I?m not trying to start a respite care war, but I think this is part of the fallacy about home care and caregiving. The idea that there are easy to use or even not so easy to use services out there really isn?t true when it comes to conditions like high level quadriplegia, ALS, and various others.
I just have used the respite locator service and basically the service provides you with a list of home care agencies in your area. We already use a home care agency for approximately 50 hours of care a week. Getting set up with an agency isn?t just a phone call. There is an intake process, a care plan established by your physician, and also the issue of identifying and training appropriate caregivers. It?s not like you can even call up your own agency and say hey my dad?s in the hospital come on over, or my sister?s in labor hurry it up. If you are not on the schedule which was contrived a month in advance, there is no way you can get a spur of the moment caregiver. It just doesn?t work like that. Even being clients for the last 5 years and private paying for home care services, we still have regularly scheduled shifts that go unfilled for various reasons. In nearly every city, there are more patient hours than available caregivers.
If, let?s say, I would need to be away for an overnight, I would start working with the agency at least 4 months in advance to get this scheduled which is above and beyond our regular hours. Plus, there is certainly a major cost factor involved using agencies. In my case, state law dictates that only a skilled caregiver, if hired through an agency, can perform services in our home due to my husband?s condition. 50/hrs a week equates to over $100,000/year. Not many can afford these types of respite services. We choose the agency route for various reasons, mainly extended care coverage my husband holds which will reimburse for a percentage of skilled care an agency provides. We are lucky to have this policy. Most people do not and could never afford the expense of so called respite care
Maybe this illustrates my entire point. There is no entity that can provide spur of the moment care to cover the things I am lamenting about here which is missing various critical, non-planned moments in the lives of my parents, siblings, and children.
It?s not just me that has a lot on my shoulders. It is all of us family caregivers. I am not unique in my situation. Look on the paralysis map. For so many of the orange pins, there is at least one or more green pin standing in the shadow of that orange pin. The green pins are suffering right along with all of those orange pins; we just aren?t on the map. In fact, we are on nobody?s map.