It has now been 9 months since RJC has been at her Day Program and since I have been staying home to care for her due to the Coronavirus. We are currently in the midst of a scary surge of cases. Vaccinations have begun but there have been problems with their distribution.
Our lives have pretty much remained the same since the first time we were quarantined. Hubby is working, RJC and I are home together. We take rides, have driveway visits (which have also morphed into parking lot visits with coffee), and have become quite comfortable with Zoom get togethers. RJC loves to help around the house (dishes, baking, laundry, cleaning) which is both wonderful and complicated when her OCD issues pop up. We still walk outdoors though we have swapped our shorts and tshirts for winter coats, hats and gloves.
The longer this goes on, the more time I have to think about the future. Life after COVID-19. Not just in terms of where I hope we will be vacationing at some point, or the excitement of the possibility of seeing relatives and friends and giving them huge hugs, or going to see a show, attending a hockey or baseball game, catching a movie etc. Nope. Not this lady. This lady is mostly thinking - some may say obsessing - over RJC and what her future holds...a time post-COVID-19.
I will preface this with saying: I have ZERO interest in arguing with anyone over whether or not people should be vaccinated. Everyone has their own opinions and I can be respectful of those who choose differently than we do. It is an especially touchy issue in the autism world as there are those who feel that vaccinations have caused or played a part in their child's diagnosis. Bottom line, we are aware of all of this and we choose to vaccinate.
I have been obsessing over the vaccination process. Realistically, there is no way I can currently see that RJC will be able to be vaccinated unless she is under general anesthesia or somehow very very medicated. She is not small enough to hold down and she remembers her younger days and getting shots. We cannot even say the word "shot" without her starting her "no shots" scripting. We tried a trial run - attempting to get her a flu shot. We took her with us, letting her watch both me and my husband get our shots first. Nope. She was having none of it. We tried flat out bribery. Uh uh, no way. Her lack of cooperation is making me very nervous as I am unsure of how we will be able to go back to a "normal" life without her being vaccinated against Covid, not to mention my anxiety over trying to keep her safe has been sky high for a while now. While we are all about masks, social distancing, and washing hands, we are well aware that nothing is 100% so having the vaccination would give her an added layer of protection. In any case, this has been a huge worry that I cannot seem to figure out.
The second concern about her future is (hopefully) more long term, which is: who will take care of our gal once we die? This has always been a concern but watching what has happened in long-term care facilities, including group home settings, and how rampant the cases of Covid have been, it is a huge concern. Simply by their nature, I understand why the virus spreads. People are in close contact and employees come and go, back and forth from their "real lives" to these settings. Thus, there is more opportunity for Covid to be brought in. Added to that has been the awful heartache the residents and their loved ones have been going through in not being able to visit with each other. I know people who have been separated from their children for months (as have people with loved ones in other types of long term care settings). The thought makes me so very sad, so very scared, so very anxious.
I have started to write down all of the important information that somebody would need to know about caring for RJC. Names and contact information about various professionals, agencies and social groups that she is involved with in the hopes that this will help with consistency and she will not lose any important services or support. I've added medical information. I still need to add specific behavioral info and just general tips on how to handle certain situations that may arise. Doing this has given me some small piece of mind but it also makes things very real. Especially as I enter my 6th decade. Tick tock, tick tock...
We have many unknowns, like so many people all over the globe these days. We will hash them out and at some point we will figure things out.
It's what we do.
