Hello
 

My name is Shirlene, I am here because of my sister Patty. She has RSD. She was diagnosed about 6 years ago and we think she had this disease for 2 years before that. She was a real estate agent and fell through a stair and broke her ankle...which never healed and the disease has spread to her other ankle, both feet, both legs, both arms and her lower spine. She has most recently been put on medical marijuana to help her get some sort of appetite back, she has become basically malnourished. So far we have seen very little improvement.

So loooooooooooooooong story short, I as well as her husband are doing everything in our control to find ways to help her. I have moved "home" to CT from NY to help take care of her, however it has become painfully clear that she needs constant care. The days are very long while we work and her kids are at school, she will and does not even move while no one is there. My problem with this is I have to work in order to pay my bills while I live here. Obviously her husband does and he has been such an angel taking over all of her duties, including taking care of the kids. So, I am trying to find a way to take care of her. Does anyone know of grants or any kind of funding that would help pay me just a minimum of money to help save her. She has Medicare but they do not allow family members to get paid for this type of service. Which, I find insane but I cannot figure out how to balance all of this. I appreciate any and all help possible. Thank You

Hi Shirlene,

Welcome to the NeuroTalk Support Groups.

I can't really help you with information regarding funding and grants etc. as I live in another country, but I am sure other members here will be able to make suggestions. There may be be info in the "Sticky" posts at the top of the RSD forum and I'll post that link below.

RSD & CRPS Forum

I'm sorry your sister is dealing with this terribly painful condition. She's so very fortunate to have you as her sister.

take care.

Hi Shirlene,

What a wonderful gift of a sister. You are correct in that Medicare does not pay for personal home care. However You may be able to get paid for providing assistance via a program typically known as Community Care for the Aged and Disabled. These programs are run by each state and will usually fall under Dept. Of Human Services or whatever that department is called in your state. This was developed to keep people at home independently instead of needing nursing home care. Determination of hours needed for care is made by a case worker who comes to the house and does an assessment of functional limitations. In Texas, not the most liberal state keep in mind, a family member may provide service instead of an outside worker. You should be able to refer your sister to this program yourself but if she has home health coming a social worker with that agency could make the referral. I have known many families who benefited from this service. Care can range from 8-39 hours depending on the assesment. I hope this helps. I am sending Healing Love to your family.

Littlepaw:grouphug:

Great to meet you!!
 

Welcome Shirleneb. :Wave-Hello: