary staff team have many years of experience with families facing the challenges of Huntington's disease. Huntington's WA provides support for Carers through:
- Telephone Services and Home Visiting - The telephone service is often the first point of contact and this service provides timely access to on-going support and assistance through the Huntington's WA's specialist staff. Huntington's WA is also able to offer specialist support through one-to-one visits by staff in the home or at other convenient locations, providing invaluable opportunities for emotional support, linking with other relevant agencies and services. Please feel free to contact the office on (08)6457 7599.
- Referral - Specialised Advisors are available to provide referral to appropriate agencies for various services. These may include the Neurosciences Unit in Mt Claremont, Home and Community Care Programs and other allied health services.
- Carers' Support Groups and Retreats - Huntington's WA's support groups and retreats provide opportunities for participants to develop relationships with others affeted by the disease; share information and experiences; and be given the opportunity to participate in social and leisure activities.There are a number of support groups available for Carers with meetings held monthly in the central metropolitan area, monthly in the North Metropolitan area and bi-annually in Rockingham. As the venue for the meetings varies from time to time please contact the office on (08) 6457 7599 for confirmation of the venue and the next meeting date. Carers Retreats are organised at least once a year. ALL ARE WELCOME!
Other available resources:
Links to Other supports
Palliative Care WA