Necessary Evils in Three Parts.

It sucks. It sucks in every way that you would think that it sucks and in about a thousand ways you couldn’t even imagine until you’ve been there. It sucks in ways that even those closest to us won’t fully understand and those farthest away can’t even comprehend. It sucks to need home care nursing.

I’m not going to try to find a better word for it. It just plain sucks.

It sucks to feel like your ability as a parent is being called into question when you’re told that you will need home care nursing before you have even gotten your child home. To feel as if you can’t take care of your own child as a family. That someone needs to be paid to come in and help. It sucks even worse when you realize that it’s true. That although we are perfectly capable of taking care of Liam, and he is much safer in our care than anyone else’s, that the 24/7 grind of seizures, and ventilators, and feeding pumps, and medicines, ultimately will wear us down to an exhausted mess.

It sucks to have a stranger in your house. I like my privacy. I like relaxing and being comfortable in my own home. If I have to behave in any guarded way in my own house I get cranky. It sucks when the only nights you get to share a bed with your wife are the same nights that you have someone who is essentially a stranger sitting awake one floor below. It sucks to have to whisper. It sucks to worry that if you raise your voice in an argument the rest of the nursing company might hear about it. It sucks to have a small cozy home with only one bathroom that shares a wall with Liam’s room after burrito night. If a man can’t be comfortable on his throne where can he?

It sucks to worry anyway. To spend shift after shift watching a new nurse, hovering in the doorway, or laying awake overnight listening for ventilator alarms negating any relaxation they are there to provide. To meet 5 nurses who seem barely competent for every one who instills any confidence. To then lose the good ones to office politics, or geography, or a cat allergy and then wait months for the agency to hire someone with the training that Liam requires. To then have the insurance company cut back your hours for lack of use, not really caring that it was because the agency didn’t have anyone hired and not because we didn’t want them.

It sucks to have to run my own family’s plans through a nursing company scheduler who has no understanding the impact her job performance has on what we as a family can or cannot do. To be given attitude and lectures for changes or demands. To be scolded for discussing scheduling changes with the nurse that it would affect because it disrupted some kind of office protocol.

It sucks to have to compromise. To have to take a chance on a nurse with little experience in a trade for respite and a bit of sleep. To have to weigh a bargain between our own well-being with Liam’s safety. To have to settle for whoever decides to answer the want ad in the paper when most of the nurses go on to hospitals, doctor’s offices and other institutions.

It sucks to find that perfect nurse. The nurse that just fits. The nurse that while having the skills necessary to care for Liam also has the personality to understand our plight, our privacy and our need for respite, not more stress. It sucks to find that nurse and lose them to another job or their own family obligations. It sucks to have Liam’s school schedule be impacted  by that perfect nurse’s schedule. To worry every time that Liam is admitted to the hospital for a long-term stay that they will be forever lost to another case, because it is just a job to them. They can’t be waiting 6 weeks for Liam to come home to work.

It sucks to have this nagging doubt because of their looks or questions when talking to acquaintances and co-workers about nursing that they think it must be so easy. That having “free” “babysitters” every day means Karin must have so much time for herself. It sucks to have it come up in conversation at all. People who’ve never seen it don’t understand. It sucks to know that some of the nurses themselves don’t even understand. I know it’s your workplace, but you are in my home!

*****

For four years we never had nursing on a Tuesdays.  Frustrated by watching nurses care for Liam in the hospital the first 9 months of his life, we decided soon after taking him home that Tuesday’s would always be Mommy and Liam days. But we also wanted Liam to eventually attend school five days a week and so Tuesday nursing was needed.

We had nursing on Tuesdays for less than a month about two months ago. I’m not so sure we will again anytime soon.

Just when we thought that having nursing couldn’t suck any more a new level of sucking rained down upon us when Karin stepped out of the shower to hear her name being called and Liam’s ventilator alarm beeping loudly along. Charging into his bedroom Karin found Liam’s nurse, her third week on the job with us, frozen in panic with tears of fear in her eyes. Liam lay in his crib blue and unresponsive. Within seconds Karin had shoved the nurse out-of-the-way, assessed the situation, put Liam’s trach back into place, hooked up the ambu bag to direct oxygen and revived her son. In front of the licenced professional being paid to allow my wife time to do things like take a shower. Every day since I think about how lucky we are that Karin was only in the shower and not out grocery shopping or picking up Liam’s prescriptions.

The nurse still in a panic and unable to think of what to do next, Karin sternly told her to call 911 (so that the paramedics could come out to asses if they thought there was any lasting effects) and then to get the fuck out of our house and never come back since you almost killed my kid. That action the nurse was able to do. So quickly in fact that she left behind her glasses, and was to afraid to ever ask for them. (we sent them to the agency for her anyway).

I’m not mad that Liam’s trach popped out while she was changing Liam’s trach ties. It happens. It’s happened to anyone caring for a kid with a trach. I’m mad that this “nurse” didn’t know what the procedure was for its (inevitable) occurrence. I’m mad that the nursing agency’s training program saw her as able to care for a child with medical needs as complex as Liam’s. I’m mad that my wife has gone into sweats and relived the moment that she saw a blue and lifeless boy in Liam’s crib every time she hears his vent alarm go off and she isn’t in the room. I’m mad at how hard it is going to be to try to trust a new nurse ever again. I’m mad that even though I called their office  from my own to tell them why that nurse would never be going anywhere near my child again, no one from the agency ever called to check on Liam. To check on Karin. To tell her that they were sorry for the pain, and stress that this has caused. I’m mad that there is a file in that office somewhere that has notes on whatever story that nurse gave when she went back to the office but doesn’t have a single word of what happened from my wife’s point of view.

I’m mad.

I’m mad at the amount of guilt that both Karin and I have beat ourselves up with. That maybe we should have been a bigger part of her training before realizing that if you say you can care for a trach/vent patient you should already know how to check whether or not a trach is even in place. I’m mad that my wife now feels guilty at the thought of leaving Liam with anyone else even more than she did when he was a baby. I’m mad that I didn’t notice something in that nurse’s first three shifts to red flag me to fire her  before anything like this could ever happen.

And I didn’t think I could get any angrier.

*****

Then a news story came up last week. If you don’t want to click-through to the link I’ll give you the highlights.

According to police, a Cranston couple went out for dinner Monday night and left their nine-year-old disabled son with a caretaker. When watching the child through the home video monitor on their cell phone, the couple discovered the caretaker reportedly abusing the boy.

….

According to two Cranston officers who viewed the footage, the video showed Faneuf grabbing, shaking, and twisting the child’s left arm while he was lying in bed. It also shows her grab the child’s head and the side of his body, sit him up, then slam him down on his back, police said. The video also showed her hastily wiping the boy’s face.

When the couple examined their son they found bruises on his forehead and arm as well as a blood spot on his eye, according to police.

It’s a story that made me sick to stomach. Sick to my stomach before I saw the mug shot and read the name and recognized the nurse as one who had cared for Liam two night’s a week for three or four months last year.

Liam is fine. He is doing well with his therapies. He is more aware and alert as he has ever been. He is growing like a weed and medically as stable as he has ever been before. Let’s just all keep that in mind because whenever I think about this situation, I keep having to remind myself.

We never saw anything suspicious or any signs of abuse. She has not cared for Liam in almost a year.

Liam.

Is.

Fine.

But what did we miss during those four months? Upstairs, selfishly trying to get a full night of rest with my wife? Did anything like this happen to Liam but we never knew? Liam can’t tell us where it hurts in the morning. He can’t tell us if it hurts at all. Were there signs that we had missed?

(Oddly enough, at the time Karin and I had decided while she was on a vacation week to fire her from Liam’s case because we didn’t think she was making any attempt at connecting with Liam at all. As if he was just the inanimate object she had to watch for eight hours. It was enough that we didn’t mind sacrificing the weeks of sleep we would do without waiting for her replacement. The agency let us know that she had put in her notice with our case anyway. That she was moving on to a case closer to her home. Well that worked out, I guess.)

And  that’s were we are. I don’t know what to do next.I don’t know how to process what could have happened because I don’t know that anything did. I’m angry at the thought that it might have. I’m angry that it may have been going on and we weren’t there to protect Liam, since he is unable to protect himself. I’m angry that monsters who would be willing to do anything like this to any child let alone a disabled child unable to protect themselves or run, or scream, even exist and that someone who may be capable of it was in my home.

We are down to only one nurse now. Luckily, this one is that perfect fit. He connects with Liam, He connects with us (just as important) and he is wonderful with Liam at school, constantly encouraging and ensuring play and interaction with all of the other students, but he can only work so much. We have no more night nursing and, well, there’s that Tuesday shift. We will have to take on a new nurse at some point whether it’s for a few nights a week so that Karin and I can sleep again or so that Liam can go to school all week which is still the ultimate goal.

I just don’t know if I can do it. I don’t know if I can put on a fake smile and meet someone new. To trust another nurse. To trust the agency when they say, “oh, she’s/he’s a great nurse, lots of experience.” To explain why it does matter if Liam’s circuit lay upside down (moisture collects in the sensor tubes) or why his cuff needs to be deflated when he fits his Passy-muir valve (closes off the air around his trach with a one way valve and suffocates him) and why we don’t want diastat given at exactly five minutes of seizure length no matter what your nurse’s notes and the orders in the chart read (many of Liam’s seizures will resolve on their own when allowed. If it’s getting stronger at 5 minutes then of course but there are shades of severity that can be hard to explain).

I don’t have the energy for it. I don’t have the trust for it. I don’t have the words or the inspiration to turn it all into a happy ending or a moral for patience and perseverance. Instead, I have a whole lot of anger and resentment towards it all and I was hoping that writing about here might help with that.

I guess well see if it does.

Like I said, it really sucks to need home nursing.

11 comments

  1. Thinking of you guys. I was just discussing this topic in terms of any and all humans who require home care nursing and how terrible services generally are….why is that?? Something has to shift….

  2. I’m so sorry you and Karin have had to experience all this. You are both exceptional ( beyond that even, but I don’t have the right word) parents, I do pray that God will continue to fill you both with all the strength you need; and I do hope you have been helped, even a little, by writing it all down and shareing it with us. Love you all ,Grandmama & Grandpa Andy

  3. Wow. Dude, That doesn’t just suck. That F*****G sucks. I just can’t fathom it, can only wish that somehow you weather the storm as best you can. Peace and love, bro.

  4. I read this whole thing with my heart in my throat and my blood pressure steadily increasing. I listened and I felt your anger and your pain and fatigue. I can’t say that your particular situation is familiar to me, but certainly the anger, the hopelessness and the sheer weight of it all is very well known. And it’s very healthy to say it all, to get it all out, to give it the fucking weight it deserves. The only thing I would argue about is calling yourself “selfish” for wanting a night’s sleep. You must know how absurd that is, but in case you don’t, I’ll tell you. This time will pass. It will pass. I will send that out to the fucking universe — that it will pass. I’ll also send you and Karin and Liam love.

  5. I am a speech therapist who used to provide EI services to a child that sounds similar to Liam. I often asked myself questions tha you answered. How does this family deal with having all these strangers in their home? How do they find the strength for the next day? How do they deal with the red tape?

    I came away from that weekly hour exhausted and feeling helpless, which made me marvel even more about the parents’ resilience.

    I truly feel for your family, and wish that wonderful people continue to come into your life and home to ease the day to day grind, and give you the rest and help you deserve.

  6. I so feel your pain. My son too has complex medical needs, and he now requires at night, can’t talk, or do much for himself. We rely on home nursing care and I too feel its a double-edged sword in a way. I’m a single mom so without the nursing, so without that help, I couldn’t do the most basic of things either (shower, shop, sleep, etc.) And let me just say that when I read the article, I balled, and could not sleep, just thinking, “what if this has happened to my boy?” … I don’t have any words of comfort for you, but I take comfort in knowing that there are families like mine, who are struggling with the same fears, selfish as that may sound, I hope your family too, finds comfort in knowing you are not alone…

  7. One day, an advisor to President Abraham Lincoln brought to the White House a man whom he thought Lincoln should appoint as a cabinet secretary. The President met with the man and interviewed him. After the guest left the White House, Lincoln called his advisor into the Oval Office and said, “This man won’t do for the job.“
    “ Why not?“ the advisor asked.
    “I don’t like his face.“
    Positive experiences affect our faces just as negative ones do. After Moses descended from Mount Sinai, it is not surprising that the experience changed his face.
    In my rabbinical work I have come to know quite a few parents of handicapped children.
    I am fairly certain that I could now recognize such a parent in the street. Any mother or father who has lavished selfless love and devotion upon a child over a period of years will come to possess a face that shows it.
    Learn to trust your ability to read people’s faces. Will you always be accurate? Of course not, but just like riding a bicycle or making an omelet, practice will improve your odds for doing well. When you encounter an individual with a truly refined-looking face, enjoy the treat. You are meeting someone special.

    – Rabbi Daniel Lapin
    “ Buried Treasure ( Secrets for living from the Lord’s language)“

    1. Hey Steve, since you wrote a book whose subtitle suggests the act of living from the Lord’s language, you might want to pass it along to the Big Guy, and take heed thyself, that a lot of us Special Needs parents with the easily identifiable faces don’t really care for the term ‘handicapped’ anymore. Unless maybe you are talking about your golf score. Thanks bud! 🙂

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