| My name is Kim Johnson and my husband is David we have been married for 5years. I'm a 32 year old female, my husband is 45 years old. We're not sure of the diagnosis, but left with Neurochoreacanthrocytosis or possible Mitochondrial disease, maybe even just a David Johnson disease. I married David and took him out of a personal care home to give one on one care. We met at a kingdom hall. I did all care myself until we moved to Virginia. The Vets hospital offered an adult day care program, and now that I've tapped into this service my life has slowed down so I can breathe. Before that I never got a day off to just rest for myself and do the things I enjoy.
When my mother suffered a stoke I had to hire a private nurse to stay with Dave so I could go to NJ form PA to help her with finances and also personal care. My dad has to work fulltime to pay the bills and they had no insurance so I had to apply to Medicaid for her and get drug companies to give her pills for free. I paid her doctors visits' bill until Medicaid kicked in I also paid some doctors bills from the hospital. Then I go back home and care for my husband who has a rare incurable disease. Its very tiring. A change I would like to see is that caregivers get paid to stay home a give care to a loved one, roughly about $200 a week, our time is valuable and deserves to be paid sometimes. We know more than the nurses or doctors do, and we give the care that the HMO's refuse to pay for. We're the front line to a persons life and give then a reason to hang on just a little bit longer.
Wish List:
1. Having a respite from caregiving once every 3 months.
2. Government should pay caregivers to stay home and care for loved one. (the only payment I get is being satisfied my husband is alive)
3.A trip to a weekend spa made just for me so my needs are taken care of and pamper myself for once without having to worry about Dave | 
