Mar 06, 2010
I posted this on the Caregiver Community forum, and now pasting it here in the hope that someone might respond who has experienced a similar situation.
My 76-year-old mother is destroying her life as well as mine and my siblings. Her coping method with any medical problem has always been to ignore it, treat with over-the-counter meds and finally deny its very existence. Last year she became ill enough that she was forced to face her numerous medical problems, which are:
1. Severe scoliosis and spinal stenosis. Her right hip is several inches higher than the other. She postponed surgery for so many years that the neurosurgeon doubts he can help her. The discs from L1 through T5 are crushed to the point that they obscure her spinal cord on the MRI films. As predicted, Mom is now becoming incontinent and can barely walk more than a couple steps. Now she won't eat for fear of not making it to the bathroom, but denies the problem to medical professionals.
2. Uncontrollable stomach and duondenum bleeding. She has hundreds of aterio-venous malformations (AVM) that require 2 units of packed cells to be transfused roughly every two weeks, more or less.
3. Self-medicating with over 20 advil a day resulted in a destroyed stomach lining, about which nothing can be done.
4. Abdominal aortic aneurysm recently discovered on a pre-op x-ray. That and low hemoglobin right after a transfusion resulted in cancelation of the surgery.
5. Just enough dementia to result in shrieking outburst if anyone says something she disagrees with - which is just about anything.
My father died in 1994 which forced both of my parents to finally prepare a will. After his death, my mother saw an attorney and updated her papers. She purposely left out a general power of attorney. I was already noticing signs of dementia at that time. The one piece of paper we need to help her has tied our hands completely. Because Mom cons the doctors into believing her fairy story that she can live alone independently, (despite the family trying to inform them otherwise) she is human wreckage dying alone in her own filth.
Mom refuses to allow us to help in meaningful ways. She can't get in and out of the bathtub and refuses to allow any alterations to her home to improve her hygiene and mobility. She refuses to use a walker and has fallen several times because she can't feel her feet. She can't stand long enough to even prepare microwave foods and her diet is atrocious despite family members bringing her food. In a nutshell, Mom cannot face the fact that she is incapable of caring for herself, and won't allow any improvements in her sitution because that would mean acknowledging how very ill she really is. She won't allow us to get her a motorized chair or install ramps over her raised entryway floor that block access to the bedrooms and bathrooms.
Ten days ago Mom shrieked that she had to go to the hospital because she couldn't eat, walk and was incontinent. No sooner do we see the triage nurse than she denies the problems. She was admitted because she needed a transfusion, and could have had her back surgery had she remained in the hospital long enough. But no. The next day she screamed and yelled and demanded to go home. Apparently Mom checked out AMA.
The next day we discover Mom's hemoglobin down to 7.8. She had already bled out the entire transfusion and then some. Back to her usual out-patient place for another transfusion which took me 3 more days to set up. In the meantime, Mom is bleeding to death. I managed to get her cardiologist to look at the x-ray while she was getting transfused. When he went down to talk to her, he wanted to admit her for further evaluation of the aneurysm. BOOM! Mom threw a fit of epic proportions. I got my brother and sister to meet me at the hospital and we asked for a psych consult - again. Again, the hospital refused. This time saying Mom had to be an inpatient for several hours before calling in a shrink. We called social services and were informed that we could not infringe on Mom's civil rights even though her irrational decisions are killing her in front of our eyes. She suggested we report her to Adult Protective Services.
I spent all afternoon last Saturday writing a 9-page report to APS. The State moved quickly - I'll give them that much, but when the shrink showed up at her house he said her dementia wasn't bad enough to remove her rights. That was my last attempt. I don't know what else to do. Mom won't allow an aide to help her. The one time I arranged for one Mom fired her after the first day. She needs skilled care and a nursing home is out of the question in her mind.
I am disabled myself, and because I don't work I am the default caregiver. I have to fight both my mother and her numerous doctors and the medical system in general to keep her alive. The stress is literally killing me now. I can't sleep, grind my teeth unconsciously to the point of migraines, and now add skyrocketing blood pressure and chest pain to the mix. I'd probably be dead by now if it weren't for my pain shrink. Last weekend I tried to take a break from it all and told my siblings that I was unplugging my phones. They thought it was such a good idea they did the same, leaving Mom completely alone and hysterical for two days. I got to deal with the fallout.
When you add up all the things that mom refuses to do, the only option left is death. (But she has civil rights which must not be infringed.) The real horror is that Mom really doesn't want to die. I see flashes of my "old" mother in there, and she's a terrified old woman facing death in a great deal of pain. Denial is the only thing holding her together at all at this point.
Has anyone else been in a situation like this and had their hands completely tied?