Choosing a Rehab for Stroke

Inpatient vs SubAcute
The first most confusing thing I had to deal with inpatient vs subacute rehab. All I understood was that inpatient rehab was going to be 1-2 weeks and subacute would be nearly a month, naturally I thought longer = better. But inpatient was more high intense therapy and in an actual hospital type setting. I didn't feel like 1-2 weeks was enough... So at first I chose subacute. After touring these facilities and realizing they had no way of dealing with my dad who was a major fall risk, had no idea he couldn't walk so he tried to get up constantly, I ended up switching to inpatient.

I was told be secret sources to remain unnamed to do inpatient for as long as possible, then when they start talking about discharge, freak out about having to take him home and they can suggest he continue on to subacute rehab. They said 9 times out of 10 it works....

I didn't end up having the play that card because after a week and a half in inpatient (plus a week of the flu while there) it was decided my dad needed much more therapy then they would be able to accomplish in the 1-2 weeks insurance would give them, and they suggested I take him to subacute.

THERE ARE MANY DIFFERENT INPATIENT OPTIONS
I went with the inpatient rehab with-in the hospital system that my dad was in. This was most likely my biggest mistake through this whole ordeal. I just thought that's how it worked. Months and Months later I found out about a state of the art top of the line neurological inpatient rehab that probably would've made my dads recovery go much quicker. I kick myself in the ass on a daily basis for this. Make sure you look for a stroke/neurological/brain injury specific rehab. All rehabs are NOT the same!
Michigan Residents, please look into Rehabilitation Institute of Michigan.

SUB-ACUTE REHAB
Sub acute rehab is basically a nursing home that has rehab in it. There are nurses and CNAs on staff, about 1 to every 10 patients. The problem with my dad and these kind of places is while in inpatient they have measures in place similar to a hospital to "restrain" a patient - Nursing Homes do not. My dad, not knowing he had a stroke and was disabled, therefore was turned down from all of my top 3 choices because they "didn't have the staff to handle him" - In other words he was a liability. I even told them I would have someone with him 24/7, still a no. So I had to settle for a sub-par facility. While we were there I thought it was well enough, I don't know what rehab is supposed to be like, once we got out and got into home therapy / outpatient therapy I learned the entire month we spent in sub-actute was a complete waste of time. I'm sure this isn't true of all facilities, but this place was set up more for people who've had hip surgery or something of the like - They were not at all equip for neurological problems.  BUT - We didn't have any other options and sometimes I guess that's how the chips fall.
Michigan Residents: Heartland is where we went and I would not wish them on my worst enemy.

HOME THERAPY
Upon being discharged from rehab, assuming additional rehabilitation is needed, the doctors will then put you into the care of a home care company. Like before, you can shop around, you don't have to go with who they suggest as they are most likely getting paid to refer you to their "preferred" company. Fortunately, this is where my years caring for my aunt finally were useful, and we already had a home care company in place for her, so I went with them. We did 5 weeks of 2x a week in-home speech, physical, and occupational therapy. I learned a lot from this, and this is when my dad finally started progressing.
Michigan Residents, Michigan Community VNA is the company we used and I highly recommend them. They also have outstanding hospice services should you need them.

OUTPATIENT THERAPY
When home therapy is over, you still most likely have insurance benefits for outpatient therapy. Again, Shop around. Find a neurological specific outpatient center. The top of the line inpatient rehab I had mentioned earlier also had outpatient programs, which is where we enrolled as soon as possible (there could be a waiting list, call ahead and get on it when you know about when you will be discharged from the previous therapy).
Michigan Residents, Rehabilitation Institute of Michigan has several outpatient locations and I highly recommend them. They're therapists have training above and beyond the normal scope. They are highly resourceful and have helped me with A LOT through-out this process


Know that if you get into a facility or program that you don't like, you CAN change to a different place. 

Navagating the Hospital System

My dad was in 3 different hospitals, the first because it was closest to his house where paramedics insisted he go, the 2nd his hospital of choice where I had him transferred, and the 3rd where he was suppose to have inpatient rehab, but ended up getting the flu and being hospitalized for that....

I had complaints daily, and big plans to write all these elaborate letters to those in charge. I never did write those letters and have long since forgotten half the things that pissed me off. The bottom line is, nothing is every going to be good enough, fast enough, or well delivered because you're most likely in shock with a side of denial and still have no idea what the hell is going on. But a few lessons from my temporary residency...

Doctors Aren't Fast
And bitching about it wont really do anything except stress you out more...They round when they round and it's not the same everyday.

Nurses are your Lifeline
Fortunately your nurses are pretty consistently the same few. Personally, I find them much smarter than doctors. They are in the field. If you need something, they are the ones that are going to get it for you. You're going to want to and probably will lash out at them, because they're on the front lines. And they are used to it, and can take it. But when you need the good coffee at 4 am after 4 nights of no sleep, being their friend pays off....

No One's Going to Tell You What you Want to Hear
The opposite quite frankly. When it's a stroke you're going to hear a lot of  "I don't know"s and "Only Time will Tell"s. And the truth is they really are clueless. It could be because everyone recovers different or it could be because the docs in hospital rarely see the patients after they're in rehab/home, I don't know - But no one would give us a straight answer on if/when/how my dad would improve. It's best this way, them not telling you, if they do- Just know they probably are full of shit.
One of the many neurologists my dad saw flat out told me this is probably how he's going to be the rest of his life. He happens to be the same neurologist we ended up with as his follow up doc. I enjoyed the look on his face when he saw my dad for the first time post hospital, stunned that he looked nearly normal (he wasn't, but was 100% better than he expected).

"Fall Risks"
First, Bed alarms don't work. Hospitals are understaffed and they will not get to your loved on in time if they are bound and determined to get out of that bed. My dad "escaped" a few times. I had slept in the hospital every night until the night I got the flu. I stayed away for 48 hours so as to not give him the flu (which didn't work) and the first night he managed to get out of bed. They got to him before any falling happened fortunately, the 2nd time wasn't so lucky. He wanted to get up so they got him up into a wheelchair with a chair alarm and put him at the nurses station. She walked away for 1 second and up - down he went. Smacked his face straight into the floor, cut his eye up pretty good and delayed rehab even longer....  The best solution we came up with for when I couldn't sleep there was keeping the foot of bed high so that it wasn't so easy for him to wiggle out in his weak state, and line chairs up around the bed that would be in his way.

Don't Allow Restraints
While it seem convenient at the time, we were turned down by our top 3 rehab choices because restraints had to be used in the hospital (it goes in their chart) and ended up with a sub par piece of junk rehab which I do believe delayed my dads "recovery" significantly. If you can find a way to manage them without restraints, do it. Even the stupid mits to stop them from pulling out feeding tubes count as restraints....Having a hospital "sitter" come in to watch them counts as a restraint. No joke...

Social Workers are of No HelpUnless I just got really bad ones (had 3) I don't know what their function is.... I was told they would help me with filing for disability - They didn't know anything about it. Was told they would help me find resources to help with him, they didn't. All they did was push me into making decisions to get him out of the hospital...... The only social worker that has ever been helpful is the one he has in his outpatient rehab facility.

 In some ways - The internet can be your worse nightmare in these situations, but at the same time, it might be your only resource. Never accept one opinion, find out what else is out there.

{Panic Attack} My First Nervous Breakdown

Being the person I am, I slept in the hospital with my dad every night from day one. In fact, I rarely left at all. Because he was in ICU there were only two small chairs (to keep room for crash carts) so I slept by butting those up together and somehow managing to fit my overweight self into a sleeping position. Needless to say I didn't sleep.

He was required to be checked on every 2 hours by the nurses and perform their neurological assessment, squeeze my fingers, look into the light, etc. etc.

For the most part I had kept it together well. I had only cried when we were in the ER. It was night 3 or 4 that the lack of sleep combined with the weight of what was unfolding, trying to be the strongest one in the room, and what I'm sure was malnourished finally hit me.

It was around 2 or 3 AM and I naturally wasn't sleeping, so I got on google (big mistake) and started looking up bi-lateral thalamic strokes. To keep a long story short, basically what I was finding was my dad was going to be very messed up for the rest of his life and most likely looking at living his days out in a facility. I kept panning the articles looking for one simple positive story.

Then I had my first, what I assume was, a panic attack. I rocked back and fourth crying uncontrollably and unable to breath for about 3 hours straight until it was early enough to text a family member.

Somewhere in that waiting period, one of the doctors (who I wanted to kill for many other reasons) came in to check on my dad, whilst I'm in the middle of hyperventilating, and asked " Oh, Should I come back later" - Like really dude? Bedside manner much!

My aunt arrived, who as this story unfolds would be the one person who's provided me the most support through this whole ordeal, and sent me home with instructions to shut my phone off and go to sleep.

I was still sobbing the whole drive home, into the house, and to the bed, where I did eventually pass out. Only for about 4 hours, when I called a person who called a person and got me something to calm down.

The next day I went to the doctor and she wrote me a script for Xanax and Zoloft. I never took the Zoloft after reading the potential side effects. Didn't seem like now was a good time for me to be having chemically induced thoughts of suicide. But the Xanax help me keep it together when I knew something stressful was coming. , She of course told me this was a one time script and I need to deal with my shit and not cover it with medication. "It's okay to cry" they say.

I had very serious decision to make and a whole new host of responsibilities all which had to be done with my dads would be ex-wife had he not had a stroke breathing down my throat and in my way left and right - She'll get her whole own post one day..... So yes - I medicated. And I turned out fine.

Disclaimer

Clearly I'm not a doctor and can't/don't suggest you go out and do anything crazy or illegal to obtain pills that you don't know anything about, but on the slight chance you've stumbled on my post in the middle of your 2am googling because your scared, alone, and freaking out in a hospital room - It is, in fact, going to be okay - One way or another. And it is okay to ask for help, whether its asking a doctor to write prescribe you something, or finding someone to talk to. I'm not the talking type - Not my thing, don't share my feelings, am the strongest one in the room - I'm the listener, not the talker.

My Story - The Stroke That Changed it All

March 14th 2016

I got a call at 12:22 pm to say my dad had not shown up to work (very unlike him) when he was due in around 7am. I raced into the car and begin speeding 70mph down residential roads on the trek to his house 20 miles away.

While driving I had called nearby family members that could get there faster with the instructions to just call 911 if his van was still at home, as clearly something would be wrong, and not to tell me anything further until I got there - I was already a panicked tearful mess.

My dad had a history (as does most of our family) of strokes. 5 and 6 years prior he had two very minor strokes that left him with no deficits and less than a week hospital stay each.

When I got there, the paramedics and fire were already there working on him. He was alive, but basically unconscious. After searching the home to rule out drug overdose (I guess they have too) and ruling out carbon monoxide, he was transported to the nearest hospital. While being lifted on the stretcher he was able to mumble a few words to me "I don't know what this is".

The ER ran a battery of tests for infection as well as CTs for stroke, everything was negative, for a while we all including the doctors sat there puzzled. It wasn't until MRIs finally came back that it was discovered there was a lesion in both side of his thalamus and brain stem, however, they still didn't believe it was a stroke. He presentation wasn't "typical". They started treating him for everything under the sun, at one point he was on 6 different high powered antibiotics.

He was transferred to the ICU and that night, intubated because he stopped being able to swallow his own saliva and they feared he would aspirate. He was on "life support" for 3 days. At the moment, the diagnosis was stroke, with no known cause. It was 2 full days before we ever actually talked to a neurologist for an official diagnosis.

Her words were, when I walked in the room what I saw was a lot better than I expected looking at his brain scans. We came to learn the thalamus is a pretty important part of your brain, and to have both sides now essentially dead, they expected him to be in a permanent coma. As far as I was concerned, he was.

He responded to physical stimuli on both sides. He did not respond to voice commands except for occasionally on his left side. His eyes were both non reactive and one pupil was incredibly large than the other. He slept for what seemed like forever, in reality I believe it was about 3 full days.

On day 1 I had already made the decision that I wanted him transferred to a different hospital where all of his doctors were, this wouldn't actually happen until day 5 due to red tape and stupid insurance. In the meantime, he was taken off the ventilator day 3 or 4, and gotten out of bed to sit slumped over, but awake and alive. I was actually out of the room when they got him up, it was quite shocking to see him in the chair, I cried. When I went over his first words to me were, "Are you going to take care of both of us" - At this point I thought, he's going to be fine.

My aunt has dementia, it started around 2013 and quickly went down hill. She is significantly older than her siblings (a child of a previous marriage) and was more like a mom/grandma to them and I, and my dad being the fix everything and everyone person he is insisted we keep her home instead of in nursing care. Over the course of her disease I had taken over a lot of the responsibilities caring for her, grocery shopping, meal prep, coordinating her medical care, etc. This is, what I assume, he was referring to when he asked if I could take care of both of them.

This glimmer of hope that he was going to be okay and had all his marble intact, would be the last. He was soon transferred to my hospital of choice where 10,000 more tests were done, and bi-lateral thalamic stroke remained the diagnosis. What came in the days, weeks, and months following is more than I could've ever managed, and what lead me to start this blog.