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.
All wonderful ideas above!!! Keeping fingers crossed this will work out for you!! Another possibility might be a retired military medic looking to earn extra money or somewhere to live.
Praying that GOD opens doors for you enabling you to find the right care for our Ryan.
Also praying that GOD opens any hearts surrounding you so that only the most caring of individuals steps up to care for Ryan.
And above all else, praying that GOD only sends you the most competent of people so that Ryan has the best medical care possible.
Always. Forever. Until.
With love and in prayer,
Keri, MY C.F. FRANKIE and Family
Thanks for posting this … I’m in a similar situation with my brain injured (from birth tho’) 18 yr old son & I’m grateful to my church family that has supported my family so much for free!! 🙂 As a single mom I have to work AND be the full time caregiver … God always sends everything/everyone I need!! Always praying for your sweet family!! Good job Dad!!
You, Sue and especially Ryan deserve so much more (reliable) support than you’re getting. We are keeping this great need in prayer and really are here for you <3
i completely understand your struggle and sympathize w your family so much. a close friend was paralzed, quadriplegic in jan. she has a nurse 4 hrs a day!!! thats it,cant get any govt assitance. its horrible. i am so very sorry i hope something will come along and pray God will put the right person in ypur path for Ryan’s sake.
Leann, since she is disabled now she should be able to qualify for disability and some health care options. If she is in Loudoun Cty or Northern VA there are some organizations that can help. Area Center for the Aging, LEND: http://www.ecnv.org/LEND/lend.html … what level is she (C?), complete or incomplete? email me rhonda dot morin at gmail dot com. She might need an attorney to get her disability but quads are pretty much an easy process unless she gets retirement or got a settlement of some kind. She is a newbie and if she is incomplete, with really good therapy (like what Ken is doing for Ryan) she will get tons of function back. My father in law was standing and walking on parallel bars, walking quad, it’s incredible.
Rhonda, I will email you. Thank you so much 🙂
Couple things to keep in mind:
1. I would highly recommend video’ing Ryan and the little things he does so whomever you end up with can watch and speed the learning curve. I also BEG you to not hire a company called Seniors Safe at Home. The guy who owns the company is Gordon. THEY SUCK! Laaaaazy!
2. I also highly recommend you have a “nanny cam” so anyone who comes in is watched for potential harm to Ryan. I have seen some douseys.
3. If you aren’t looking for someone who can give shots (well even I can do that), start IV’s (nope!), or clean trach’s/vent’s then a person trained by you could do this. I assume either you or an actual RN comes in and replaces his feeding tube and any bladder cathing materials on a regular basis. Things like clearing lungs, palpitating bladder, and looking for changes are easy things to learn.
4. Have you thought about working with someone like a nanny type situation? If you have nurses coming in certain nights of the week (assuming insurance pays for this) you could cut them back and have someone there say 5 nights and only need to hire the nurses for 2 nights. But I don’t know how you are getting your care right now.
5. Check with Nova and the local schools for people training to be RN’s.
6. As far as ongoing daily care for Ryan and nursing, I can’t recommend Linda at Inova Home Health any higher, she is in Ashburn and SOOOOOOO amazing! Request only Linda. She is no nonsense, goes out of her way, is an RN, and no question is stupid with her. She is incredible!
7. Make check lists of what the person needs to do overnight and tasks that need done every single day so they get done – the overnight person can do things like cleaning equipment, broom sweeping, cleaning the bathroom, restocking supplies, cleaning urine bags/etc. all while checking on Ryan overnight.
Ken, I have told you that my husband and I would do this for you. We are not taking care of his parents any longer and we are looking for a new “gig.” We are not nurses but we have cathed a man, palpitated the bladder, done a bowel program, watched for pressure sores, cleaned pressure sores (not me but my husband), used the Hoyer, dressed someone in bed, repositioned someone in a wheelchair correctly, and I was given a nursing book about spinal cord injuries, the one used for testing and I passed it all. I don’t sleep at night anyway and I just had a dream this morning that Ryan woke up. 🙂 He was really sweet and charming, which I am sure he is. 🙂
If I think of other things I will let you know. 🙂
Actually, we have video cameras all over the house; one of which is directly on Ryan while in bed. It works even in a pitch-black room. We have a list of, well, everything. It’s almost like an owner’s manual that details everything. Do you know which nursing agency Linda works for?
Linda Arundel works for Inova Home Health, (571) 432-3100. I think you can only get her through insurance. She comes in and does what she needs to do and out she goes. They do have physical therapist and OT people but the PT girl is worthless and if you get one of the two OT people that rock you would be good to go. I just don’t know if you could get OT, my father in law called the one OT Nazi, she always knew if he didn’t work. You need to get one of Ryan’s doctors to write the order. You can also get a personal assistant type person that can do things like bathing, shaving, helping out with small things but they are paid through insurance. The doctor has to write the order. http://www.inova.org/healthcare-services/senior-services/after-your-hospital-stay/home-health-care.jsp
Linda could come give you a good check up on Ryan every week, deal with all the things that need to be done that RN’s do and help you with questions about things to try. She really cares about her patients and is NO NONSENSE. She will tell you how it is. I love her.
Funny about the video’s over Ryans bed and his “operations manual.” I did this for my father in law so people knew, put on 2 sets of gloves, move the trash can to the left side of the bed, peel one set off, put on another set…. it was completely anal and for us doing it over and over we didn’t need it but if something happened and we couldn’t be around anyone could pick it up and run the house, him and deal with my mother in law.
If you can record from the camera over Ryan’s bed, it will set you far ahead in training someone because you can show them and say if he does such and such, do this, if he does that, call me or deal with it this way. I am desperate to come see how you have everything set up.
I would even have lists set up about stock and supplies: if the urine bags are down to 3 order from here, meds need refilled on XYZ date, if gloves are down to one box of each size order this amount from this company. That way you could have volunteers come in and help with stuff like that or picking up meds, etc.
I would think he could get free meds if he still takes them (for a single person most pharmaceuticals say you have to earn less than $21K or something per year, and I assume he gets some kind of disability so he would qualify). You can go through the drug companies themselves OR through RX programs. The 2 I use are http://pparx.org looking for freebies but if you have to pay http://xubex.com has the best prices. You just have to have the docs write the RX’s the right way, 3 month supplies with 3 refills for the year. Astra Zenica has been my favorite big pharma to work with.
Put out whatever other needs you have and we collectively can help you. 🙂
This is a great idea, hope the right person comes along. This would be a good fit for a LPN who is working on their RN. Try the local community college nursing program or nursing schools.
I would want a 4th year student or a student who is a LPN working towards an RN. I am teaching clinical nursing now and beginning students are timid and clueless unless they have been nursing assistants.
I agree that this is a great opportunity to learn so much about patient care and the interplay of their family.
Praying for you, and for the right person to come along.
Ken, What kind of skills set does a person need to help during the night?
I would need to train them personally, but a basic (or developing) skill set of nursing. A while back we worked with four people. The problem is, it takes many nights to get it down. The person has to know Ryan’s signals… and this doesn’t come easily.
Praying you find just the right person !
If only I were closer ! I would love to help ! I hope things get better for everyone ! Hugs to you all .