Ma, when you wake, I’ll know it. You do not know about the bed alarm I have placed between mattress and bedspring, and you’re hearing is going so you won’t hear the alarm that will ring near my head. Rough time on the toilet? I’ll hear that too. I have bugged every room in the house, but technology is now beyond you. Turn on the stove while I am sleeping? I’ll get up and cook that egg for you. You’ve started one fire already. Raging at the television while I’m out weeding or reading? I’ve got speakers outside that alert me to all your doings.
We have entered the time of surveillance. The right to privacy no longer applies to you. It is my job to observe, monitor, and intervene. As necessary, I will search, seize and obstruct your movements.
While continuing to preserve your right to refuse the anti-psychotic and anxiolytic medications I believe would help you, I cannot refuse to keep a sharp eye out to see how I am needed. That would be negligence, which would be unethical in the first place and criminal in the second. You try to sneak, but you’re not getting away with anything. I am grateful you are too weak to run, or even to wander.
You are long past the point where if someone else cared for you a placement in a long term care facility would already have been enforced. You are lucky. Trained as a Long Term Care Ombudsman, seeing the worst possible things in those environs and forced to investigate them, that will not happen until I cannot lift you into and out of bed on your worst of days.
I sold your truck. Took your keys and sent your license back to the state, replaced it with the I.D. they sent back (finally, after much fighting about how I could not possibly get you to a D.M.V. office). You in your yellow muslin sun-dress. The best state-issued identification photograph I have ever seen. The dress I poured over you for your birthday, dressing you like a doll and putting on the malachite necklace I bought you for flag day. I cooked lobster for you and we played Elvis Presley CDs. You don’t even know it’s gone, not having been out of the house now in four months (no matter how I’ve tried to get you to see the chairs I have placed in the sun).
Sometimes you call me ‘Jason’ although I am Robert. I do not know who Jason is or was or if he simply some construct of your mind, and you have always corrected yourself almost immediately. This is not important as long as your ‘Jason’ is allowed to clean and care for you when you’d rather him than me. Still, it feels like a bit of a loss. Occasionally, you also confuse me for the dog. That is a particularly difficult one, for I do not want that ‘chewy stick’.
You stabbed me the other evening with the meat fork. I was getting ready to bake potatoes and while piercing one with a fork you came out of nowhere and shoved the meat fork through the potato in my hand, all the way through my hand.
“You have to use this fucking fork to get all the way through the potato. Don’t you know anything you stupid bastard?” you screamed.
I didn’t let you see my hand after I took the meat fork from you and finished piercing the potato. Your aim was amazing, missing bones but going through from the palm to the top of my hand. I know you can’t help yourself. And I have about a million Band-Aids. Later in the evening you noticed the bandaging and you wanted to know what I had done to my hands. I mentioned scraping it while moving some concrete bricks.
Today you thought it was getting so hot inside I should turn the heat on and make sure the air conditioner was running. Today you asked if it was global warming that made it so warm for December, and why hadn’t I put up the Christmas tree. Today I took the scissors from your hands as you thought to trim Barkley’s eyebrows because they seemed long (he was picked up, trimmed, and dropped off yesterday). Today you toileted yourself all day successfully. I don’t know what precious gifts night will bring.
You are losing your stories (hence, the title of this entry). I work actively every day to try to help you pull from your long-term memory the stories of your life on The Island, to help you remember things so I can write them down for the novel I’m working on based on your life. Your short-term memory is shot. Yesterday (I counted) you asked nineteen times what day of the week it was. The calendar hangs on the wall just to your left, the X’s mean those days are gone. I am quite religious about my X’s. I want to hear again about the time Grinne Vasfahrt let you drive his new Olds and you rode it straight up onto the woodpile. I want to hear about you cooking the crow with Danny VanDerZanden, then getting beat by your mother for eating a ‘bird sure as hell full of worms”. But you’re losing these, too.
I haven’t told you the County is going to allow The Island to be mined for gravel , that it will become a lagoon, a lost place in The River, the farms our ancestors settled in the 1860’s lost. I can’t bear to let you know.
When you seem to be particularly well, I’ve done the shopping. Walking into town with my little cart and my list. There’s been a cost. Pulling the cart has done something to my arms and my back. I can’t do it anymore because the pain after is too much, at least for a few days. You wonder why sis and her partner come out now each Friday night and drive me around. I just tell you it’s easier. I don’t tell you holding my arms in front of me to wash dishes is excrutiating. Soon I must paint the house and this will be hell. I will also keep this from you. Unlike yourself, uninsured, I am without recourse to anything which might relieve the pain. This is a burden, but I refuse to believe it burdensome. That is grace. (Please, let this pain be grace.) I have to believe now in grace, even if I refuse steadfastly to believe anything else.
It takes about four hours per day to care for your body on a personal level. (Bathing, toileting, medications, getting you in and out of bed, etc.). It takes about two hours in the kitchen between cooking and feeding and cleaning for breakfast, dinner and snacks. (Curiously, you are never in the mood for lunch.) To keep the house clean (and I am uber-clean-freak), I estimate another four hours, what with vacuuming, laundry, dishes and dusting (we live on a very active road and the dust is unbelievable. Ma being asthmatic, it’s something I have to be constantly vigilant about.) Let’s say I spend my own hour each day pooping and peeing, taking a shower, shaving and brushing my teeth. I must attend to all the outdoor things, and spend about an average of one hour per day on such (though some days this is four hours and some days none). I spend about three hours with you just observing your present state. This is a most important activity. Even if you’re just watching television, I am observing you. That’s fifteen hours. This doesn’t equate to nine hours of downtime, or nine hours of sleep. Because you are on a three up, three down schedule and your circadian rhythm has vanished, I am on the same schedule. I now sleep for about one of your three downs. Anything else is catch-up.
Sometimes, if I think you’ll sleep for a while, I nap outside on summer nights (and anyway, I have all these alarms). I wish I could see the stars, but my glaucoma has advanced to the point where they are simply not there. I am told new glasses will not bring them back. (I am writing this first in word in 18 point font).
Try as I might, Ma, you have no good days left. Try as I might, I have none either. You get excited when I make you bread pudding or crème brulee or your favorite thing ever, a French Dip. But these are only moments. My good moments are those few where you do not rage, or when you remember me.Although not enamoured of the question, I have certainly come to understand the feeling behind “which tools?”*******
It seems some of you have wondered where I’ve been…