Pictured: Carrie’s Son

Carrie Leljedal, Family Member

Carrie Leljedal’s son resides in a facility for adults with developmental disabilities. She and her husband bought a home near their son’s facility so that they could visit him, but the pandemic changed everything. Click the black squares below to hear and read about Carrie’s experience during the COVID-19 pandemic. The expanded interview (edited for clarity) is available at the bottom of the page.

To make everyone’s life easier my husband and I bought a house less than two blocks from the facility so that I could have 24/7 access to my son and prior to COVID I had 24/7 access. I would come and go as I pleased. There were a lot of times I would go over 9:30, 10:00 at night just to help the staff get him ready for bed, get him in bed when it was quieter and it was just, less people around. Being the fact that he was two blocks away, if the weather’s nice and, oh he wanted to come home just to play with the dogs. Staff would take a walk with him and just come over. For all of us it was a really good situation.

He comprehends a lot, but neither one of us comprehended enough to know – it just didn’t make sense. Why couldn’t I see him? Window visits are not visits, I don’t care what anybody says. Outdoor visits with a plexiglass divider and masks, that’s not a visit either, that’s a prison.

I didn’t see him again until about June 28th or so when they finally started letting him go back to doctor’s appointments because I had thrown a fit because we had missed a lot of doctor’s appointments. And with my son’s medical history being so complex, we couldn’t continue to keep skipping appointments.

We were supposed to go the doctor again that afternoon and then I got a phone call that just said “We cancelled all doctor’s appointments and nobody’s allowed in the building as of now” And I’m like “but I have…” and they’re like “you can drop what you’ve got for him, that’s fine, but you can’t see him.”

They kept saying we were protecting them — but what were we protecting them from? You can’t keep somebody alive just to say you’re keeping them alive which is what they did. And my son lost a lot of mobility, he lost a lot of cognitive ability, from spending, you know, the better part of eight months in his room by himself.

Click below for the expanded interview (12:08).