Support > Family Carers Information Toolkit
Care outside the home
There are a number of reasons why a person with MND may need care in hospital or have short term or long term care outside of the home.
Patients and family carers should feel involved in the decisions that health care providers make. You should feel comfortable about raising concerns or asking questions. Some pre-thinking and pre-planning can attempt to make this easier.
When care needs become greater, it is important that people who are providing care at the bedside are informed about the best way to provide care – to remind them of the basic needs required to be comfortable, safe and able to communicate needs. The resources below can help with reflecting on and communicating the needs and wishes of the person who is receiving care outside of the home:
Advance Care Planning involves having conversations with your loved ones and making your wishes known sooner rather than later. Advance Care Planning tools include wills, advance health directives, enduring power of guardianship, enduring power of attorney and advance care plans.
MND Victoria has developed a resource to provide if the person for whom you care has an inpatient stay in hospital or respite facility.
An emergency care plan has all the information about the person you care for in one place, so you can get it quickly and easily. An emergency care plan makes it easy for someone to take over from you in a hurry.
Palliative Caring Booklet
Information for families and carers who are caring for a person with a life-limiting illness or condition.
Paramedic guide to MND
Download the booklet below.
Experiences
Jack's experience
Jack often feels intimidated by the specialists involved in his wife’s care. He doesn’t feel confident to ask questions when there are things he doesn’t understand, and he feels like they do not listen to his concerns.
His MND Advisor encourages him to re-connect with his social worker who can help him build his confidence to be more assertive. Jack has started taking a notebook to appointments. This allows him to record the discussions as well as write down questions he wants to ask. This has helped him feel less overwhelmed and flustered.
