Yesterday my husband and I attended a live broadcast of “Think Out Loud” at the NPR station in Portland. The show was about how people face the challenges of caregiving.
Alex and I were very moved by the people we met and the stories we heard. Dave Miller, the host of the show sat at the front of the room with three panel members – an older man, an older woman and a pretty blonde woman in her thirties. At first glance you would think Joey (the young blonde) had never even had a bad hair day.
Turns out Joey has an 11 year-old daughter who has a severe form of autism that requires 24-hour a day care. This child cannot walk or use her hands. She has an adolescent form of SIDS (sudden infant death syndrome), so her breathing has to be monitored day and night. The only way she can communicate is to scream.
For a number of years Joey and her husband tried to manage their daughter’s care on their own. As you can imagine, their marriage landed on the rocks. She said she wanted to leave her husband, but she couldn’t get a divorce because she needed his income and his physical help. Finally, they found a program that provided paid respite care for disabled children, which allowed Joey to get some sleep, go back to work outside of the home, and have a date night with her husband once a month. Respite care saved their marriage and provided the support they needed to keep their family and sanity in tact.
As we listened to the various people tell their stories, it became obvious that the individuals who were getting regular breaks and respite care were maintaining their emotional equilibrium and managing extraordinarily difficult situations with a reasonable amount of calmness and acceptance. On the other hand, the individuals who have assumed 100% of the responsibility of caring for a loved one appeared to be tense, angry and on the edge of physical and/or emotional collapse.
That’s why I’m on a crusade to find out more about respite care programs. I want to know what’s available, where to look and how to apply for free or low cost respite care. If the government’s goal is to reduce the cost of Medicaid, it seems that the simplest solution would be to support family caregivers and keep them healthy so they will have the strength and ability to continue to care for their loved ones at home.
I’m going to start doing some research. I plan to compile a list. If you are aware of a program that provides low-cost or free respite on a state-wide or national basis, please let me know so I can share it with others.
In the meantime, I hope you’ll find a way to take a break and get a little rest!