Your post really struck a chord with me. My mother also suffered from MS that was progressive and eventually became "end stage". She too suffered from loss of vision, mobility and control of her bodily functions. As her disease progressed she to lost the ability to control her impulses and social reasoning. It was a result of the MS scaring and brain atrophy - which is organic in nature. My mom simply did not have the ability to completly control her behavior. It was a very difficult thing for most people to understan. It was a very sad journey for my mother. She was a single parent who sucessfuly raised two children (we both went to college and obtained advanced degrees) all while suffering the devasting effects of MS. Circumstances (like almost burning the house down and allowing strangers to live in her home) forced me to obtain guardianship over her during my senior year in college. We kept her at home as long as we could but we were eventually forced to place her into a nursing home facility.
Over the past couple of years it became difficult for my mother to swallow. We refused to make her drink thickened fluids as she hated them and food/drink seemed to give her pleasure. We did this knowing that she could aspirate her food/beverages/saliva and develop aspiration pnemonia (sp). In April of this year that is what happend. She was hospitalized with respitory failure. Instead of taking heroic measures, we allowed nature to take its course. She passed on April 12, 2010. She is now free.
I write this to share that I understand what you are feeling. I also feel some frustration when I see ads and promotions that seem to depict MS as something that can be controlled. For most - that might be true. But MS has the ability to cut short a person's life and devastate a family beyond words. It is a wicked disease. All we can do is obtain the best care we can and to just be there. I had a hard time accepting what was happening to my mother. Finally - with the help of counseling- I learned to not see my mom as she was but to accept and appriciate her in the moment - no matter how bad things seemed. I was just able to "be" with my mom. Seemed to help...
During my mother's struggle, I was diagnosed with stage 4 colon cancer AND MS. I try not to compare my disease with my mom's - but it is hard. I just try to live everyday. I just recently went on "sabbatical" from my employment due to my MS. (And everyone thought the cancer would get me first
Just know that my thoughts and prayers are with you. I do understand what you are going through and how you feel. Just be there for your mom the best you can and don't forget to take care of yourself. MS sucks and we need to find a cure!