I can empathize…

It is so difficult when one has an illness that no one has even heard of, & it doesn’t go away. Cancer people can understand, same with MS, Parkinson’s, etc. I got hit hard & fast back in 2002, last day of teaching April 2nd, by April 27 was strictly in a powerchir with no use of my hands. Hubbie had already used up his 3 months of FMLA by Aug when the Mayo released me after 4 months, so my mother had to move in with us & take care of me for 9 months; thanks God for her unselfishness! She was able to move back home when my youngest child graduated from college & took a job working afternoons. He helped me during the day & my husband got home at 3:00. BTW he is in a wheelchair due to being born with spina bifida, yet he was my caregiver!

We have a lot of family around, although my two siblings don’t live here & hubbie is an only child. But this is where we were born & do have lots of cousins, aunts & friends. They were very generous in the beginning, but as time went on & I didn’t get better, it was mostly put all on my husand to care for me & do all of the errands, bills, cleaning, cooking, etc. He was still working full-time. If I were you, I would either have a family meeting with those who are related or ask for help from a local church. Sometimes strangers can be the best at helping. I wish you the best, I know how frustrating it can all be!