When Ben was born, we were told he would never walk, talk, or go to school. At the time, I couldn’t imagine what that meant. I couldn’t imagine how we could live in world that might require 24-hour care. What I’ve come to understand is that this world is more difficult than I thought it would be. But it has also become an important part of my life. Having lasted 24 years, I guess you could say we have somehow figured out how to survive in this ever-changing world.
One Saturday, a few months ago, when it was just me and Ben (Jan was at work), I decided to log every minute of the day to see what 24-hour care actually looked like.
That day began at 9:10am when the home phone rang. I deliberately didn’t answer it. This was my day to “sleep in” since most days begin at 6:30am. I wanted to experience what eight hours of sleep felt like. But with Ben awakening at 4:00am for some unknown reason, just long enough to get me out of bed to check on him, and the phone ringing 20 minutes before my alarm was set to buzz, I’d have to wait for another day to revel in that luxury.
The Morning Shift
09:30am -- I decide to get up and get the day going after laying awake for 20 minutes.
09:50am -- My first attempt at waking Ben.
10:00am -- Get Ben up. Change his PJs and bed sheet. Use the lift to get him in his wheelchair. Prepare his breakfast. Get the dog some food.
10:40am -- Ben devours his breakfast (he loves to eat).
11:00am -- Brush Ben’s teeth. Clean his breakfast dishes. Put on fresh kerchiefs (we call them “chiefs”, used to catch drooling). Boot up his talker and attach to his wheelchair. Listen to what is on his mind.
11:13am -- Sort the dirty clothes (most are Ben’s), including the bedsheets from earlier. Put in the first wash of the day.
11:35am -- I sit down (beside Ben) to have breakfast and take a short break.
The Afternoon Shift
12:05pm -- Get him ready for his stander. Change his chiefs. Put on long socks. Do leg stretches. Put on his AFOs (ankle foot orthotics). Use lift to transfer Ben from his wheelchair to his stander. Get him properly positioned in the stander.
12:17pm -- Start up one of his computer games. Activate his switch. He’s good for at least a half hour. Back out to the kitchen. More clean up. Fold the clean chiefs he’ll need for the day and his shirt protectors (a more adult name for a “bib”).
12:56pm -- Start Ben’s bath water. Layout the towels on the massage table in the bathroom. Help Ben pick out his clothes. Get him in the bath sling and transport to the bathroom. Undress. In tub. Wash. Shampoo. Rinse. Dry on massage table. Grooming. Recycle 2 of the 4 towels. Transfer Ben back to his wheelchair.
1:40pm -- Heat his (previously prepared, frozen) lunch in the microwave. Get his fruit and drink ready. Ben falls asleep in his chair. I use the break to do my 9-minute daily stretching routine to maintain some level of flexibility.
2:05pm -- Ben starts eating … late, but a typical weekend.
2:26pm -- Clean up his lunch dishes. Brush his teeth. Put on new chiefs. Spot clean and “shout” his shirt protector. Attach his talker. Write in the “pink book” (our daily record book about Ben) about his day and meals so far.
2:37pm -- More laundry. Put the towels in the dryer. Sort the delicates (need those for the work week) and put in the washer.
2:48pm -- Grab the last piece of cold pizza from the fridge. My lunch. Ben nods off again in his wheelchair.
3:11pm -- Get Ben prepped for his stander.
3:22pm -- Ben plays another computer game. Some free time for me but still check on him every 4-5 minutes.
3:54pm -- Get Ben out of his stander. Transfer him with the lift to the couch. He lays down willingly, stretches his limbs with enjoyment. Position his pillows so he’s comfy. Charge the lift since the battery is below 25%.
4:12pm -- Jan’s Mom arrives to help with folding clothes. Ben has not slept but is content to chill on the couch. I grab a shower.
4:45pm -- Still no nap for Ben. Use lift to get Ben into his wheelchair. Get his snack prepared, cup of water, shirt protector. Feed him his snack – loves it – and drinks nearly 4oz. Brush his teeth. Quick grooming for 5:30pm mass. Jacket on. Fill tray bag filled with enough chiefs.
5:10pm -- Load Ben and wheelchair in the van. Strap down his chair. Drive a block to pick up my father (he’s 99), and head across town to mass. Ben manages to stay awake during the homily.
The Evening Shift
6:40pm -- Arrive home. Heat his (previously prepared, frozen) supper in the microwave. Get his fruit ready and milk poured. Feed him – rather hungry, again. Clean up his dishes. Brush his teeth. “Shout” his shirt protector. New chiefs on. Talker booted up and attached to his chair.
7:40pm -- Sit down for supper with Jan and my Dad. Put another wash in (the clothes pile never ends).
8:15pm -- Get him ready for his walker. New chiefs on. Legs stretched. AFOs on. Pause for a few mins to watch US Open tennis match.
8:30pm -- Transfer him to his walker. Not much stepping tonight but good posture and great standing. Lots of pressure on his feet.
8:50pm -- Transfer Ben back to his wheelchair. Take my father back home, make sure he gets settled ok.
9:05pm -- Take a mindless break and check my Facebook news feed.
9:10pm -- Prepare Ben’s evening snack with his meds (about a half hour later than usual). Brush his teeth. Clean up. Get Ben to choose which pyjamas to wear.
9:33pm -- Use the lift to transfer Ben from his wheelchair to the bathroom to get washed up for bed. Do all necessary hygiene.
10:05pm -- Transfer Ben to the family room couch to watch some of “The Town”, and spend some relaxing time with him. Position him comfortably with the usual array of pillows. Set up his rolling talker mount and talker.
10:30pm -- Shut down Ben’s talker. Plug it in to charge. Store the rolling mount. Transfer Ben to his bed using the lift. Get his pillows positioned. Lay him on his back to stretch out. Warm the “magic bag” to relax his shoulders. Go through his 20-minute massage routine for his shoulders, arms, hands, fingers, chest, legs, feet, toes and back. Flip him on his side. Position the other pillows to support his body. Cover him. Turn out light and close his door.
10:50pm -- Watch more of “The Town”, listening for him on the audio (baby) monitor and peeking at him on the webcam.
11:10pm -- He’s asleep!
During this 14-hour shift, I managed to steal a little over an hour for myself. Time for things like eating, doing my stretching routine, surfing the web and watching some TV. But I was still “on” even during those breaks to ensure Ben was OK. There is no such thing as disconnecting from his world.
Once Ben is asleep, the overnight shift begins. This means listening to the audio monitor and having the webcam on all night. Fortunately, he doesn’t awaken very often – only when he’s not feeling well. Through some divine intervention, I am able to sleep reasonably well while tuning into Ben’s frequencies. Whenever he stirs even a little, I hear him. I guess that’s both a blessing and a curse. I can count on one hand the number of times in 24 years that I did NOT hear Ben in the night. Fortunately, Jan did!
The Truth
This has become a typical day in our 24-hour care world. For the first 10 years, we covered all these “shifts” ourselves because we couldn’t afford to hire a caregiver. That routine, though, came with a high cost, both physically and emotionally.
You see, the truth about living in this world is that you can’t do it all yourself, no matter how Herculean you think you are. It is only possible through the support of friends and family, the strength of faith, the determination to put one foot in front of the other, and developing a great caregiver team. Once we found a someone we could trust, we saw our health start to improve. By freeing ourselves of the hands-on responsibilities, at least for part of the day, we found the time to imagine greater things for Ben and actually had the energy to act on them. Without a doubt, it brought balance and control back into our lives.
The other truth about a world of 24-hour care is that once you're in, you can never check out. You are always on-call. For me, this is something I can’t imagine ever stop doing.
Mike is co-founder of SoaringFamilies, an online community focused on making a difference in the lives of families impacted by a disability so they can live more freely, more fully and with more energy.
SoaringFamilies is about believing in a future that is bigger than the past, creating a world where all persons are accepted and included, and where every life is of equal value.
Mike is co-founder of SoaringFamilies, an online community focused on making a difference in the lives of families impacted by a disability so they can live more freely, more fully and with more energy. SoaringFamilies is about believing in a future that is bigger than the past, creating a world where all persons are accepted and included, and where every life is of equal value.
Mike is also an author, speaker, and Inclusion evangelist but, most importantly, he is a parent of a young adult with multiple disabilities, and has invested a lifetime to helping him become the person he is meant to be. His first book, Third Time Lucky: How Ben shows us the way, tells a very personal story of our family’s determination to unleash the smart, social, loving son who was trapped deep inside a spastic body. Visit http://www.soaringfamilies.com to learn more.
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