- Jan 24, 2014
My husband has had this horrible disease for 6 years. He is 57 and I am 50. We have been married 11 years. He is a 25 year Retired Veteran of the Air Force. It came on fast, it took his voice and his walking first...then gradually he has declined to the point of being in a wheelchair 12-14 hours a day.. sitting watching tv... he cant eat, he has a peg tube for about 4 years now.. on 6 cans of Jevity a day. His drooling has gotten so bad, he gets Botox for it. This is going to be all over the place because I cant string 2 sentences together anymore. He has an aide that comes every day for 3 hours... gets him up and bathed and dressed.. gets his day started. I drag myself out of bed, I don't care if I comb my hair or not. I worked all my adult life in Customer Service... and I knew early on I wasn't cut out to be a caretaker. Yet here I am....every single day...changing depends, wiping drool, emptying catheter bags, taking care of the house, bills, animals..etc...on and on... and I just don't know how much longer I can take this.. I am exhausted. I haven't been feeling well.. I went to the Dr. now I am anemic, low Vit. D, they found a lump on my breast...have to have a biopsy.. my depression is really taking over my life...I have been doing this 24/7/365/6...I get no relief.. no time away... between the 2 of us.. 4 useless adult children too busy in their own lives.. his 2 don't call, come around, nothing.. and my 2 only when they "have" to. I feel ashamed that I get angry most days... at him..at myself, at God, at this disease, at the life we were SUPPOSED to have....I keep thinking.. I don't have time to get sick... I don't have time for me.. what if something happened to ME? There is too much to worry about for me to get sick. I think the thing that gets me the most is the lack of communication... he cant talk, he don't WANT to use a communication device.. I get to play charades 24/7...Do you have any idea how HARD it is to read someones mind?!?! And I do it all day.. EVERY DAY...it is EXHAUSTING! This is not fun...I have NO enjoyment.. nothing. I quit my part time job and this is my life and I HATE EVERY MINUTE OF IT! Damn ME! I cant imagine how frustrating it is for him...It is living HELL for me! I love my husband.. PLEASE do not think I don't.. that's not it.. not at all.....another thing that scares me is that he wants to be kept alive on machines for as long as they will do it... and that makes me VERY ANGRY! "HOW DARE HE WANT ME TO CONTINUE THIS HELL?" I hate having his parents down here.. (they are in their 80's).. they get on my nerves.. all his mom talks about is "My poor son... blah blah... you will never know my heartache>>>I want a cure".... it is DEPRESSING! So I convinced my husband that he should donate his body to The U of Cincinnati or Ohio State so that someone may learn from this...his mother had a full blown fit..."HOW DARE YOU SUGGEST SUCH A THING FOR MY SON!?" My family doesn't do the funeral thing... we all donate our bodies.. I have lost my mom, my aunt, my dad, my uncle, my sister.. all donated theirs... I don't like funerals, funeral homes, nothing about it... he wants a full blown Military funeral with white horse pulled hearse and all this and he is asking me to do something I didn't do for my parents or family. I do NOT want to sit in a room and have people judge ME...about "Oh.. she isn't crying enough... oh.. she smiled.. did you see that?" I DONT WANT ANYTHING TO DO WITH IT! So I sent papers to OSU...and I got them back... and I sent copies to his parents...his brothers and sisters and his children... so that when the time comes.. there wont be any mistake. I am dealing with that hell right now..."HOW DARE YOU?" Well.. you all want a cure, don't you? How do you think that happens? They must think they can give a lab rat this horrible disease... I wouldn't wish this on a rat! I am a horrible person....I must go now.. time to change a depends.....if they do find anything on my breast.. or if I get some sort of cancer or something.. I will not do any treatment...I just want God to take me out of this miserable life....oh.. and I do have a Dr. and I am on meds....I just cant do it anymore!