Father’s Day was a low-key gathering with Julia’s Dad and stepmom
in attendance, along with our adult children, Allie and Justin. Allie
drove to our house from Milwaukee. Justin was originally going to come
home Monday night but decided to come home early. My Father’s Day
started early at 7 a.m with a 2 1/2 hour round trip to Whitewater to
bring Justin home from college. It was worth it to have everyone
present.
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.
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?).
