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- Tue Jul 06, 2004 7:03 am
Over the past 4 years, my mom ahs been getting exponentionally worse. She wa sput on Regalin, which depleted her dopamin leevls. It brought on advanced onset of Parkinsons. Which froze her bowels/Intestinbes. She couldn't move her bowels, expell gas, and that destroyed her mind (total insanity). She refuses to do anything to help herslef, attempted suicide Nov 13, 2003 (and believe me, I spent 6 months 2 days trying to prevent it, while my family just laughed at me for thinking a woman known to have needless ready to overdose on insulin, would ever move past just syaing she's going to kill herself.) The very intelligent psychiatrist then relased her 24 horus later, because she didn't mean to wait until I was asleep, and my dad was out shopping, to lock herself in our bathroom, with pillows and a blanket to muffle convulsions, and then inject herself with 4-5 needles full of insulin (Lenti?) I, being the only person on the planet never to do this on a daily basis. How foolish of me to think this was planned, and not an accidental spur of the moment thing meant to accomplsih somehting entirely benevolent. Sicne then, she has gotten steadily worse. She had that bag for waste thingie installed (Not Colonoscopy, but one fo thsoe colon things), whcih does ntohing. She was given a staff infection at the locla hospital (with 3 others), which ahs now amd eehr germaphobic. My da dis forced to dealw ith that onessive compulsive cleanign, as her body is entirley paralyzed. She insists she ahs staff, cellulitous,a nd E.Coli, ebcause the emats eh ate must ahve ahd it, ebcause meat CAN have it. And that's her in a nutshell. because soemhting CAN or MIGHT happen, it's a guaranteed conclusion. She's been anorexic, had muchassuen by proxy, and nwo ameks a whooping sound multiple times a day, getting louder nad lower, drawn out and short.
She refuses tot ake any medicine, or do anythignt hat might make ehr feel the slightets bi better. She endleslsy demands we tell ehr what to do, then refuses to do it. she demands we do soemhtign,a nd when we go to,s eh screams and yells for us not to, only to screama nd yell for su to. she actualyl amde my dad drive ehr back and forth tot he hospitla 4 times, ebcause she screamed in hysterics until eh took ehr, only to scream again tog o home whentheya rrived, tos cream tog o abckw hen they got hoem,e tc ad naseum. Now she cna't even speak, move, and she insists on writing in letter so tiny, you'd ened the Hubble Telescope to read them. I eman she literally writes as smalla s humanly possible, leavign avst spaces above the words, then refuses toa ccept we cna't read it. she refuses to believe we don't know the cure for ehr,. isnistign we jsut don't believe she's suffering enough. She ahs tghreatened me, goent os trike me ad nauseum. "I'll breka you arms. I''' feel sorry for you." If I could move, I'd kill you." and this is the atcions of soemoen who si of no threat to herself or others. I mean, the sheer incompantecy of the doctors who cared for her (4 of whom refused toe evr see her again) is enough to make one eliminate doctors everywhere, if only to aleve the suffering INTENTIONALLY caused patients.
My mom won't do anyhting to help herself. Won't take medicine, won't eat/drink, won't see professionals (Physical/mental). and she endlessly repeats ehrslef every 5 secodns. LITERALLY. My angel fo a dad cna't leave ehr alone for 5 secodns before she's in hysteriucs for himt or eturn,s o ocne agauin she cna ask him whatt o do, so he cna tell her he ahs nbo clue, or else suggets soemthign whcih she'll tantruma bout not doing,t hendemand he teklls her the solution she seeks,w hcihs eh'll never take.
This is a real rpoblem, not all mental. What can be done? S he's intentionally starving herself. She weighs 80 freaking pounds. All the doctors did were stop gap solutions known not to work. How many enem,as doe sit take before a DR realizes it AIN'T workin? One got lsot in ehr soemhow, and the Head Nurese was astonished she was even released, seeing as how she CLEARLY was in no condition to leave.
| Dr. Russell M
- Tue Jul 13, 2004 12:56 pm
I have read your message, as far as I could decipher. I see that your family is putting up with a highly demanding life situation. The care required could squeeze the life out of others. Unfortunately, the internet may not be the best place to seek help.
The important thing is not to lose focus and get drowned in the process. Everyday might present new challenges, and we need to do a daily evaluation of patient needs and actions to be taken to meet them. Make a list of all the concerns your mother has on a daily basis. This might sound monotonous, but once in a while we might encounter concerns that can be addressed.
Listening is the key to successful care, no matter how bizarre the demands and useless the talk. This is easier said than done, but a conscious effort should be made in this direction. At situations we might deem helpless, help is at hand in the form of something we take for granted, time. Time is something we can keep spending, even without words, just by being there or holding hands.
Nutrition may be the last thing on some patient's mind, even though we might be upset at seeing our loved ones going down in weight. So, there is no need to push the patient on food. Less energy is required by the body of a person who seldom moves around, and subsequently their body demands less nutrition.
Openness, honesty, and hope are values that should be made the cornerstone for any form of care.
If you have specific questions, it would be easier answering. So, kindly feel free to post any more questions that you might have.