Among the many requests we receive, questions about support and information for caregivers features significantly.
The health and wellbeing of caregivers is a vital component of the support system for a person with MND. It is important that the needs and rights of both the person with MND and the caregiver are acknowledged.
Many caregivers may not identify themselves as a caregiver as they see this work as an extension of their existing role, for example that of wife, husband, partner, son, daughter or friend. Nevertheless they are also caregivers. Some caregivers are ’fulltime’ while others balance caring responsibilities with paid employment. Most caregivers live with the person they care for, however some live nearby, while others provide care from a distance.
The caregiver role can be overwhelming, causing fatigue and feelings of hopelessness, worry, anger, guilt, loneliness and distress. Many carers find that talking with others can be a great support, particularly with those in a similar situation.
Our group program, Living Well provides an opportunity for carers to meet in a non-threatening, friendly environment with others who are experiencing similar circumstances. Living Well is conducted in a group format and covers topics such as maintaining good health, learning to live in a new way and coming to terms with the significant life changes that follow a diagnosis of motor neurone disease. In Living Well we can also cover any other topics that are important to the group. The program is for the person living with MND and their caregiver. It is designed this way so the caregiver can attend without the worry of leaving the person they are caring for or the pressure of making alternative arrangements for care whilst the program is running.
The program varies based on the needs of those who are interested in participating. The Living Well program may utilise group discussion, readings, presentations and videos. Typically, the program is run either over six or eight weeks, or as a two day program. However, the length and format of the program together with the venue can be arranged to meet the needs of participants.