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 Exelon: has anyone noticed........? 
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Exelon: has anyone noticed........?
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.


Tue Aug 24, 2010 1:21 pm
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Exelon: has anyone noticed........?
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

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Tue Aug 24, 2010 3:19 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Exelon: has anyone noticed........?
That's interesting, Sher. Is the respite care a regular thing or just a one-time thing?

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Aug 24, 2010 3:30 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Exelon: has anyone noticed........?
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.


Tue Aug 24, 2010 4:03 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Exelon: has anyone noticed........?
Sher - you sound exhausted. Do you have a good friend or relative who could help you make calls and set up interviews? Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Aug 24, 2010 7:10 pm
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Exelon: has anyone noticed........?
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

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Tue Aug 24, 2010 11:17 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Exelon: has anyone noticed........?
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!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Aug 24, 2010 11:21 pm
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Exelon: has anyone noticed........?
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

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Tue Aug 24, 2010 11:26 pm
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Joined: Thu Jan 14, 2010 2:40 pm
Posts: 88
Location: California
Post Re: Exelon: has anyone noticed........?
sher wrote:
Hi Roxanne,
I am in San Diego County (Escondido). Are you near? Do you know of any LBD caregiver meetings in the area? I know there is one in Irvine, I believe the first Wed. of every month but it's in the morning and I just can't get away early enough to fight the traffic from San Diego to OC. Thanks, 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

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My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease...


Fri Aug 27, 2010 7:10 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Exelon: has anyone noticed........?
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


Mon Aug 30, 2010 1:23 am
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 118
Location: Dumfries Va
Post Re: Exelon: has anyone noticed........?
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!


Wed Sep 01, 2010 6:20 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Exelon: has anyone noticed........?
There is an online caring spouse support group that you could join!


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

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Irene Selak


Wed Sep 01, 2010 8:46 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Exelon: has anyone noticed........?
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.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Sep 01, 2010 9:32 pm
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