Joined: Wed Feb 15, 2012 11:39 am
Location: Victorville, CA
Re: Hi from Eaton Rapids, MI
Welcome to the forum. It's been a godsend to me. I don't know how you found it, but glad you did. I found it by reading Pat's book. My hubby and I are going to UCLA Monday where I hope we will be set on the right path. He hasn't been diagnosed with LBD yet, but with all I've read and all he's doing, I'm sure that's the conclusion they'll come to. He's not one to like anything "doctor." When I completed the paperwork for our first visit to UCLA, in the place for "medical history," I wrote, "not much." I went on to list the very few things I knew about, tonsillitis/tonsillectomy as a kid, a bout of pneumonia in 1954, stuff like that. For one who avoids the doctor at all costs, this whole ordeal has been very traumatic for him. I understand about the refusal to do the PT. John refused for over two years to even see anyone about his "lapses." I had to make it an ultimatum. Now that it's been over a year since his first experience with a neurologist, he's being much more cooperative. When we first went, he thought he was going to a "shrink"...his word. His experience around medical professionals was extremely limited, to say the least. The first doctor was worthless (didn't realize it at first). The second doctor was better (he's the one that referred us to UCLA), but still didn't know much about the different types of dementia. He did know enough to say I'd better hope it's not LBD. With all I've read and witnessed in my own husband, he was right. To need so much care and understand and remember that you need so much care, is very overwhelming even for the most macho man/woman. To deal with the fluctuating cognition and all the rest, is extremely hard on the caregiver. The fact that your LO is willing to even entertain the possibility of SNF is something. I agree with the others, that there are many other resources out there that will help and your income won't have any bearing on them. You just have to explore, starting with your state's department of aging. Even though I've just started my medical journey with John, I have been dealing with the nuances of this disease for about four years now. I know I've not seen "nuttin" yet. This forum, and the good people who take the time out of their own busy days to post, will help me get through it as I hope it will help you.
Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.