Haloperidol, an antipsychotic, is the latest drug to join my mother’s lengthy prescription.
Before that was lorazepam, to tamp down evening anxiety, manage the ‘sundowning’ that could keep her awake until sun-up, and ignite her for 36-hour insomniac stretches, in a strung-out state of high alert and distressing disconnection.
Who are those people outside, is that the army? Are they rounding up an attack? Will they kill me? Am I safe?
There is nobody there. I draw the curtains to obscure this frightening vision. I place half a benzo on her tongue. Within 20 minutes, the fear dissipates.
And before that, before the lorazepam, we added Omeprazole to ease digestion sluggish from a lack of activity, a stomach upset by an expanding list of medications.
Dementia presents with a host of symptoms nobody told me about. I am aware of scrambling to keep one step ahead. To try to prop up my mother's failing body as Alzheimer's tears her brain apart.
Incontinence. Urinary first and then fecal. She has lost the sense of urgency—knowing when she needs "to go." And so I am only aware she’s gone by the smell.
If I notice any evidence of straining, I must titrate the doses of stool softener upwards. Constipation in one so sedentary, whose appetite has diminished despite the treats I nudge towards her to tempt her (Coke, chocolate, full-fat too-sweet yogurt), must be avoided at all costs.
I change my mother’s diaper often, and still not nearly often enough. I smear the same zinc barrier cream on the inflamed skin of her buttocks as I did with my babies.
I drop painkillers to the back of her tongue and then press a child’s cup with a straw to her lips, "Here, ma, sip."
There is pain in her back from sitting curled too long in a chair; a soreness in her knees from the creeping stiffness of inactivity; aches that she cannot describe. Cannot name.
I urge her, as I did with my children when they were little and complained of some indescribable discomfort: "Show me. Show me where it hurts."
I do not know if my mother’s pain is real or imagined, if it is the perceived physicality of what is happening in her head.
Sometimes—not often, but sometimes—she voices heartbreaking recognition that all is not well.
“I think I am going mad."
"Why, ma?" I ask gently.
“Because I cannot think any thoughts. There is nothing in my head."
"Shall we have a cup of tea?" I suggest.
(Tea. Always tea. If in doubt: a distracting cup of tea with two-too many sugars. How long before she will be able to hold the cup safely to her mouth? The tremor in her hands is growing marked).
Her eyesight is going. I notice a milky opacity spilling into the deep sustaining chocolate brown of the iris. I tip her tablets onto my palm. She used to pluck them off, one by one, easily. Now she must feel about my open hand, groping for pills.
Who tells you all this?
Who tells you dementia starts in the head and then hijacks the body so that one by one, as her mental faculties go, her physical abilities—to walk, to wipe herself, to register thirst or hunger, know where a pain is—do too.
There are drugs for all these things. All of them.
Except the one we need most.
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