Everyday support
Family carer
A partner, family member or friend who helps with daily life, usually without planning to and usually without anyone naming it.
Someone in your life rather than a job. Nobody has to use this word about themselves.
Most of the help people with ALS/MND receive comes from someone who loves them. That person may not think of themselves as a carer, and there is no need to use the word if it does not fit. But some support, some entitlements and some services only become visible once someone does use it, which is the practical reason it is worth knowing the word exists.
How you reach this person, and who pays, depends on where you live. Set your country in Location and Compass will show what applies there.
What they can help with
- Practical daily help, from meals and dressing to transfers and medication, ideally after somebody has shown you how
- Being the person who notices a change first
- Holding the information, which quietly becomes a job of its own
- Speaking up at appointments, when speech has become tiring
- Managing equipment, appointments, forms and everyone else's questions
When you might meet them
- Usually from before anyone calls it care
- More visibly when practical help becomes daily
- At every appointment, if you both want that
Things you could ask about
- Is there a carer's assessment or carer support I should ask about?
- What training is available for the things I am doing already?
- What respite exists here, and how far ahead do I have to plan it?
- Who do I ring if I cannot continue for a while?
- Is there support for me, separately from supporting them?
Not to be confused with
Not somebody who should be learning transfers, hoists, suction or tube feeding alone. A paid support worker has limits on what they may do without specific training, and a family member deserves that training rather than less of it, so ask the clinical team to show you before you take a task on. Not a support worker either, and not a substitute for one: a support worker is paid, trained and can be replaced when they are unwell, and doing the same tasks does not make the two situations the same. In South Africa the same word, caregiver, is used for both the family member and the paid worker, so it is worth saying which you mean.