Posted: 5/10/2008 12:22:16 PM EDT
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I pick up my kids for a visit every other weekend, and since their mom lives near my dad, I always stop in and see him on the way, then bring the kids by for dinner Sunday before taking them back to their mom's. Dad's an independant cuss, raised in an orphanage when his father died during the great depression, navy then college and grad school, he retired from a major pharmaceutical firm with about 40 US patents in Ag research about 15 years ago. He doesn't see well, and since mom passed on three years ago, has gotten a little slower and a little frailer each year, but he adamantly resists any help what-so-ever, no matter how tactfully it is offered. Six weeks ago, he was lying on the floor on Friday when I walked in to visit. He tends to get dizzy when he stands up, and I assumed he had heard me pull in the driveway, got up to open the door, and stumbled. But he was fuzzy when I asked him what happened, and about a minute later I was dialing 911. He logged off his computer Tuesday afternoon but never logged on Wednesday, and his Wednesday newspaper was inside his house, so I figure he spent about 45 hours on the floor, struggling to get up, partially succeeding, and falling again, from the scrapes and bruises on his face, head, elbows and knees. The headset magnifier he wears to see small stuff was found resting in the center of a spectacular star shaped circle of jagged glass in the family room window. ER>ICU that night, when old folks lay on hard surface, their muscles break down pretty quick, and the byproducts screw up their kidneys, possibly even ruining them. Got past that by Sunday but a cough developed into a chest infection, almost expected when someone's that weak, and they dropped a broad spectrum antibiotic on him, because they didn't have time to identify the chest bug before it went to pneumonia. Since Medicare doesn't pay past a certain day for specific problems, and since most hospitals and doctors now take their orders from insurance tables, you can't even private pay for a hospital room anymore if the book says you aren't sick enough to stay. With only a few hours to locate, inspect and decide on a rehab facility, we never really achieved any confidence levels in the quality of care he was to be provided, and those insecurities have become a problem in their own right, above and beyond health issues themselves. The diarrhea started only a few days after checking into the rehab facility, but they were a lot more concerned with the $200 per hour they were getting for therapy than keeping a warm body in their bed at only $200 a day, room board, nursing, and all. A broad spectrum antibiotic cleans out all the bugs in your body, not just the dangerous ones, and with an empty GI tract, new and beyond wicked bugs get a chance to flourish, and completely take over. If you've never heard of a GI bug called "C-diff", educate yourself, it's the meanest, nastiest thing I've seen personally. Naturally, an old time tough guy is going to head for the bathroom when he feels the rumble coming in the middle of the night, and it wasn't 5 days before dad fell again, busting his head wide open at the same spot as before, and adding two spectacular shiners plus an inch and half cut under his eye. It seems the Supreme Court has decided that elderly patients have a "right to fall" and cannot be restrained for any reason in a nursing home. The only treatment for C-diff you're likely to see a home offer is Flagyl, a drug almost as evil as the C-diff itself. While the bug has your loved one shitting their brains out, the Flagyl makes them barf up the few calories you can get into them, and puts a taste in the patient's mouth so bad that chocolate tastes like cheese, and everything, even their favorite foods, "taste like shit". Dad lost 26 pounds in three weeks. Remeron, a weak appetite stimulant, wasn't cutting the mustard, and Flagyl wasn't killing the C-diff, so we were actually looking for funeral homes, and manning his room 24x7, port and starboard, 12 hours on 12 off, since he mentioned he'd rather not die alone, when I talked the head medico into prescribing Megase, more as a symbol, a parting shot from a guy who never quit fighting, than from any real hope that we had time for it to take effect or make any difference. It went in at 11 PM last Saturday, after three weeks on the roller coaster from hell, and at midnight, he woke up asking what was for breakfast. Got more than 200 calories into him Sunday, and Monday he went wild, finishing a good effort at eating all day with a racous dinner from KFC (he loves fried chicken), for a total of 1050 alories for the day, five times any other day since he was hospitalized. He never really woke up Tuesday at all, 20 calories for the whole day, showing a white blood cell count of 44,000 and potassium levels approaching 7. They checked him back into a hospital that night, diagnosed a probable urinary infection, and dropped a dose of Cipro into him, opening the door for a new round of C-diff, when the first round hadn't even fully played out yet. For reasons unknown, the doc also stopped the Megase, and was about to order him discharged, with two potentially lethal infections and chronic, life-threatening malnutrition unaddressed. That's when I declared war. First thing Friday morning I told his nurse I wanted an order to re-start the Megase, or a medical reason, in writing, why not. The doc, un-informed after a month's vacation but not stupid, re-ordered the appetite stimulant, and by the time we met that day, had actually come around to helping us skate around the discharge regs by having us "consider" a feeding tube, which can't be placed until Monday. Message sent, message received. I was prepped, from the legal, political, and back alley points of view, to...push...till he came around, but that wasn't necessary. Dad'll be discharged Monday, as there's not a chance in hell I'm going to violate his living will for a feeding tube that buys him six more weeks of sleeping 24x7, unable to walk, eat or use the restroom on his own, and near totally blind, but he'll go back to the rehab facility with both infections testing negative, a healthy appetite, 7 days of IV reserves built up, 800 plus calories in him yesterday and 500+ the day before. First therapist who tries to sneak him out of the room for quick $200 bucks meets my fist, no threat, just how it will be. Lessons learned, so far... 1. When you see your old folks start to wobble, take away the keys, and get them a "Life Alert" necklace. Don't talk about it, don't hold a family meeting, just fucking do it. You don't realize it, but they already know they aren't cutting even basic survival anymore, and they won't fight near as hard as you'd expect. Unless you ASK, then their pride kicks in, and you'll convince yourself everything's all right, and you'll be writing a post like this, not long later. Just. Do. It. 2. Discuss their wishes, IN DETAIL, about how they want to live and how they want to die, BEFORE they can't make sense anymore. The standard boiler plate language "persistant vegetative state" means duke when you are facing any other situation, in other words EVERY other situation. Do YOU want to decide if they live or die, and how, including by slow starvation, or would you rather THEY decide, in advance, and spare you that heartache and second guessing? Forever? 3. Get the names and contact numbers of every critical professional they deal with, right now, not later. That includes banks, with account numbers, deposit box numbers with the location of the keys, lawyers, insurance policies with card numbers and the actual card location, and every doctor, plus a detailed and copied medical history, including all medications. Right down to who cuts the grass and how much it costs. Firearms with a trigger lock and no key work as clubs, not much else. Same goes for the garden shed. Old folks LOSE stuff, including full checkbooks, and the bills don't stop just because they are in a hospital. 4. If you can afford it, hire a Geriatric Care Manager BEFORE they need hospitalization. If you think you have time to research post hospital care solutions when the doc has his foot in your old timer's ass, pushing them out the hospital door, you are in for an unpleasant surprise. Medicare sucks, insurance companies, even the "best" of them, suck, hospitals kiss insurance companies' ass, and about the only chance you have to make intelligent decisions is with the help of an experienced professional, LOCAL to your area. 5. If you don't have a signed and notarized power of attorney and power of medical attorney, you're fucked. 6. Have your family numbers plugged into your speed dial system before you are chasing the ambulance to the hospital in Friday rush hour traffic. 7. When the initial shock wears off, and the ER stabilizes your old timer, don't sigh with relief, don't celebrate, first sleep, then eat, then sleep some more. Nobody wins, this only ends one way, it IS NOT uphill from here, the best you can hope for is a draw, death with a little bit of dignity, and as close as possible to their wishes. As soon as I figure out what day of the week today is, I will tell you how many 18 and 24 and 40 hour shifts I've pulled this week, and I'm RETIRED. If it isn't dialed in before hand, it never will be. 8. There ARE people out there getting rich off YOUR dreams that one more course of drugs will solve the last problem, mom or pop will return home normal and the nightmare will be over, and YOU are the only one working FOR your old timer. When you see something you don't like, slow tests, slow response to the call button, anything less than a complete clean-up for EVERY bowel movement, make fucking noise and DO NOT quit till you get what you want. That said, pick your battles, bui don't overlook even a sniffle. 9. Live every day like it's your old timer's last. It just might be. |
Brother, thank you for sharing that hard-earned advice. My dad passed away last January (2007) after about 15 years of constantly fighting progressing congestive heart failure. He was in Florida (versus me being in Colorado) and I did what I could but, like you sai, all roads lead somewhere and it ain't Rome. Cranky old bastard - one of the last things he said to my siblings and his grandkids around the hospital bed they put in the living room (because he wouldn't leave) was, "Would all you all please just shut up?!?"  . Docs said he was running on about 11% of functioning heart tissue when he died and would pass out if he raised his arms due to his BP being so low. Still refused in-home care and wouldn't go to a "facility".Make your peace, as best you can. Do your best so, when the time comes, you'll mourn but not regret. Know that you're doing a damned good job for your old man and hope you raise your kids right enough for them to do the same when it's your turn. God bless. I'll be thinking of you and yours. |
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I'm so sorry to read this post but truly it is good advice and a good post. Unfortunately at my age, I know for I too have been there. I've had good luck and bad. Like you I learned to get involved and most important question as well as to say no. When my father passed, it was his choice to do so at home and not prolong the inevitable. Though in terrible pain, he was happier surrounded by family than alone. That was his choice to make and my duty to honor. To me, that was cut and dry and I have no regrets or second guessing. I miss him still all these years later. I wish I could tell you its easy but it isn't. All we can do is what we can and carry on. God bless you and your family. Tj |
Looking at me out of the corner of his eye, as I clipped a bed alarm to the back of his collar, "...take me less than two days to figure a way around this..." |