|
I have been struggling with the beginning stages of amyloidosis-related dementia. I warned my friends years ago this would occur. They claimed to understand and promised to be there for me. They have all turned their backs on me because I am not as much fun or useful as I used to be.
There is no specific treatment for amyloidosis-related dementia. At my last doc visit, I brought my husband in with me. I wanted my doc to explain to him how amyloidosis effects the central nervous system and brain. Doc looked like a deer caught in the headlights, and I realized he had no idea what I was talking about. All he could offer was a referral for a neuropsychological evaluation.
This made me angry because I am already acutely aware of my deficits and behavior. I'm devastated, humiliated, and terrified - knowing society has no compassion or empathy for people like me. I canceled the evaluation for several reasons: 1) we are poor and medicaid won't pay for this $4000 evaluation; 2) the evaluation would be worthless because those doing the testing have no knowledge of amyloidosis and it's progression - their results and recommendations would be worthless.
This isn't just about me. It's about my husband and son too. They are really struggling too, and I need to be strong for them. My illness interferes - the harder I try, the worse I get, the more trouble I cause.
My husband......He's treated like dirt at work and on the streets because of his Mexican heritage - or they think he's some sort of "Middle Eastern terrorist." BTW, he's 100% American - born and raised in Arizona, and so were his parents. My husband's blood pressure is very high, and I'm afraid he's going to explode. Home is no longer his sanctuary because I've become such a handful.
My son......He warned me when he first came home "Careful Mom, the military made me very hard." I see now it has also made him explosive and mean - even his "gangster" friends are afraid to cross him. He's been having horrible nightmares and sometimes lashes out at me for no apparent reason. This makes him even more upset because I know how much he loves me. I'm afraid he's becoming suicidal - he'd rather take his own life than take mine.
I live for my husband and son. Without them, I have no reason to live. It feels selfish of me to fight for my own survival because it's apparent I'm only making it worse for them.
If you were in my shoes, what would YOU do?
|