RAISE Family Caregivers Act: Hope for Burned Out Family Caregivers?

Alethea Mshar
Special needs mom and Blogger
02/12/18  4:10 PM PST
family caregivers

RAISE Family Caregivers Act: Hope for Burned Out Family Caregivers?

Somehow, when I wasn’t looking, I stopped taking care of myself, and after a rough season, I find myself trying to regroup and pull myself together. It’s easier said than done.

Primary caregivers of children with disabilities and special medical needs often wind up in this situation. We know the importance of self-care, and we do our best, but the simple fact of the matter is that sometimes there is just so much to be done, that as caregivers we come in last place. There are only so many hours in the day, and if we run out of time, we skip our own needs, and find ourselves completely depleted. It happens one little thing at a time, and before you know it, instead of being a tired but strong and capable caregiver, we get to a point of exhaustion.

I wish I had seven great tips for solving this problem, or four ways to fill up yourself in order to be able to keep giving to others, but the reality is that It’s normal for parents to feel depleted, and for those of us wearing the hat of the caregiver as well the situation is far more complex. I see article after article telling caregivers how badly we need to stay holistically well, and the comments on them almost always include that many of us simply have no choice, we get up each day, and do what needs done. It’s simple, it’s matter-of-fact, and it’s our reality.

As family caregivers, we don’t have time to come up with solutions, if we did, we wouldn’t be in this position in the first place.

Medical advancements save lives of children who just a generation or two ago would have had almost no chance at life. In those same years, we have transitioned from institutionalizing them, to raising children with disabilities at home. Both the advancement in care and education are wonderful milestones, and morally and ethically the best choice for our society.

While these advancements have been welcomed, and rightly so, we have failed to accompany these advancements with adequate in-home family supports to allow families to meet the requirements of our children with special needs. All this while balancing the rest of life’s demands, and still having enough time and money left to get breaks and maintain the mental and physical health we need to continue to provide them with exceptional care.

Last week the RAISE Family Caregivers Act, legislation with broad, bipartisan support, was signed by President Trump. According to Forbes magazine, RAISE promises to examine and address the gaps that families caring for children and adults with disabilities face. While I am sure it will take time coming to fruition, this is an enormous step in supporting individuals with disabilities and their families in a robust fashion. I, for one, am eager and ready and will be watching the horizon for these changes, which are overdue and much needed.

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