COVID-19: A Day in the Life of Someone Caregiving for an Adult Child with Special Needs

[Additional essays and videocasts regarding psychological ramifications of the COVID-19 virus outbreak can be found at: https://communitiescollaborating.com/[

Usually, working from home is the norm for me. However, now my special needs daughter is home because her work program and residential program are both closed. Works has to take place between her needs and demands. She (G.) has an extremely rare mitochondrial disorder—only about 100 people in the world have it, and her type is not even the usual type. Her disorder causes cognitive and physical disabilities (her balance and coordination are affected, so she uses a wheelchair now). While her chronological age is 20, she reads at about a 3rd grade level and emotionally is about at the 8-9 year old level. We stay home as much as possible, going out just once a week to buy perishable groceries. She is vulnerable because of her disorder, and since it’s so rare, I have no idea how she would handle the Covid-19 virus. And if I get sick, who will take care of her? My husband is a physician, so his job is considered essential and he’s at work every day.

Here’s What A Typical Day Looked Like

6am: Up to walk the dog before my husband leaves for work.
6:30: Back home, husband leaves, daughter (G.) still asleep. I have my coffee and start looking at emails.
7:30: G. wakes up, I help her in the bathroom and help her get dressed.
7:45: I get her coffee and make breakfast for both of us.
8:30: I help G. brush her teeth and do the dishes, then help her settle in the living room to watch tv, use her tablet, etc. I put her orthotics and shoes on for her. This is part of my morning workout—orthotics and shoes are not easy to put on. Then I finish getting myself ready.
9am: I call the local Social Security office to get them to correct an error from my call last week. I need a letter that states she is NOT eligible for Medicare; I got a letter telling me what she earns every month through SSI. I have to call the office twice because the first time, the connection is so bad that they can’t even hear me through static and hang up. I continue checking emails while I am on hold.