Guest Voice: Dealing with ALS amid COVID-19 restrictions

Anita Newton is a retired science teacher who lives near Bristol, England. She taught chemistry for 30 years before retiring when her husband, Craig, was diagnosed with ALS. Her interests range from sports like pickleball, badminton, and table tennis to reading, writing, painting, and crafting. She also enjoys traveling and is currently learning Norwegian.

On March 12, 2020, my husband, Craig, and I received the news we’d been dreading. We were fairly sure we’d worked out what the diagnosis would be, but to have it confirmed was still a shock. Now, there was no more hope or wishing. The sentence was served. Craig had ALS.

We were trying to come to terms with it when the COVID-19 pandemic hit our area a week later. With Craig being vulnerable, we were advised to stay home. I walked out of a 30-year teaching career like it was the end of a normal day — no retirement party or celebration for me.

The following week, England went into lockdown.

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It felt like a double blow. We were forced to cope with the diagnosis and the fact that we couldn’t go anywhere. We couldn’t make those trips we’d dreamed of. We couldn’t make more travel memories for me to cherish after Craig had gone. So we made memories at home. It felt unfair, but we had to get on with it. What other option was there?

Everything took place over Zoom or the phone. It could have felt very isolating without our strong bond and determination to make every day count.

Finding assistance was a challenge

COVID-19 caused other problems, too, including getting the help we needed.

My advice to anyone who’s been recently diagnosed is to get practical matters organized as early as possible to avoid stress when they become necessary. You will already have enough to cope with — but at least you won’t also have the barrier of strict COVID-19 restrictions to contend with.

We applied for financial help, but because no one could visit to assess Craig’s abilities, the process took longer. We were turned down and embarked on an appeals process, which was stressful and time-consuming and, frankly, should’ve been unnecessary.

I couldn’t help thinking, “Do they know what ALS is? Do they know the symptoms or outcome? Why are they making me work so hard? Why am I jumping through hoops?”

We needed to adapt the house to enable Craig to carry on normally. This included converting our bathroom into a wet room, but it was virtually impossible to find a builder. While we’d thought about this need early on, we hadn’t factored in COVID-19 restrictions. In the end, we asked social services for help. We paid for the work, but they found a contractor for us.

We returned to social services multiple times for help with other adaptations, like the lift we installed to get Craig upstairs in his wheelchair, which was costly but a lifesaver. And it allowed Craig to sleep in his own bedroom like he wanted.

As the disease progressed, it became more difficult for me to physically care for Craig. I was lifting him manually before I started using a lifting belt, an ingenious but simple device. This allowed me to keep lifting him for a while longer before his body became weaker and the strength in his core and legs deteriorated.

Once he could no longer help me by standing up straight, I had to try to hold his head up and keep his body straight with my head. This was physically demanding and even dangerous, so we moved on to a mechanical lift.

The crunch came when it became difficult for me to manage the lift. I needed an extra pair of hands, particularly when he was tired in the morning or at night. I tried to hire caregivers but couldn’t find any. COVID-19 had struck again. Agencies didn’t have the staff.

After an emergency situation, we received short-term care while social services tried to find us more help. Eventually, the organization found us some carers, but they weren’t used to dealing with Craig’s level of need. I continued doing most of the lifting and personal care, but at least there were two other people there in the morning when I needed the most help. I still managed the nighttime by myself, though.

As COVID-19 restrictions were lifted, we met with friends more often and even took a couple trips. These weren’t always easy because not all facilities were suitable for Craig’s needs, but we managed.

As Craig’s needs increased, I sought out more specialized help, which I managed to find — 10 days before he died in 2022.

For many people, COVID-19 brought far greater challenges than mine, such as losing loved ones and not being able to say goodbye properly. I can’t even begin to imagine what that would’ve been like. I was lucky in that I was able to spend every day, every possible moment, with Craig before he was taken from me.

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