Caregiver Chronicles: The 5-Hour Rule

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
Copyright 2017 - All Rights Reserved

Caregiver Chronicles: In Praise of the Mighty McNugget

One of our duties as caregivers is feeding. Tim is very limited in his ability to feed himself so Letty and I have to step in to do it.  It's not because Tim has a special diet, it's because of his limited motor skills that he has problems using utensils and keeping the food either on the plate or in his mouth instead of everywhere else.

We've graded each food on how easy it is to feed him...pizza, hot dogs, penne, and macaroni are among foods that are easy. Burgers, depending on how elaborate the toppings are can be easy or a pain in the ass.

God forbid if Tim wants to eat a chili cheese burger.

The Holy Grail, however, are the foods that Tim can feed himself.

Not too messy finger foods, like grapes or fries, can be handled by him. I can cut up a banana or an apple and he can also feed himself using a special OXO grip fork we have for him.

For breakfast, I'll alternate between a banana, apple, grapes, or maybe another seasonal fruit put in a little compote bowl for him where I can just sit it on the table and let him go to town (Tim's never been a big breakfast person so he doesn't eat or care for the egg dishes I cook).

Sunday, in particular, is a day I like to take it easy.  Of course, that's a relative term around here.  On the Day of Rest, I still have to cook two meals, feed him dinner, get him dressed, help him with his bathrooming, put him in his recliner for his evening relaxing time in front of the TV, get him undressed and put him back in bed (yes, that's the easy day...).

Since I'm trying to relax and take it easy, Sunday is also a lunch treat for Tim and myself.  I'll go get him the ultimate feed-yourself lunch...a chicken nugget meal from one of our local fast food restaurants.

The nuggets are the perfect size for Tim to pick up, dip in the sauce, eat, have a few fries, and wash it down with a strategically placed soda and straw.

For those fifteen minutes, I'm in my happy place where Tim can do something for himself and I can have a little time to not worry about it.

Yes, I will always praise the Mighty McNugget for the small weekly break it gives me.

Darryl Musick
Copyright 2016 - All Rights Reserved

Caregiver Chronicles

November is National Caregivers Month. A perfect time to start something new here at The World on Wheels.


Welcome to a new occasional series of posts. As you know, our son Tim has cerebral palsy and is severely limited in what he can do physically. As a result, he's very mobility challenged and has to use a wheelchair to get around in.


Tim's been doing an excellent job with his Cerebral Palsy Stories series, trying to explain to us what it's like to be someone who is disabled and has to rely on others for help.


Since I'm one of the "others for help" he must rely on, I thought I'd let you know some of the joys, trials, and challenges of being a caregiver.

Before getting into more details, I just want to first establish a few general ground rules.  First, no pity.  It's just the way life is for us and we've accepted it and adapted to it. Since Tim was born, we've known no other way so, as life is just normal for you, this is just normal for us.


Second, Tim will vet each of these posts to make sure I don't go too far in each revelation. Whatever you read here, be assured that he is OK with it.


And, lastly, this is tailored for our situation. That is taking care of a child who is now a man that cannot walk, dress himself, or do most of the other self-caring tasks we take for granted. Otherwise, Tim is smart, well educated, can talk for himself.


We make no pretensions on understanding what it's like for other caregivers taking care of special needs persons that we have no experience with.  For example, we don't have a clue what it's like living with someone who is on the autistic spectrum, blind, mentally challenged, etc., although I appreciate those who are to comment and help us all to understand those aspects of caregiving also.

So what is a caregiver? Basically, someone who provides care to someone who cannot provide it to themselves be it feeding, bathrooming, dressing, or any number of daily activities we humans have to do for ourselves.


If you're a parent, you know what that includes. Your children were once babies that depended on you for everything.  Not all children outgrow that period and some people revert to it via injury, disease, or just aging later in life.


Caregivers can include family members or professional health care aides or even a combination of the two.


I'll just leave it at an introduction this week and delve into some more details in upcoming posts.


Darryl