Thanks to everyone who responded. This has been a long hard road for the past five years. It took 7 neurologists in 3 different states 2.5 years before I could get anyone to listen to me. When his symptoms first started I knew it was neurological and he was dying because neurologic illnesses do not "stop" I then went on a three year "bucket list" crusade trying to maximize the quality of his life (all the time without a diagnosis). We went to Europe for three weeks, Hawaii and several other very special places. Every moment of everyday for 3.5 years was about him. Then he developed bizzare symptoms and were we told he had 6-12 months to live, that was 18 months ago. He had a dsyfunction of the part of the brain that regulates BP, pulse and other things: he developed "fits" that looked like he was going to die right there. This would happen 10-15 times a day. He would saturate the sheets of our bed sweating, there were many nights I lay awake thinking it was his last. THEN it all stopped. Now he is "mildly demented" and I just am exhausted for all I have been through and there is no end in sight. After 5 years of living hell I think my life should mean something too. When I call assisted living places they ask about his function then say "why do you want to place him" Because I am tired and depressed and exhausted, doesn't that count for anything? I have found a place that does respite care, I am thinking about 2 weeks every three months. I did ask his 5 brothers and sisters to give me a break every 3 months, they did it once in the summer of 2007 and have not offered again. Yet I feel quilty that I have failed him by not wanting to go on.
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