A day in the life: work edition

I thought I would take this blog entry to cover a typical day in the life for Jennifer and me, as we continue to live with the consequences of ALS.

Since I’m still working and going into the office three days a week, we will assume that today is a workday. Before my day even starts, you should know that I now sleep in an electric hospital bed that not only provides comfort but ease of access from both sides.

The bed goes up and down, and has the ability to incline my head or my feet for further comfort. I sleep in the living room since the bed is where I spend most of my time when I’m at home, and being in the living room keeps me in the center of activity. It’s also where our ceiling lift was installed, and it provides the largest space for Jennifer and members of my care team access to both sides of my body for physical therapy, feeding, cleaning, etc.

(I should also mention that we had to pay $500+ out of pocket for a fully electric hospital bed. Raising and lowering the bed isn’t considered medically necessary since it primarily benefits the caregiver.)

My first tube feeding occurs typically around 6 AM. More times than not, Jennifer does it so gently that I sleep through my breakfast. Feedings typically last about an hour.

Around 7 AM our caregiver arrives to start helping me get ready to get to the office. This includes emptying my colostomy bag, wiping and cleaning my face, brushing my teeth, replacing my overnight catheter back with a leg bag, and then–with Jennifer’s help–putting my pants on.

At this point, I’m ready to be transferred from my hospital bed to my power wheelchair using our ceiling lift. Jennifer will pull me forward while the caregiver slides the transfer sling behind my back. With some amount of effort, the sling then needs to wrap around my legs. The ceiling lift spreader bar is lowered, the sling straps are attached, and I am slowly elevated from the bed and moved along the ceiling rail to my power wheelchair which I’m then lowered into. The transfer process can be a bit painful and draining for me.

My socks are changed and my shoes are put on, and then gently my nighttime t-shirt is taken off and replaced with an aloha shirt for work. This step is quite complicated since there has to be careful coordination between Jennifer and the caregiver to avoid hurting me.

Next, I take my three morning meds, a check is made of my face and ears, and my eye gaze machine and ventilator are loaded onto my power wheelchair. I’m now ready to be rolled out of the apartment, down the elevators, and to the front of the building where my administrative assistant is waiting to drive my power wheelchair and me to work.

After I head out, Jennifer and the caregiver tidy-up my supplies, laundry and bedding, and empty and clean my night bag.

When we arrive at work, because our office building is old and not fully wheelchair accessible, I have to go through the garage and a back door and navigate through a long hallway with multiple turns to get to my office.

Once in my office, my administrative assistant sets up my eye gaze machine on my desk, which I use as my desktop computer, and she also turns on and positions my ventilator, which is set-up for sip-ventilation and assists me with taking an occasional extra assisted breath when needed. I use my pupils as my mouse to navigate my desktop, and rely on voice to text technology when I need to compose an email or memo.

At noon, my caregiver arrives to the office with my lunchtime feeding, which consists of a second meal of formula administered through my feeding tube. I take this time to relax and listen to soothing music.

Typically sometime between 2 and 3 PM I’ve hit my energy wall and am ready to head back home. My administrative assistant packs up my eye gaze machine and ventilator, and she or my caregiver then drives my power wheelchair back to our apartment, which is only three blocks away.

We’re lucky that we live so close to my office. Jennifer or the caregiver are typically waiting for me downstairs, and drive me back up to our apartment.

Once we’re back in the apartment, my aloha shirt is carefully removed and replaced with a fresh nighttime t-shirt. Next, the transfer sling is slid behind my back and under my legs while I’m still seated on the power wheelchair. Then the wheelchair is positioned under the ceiling lift so that I can be lifted up and transferred back to my hospital bed.

Once I’ve landed, my pants are removed, my leg bag is removed, my external catheter is reconnected to my overnight bag, and my work socks are replaced with my fuzzy comfortable nighttime socks. Again, this process can be a little bit painful for me, but Jennifer and the caregiver take great care to ensure that I am well protected.

After I get settled, I typically take a short nap or catch up on email from my phone. At 5:30 PM, Jennifer administers my formula dinner while we watch TV. My bedtime routine typically starts around 7:30 PM with the administration of my first round of medication. Because I’m having some issues with swallowing, we spread out my medication, which I still take orally, in segments that takes about an hour to complete.

Sometime between returning home and bedtime, we also need to change my external catheter (changed every 24-hours) and empty my colostomy bag.

By 9 PM we are saying good night to each other, and I watch a little bit more TV until I fall asleep. Most nights I can sleep well, but on occasion I wake up with leg spasms that require help from Jennifer.

That’s currently a typical day in my life on days when I go to the office. Next time, I’ll share our shower day routine.

Thank you for reading, and thank you for all of your support. If you have recently given to the new GoFundMe campaign or have purchased items from our Amazon wish list, thank you very much. It all makes a big difference to Jennifer and me. Till next time!