Trapped

"Somebody's gotta take care of him"
I quit school and that's what I did…"

― Tracy Chapman

There's an active component to rehabilitation that enhances recovery when you are an inpatient.  There is an entire team working on your behalf.  When you transition to outpatient--i.e. you are sent home--all of that deliberate care comes to a screeching halt. The reality is that you are alone with the exception of those volunteers around you who accept your condition and are willing and able to assist.  And we know how that works when seated in the exit row.  “Are you willing and able to assist?”  “Yes, now leave me the hell alone so I can enjoy all this space in the exit row”.  You don’t actually have to do anything when seated in the exit row.  I’m not sure at what point in history those who loved you would simply pitch in, full time, to help their disabled family member or decided the exact opposite.  Early on it was more likely that they allowed their loved one to crawl off into the wilderness.  I guess they could take you to the wilderness to speed things up.  It’s better for them if they didn’t know you were crawling off. I’m going to keep a keen eye on my family members, as a general rule.

The inpatient team does try to assess your home life to make sure they are not sending you home completely unprepared, and if your family is truly, “willing and able to assist”, but the contrast is stark.

In patient means, breakfast, lunch, and dinner

In patient means always hydrated

In patient means BP, pulse, temp, and O2 every 4 hours

In patient means all meds on time throughout the day

In patient means bedding changed daily 

In patient means 3 hours of therapy daily

In patient means daily visit from doctor

In patient means environment can handle disability

In patient means all sanitization requirements are met

In patient means an occasional shower 

In patient means visits from friends and family

This takes a team of care providers and someone to coordinate all of it.  At a minimum it’s a doctor, a nurse, a technician, an admin scheduler, a therapist, a cook, and someone to bring you the food. In a hospital setting, it all comes together, so the responsibilities are part-time and shared across the ward.  Nothing close to this can be provided at home.  That said, I was told, when the weekend doctor came to talk to me--and looked highly annoyed that I wanted to recount my entire story to him, including sidelines about how great my dog is--that he has 57 patients to visit on Saturday.  I don’t know if that's true or not, but I’m sure he did have a lot of patients to see.  This is a mess for medical care.  Maybe it’s physically possible for him to visit every patient for 10 minutes in a 12-hour shift. How do they involve themself in the intricate care of so many patients?  That’s a different problem, of many problems. 

Once you go home, it will take days for outpatient therapy to kick in and even then, at a much slower pace. I have a nurse coming to my home on Sunday, time TBD, to evaluate what the in-home therapy will look like. She has not scheduled a time yet.  Tomorrow is Sunday.

Being sent home to navigate all of this on your own quickly degrades into the minimum required care. Family members, while positive and well meaning, cannot and should not have to carry the same burden as outlined above.  That’s a full time job for someone else, who, of course, must be compensated appropriately.  There is only so much a family member should do for a loved one.  Mileage varies.

Most homes physically have little done in advance for handling a disability. You might have smoke alarms and a fire extinguisher, but doubtful you have a wheelchair accessible sink. So that means you are making home health care decisions based on its availability on Amazon.  Purchasing medical crap on Amazon is essentially purchasing crap. It's rubbish, I can't use it.

Insurance pays for certain items, like a wheelchair, but expect it to be the bottom rung on the quality ladder.  I bought a second, higher quality wheelchair out of pocket, but even then I didn't jump right into the carbon fiber model. This one is essentially middle of the road quality and weighs in at about 25 lbs.  It does have a nice  blue color to it, and quick change spoked rims with inflatable rubber tires. I'm thinking about taking it over a sweet jump if I can find one. Not sure why I need  quick change spoked rims though.  I guess they are nice to have if I blow out a tire and have to hit the pit.

The cost of proper handicap accommodations in the home, modified after the fact, would be prohibitive for most people even if the house could accept the changes, such as larger doors, raised counters, and smooth transitions from rooms to levels. My house was built in the fifties.  I’m assuming those disabled family members who might have lived here early on most likely disappeared into the wilderness.  Otherwise, the width of doors would be slightly wider.  Am I right?

So now I'm trapped in my wheelchair at my disabled home for the disabled. Imagine how Charles Xavier felt as he prepared his home for the gifted children.  “First we need to get rid of all the mirrors.”  “Huh?”  “Don’t ask.”  “Check.”    “Next we will need wheelchair ramps.”  “Really? Are those for the gifted children?”  “No, those are for me.”

 So here we are and now I'm free to explore my home from a completely different perspective.  I see new things I've never seen before even though I've lived here for 15 years.  Locations where spots of paint were missed along the trim (that’s on me). Unfinished areas under the cabinets (not on me), scratches on walls and doors at dog level (most likely on the dog).  And OMG the clutter.  That’s an easy fix.  But before the clutter is removed, wheel chair ops are less than optimal.  Ironically, I can’t remove the clutter.  I must rely on a family member.  I imagine each family member has a certain number of fucks that they give at the start of all this in home care…and you slowly use them up.  It would be nice to have a visible counter, so I know exactly when it’s time to start my slow crawl towards the woods.  So, they don’t have to drive me, I wouldn’t want to impose.

What I don’t have, blissfully, is a Type-A at home with me managing my care.  I’m the Type-A in these parts and I’m in the wheelchair.  If I had a Type-A, I would imagine they would be over it by the end of the first day with me.  Or we would be fighting.  I’d lose; I’m in a wheelchair.  But the scenario is funny.  

“You need to do this or that.”

“Fuck off.”

“OK, I'm over it.”

“Good.”

“Good.”

“Could you get me my meds?”

I’m learning what I can and cannot do from the seated position.  Standing is incredibly problematic.  Grabbers help…if I preprocessed the scenario and thought I might be needing them. Going outside--other than jumping the transition to get out onto the deck--is even more problematic.  Door Dash is easy...although very expensive.  Even if you Door Dash 7-Eleven, expect prices to jump 8-10%.  Then add delivery.  Then add a fee.  Then add a tip.

None of this really matters though.  I’m going to get better.  This is just the off-season.  I’m recovering--not really and not yet.  But I will walk again.  I’m already hit with the imposter’s guilt sufficiently for all of us.  What if this disability was permanent? The thought of going through the process at DMV to get a handicap permit…occurred to me…but then quickly faded from anything I needed to do for two reasons.  1) the application process is daunting 2) the application process is daunting.   Not interested in fighting with DMV.

To say I have a new appreciation for the disabled and what they go through every minute of every day is an understatement.  Those who love them and care for them are in the same state of disability right there with them.  I feel trapped in my house.  How long before my “care givers” also feel trapped with me in my house.  I’ll ask them that very question.  So how about this new revelation…just mine…not yours.  I’m new to all of this disability activity.

When we enable those who are disabled…through proper care, better equipment, handicapped accommodations, and just the simplest of features that allow them to care for themselves, we not only make their life better, we make the lives of those who must assist them even better.  Right now I’m thinking about the burden I’m putting on my people, having to care for me.  I want to do more, I want them to do less.  If they don’t have to push me up that hill…I don’t want them to push me up that hill.  If they don’t have to put me in the shower and do those types of things, I don’t want them to put me in the shower and do those types of things.  It was second nature, in the hospital, for a team of care providers to do all the things.  But that’s a burden too big to put on those who are closest to you.  I’ll be thinking a lot about all of this during the next few weeks as we try to figure out what comes next.   You may think I’m so unselfish as to be thinking about those who are providing me care rather than thinking about myself…no…I’m pretty selfish here.  I’m trying to maximize my time to get better before I must start that slow crawl off towards the woods…