Making your own plans

Planning towards your own end of life

Breathing support is just one part of the experience of end of life with MND/ALS. There are many other choices you can make around the care you want. Everyone is different – some people like to plan for everything, other people prefer to not to plan.

Many people say that discussing dying and making plans, although difficult, did help them to reduce worries and anxiety. These discussions can bring up strong emotions and feelings of grief. Counselling can be helpful to navigate these emotions.

In the UK, the the MND Association’s helpline, MND Connect can be contacted by phone or email – they are experienced in listening and guiding people in all aspects of MND/ALS care, including end of life. You can find them online here.

The MND Association have resources to help people prepare for dying and to support families and children around bereavement. Marie Curie also have good resources around the end of life, but these are general across different health conditions. See the External Resources section for these links.

We hope this section has helped you to consider your choices around breathing support at the end of life. Keep discussing and exploring your options with your family and care team.