The rest of the week was busy with caregiving for Justin. A couple of blog readers have asked what that looks like so I thought I would write today’s blog to provide a small glimpse. Most folks don’t understand the degree to which Duchenne’s muscular dystrophy affects young men in their late teens. Justin still has some strength remaining in his neck and hands, but he cannot walk or transfer independently to or from his wheelchair. I used to physically pick him up for transfers to save time, but he is now Hoyer-dependent due to discomfort that Justin experiences when someone tries to do a transfer without the lift.
Some people wonder whether life is worth living for someone with that degree of disability. Able-bodied people mostly ask that question. While mental health and social isolation are often issues for people with severe physical disabilities, there are still many opportunities for fun and living fully. Justin goes out to restaurants and movies, attends concerts, engages in online activities (sometimes too much), and participates in mentally challenging activities (college).
Having said that, Justin begins every day waiting for a caregiver to get him out of bed. This week, that was my job. At school, he is allotted six hours each day by his care management organization. The assumption is that the personal care worker getting paid $11/hour shows up. Missing lunch or supper is an annoying inconvenience, but missing a morning shift is a big problem. Justin can’t get in or out of bed, sit up, or roll over.
That doesn’t even take into account Justin’s service dog, who obviously can’t let himself out to go to the bathroom from a locked dorm room. At home, those aren’t issues because I’m across the hall. But that also means that I need to be at home and available when Justin needs care.
Elvis the service dog appreciates that too. I generally feed/water/bathroom Elvis about an hour before Justin is ready to get up.
Essential equipment
Caregiving starts with emptying the overnight urine bag. I then retrieve a combo shower/toilet chair from the accessible bathroom. I use a pad underneath Justin to roll him into position for the Hoyer lift.The Hoyer lift sling attaches underneath Justin at two points on the bottom and two points at the top. There’s a manual lever pump that raises the Hoyer lift up under load and a pressure relief control that lowers him. I raise him up from the bed and lower him into the bathroom chair. Then I roll him to the bathroom and over the toilet where he begins his day.
When Justin yells that he’s done, I start the shower and roll him into the shower when the water is right. I raise his hand to the water control so he can fine tune the temperature. I wash his hair and the places he can’t reach, and place a bar of soap in his hand so he can wash where he can reach. Then he soaks in the shower for about ten more minutes and yells when he’s ready.
From this point, I dry Justin off in the bathroom and then roll the bath chair into his bedroom, where the Hoyer lift is used to move him back into his bed with a towel underneath. Justin is unable to assist with dressing so this process involves putting his clothes on, rolling him over when necessary to accomplish that, and readjusting everything when he is rolled to his back again. I pull him up to sitting position, reattach the Hoyer, and transfer Justin to his wheelchair After I put on his shoes and socks, he is pretty much ready for the day.
I fix his breakfast and clean up the dishes. Now, I have a couple of hours to myself for taking Callie for a walk or errands. Lunch and supper are each an hour and mostly involve food prep and cleanup. He can still drink and eat on his own, provided everything is set up ahead of time, including choosing softer foods. Justin drinks from a straw. At school, two hours total are allotted for lunch and dinner. Justin is by himself the rest of the day. At home, there ends up being quite a few other times during the day that he asks for help.
At night, the reverse process occurs in order to get Justin ready for bed. There’s normally no need for the bathroom chair–only a simple transfer into bed and undressing, which is much easier. There are a few more tasks in getting the urine bag ready for use at night and getting his bi-pap machine ready (Justin uses a bipap machine for both sleep apnea and assistance in breathing due to weakened lungs).
During the week, we had time for a music outing at Capitol Brewery and supper out with Julia’s Dad at Fitz’s on the Lake. I had a couple of doctor’s visits in Madison for Justin. He regularly sees 6-8 specialists who are trying to keep him both alive and with as much function as modern medicine permits.
Yesterday, after the final doctor’s visit, I drove back to Whitewater, shopped for Justin’s groceries, purchased his textbook from the college bookstore, and dropped him back off at his dorm room (with Xbox) . He’ll have a couple of weeks off to explore campus as a young adult before his next summer school class starts. We’ve encouraged him to get outside, do things, and get more involved. That’s a big ask for Justin, but he says he’ll try. He’s a great young man to get to know, but Justin has to open up for that to happen. At home, we can’t shut him up, so we know he’s capable (right, Justin?).
