Support > Family Carers Information Toolkit
Caring until the end
Learning that someone you love has an illness like MND can be frightening. Knowing that someone close will die can bring up worries and fears. It can help to talk about these, so they don’t start to feel impossible to deal with.
You might want to talk to your partner, family, friends, religious minister or you may prefer to seek professional support.
Our MND Advisors provide support to those diagnosed with MND and their families. They can help you source more emotional and spiritual support if required.
MND Victoria hold online support groups three times a month. Kitchen Table Conversations are held on the 1st Friday each month at 2pm and the 3rd Thursday each month at 7.30pm. These are facilitated by the Carer Program Coordinator, Andrea Salmon, along with a volunteer who is a past carer. On the 2nd Monday of the month at 2pm there’s a group only for male carers led by one of our MND Advisors, Eric Kelly and a past carer who is a volunteer.
CarerHelp have produced short, very thoughtful and gentle videos about death and dying and there is written material which you may prefer to read in your own time from a variety of organisations.
Calvary Care offer different programs to assist carers in Caring until the End running programs of the same name over two sessions a few times each year. They also hold programs called Let's Talk about Death over Zoom. These programs can be extremely valuable.
Please speak to someone you trust about your concerns and get support to help you through this experience. You are not alone, but you do have to speak up.
Other links
- Palliative Care Advice Service (including information in difference languages)
- Grief Australia
- Mensline Australia
- CareSearch
- Brainlink
- Carer at Home Project
Webinar Recordings
The value of early palliative care
Carol Barbeler, Palliative Care Nurse and MND Shared Care Worker, and Eric Kelly, MND Advisor and Team Leader explain palliative care, and how important it can be to make a connection with your local palliative care service. Palliative Care is not just about a good end of life, but living a good life and managing symptoms.
Experiences
Emma's experience
Emma’s husband John doesn’t talk about his emotional and spiritual needs. He seems reluctant to discuss them with Emma, for fear of overburdening her. Emma talks with her MND Advisor about her concerns for John. Her MND Advisor, who has developed a good relationship with John, talks to him to make sure he has all the support he needs.
Marcia's experience
Marcia finds it difficult to start difficult conversations with her husband Mark. Her MND Advisor suggests involving a friend from their social circle to make sure Mark is getting the emotional and spiritual care he needs.
