Overnight at Lake Kegonsa State Park

After our trip to Point Beach State Forest, I finished up the converter.  You know how you get to the end of a project and have pieces left over? Well, that isn’t a new occurrence for me.  It turned out that the main shore power cord needed a wire clamp to hold everything in place.  It would have been better to install that before everything was wired into place.

So there was some disassembly and then some reassembly.  Later,  the converter needed side shims to close a gap and to provide more support for attaching the converter box to the interior frame of the  Brew Hut.  I finished everything on Wednesday.  On Thursday, I took the Brew Hut in for the final summer upgrade:  new tires.

When I originally purchased this Scamp trailer, the owner told me that the battery and the tires were new The old battery was dead, and the tires were bald.  However, he also admitted that he bought the cheapest replacements that he could find at the local farm supply store.   I immediately replaced the battery.  After traveling to Arizona last fall and to Texas this spring, I didn’t trust the cheap tires for another long trip.

Based upon several recommendations at the Fiberglass RV forum, I ordered three Carlisle Radials.  The existing spare tire was the original (stamped 2000), so it was time for that to be replaced also.  After the tires were balanced and installed on the Brew Hut, I was off to Lake Kegonsa State Park for a quick overnight trip.

On a Thursday night, there were plenty of campsites available.  The sites are nicely spaced and wooded.  There are about 100 campsites; however, I saw only a few that would be good for solar power. Since I was checking out my electrical system, I opted for an electric site.

After a long hike on grassy trails at the edge of the woods, Callie and I watched the Packers game on my little-used television.  Well, Callie mostly watched me watch the Packer game.

Everything electrical seems to be working, and the new tires have set my mind at ease. On Friday, we moved Justin’s things to his new dorm room and moved Justin back home for a couple of weeks of relaxation (for him, not me).

During the next couple of weeks, I’m on caregiver duty.

After Justin starts college, I’m heading southeast in the Brew Hut, hoping for a quiet hurricane season.  Julia plans to join me again closer to our destination.  If all goes well, we will enjoy some time in a new place:  the Outer Banks of North Carolina.

Caregiving: A Partial Week in the Life

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.

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?).

Eyes on the Prize

The last couple of weeks have been spent transforming Justin from high school kid to college adult. Yeah, right. 

Anyway, everyone is doing the best they can under the circumstances, and we are on the morning of move-in day.  He has some caregivers lined up.  The truck and wheelchair van are packed.  Classes start tomorrow.  We are scheduled to leave on our 30th Anniversary celebration trip mid-week.  There may be a bit of tension/stress in the air.

So we’ve tried to have a little fun along the way on these warm summer days and nights.  The best part of Wisconsin summer can usually be sampled with brats, beer, and music on the University of Wisconsin-Madison Terrace.

After meeting with Justin’s “caregiver team” at UW-Whitewater, Justin and I checked out the local brewpub.  He’s posing in front of my Hefeweisen.  The food hadn’t arrived yet, but it was pretty good.  I give Second Salem Brewing Company a thumb’s up.

One way or another, July promises to be a busy month.  Time to pick up the blogging frequency a bit.

Summer’s Bounty

About five or six years ago, I planted six fruit trees:  three apple, two pear, and one cherry.  At the house before this one, I had some great luck with the apple trees planted on a hillside.  However, conditions here are different:  steeper terrain, clay soil,and more wildlife and insects.  I lost one apple tree after it was run over by the neighbor’s escaping steer.  The other two apple trees have had issues with late freezes and insects, producing pretty much nothing usable.  The pear trees, which were purchased because they were different types known to play well together, have never even flowered.  The cherry tree was eaten up by deer and then pruned poorly by me.

But this year has been different–at least, for the cherry tree.  We’ve already harvested 8 cups of cherries.  Julia also went to a local farmer and picked strawberries last weekend., along with her own rhubarb. We’ve been enjoying fruit, pies, and smoothies.  There’s something special about walking up the hill to the Scamp and stopping to pop a few ripe sour cherries in my mouth.

Speaking of the Scamp, modifications are coming along slowly but nicely.  The old smelly carpet is gone, and some nice gray vinyl plank is in its place.  Also, I installed vinyl wallboard on the space between the floor and the walls.  The installation is far from perfect, but it’s acceptable to an ex-lawyer with few construction skills.  Function over form is my motto. 

The bed was also ‘the subject of an upgrade.  When I bought the Scamp, the previous owners were using a three-inch foam pad on top of the original cushions.  I threw out the foam pad and stored the cushions, replacing them with eight inches of memory foam.  Much better!.  I have taken a few afternoon naps to test it out. I’ll take some photos when I get closer to completion.  The new dinette table, created by someone with infinitely greater skills, will be the focal piece of the remodeled interior.

The electrical system is still in the research phase.  I will definitely upgrade the battery before my September trip and probably buy an inverter for laptop use. I may put off some of the other electrical upgrades until I take my first extended trip and see what I am capable of producing/using in amps.

We are continuing to put together the pieces of Justin’s puzzle.  There are some caregivers lined up for his college summer school in July.  He is working on backups in case something goes wrong.  We’re taking two steps ahead for every step back, but that is better than the other way around.

If everything falls apart, I may be going to college as a caregiver and living in the Scamp for a month.  If everything holds together, Julia and I have a special trip planned.  Stay tuned.

Pieces of a Puzzle

Since returning from the Canada road trip, my days have been filled with trying to get Justin set up for services so that he can begin living on campus and attending college.  Tonight, we met with the fiscal agent who will be responsible for paying Justin’s caregivers.  Tomorrow, we have a meeting with SSI.  Wednesday, we meet with his managed care coordinator.


We have less than three weeks to get everything in place. We’ve been on a time crunch because Justin didn’t qualify for a lot of this stuff until his 18th birthday in mid-May.

Some of the government employees and non-profits involved truly want to help and are able to do so.  Some of the people involved truly want to help and haven’t been able to help much, due to limitations in the system.  Other people have attempted to obstruct, delay, and prevent us from getting things done.

I don’t have any problem with government employees trying to save taxpayers’ money. We pay a lot of taxes ourselves. But when the government bean counters are penny-wise and pound foolish or just so full of themselves that they fail to do their job, my adrenaline goes into overdrive. Everyone wants to root out fraud, but this is not that kind of situation.  The government safety net was designed with people like Justin in mind.

In the last twenty years, the emphasis has been to keep severely disabled adults in the community—partly because it’s a more fulfilling way to live, but partly because it’s a lot cheaper than institutional care. Having said that, people who try to live independently have been getting squeezed. The pay for personal caregivers has remained stagnant, resulting in a labor shortage that puts severely disabled people’s lives at risk. One personal care agency has primarily serviced Justin’s college for years. However, that private agency refused to provide care for Justin and other freshman disabled students for the fall semester because they don’t have sufficient staff to meet the needs of new disabled students.  They point blank told us, “Sorry, we can’t help you.  You can try again for the spring semester, but we can’t promise anything.”

Of course, there’s a reason why there isn’t enough staff. The pay is about $9/hour, irregular hours, and difficult working conditions. Justin is alloted forty-some hours per week, and the majority of that time is early in the morning and late at night.  Most people would rather work at Taco Bell for four-hour shifts than work two-hour shifts emptying urine bags and transferring patients from bed to toilet chairs to showers. As a result, we’re scrambling to find caregivers outside the agency setting. The good news is that care workers can make more than $9/hour by removing the agency’s profit from the equation. The bad news is that it puts the burden for finding caregivers on the severely disabled person. Justin will have to learn to hire, fire, train, and time keep.

Most people who attend college for the first time worry about papers, exams, grades, and how not to get caught drinking alcohol. Justin has to worry about whether someone will be there to get him up in the morning, assist with getting meals during the middle of the day, and getting him into bed at night, plus all of the normal student stuff.  If no one shows up and back-up isn’t available, he has to call 911– if he can reach his phone. He cannot move out of a laying position without assistance. Not even to sit up.  He can’t transfer out of his wheelchair without a mechanical lift or a big strong dude.  How it’s all going to play out, nobody knows.

We all know that life isn’t fair. It’s less fair for some than others. On the other hand, there is reason for hope. Twenty years ago, most of the boys with Justin’s diagnosis died before reaching adulthood. No one went to college.  Now, we know a number of young men who finished college and went on to find jobs with the skills gained in college.

Justin desperately wants to go to college and to live in the dorms with the help of personal caregivers. There are no guarantees even if we can get all of the care set up. Another UW-Whitewater student with Justin’s diagnosis, and who Justin knew from state Muscular Dystrophy Association activities, died earlier this year at age 20. It’s important for all of us to live every day to the fullest and to appreciate every day as if it might be the last.