- Jan 25, 2013
I'm new to this site, so I'm hoping I'm doing this right. I've been at this sole-caregiver thing for quite a while. My husband was diagnosed in 2004 after he lost use of his hands and arms. I became the stay at home caregiver. We live in a very rural area and don't have access to the many forms of support that others can receive. In the last 2 years his lower body has become of no use to him. I'm home all the time. Since our children graduated from high school in May and left for college in August, I have been at this alone. Our ALS/MDA clinic is over 2 hours away in a major metropolitan area. They don't understand the challenges I have here in the country. I bathe, dress, feed, turn, lift, everything all on my own. I've lost contact with my old "friends" because I can't go do things with them anymore. Any time I'd try to call to talk or vent, I'm either interrupted with a need from my husband or they just don't understand. When we do go to the ALS clinic, they tell us how well he's doing (it's been 8 years after we told to expect 3-4), and to keep up the good work and come back in 9 months. They say I need to get out once in a while, but don't understand that there is NO ONE to come if I go. We don't qualify for any help until the doctor orders Hospice, and private help is out of our budget with 2 in college on top of everyday bills. As my husband's condition deteriorates, I am becoming more overwhelmed and angry. I can't continue to do this alone, but don't know where to look for help.