Caregiving with Covid

Last year on the Summer Solstice, we shared our story publicly about José’s diagnosis. This year we’re battling a new beast: Covid.

We’ve been extremely careful over the past two years and even managed to travel extensively to and from the mainland—seven trips in seven months!—to participate in the Healey ALS Platform Trial and visit with family without getting sick.

Unfortunately, after a couple of recent events and time with family, I spiked a fever this past weekend.

At first, it was just a low-grade fever, body aches, fatigue, and an occasional dry cough. It soon progressed to high fevers at night (103), severe body aches, headache, chills, congestion, painful sore throat, weakness and fatigue. On Monday, I tested positive for Covid using a rapid antigen test.

While it’s one of the worst viruses I’ve ever experienced, it has yet to escalate to point that is unmanageable from home. We remain hopeful that I may be on the mend later this week if I follow the pattern of many people hit by the Omicron (vs. Delta) variant.

The challenge of course is that I can’t simply self-isolate to protect José. I’m his primary caregiver. On a typical day, while he’s at home I assist him with:

• getting out of bed
• transferring between furniture and his wheelchair
• getting in / out of the shower
• washing his hair
• getting dressed
• prepping and serving meals
• dispensing medication
• opening the front door when he needs to leave (or returns home)
• charging his wheelchairs

This is physically (and mentally, emotionally) demanding for a healthy person who also works full-time as self-employed business owner. Caregiving with Covid added into the mix is no joke. As soon as I realized I had a fever on Saturday, I self-isolated in one room of our apartment and only stepped out—after double-masking and washing my hands (or when in close contact, wearing an N95 mask)—to help José with anything he needed.

Under any other circumstances, we would gladly invite friends and family into our home to help. Unfortunately, José tested positive this morning, too, so we won’t risk exposing anyone else. Fortunately, he has mild symptoms thus far.

We alerted both his PCP and his neurologist as soon as he developed early signs, and are communicating with them daily. Because of this, they had already been able to do the legwork to check for any drug interactions with his current medications and were standing by for today’s test results. We were able to speak with his physician, who was able to prescribe Paxlovid (an anti-viral for Covid) which he’ll start taking tonight.

Between the quick access to the antiviral and staying current with vaccinations, including a second Covid booster in April, we’re hopeful this affords him some extra protection and a swift recovery.

Sidenote: I have some choice words for the folks who decided that caregivers should not be eligible for additional Covid boosters. What is the logic in not protecting the people who live with and take care of folks who ARE eligible and medically vulnerable?

We share all of this not to scare anyone, but to keep you informed. Updates on the blog have been less consistent since José’s participation in the Healey trial ended so we’re trying to shift to more frequent, everyday updates sharing our experience living with ALS. As always, we’re glad you’re here and promise to keep in touch (hopefully with happier updates!) very soon 🙂