Originally Posted by lurkingforacure

Sorry you are going through this, both the PD and the indifference. Perhaps you could have a family conference and explain some things to your family, what help you could use and would appreciate, etc. A warning, though, most people cannot handle (or won't) chronic illness and you may be even sadder at their response.

PD, MS, Alz., whatever, you can go online and read countless stories of patients whose families live in the same town/state and get little to no help. Of children who cannot be bothered to even call and check on an ill or heck, forget the illness, just elderly, parent. I hated going to see my mom (every day, sometimes twice a day) in the nursing/rehab facility because most of the other patients got no visitors and they just descended on me when I got there and I felt so sad for them. They would hover around my mom and me as we talked and visited. I know every single person in that facility had a life story, and I often wondered what those stories were....was he a professor, a carpenter, a pastor? did he have a wife, children, grandkids? what were his favorite memories? and on and on. From what I have seen, we treat our ill and elderly terribly in this country and I don't understand why, when every single one of us is going to get old and/or sick before we pass on.

So if you talk to your family, be realistic in your hopes and requests for understanding and help. It is surprising how ignorant people are about PD: perhaps they do not know what help you might need? If so, perhaps you could help them understand that.

Good luck and I hope things improve for you. We may forget what someone did or said, but we always remember how they made us feel. I hope your memories going forward are all good