People with MND are encouraged to talk through options for their care and preferences for end of life, before the need is urgent or before you find it too difficult or tiring to communicate.
Having time to think things through and knowing that your wishes and decisions have been recorded gives many people peace of mind.
Advance care planning is the process of thinking about, talking about and planning for future health care and end-of-life care. Advance care planning helps people understand what the future might hold and to say what treatment they would and would not want. It helps people, their families and their healthcare teams plan for end-of-life care. This makes it much easier for families and healthcare providers to know what the person would want, particularly if they can no longer speak for themselves.
The aim of hospice is to help people make the most of their lives, in whatever way is important to them. Anyone living with a life-limiting condition can access and benefit from hospice services.
Hospice care has a unique 'whole person' approach, which means physical, spiritual, emotional and social needs are equally important. A multidisciplinary team provides care for the person who is dying and their families and friends, both before and after a death.
While most hospice services in New Zealand do have inpatient facilities, the majority of people are cared for in their homes.
Find your local hospice service here.
Skylight is a national not-for-profit trust that helps children and young people through times of trauma, loss and grief. Skylight can send support information tailored to specific situations, posted out to anyone, anywhere in New Zealand. (A donation is requested to help cover the cost of this service.) Support resources and publications are also available for loan including books, DVDs and games.
Phone: 0800 299 100 or +64 4 939 6767
MND Scotland has several helpful fact sheets (PDFs) for people considering powers of attorney, advance directives, leaving a legacy or medical bequest as well as those who need to deal with bereavement and other arrangements.
Note: New Zealand law differs to Scotland law, so these documents are for reference purposes only. Please seek the advice of a lawyer for all legal matters (eg wills, powers of attorney).