On the Road Again

It's 21 or 22 hours of driving to get from Flusherville to Florida.

You could do it in one day if you had enough Red Bull and a bladder the size of Rhode Island.

We're doing it in five days. That's about 4-5 hours a day plus stops plus unknowns, and four nights in hotels.

The days up to launch day were jammed with activity. It's hard to get ready for a trip of this type, and to close down a house, and even harder when you are taking care of a quadriplegic ALS patient whom you love with all your heart.

Departure weekend came and the troops rallied around us. Divana was on hand with her buddy Carla, and Dwiggie helped out like a rock star. And, our wonderful for-hire PSW Erin was on hand to take stellar care of Karen. Somehow it all got done and by the time the patient transport service got Karen down to the garage, there was only one unknown to face.

Would we actually be able to use the Multi-Lift to get her into the car? Because we'd never actually done it before.

Multi-Lift for the win!

We left Flusherville about noon, the car absolutely jammed with stuff, and headed for the border. A five minute wait and we were in the USA, barreling down I-81.

The drive to our first overnight stop, Scranton, went fairly well, although I started to get a feel for the difficulties involved. The Quad Queen was constantly in discomfort and needed attention often. It's tricky getting a sippy cup straw to your passenger's mouth while still keeping it between the white lines.

The incredible support we've received through our gofundme, through Vegas vlogger fundraisers from Bobby G and Vegas Bebe, and through loving family member meant that I could hire Home Health Aides in each of the four stops we had planned.

In many cases, these ran around $33 an hour with four hour minimums for night, and for the next morning, and a $150 intake fee for a nurse assessment.

After the first night, I was so glad I'd made the decision to get help - I was clearly in over my head.

Pete and Noeleen Tomasi from FirstLight in Scranton met us in the parking lot in the rain. Getting Karen out of the car with the Multi-lift turned out to be incredibly tricky, and we'd had no practice. Noeleen scrambled across the driver's seat to get Karen's feet out of the car while she was suspended in the lift.

And Pete went shopping for us as we had had no time to get any sort of dinner sorted.

I got the Easy-Base put together, but thanks to one stubborn pin, it took an hour. By the time it was done, I was sweating buckets and sore everywhere.

The Easy-Base uses the same Multi-Lift mechanism as with the car to lift Karen in and out of chairs, and bed.

By the time we had Karen in bed, I was all in, exhausted, emotionally and physically. I slept ok and at 7:00 am Karen needed me and it was hit the ground running. I didn't know it at the time, but this state of physical and mental challenge would not let up for a minute, and would build as the days passed.

The next morning, I started my duties around 7:00 and Noeleen was there at 8:00, thank God.

I can't say enough about this couple - they took incredible care of Karen and went way above and beyond.

The days took on this sort of shape: I'd wake up and immediately start seeing to Karen's needs. Drink of water, medication. Roll her and get the sling under her. Get her off the bed and into the commode. That was the first hour.

Make her some food and feed her, and somewhere in there, dash down for a coffee and a plate of hotel breakfast rubber eggs and a couple of pork sausage patties.

Work with the PSW to get toileting and cleaning done, and then disassemble the Easy-Base, which seems to weight about 50 pounds, and pack it in a duffel. Pack the Multi-lift. Get the sling under Karen, meanwhile putting on blankets, giving drinks, scratching itches, drying eyes and wiping noses, and so on.

Take the Multi-Lift down to the car. Go get Karen and bring her down on the commode. Attach the Speedybar to the door hinges, attach the Multi-Lift, attach the swing arm and the spreader bar. Attach the sling clips to the spreader bar and hoist Karen into the car.

Once she's in, put the commode chair in the back of the SUV, and dismantle the Lift and attachments and put them in the back. Go back to the room with the cart, get suitcases and the Easy-base (two trips), and four pillows, and a foam wedge Karen needs for sleeping on. Pack everything in and take off on the day's drive around 11:30 pm.

Somewhere on the way, stop for lunch, feeding Karen first, then feeding myself. Every 20 minutes or so, push Karen to the right, as she is tending to slip left in the seat. Stop many times to adjust her arms and legs in a never-ending search for comfort. Give drinks, wipe eyes, tend to coughing spells, and generally take care of her.

Arrive at the hotel, check out the room, come back to the car, take everything out of the back, get the commode and Multi-lift out, set it all up, get Karen out of the car using the lift and into the commode, and then pack all the shit back into the car. Take Karen to the room, drop her off, and then go back and get everything out of the car again and up to the room.

And hopefully the PSW shows up on time to help out through the evening.

Moving a 175 pound human around is exhausting. I feel like I've been lifting weights all day long.

We got to bed about 11:00, but Karen woke me up 3 times in an hour, needing assistance. I got back to sleep and at 2:00 am she woke me again.

Her catheter wasn't working. Her bladder was full to bursting. Things were starting to leak. We tried not to panic.

There's a think you can do called flushing the catheter, and I'd packed the needed things for such a procedure with me. I'd never flushed a catheter before. But there was no choice. She was in agony.

I detached a hose and let some urine out to ease the pressure, then attached the thingy and pushed the plunger on the whoozis and the hoo-haw line fed the stuff into the nether regions.

We hooked the tubes up again and... urine started to flow into the fun-bag again. It seemed to have worked.

So, in spite of the panic middle-of-the-night M*A*S*H meatball surgery, Scranton was good with great help, then it was on to Harrisonburg, VA.

We took a break at a rest stop and I tried to take care of some stuff on my phone. Reception was terrible.

"Damn, only one bar," I said.

"Virginia has only one bar???" asked the Quad Queen.

Having been spoiled with the Tomasi's in Scranton, our next HHA encounter was less than stellar, and she left 45 minutes early before the hard work of getting Karen into bed was done.

At least Karen got some downtime while I made her dinner.

Waiting to get called for jury doodie.

The hotel breakfast again was crap with some really dodgy looking taters.

I would have loved to have a decent meal in a restaurant, but I could not leave the Quad Queen alone for that length of time.

Fortunately, we had a fairly good experience with the morning helper, Jamie. She was pretty good, but we didn't get on the road until 11:30 am.

Our next night was in Charlotte, NC. And again, we were spoiled with the most amazing helpers from Firstlight. Marion and Sara were there evening and morning thank goodness they were, because we did not get the accessible room I booked.

Accessible rooms have beds that Easy-base legs can go under - regular rooms typically have pedestals. So we couldn't just lower Karen onto the bed using the lift - we had to place her butt on the corner of the bed, and then physically drag her into position on a draw sheet and slider sheet I'd ordered ahead just for such a situation.

These folks helped me manage it all with aplomb. I shuddered to think how I would have managed by myself.

The day before our last stop, since I hadn't heard from the Firstlight franchise in Brunswick, GA, I made a call but couldn't reach my contact. I left a message.

Each HHA agency had been in touch a day or two ahead, but this last one was elusive. The day of the drive to Brunswick, I called again and left a message again.

When we arrived at the hotel, we hadn't heard a word. I couldn't reach anyone at Firstlight Brunswick, and nobody had asked for us at the desk.

I started shlepping Karen and our gear up to the room, exhausted after four 18 hour days of non-stop stress, worry, rush, work, driving and so on.

No PSW was anywhere in sight. It started to look like I would have to do it all on my own.