It’s no surprise that family carers are undervalued. That people think we don’t deserve a decent carer’s allowance or one that’s not means tested. That our children don’t deserve respite.
Because don’t we get a great break every day when they are at school? (Or adult services)
Well no actually, we don’t. But I would be a millionaire if I had a euro for every time that has been said to me. And I know it’s meant kindly, but it makes carers feel even more isolated and misunderstood.
Here are some of the things that carers do while their children are in school:
Because many disabled children and adult sleep very little or need a lot of attention during the night.
Exercise – because carers need to be fit for their very demanding job.
Attend personal medical appointments (anecdotally carers tend to have more chronic illnesses, mental health issues and physical problems like bad backs due to their caring role).
Disability Administration and Meetings
Medical and therapy appointments with your loved ones.
Chasing up appointments and services that have not happened, and services that have been delayed.
Form filling. More form filling.
Ordering and collecting medical supplies.
Meetings with service providers
Preparing for meetings, writing minutes of meetings, sending them out and following up on all action points.
Spend time with other family members (in my case my youngest).
See friends and others in the disability community for emotional support and information.
Organise or help organise social activities for their disabled loved ones who might otherwise have no friends or places to go to on evenings and weekends.
Housework and Maintenance
Yes carers have to do that too, and it may involve cleaning up more mess than the typical household as well as more laundry.
Disabled children who regularly get distressed may damage the house or break household furniture or equipment so repairs and replacements need to organised.
Cooking: Many disabled children and adults have specific dietary requirements or will only eat certain foods, so different meals for different family members may need to be prepared several times a day.
To rights, entitlements , therapies, information, equipment.
Researching a hard to get game or toy that your child must have and you know they won’t understand or accept your failure to produce it.
That’s all I managed to think of over breakfast. What would you add?