Youth Caregivers Have a Hard Time Finding Respite

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New parents are often given the sage advice, "You need time for yourselves—to have fun as a couple; time away from your children."

Is it really any different when you are the adult child taking care of your parent? Your mom who has had a stroke and some memory loss now lives with you. You are unable to breathe easily when you leave her alone, even when she is sleeping. She has a Personal Emergency Response System, which she has to trigger. What if, what if, what if…

You are on guard 24/7 and you are wearing down. "Where is that babysitter that mom had when I was a child?" you wonder.

Today that babysitter is a respite care worker—it could be someone hired through a home health care agency, or through the Area Agency on Aging, a trained volunteer, or a trusted and skilled family friend. (This respite care checklist outlines important information about your loved one's care needs, and can be used to ease communication between you and a respite care provider.)

Wherever the respite care worker is from, you are now able to have time to breathe, to have fun, to have a break from your caregiving responsibilities. And, you have learned the importance of having that breathing break, that respite, regularly.

Unexpected consequences of age discrimination

Imagine instead that you are 15 years old and your 49-year-old mom has had a stroke. Your dad has long since left you both, and your older brother lives a distance away and he is involved in activities of his own. You worry about your mom when you are at school. "What am I going to find when I get home?" And then you remember you have to stop by the pharmacy to pick up your mom's medicines. "Why me?!" you wonder.

A home health nurse came to the house a couple of times at first, but what about now? The social worker claimed your mom was too young to receive other services. She said, "Your brother is just going to have to help you." Fat chance. And that was the last time we heard from them.

You forget about your homework to cook dinner, do some laundry and spend time watching TV with your mom. The phone rings—you don't answer it because the caller ID lets you know it is the landlord. With mom not working, you don't want to worry her more. She could have another stroke and then what would happen?

"I should do my homework, but I'm so tired…does anybody care?" you think. "Who will give me a break? Tomorrow I'll call Freddy and see if I can meet up with him. He said he would pay me to do some stuff for him and that he won't let me get in trouble. At least I can make some money to buy some food…and take better care of mom. I didn't do my homework and the kids just make fun of my sneakers. They'll never miss me at school…"

And so the cycle begins. Short term survival trumps going to and staying in school. Making money to survive, even illegally, becomes a driving force. With managed care, there is little, if any, ongoing home health care. Income from disability takes time. Aging services only have funding for older people—mom should have waited to have her stroke. The system is like Swiss cheese; lots of holes in it.

It doesn't have to be this way!

Be an agent of change. Raise awareness that age discriminators no longer work. Child caregivers, and today there are millions of them all over the US, need recognition and support.

Connie Siskowski, RN, PhD has a broad background in health care and a dedication to diminishing caregiving ramifications for family caregivers of all ages. Her passion led to the establishment of a nonprofit that evolved from supporting homebound adults and caregiving families to become the American Association for Caregiving Youth.

American Assoc. for Caregiving Youth

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3 Comments

So true! Thank you for pointing out that caregiving has no age limits. It is a tragedy for any youth to have to give up so much of his/her childhood to grow up quickly as a result of caregiving. They need support in order to get their education, to develop bonds that will help them cope with adulthood and to enjoy their youth - at least to some degree. American Association for Caregiving Youth is a great start! All family caregivers need support from their own family, friends and local governments in the way of services that do not discriminate based on age or income.
File for adult disability for your Mom and receive help through Medicaid..
caregivers may consider going to local Senior Services Centers within their county and city government for advice and direction, and possible supportive opportunities. Check to see if Aging True services are available, they may have Social Workers available and may have pathways to community resources. If parent is a Veteran, VA service Center reps may be helpful.

Admittedly, it is overwhelming, no state, county, city, community are the same, and if remote from a metro area, can be even more difficult.