So Damn Mad that I Feel Like I’m Going Mad

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I’m so damn mad that I sometimes think I’m going mad.

I have better chances of winning the freaking lottery than accessing quality home health care nurses to care for my son. Without home health care, I couldn’t work. Without home health care nurses with him, he couldn’t attend school. Without home health care nurses assistance, I couldn’t get him to a doctor. Our choices are to turn him over to one of those horrible children’s nursing homes (which are mostly like nursing homes for senior citizens—you go there to die) or put up with home health care nursing.

What people don’t understand about having home health care nurses is that they are only required to feed Will, give him medications, and toilet him. That’s it. They don’t have to talk to him, they don’t have to interact with him, they don’t have to engage him at all. He sits in his hospital bed in front of a television. The best I can get most of them to do is change the video when he’s upset.

There are those few and rare good ones who will interact, even play with him, but most of them do not. And they don’t have to.   He’s a patient, not a child to them. So, I hire someone to come over for four hours every day to either do therapy with him or engage him in developmental play.   More than half of my summer salary goes to hiring other people to 1) make sure the nurses are doing their job and caring for him correctly and not destroying my house and 2) interact and engage with Will positively. And I’m grateful and privileged I can even do that. I know of many families whose child stays in bed all summer because they don’t even have a way to take them outside and they don’t have a mobility van to even take them outside the home.

And with the home health care nursing shortage, there isn’t even a choice anymore between the good ones and the bad ones. There are just the ones or the nones.

On Will’s last week of school, his Wednesday nurse quit, gave neither me nor the company any notice. Grown, professional nurse with three children of her own. Will liked her, had even become attached her. They do this often. They just leave. They never even say goodbye. He doesn’t understand he’s a patient to them. He thinks they actually care for him as a human being. We actually start to think they give a shit about us too. They are in our space, in our intimate home. They know everything about Will and too much about us. And then they just use us up and leave.   Emotional vampires.

And the nurse who is here on Tuesday and Friday decided to take three weeks off for a vacation. I wish we could take a family vacation, but we can’t find something close that is both affordable and accessible for Will.

This week, finally, a new Wednesday nurse oriented, and she opted to not take the case because my husband intimidated her because he didn’t smile the entire time she was here. He kept his head down frantically trying to get caught up from taking the part of the day off to take Will to the doctor. He wasn’t aware that he had to put on a dog a pony show. He was able to work from home that day and the two nurses spent four hours sitting on the couch we so rarely get to sit down on, swapping their life stories, paying little to no attention at all to Will unless he needed toileted or fed. He’s just a patient, a body to them.

Maybe I should take out an ad:

Happily married for 20 years, professional couple seeks competent nurse to care for their delightful, sunshine son who has severe cerebral palsy and autism who has had 37 surgeries in 14 years and who has come back from death three times. Our home is clean and you can make yourself comfortable while here as long as you pick up after yourself. Please don’t talk on your phone all day. Please don’t play games on your phone all day.   Please don’t read all day. Please don’t fall asleep on your shift. Please don’t take him out in our van and then leave him in the van with it running while you run into the CVS to buy a cold soda. Please don’t break his ankle when you take him out on a walk because you forgot to fasten his feet in. Please don’t let him fall out of his wheelchair because you didn’t fasten him in. Please don’t bring your family drama into our home and ask us for financial help. Please don’t steal from us. Please don’t overflow the toilet and leave it and ruin the floor and the contents below in our basement. Please don’t complain to the agency when our lift isn’t working, we are short on supplies, or the wheelchair brake goes out because we are trying to get those companies to do their job too. We advocate for our child all the time. Don’t expect us to be perfect human beings. We work full time and are under constant stress from managing Will’s nine pediatric specialists, feeding supplies, and nursing care and our jobs. Please give us some grace. And please treat our home like you would your own or better. And finally, please do care for our son both medically, professionally, and personally. He’s our child, not just a patient.

Oh, and we also like long walks on the beach….so we might ask if you could let us have a rare lunch or dinner out, just the two of us.

*And yes, all of those things have happened to Will and to our home with home health nurses.

Home health care nursing agencies and their nurses have all the power. Home health nurses are in such demand that they can come and go as they please. They can choose which agencies and which families to work with and for. Supposedly, we families can choose our nurses, but that’s not really true. Our choices are extremely limited. If Will has a bad day, they start fishing around for other cases. If we aren’t all rainbows and unicorns, they complain to the company and again, start looking for other cases.   If my house is perfectly clean or my laundry isn’t caught up, they let me know. They compare families and cases. I even know of a family that does give their nurses money on the side just to keep them. This is illegal and not allowed and If I had that kind of money, I’d hire who I want and say “fuck it” to this bullshit, broken system.

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I get so damn mad that I feel like I’m going mad.

This is my house. This is my child. This is my life. You would not want me coming into your home and treating your child the way you treat mine.

Things are 100 times better than before we had Obamacare, but we have a long way to go. Nurses shouldn’t be able to attend non-accredited schools with little to no admittance requirements and who don’t even practice clinicals. We have had several nurses who can’t even change a Gtube or put in an IV. My husband and I can do that with Will.  Nurses should have to engage in professional development and ongoing education. Nurses should be compensated more. The whole system sucks, but right now it’s the only shitty system that we have, and we families are trying to even hold onto the shitty parts of it.

I am privileged because I do get to work and I can supplement Will’s care, but still, I make half the salary I used to make because I’ve had to take a job that pays me less and doesn’t let me do everything I want to do so that I can be at home more with Will. I know that having children and being a working family is hard, but let me tell you folks who have typical children, it is about 200 times harder when you have a medically fragile child.

 I get so damn mad that I feel like I’m going mad.

 

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