Here it is, just one short week after being discharged from the hospital after being treated for Respiratory Failure, and I find myself sitting in my mother's dim hospital room listening to her cough and waiting for her to finally fall asleep as the hour slowly creeps farther and farther past midnight. At the same time my daughter is home suffering from strep throat and my son is asking his mom why his daddy isn't home again. Doesn't daddy love us as much any more seems to be the way his mind is trending, and I'm at a loss to explain things to him.
Time and again we are reminded that actions speak louder than words, but when your child is on the Autistic Spectrum this blithe little truism that we give so much lip service to without ever really considering it's reality takes on a whole new meaning; for when a child struggles with verbal communication the way my son does actions really do mean more to his world view than words ever could. So how do I explain to him how sick I was, or how sick grandma is? He can't see respiratory distress in a way that allows him to understand how serious it is unless he gets that sick himself, and even then he might or might not be able to make the connection between what he experienced and what others are going through. If he does, that still leaves Grandma's obvious confusion. It's a somewhat distasteful fact of life that illness in the elderly often causes what is referred to as "Altered Mental Status". Indeed, more patients over the age of seventy come in to the emergency room suffering from serious confusion as a result of a urinary tract infection than do those who have suffered a stroke! Admittedly, it is a huge relief to know that your loved one will recover as the underlying illness is treated, but oh the agony of listening to a loved one who was just days ago more articulate than anyone around struggle to find the words they need to express even the simplest need or want. Even worse is when they start getting paranoid and accuse you of trying to put them away for some reason that makes absolutely no sense to you at all. You know that they don't really mean what they're saying and that it's just the illness talking. You tell yourself to just be patient and maybe they won't remember all the hateful things they've said when they recover, yet all the while each word is another knife to your heart; a sly, stiletto like cut that slips through your defenses like a master assassin. And you wonder how much worse hearing such things from his beloved grandmother could be for your poor, bewildered son who has always known his grandma as a pillar of peace and tranquility in a world often run a muck. And as the clock softly strikes 1:00, you prayerfully bow your head in shamed relief that the late hour has kept that scenario from coming to pass as of yet, a relief tempered, perhaps even poisoned in a way by the knowledge that this all could repeat itself tomorrow when your son is around to hear it.
Then there is the question of what happens when they discharge her home. Will she be recovered enough that the outbursts are just a bad memory, or will she still get worse as the sun goes down and the long shadows of days end stretch before you just as she's done each night she's been a patient here? And what of those hours when both you and your wife must be at work at the same time? Up until now you could relax in the knowledge that if something happened while you were away, she would be there to handle any emergencies and see that her grandson was safe and unharmed. But now? Will she be recovered enough that you can once again feel secure in the safety of your autistic child? Or will you need to find a sitter that can handle both of them while you're away? And if you do, how are you going to pay for it? Yes, Medicare will pay for a certain amount of in-home care; but their definition of what is necessary and appropriate will almost certainly not include your child's needs, or yours for that matter. And so you peer blurredly at web sites of sitters on your smart phone, and silently curse at the $15.00 an hour rate charged by the cheapest of the sitters who are bonded and have the necessary background to set your mind at ease; for at those rates you may as well call off from work since most, if not all, of your after tax pay will go directly to the sitter. Yet no matter how understanding your boss, there will come a time when you'll either have to go back to work or become unemployed at a time when fewer and fewer full time positions are to be had in any field.
And so your mind continues in a worn out circle, like a broken down merry go round as your body reminds you that you still haven't recovered from your own illness yet. Well aware that you're probably making a mountain out of a mole hill, but too weary to stop. And that dear reader is where you find me now, grimly determined to find a way out of this even though I know I'm slowly driving myself right back to where I was just a week and a half ago. But the soft, even breaths coming from my mom's bed tell me she's finally asleep, and so I must bid thee adieu and get what sleep I can tonight. With luck, the break of day will bring new ideas and new hopes on how we can deal with this. So fair well until we meet again in this little corner of cyberspace.