Here’s what I have done for the past two weeks. It feels like I’ve been lost and wandering in a maze, while suffering from sleep deprivation and too much caffeine.
Our latest adventure began with DOB’s latest trip to the emergency room in the wee hours of the night. DOB is now safely back home and in the embrace of her loving family, where her caregivers now spend our “waking” hours each day stumbling around in a walking coma feeding her, negotiating her moves from bed to chair and back, emptying a commode chair in which most (but unfortunately not all) of her piss ends up in the bucket, coordinating with a gang of home health people checking her blood sugar and blood pressure (which, of course, we now do before each meal, so who needs them?). In my free time, I try to negotiate the maze of federal, state, regional and community “resources” for either in-home “personal care” (i.e. changing 3X adult diapers, and providing personal hygiene services that would be burdensome enough if the patient was an anorexic dwarf, but which in this case involve a patient whose flab and folds equal the mass of approximately 3 morbidly obese dwarves.
Prior to our recent venture into the dark, I elected not to do any of this in advance, preferring instead to use my energy to plead that TCG pay closer attention to managing DOB’s blood sugar (he didn’t), or to lobby that he take her ailing 80+ pound dog with the open sores on his appendages to the vet (he didn’t).
In retrospect, this was stupid of me. Now, not only do I have to do all the research, record-keeping, and bureaucratic wrangling, pre-paid funeral arrangements, etc. I have to do it while TCG huffs and puffs in my ear and tells me how much he appreciates my help. The fact is that I’m better at this than he is, but the prospect is more daunting than trying to negotiate King Minos’ labyrinth. At least in the labyrinth Deadalus had the delightful prospect of eventually encountering a minotaur who might mercifully tear off his head and slurp his neck like a popsicle, thereby putting an end to his suffering.
Thanks to the magic of Medicare and Secure Horizons we have all these worthless home care services like a nurse who can take blood pressure and blood sugar readings twice a week and copy down from our three times a day log of same. Nursing services we need like a hobo wino needs a glass of chocolate milk. We now also have a physical therapist and an occupational therapist twice a week for the next two weeks. Like DOB is going to be able to get into her shower stall and actually clean between her fat folds as a result of such therapy. What we do need, and have desperately needed all along, and asked each health care professional who stops by, is somebody to bathe her and change her clothes a couple of times a week. But although rumored to be afoot, we’ve seen no evidence of yet. Thus, the funky unwashed smell continues to marinate and evolve almost to the point of self-awareness. Wait: maybe this is how zombies are made.
Should I succeed in completing the application in for Medical (aka Medicaid in California), and should she qualify, and should we then spend down her savings to the point of impoverishment, we might be able to find a Skilled Nursing Facility (which Medicare and Medical might pay for if we assign the facility her entire Social Security check, and if her primary care doc prescribes as medically necessary) or an Assisted Living Facility (which they apparently won’t pay for, but which ironically is actually cheaper than the SNF and more appropriate to her needs) me and TCG might get a life back and our marriage might survive. Otherwise, let’s hope there’s a minotaur there somewhere, maybe back behind the stacks of new adult diapers and plastic-lined bed pads, or behind the trash can that contains said products after marinating in urine for a day or so.
As it is now, I’m stumbling through the waking nightmare my life has become and wondering how much longer I can keep my actual emotions and thoughts shut down enough to keep from screaming “shitfuck” while hitting my roommates upside their heads with a shovel. Last night, after making her dinner and serving it in her room only to find out all she wanted for dinner was another pain pill, she began for the gazillionth time to demonstrate where the pains were and how they were moving around from front to back or whatever. Without thinking things through first, I said “I don’t…” and almost finished what wanted to say “…give a shit”. Instead I managed to finish: “…think it matters where you pain is. The vicodin will find it”. I then drank too much coconut vodka, had an unsatisfying fight with my husband, and went to bed.
Yup. Need that minotaur.