You've heard of the five-second rule? Here's my story about the five-hour rule...
When you're on a long road trip, you try to plan and be efficient. You might know that your car's range between gas fillups is 400 miles so you plan your refueling, bathrooming, and meals around those parameters.
If everything goes as planned, your trip pretty much flies by and you're at your destination ready for action but if not...say you get a flat tire, get stuck in an unplanned traffic jam, bad weather, etc...you find yourself falling behind fast and sometimes it gets very hard to recover from.
Dealing with a person in a wheelchair who cannot take care of himself can be similar.
I tell people we live live 3 to 5 hours at a time. What that means is that when we get Tim's needs taken care of, we're usually good for 3 to 5 hours of smooth sailing but at the end of that block of time, we have to start over for the next one.
For example, when he wakes up in the morning, we have to help him with his bathrooming needs. Then dress him and put him in his wheelchair. Then make his breakfast and feed him. Then give him his medication. Then brush his teeth and maybe a shave.
Only then are we able to relax a little bit but a few hours later, it starts over again. Tim needs to go to the bathroom. He needs to eat. He needs to be cleaned up, and so on and so on.
If Tim is able to accomplish all of this (and at home, he usually is), no problem. It's done, it's taken care of, and now we move on to the next 3-5 hour block.
If not, then things can start to derail. Usually it's a bathroom issue, especially if we're out somewhere. When it's time to go, we'll take him to the nearest facilities. He goes? No problem, we move on to feeding etc., but there are times he can't go and then the pressure starts to build.
We'll usually just try again a little later but if that doesn't work, then pain might set in. On top of that, Tim's anxieties start to mount and he starts to fear that there will be big problems if we continue on our present path of plans. This worry and anxiety just complicates the ability to go even more and it's like a snowball rolling down a hill...getting bigger and badder all the way down.
Sometimes, we'll have plans with people and we'll have to cancel and get back to where he's comfortable and we can walk him back from the ledge to get back on track. It's something we're working on to make better...and it is getting better...as we all continually deal with the issues in our lives.
It can be a pain but it's not too big a deal...it's just one of those things you have to deal with on occasion.
The only thing I feel bad about is others who might not understand why we cannot always commit to meeting up with, or when we have to cancel suddenly, or explain why we just cannot do certain things with them.
It's all about the five-hour rule and the road trip of our life. Everything goes as planned? Great! We'll get there and enjoy the destination but occasionally we hit those unexpected bumps in the road that keep getting in the way of that goal.
I hope something like this post can help explain that it's not that we don't want to do those things, it's just the realities of our lives means it cannot physically be done because the five-hour rule dominates our lives.
Darryl Musick
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