I am a caregiver of a vulnerable adult during a pandemic.

This job is not an easy job without a pandemic. It involves diapers, medications, purée foods, equipment, lifting, cleaning, hygiene, record keeping, and time – lots of time and this all leads to mental and physical fatigue. Not because I don’t love it, not because I don’t adore her, but because I’m 100% responsible for her well-being at all times. I’m keeping her alive. If I’m tired today and simply don’t want to do it, she suffers. That’s not a choice. Thank God for her daddy and sisters to help ease the day to day grind of care.

So, today, I’ll change her diaper, most likely her clothes at least once. I’ll, with the help of Lila, make her breakfast and get her a cartoon going on the TV and her cart of rattles. I’ll strip off bedding that needs washed – again. I’ll finish up cleaning what got yuck at the end of the day yesterday. Then that diaper and food thing goes on repeat the rest the day.

She’ll sit and shake her toys. Watch Scooby, most likely Disney’s Nemo, and most every day has Princesses adorn the screen. She’ll scream when the dogs bark, her show ends and no one is there to start a new one immediately. She’ll let us know if she is hungry or her toys have been scattered upon the floor – FYI by her.

This is not to mention the care for everyone else. Meals, laundry, school work and day to day needs. Bai is just a piece of our family puzzle. Now we are even dealing with college interviews via phone and applications for Isobel. Next is virtual tours. She turns 18 tomorrow!!! How?! 🙂

To me, this is just normal. Our days of caring for her are part of our family’s routine. Nothing odd of even hard about it, it just has to be done.

Some days my muscles ache from lifting her wrong. My back twitches from giving her a shower. Some days I want to cry, and I’ll admit sometimes I do, when she has barfed everywhere, her diaper has leaked, or she cries and I just simply don’t know why.

People have told me they’d watch a reality show about our lives – you’d be bored. Maybe that is my perception. Maybe you’d be fascinated. To me the ins and outs of each day don’t seem particularly interesting. Though, I will admit to wondering what it would be like to not have to daily do each of these tasks. Yes, it is like having a baby forever. No, she is nothing like a baby. Does that make sense?? There is no pop up and go. There are a hundred tasks before any go can be got.

I do my best to keep this amazing young woman happy and healthy every single day. A job that can be exhausting. Now more so with a broken world.

We still are hunkered down. We still are hunkered in. The last restaurant my family sat in was in February and you will not see us in one for the foreseeable future.

The last movie in the theater – the week after Christmas. I can’t even begin to think when we will do that again.

Why should you care? Well, maybe you don’t need to care, but maybe you can see what some people right now are living. We can’t go out there and live in this pandemic. I do my best everyday to keep my adult child with kidney disease, compromised lung capacity, heart complications, a seizure disorder, and compromised immune system alive. I’m just trying to keep her alive. Our whole family is trying to keep her safe and happy whilst trying to stay sane and happy as well. Thankfully we are doing ok. Not to lie though, the girls have asked to go to Disney no less than 1 million times haha. 2021.

For her – can this be over yet!?


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