Stories from Caregivers: Susan from NEW JERSEY
NJ
Susan
FROM NEW JERSEY
My husband is John K. He got Parkinson's at the age of 52. He is 68 and a Vietnam Vet. His neurologist wanted him to go to the VA hospital to be seen but we were rejected, they said our income was too high. I worked as an x-ray technologist in an operating room making a decent living but I had to resign from my job in order to care for my husband. We have lost all our savings & I am 55. I have nothing to retire with & no job. John now has dementia along with the Parkinson's; he is nocturnal, which means he keeps me up all night. I have to shave, bathe, dress him & show him how to use the toilet. He also falls all the time & I have to pick him up. He can't even get into bed himself. We fall between the cracks for any help. We pay such high taxes in New Jersey but get nothing for it. I need help or I am going to wind up with a heart attack or stroke. Then who's going to take care of me? I am now on 2 blood pressure pills a day & have to take adavan to keep from having a nervous breakdown. I get no help, not physical, nor monetary. I am hurting myself taking care of him. We fall between the cracks although, the high taxes we pay are not meant to help us. We have worked hard all our lives and have always helped other people with donations, still do. I don't know what I'm going to do because I can't keep caring for him. I am dying a slow death for the care of another and no one cares. Everywhere I try to get help, it's like no you make a couple hundred over the limit. They don't account for expenses for him. I'm driving a 1995 Explorer with a bad tranny. I don't know where I will ever get the monies to buy/lease another car. I feel like we are drowning and don't have a life raft. It doesn't matter how hard you work or how much you save when you have a loved one sick like this you are screwed! Nobody tells you what to expect or what you need to do to get affairs in order or even how long this lasts. We are living in limbo, not knowing what our next day will bring or if I will just shut down due to sleep deprivation. I, we need help bad. Can't someone please help us? People are always telling call this agency. I have called so many just to get rejected over & over again. Anyone with suggestions, please let me know. Thank You Sue K
