Respite Care – Are you kidding me???

Ok, so here goes a rant on the idea of “respite care.”

So, you have a special needs child who requires some amount of in-home nursing care.  The idea is that the nurse is supposed to come in and help with feeding, bathing, toileting, some light household cleaning, etc.  In some cases, the nurse(s) from the agency are supposed to be able to come in and stay in your home to help take care of the patient.

Now, before I go any further, I have to say that there have been a few nurses that have helped out who have been angels to come in and work with my child.  The vast majority, however, are, in my opinion, just doing what they can to get by.  So while the fact that they show up helps, you have to stay on them to make sure they are on time, not fudging their time-sheets, and taking care of all their responsibilities in the care plan.  The best nurses, fortunately for them, unfortunately for us, are the go-getters and are using their certification as a stepping stone to move on to their nursing degrees.  I can’t fault them for that, but it doesn’t help my situation any.

As part of nursing care, there is a concept called respite care.  This is where you are supposed to be able to leave your loved one/child in the care of an individual who is supposed to take on their care as if you were doing it.  It is done so that you can rest and recharge so that you can come back refreshed and able to handle the care longer.

The problem here is that the same people who you are having to supervise that they are doing the right thing are the same people that supposedly will come into your house, stay in your house, and watch over your loved one while you are gone.  I don’t know about you, but I don’t know that I can let someone I just met stay in my home with only my child, who can’t talk or walk.  I know the agency has insurance and does background checks, but to be honest, I can’t think of too many of the nurses we meet that I could trust based on their performance when I am watching.

So, respite, is having someone that you don’t know stay in your home with your child by themselves while you go out…and you are supposed to relax.  RIGHT!

Then you have these “seminars” to help you learn how to let go a little and take some time for yourself.  But yet the whole time you are at the seminar, you are thinking about what might be going wrong with your child under the care of some unknown (to me) person, alone in my home.  How does this help?

Unfortunately, under most plans, you can’t even take your child to a respite center like you can with an adult.  So, it is an all-or-nothing ordeal.  If I want to place my child in respite care, well, then, they have to now reside in the facility.

I just don’t understand how you can get rest and relaxation under these conditions.

This feels completely like a full-on catch-22 situation.  Damned if you do, and damned if you don’t.

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