Desperate times call for… what? Well, sometimes the answer is desperate measures. Although, my experience is creative thinking is often the better way to go.
Unfortunately, when it comes to home health care, these are indeed desperate times. Matter-of-fact, they have been since the beginning of Ryan’s brain injury. Some might remember the ongoing issues I had with the therapy companies. For those who are new to the website, let me explain. The reality is that most of these therapy companies wouldn’t even take Ryan as a patient. They said he was too high risk. They said he was beyond “practical” help. They said they are not knowledgable enough to treat him in his condition. Those companies that did take him on quickly dismissed him (usually within three months). I went through three before realizing that I need to step in and handle it on my own. One dismissal cited he “reached his goals”. Another cited he “didn’t reach his goals”. The third bailed when his femur was broken during a therapy session.
Funny. It was never the actual therapist who quit on my son (although I was quick to show the door to a few). They loved and admired him. I could see it in their eyes.
The problem was the therapy companies. He was a risk they would rather not take. You would be pissed if you knew what we went through! What the heck, let me share a post about just how wrong it is from as far back as April 2011. Go ahead, click on this article (It’ll open in another browser window so you won’t leave this post): Capital Home Health Care Employee Admits Wrong Doing and Company Pressure.
Desperate times are equally affecting the home nursing industry… and it has gotten a LOT worse over the past couple years. First, I can tell you who is not to blame. The loving, caring nurses (usually) are not the problem. Some Nursing companies are to blame, sure, but not in most cases anymore. They are struggling to find nurses in a big way especially overnight. Oh, and especially those who are certified to handle atypical patients (e.g., Ryan, those with trachs, those who require narcotics pushed, those on ventilators, etc).
Ryan is the picture of physical health. I had him removed from a ventilator when they told me he would forever be attached. They told me he would always have a tracheotomy to protect his respiratory tract. It’s gone… and has been for 3-½ years. They told me he would need morphine, baclofen, propofol (of Michael Jackson notoriety), and pain killers for his torment, neurological storming, and spasms. Hell, I can’t even remember the last time I gave him a single Tylenol.
Ken describes Neurological storming (also known as “brain storming”) as the mind and body in chaos. It is life threatening each time it happens. The brain’s neurons fire uncontrollably and seizures are never out-of-the-question. The body contorts in unnatural positions. Every muscle in the body having a spasm all at once. Blood pressure reaches stroke levels. Core body temperature rises and falls to extreme levels in little time (Ryan actually went to 109.8 degrees once and was so low we couldn’t get the thermometer to register! (Yes, that right… one-hundred and nine). Respiration, that is in the mid-teens for most people at rest, goes above 90. Heart rate, normally around 70 – 85, teeters on cardiac arrest; exceeding 180 beats per minute. Ryan spent 3 months in this state for up to 18 hours a day).
Yes, Ryan is unique because he’s in a comatose-like state. By most people’s thinking that should mean he is priority in getting care… not last, for the love of Pete! Eh, it doesn’t work this way.
So, you ask, what’s the problem? Easy. It’s and ineffective industry that is trying to operate under the thumb of severely flawed national health care policy. It’s bad, and it’s getting worse. Don’t get me wrong, I’m not blaming any one administration. I’m blaming them all since the 1990’s. Unfortunately — and like almost everyone else — it’s not a problem until it hits home personally. What can I say? I bought into the rhetoric and I blissfully ignored it, just like I bet nearly every one of you, until it happened at my front door.
So, here’s what’s happening. We are having a hell of a time getting reliable, consistent nursing coverage to help us overnight. It just keeps getting worse because of the health care employment laws that have (or soon are) going into effect. It’s causing nursing agencies to struggle. It’s causing nurses to bail out of home nursing. In the end, it’s the patient that suffers if there isn’t a family member looking out for them. It’s always the family that suffers when they want to care for a loved one at home.
The most recent example is just in this month of September. Without advanced notice, a nurse dropped one night per week with us to pick-up another shift at a local hospital. There were no nurses to backfill so there were shifts that went uncovered. What made it worse was this was the month Sue’s job demanded extensive travel (budget season). She was gone for two work weeks straight and 3 to four night in the remaining weeks.
October isn’t lining up much better. I see that there are at least two nights uncovered in the first fifteen days.
It’s killing me! How many more times can I spend thirty-six uninterrupted hours without sleep? So far my exhaustion hasn’t affected Ryan but it’s just a matter of time before I have nothing left in the tank. Then what? In one case I went sixty hours without sleep. I’m not proud of it, but yet I am. Weird.
Thank goodness we had kind people help us on a couple of those nights in September! But, one night we called four people and they just couldn’t. The other two nights I felt guilty for asking (again!) and plowed through it. People tell me to just ask for help when I need it (and I mostly do), but I’ve lived this nightmare long enough to know that I simply cannot ask too much. Otherwise, people become scarce (the go to response is “I’ve been so busy with…”) and I don’t blame them one bit. If the shoe were on the other foot, well, I probably wouldn’t commit to anything longterm either (if I didn’t know what I do now, that is). We all have our own problems and no one can be faulted for tending to theirs first. I’m thankful for all the help we do get because it’s more than I ever could expect.
Sometimes I think it’s something akin to a miracle that certain people came into our lives.
Okay, so there a few ways I can deal with this. First, I could whine about it, play the victim, and do nothing more. Tempting, yes… but no. Second, I could try to change national policy. Ah, no. Third, I could use Ryan’s Special Needs Trust Fund and throw money at bringing people in. Absolutely not! I would never use money that people donated for Ryan without zero other alternatives. Or, fourth, I can work toward a solution with what’s going down inside this house, by offering something other than money, preserve Ryan’s Trust, and hope others will learn from my approach.
I choose option four. It’s potentially immediate, practical, and cost-effective…. if I can pull it off, that is.
I’m still working on the details, but here’s the gist of it. We offer free room and board — with a few other incentives that we can manage — in exchange for up to two to three nights of care for Ryan. When this care is not needed in a given week then the individual could aid in a support role (e.g., sanitizing therapy equipment, picking-up prescriptions, etc). Perhaps this could even be a nursing internship program? I just need to train the right person, be it a nurse or other.