Did you ask the CRC in San Diego for a respite care grant? Some in our local area use the grants to attend support group meetings.

Hi Robin,
I have info from Parkinson's Society that, if approved, they will provide respite care for $10.00 hour. The other lead I have is the Alz Assoc, who will provide a reimbursement of $1500, providing you have no other program helping you. My holdback on that is that I have pages and pages of listings for home care providers but haven't gotten the energy required to start calling and interviewing them. So it seems I have no help because I'm not seeking help. I guess I can't expect a fully qualified and caring caregiver to knock on my door to see if I need help, so I need to make a move. I was never a procrastinator in my 'prior life' but I really seem apathetic about too much these days. But, I figure somedays if we're all clean and fed by the end of the day I've done my job, lol. Thanks for helping, Sher

That's interesting, Sher. Is the respite care a regular thing or just a one-time thing?

I suggest you ask the Alz Assoc for suggestions as to home care agencies. You can also join Link2Care, an email list for California caregivers. Many are based in SD and I see them talking about care facilities, hospice agencies, MDs, etc. all the time.

Sher - you sound exhausted. Do you have a good friend or relative who could help you make calls and set up interviews? Lynn

Hi,
Pat: I'm assuming you're asking about the PD assoc. respite? It is ongoing, up to 8 hours per week and is provided through PD association of San Diego. Their letterhead says they are affiliated with the national American Parkinson's Disease Association, Staten Island, NY.
Lynn, I am no more exhausted than everyone on this site, it's just that once the daily 'chores' are done I don't feel I have the energy to make those additional efforts. Tomorrow always sounds easier. I do have some wonderful friends who are always asking how they can help, so I might just enlist one or two to help me find the right agency. Thanks for the suggestion. Sher

Thank you, Sher. I'm going to inquire about it. I guess it pays to have the PD dx still 'on the books', at least with his PCP. His neurologist has him down as LBD. Anyway, any help at all would be great---care is so expensive!

Yes, Pat, it really is. I haven't contacted them yet, so I am only guessing that they will accept the diagnosis we have. I'll let you know when I find out anything. Sher

Hi Sher ~ We are in the San Bernardino Mts. I have attended a Tues. afternoon LBD/FTD support group in Irvine. Like you, the one in the a.m. is too difficult to get to due to traffic... I have not heard anything lately about the Tues. afternoon meeting, but I can find out if they are still getting together. It was held at the Alzheimer's office in Irvine.

This new website format has me a little baffled...send me a private message if you like and hopefully I will be notified of it... Take Care, Roxanne

Sher -
I was cleaning off my desk today and found the name of the very helpful family consultant at the Alzheimer's Association of San Diego: Alana, main phone 858/492-4400. Their website is sanalz.org.
Robin

Do I have it wrong? I thought the Exelon Patch was to help with Dementia. Ifind these posts very interesting. My wife had shown agitation as well since being on the Exelon patch. I have no idea if it was the Exelon Patch or the Azilect or what. I am so confused with these medications. Doctors prescribe medications that cause other problems.

No support groups here in Northern Virginia to help out. This forum is all I have!

There is an online caring spouse support group that you could join!


http://groups.yahoo.com/group/LBD_caringspouses/

The side effects and paradoxical effects of medications on LBD patients seem varied and might have to do with the parts of the brain affected by the Lewy bodies. When my husband was put on Exelon we were told that it is primarily for dementia but that is often caused a reduction in anger & agitation, a problem that was becoming very difficult for us. It worked quite well even at the lower dose. In fact, we saw no improvement with the higher dose but were told he had to go to the higher dose.