I understand completely.  My wife was 30 and I had just made 39.  Initially because of our very modest income we qualified for nothing,  They wanted to put us on a 'spin down' where any money for medical exceeded $3400 a month they would cover any other medival expenses.  Problem 1: We brought in only $3500 per month and that was only becauseof my company's short term disablity pay.  And if I was in a position to afford $3400 just on medical (not including mortgage, food, utilities, kids, etc), I don't think I would have needed the government's help.  My wife told me after 8 hours at work, changing caths, bathing, wound dressing, ranging legs, cooking,bowel programs that she didn't feel like a wife.  All of my family stayed in another state.  Bathing me and bowel programs took away the romance at night she said. She did well for almost 3 years, then we qualified for help 3.5 hours per day but it was too late. She began spending more hours away from home then confessed she did not love me anymore, started assisting me less,  (I sometimes depended on friends and neighbors to feed me), slept in the family room  for 2 years then filed for divorce.  I had to give her half of my 401k and pay cash for equity in our home.  I received full custody of 16 year child but b/4 papers were final she quit her job making $36,000/year to keep from paying child support.  Judge ordered her to pay $100 a month that I hardly ever saw.  But she says she feels free and alive again, found a new boy friend 22years older than she who told her she doesn't have to work, he will take care of her.  Sometimes I don't know whether to feel guilty or bitter. It was because of her lack of assistance helping me in bed caused 3 major pressure sores in Nov 2000, 2 I am still dealing with.
----- Original Message -----
Sent: Thursday, March 31, 2005 8:02 AM
Subject: Re: [QUAD-L] re: Slippery slopes to making it personal

 I agree with you I enjoy life too.....But it is so unfair to caregivers like my wife, she loves me but we do not qualify for any outside caregivers or nurse help.....she has to work full time plus change my catheters-dress and help shower me-- do bowel routines-- leg range of motion and so on......she always say's she wishes she would die and be free of the endless work and life has no joy... I feel so guilty but I have no option but perhaps a nursing home, So while we live in this condition is it fair to our loved ones ???  Also a few other list members have told me some of their loved ones feel mizerable with this lifestyle too.
                                                                                                                 Dan

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