i'm not sure this is in the right section..??? or even an appropriate post... i hope so!!

i have been reading this board for years.. i have learned so much.. it has helped with doc appointments with, handling problems and with making sure about the meds.. and so much more..

as i read more and more, i hear so much loneliness, sadness, fear, frustration , anger and questions !!

how to cope..?? especially with out family, or help???

how do you handle the nights alone, night after night??? especially in the early to mid stages...??

how do you stay connected with your friends... or do you??

how do you handle the anger and frustration, this is not what you had planned together for retirement??

how do you handle the 24/7?? just the two of you??

how do you handle the quiet if your partner in not a talker..

how do you handle the new responsibilities..your partners, yours and your new care giving role too??...

have you given up all fun in your life .. or how do you find a way to have fun with friends and family.. alone or together???

do you need quiet time?? alone time?? how do you get it??

how do you handle missing your best friend, who has now become more of a child/ than a partner??

how do you learn to ask for help...???

how do you take care of you?? what brings you joy?

and so many more questions?? please, add to the list if you have one, you feel that was missed...


i have seen some posts touch on some of these caregiver feelings, but hoped if it was all in one place.. we could share ideas and solutions that work or don't work. and find it easier....

get some ideas and help each other.. so many changes in our lives...... and sometimes so tired you just cant think straight...

hope this was ok to do this.. i read and read.. so many books are so good, but its mostly about the patient,, which we need, invaluable info!! but what about us.. how do we cope??

personally for me on 2 acres, in the country.. with very few neighbors... these are many of the questions, that i need help with... and i hope by bringing them up and starting this, we can all get some of our questions answered... and find some peace and maybe carve out a bit of happiness, as we go down this lewy body path...

cindi

Cindi,
Are you involved in any of the support groups online, I am sure they like here can be helpful in your questions.

This is a fine are to add your post to it !

irene .
. no, i'm not on any others sites, online. about lewy body or caregiving..... tried caregivng spouses(?), but for some reason didnt feel the connection, like here .. at least at that time.. maybe, i should give another try...??

do you have links to others???

glad it was ok to start this here tho.. hopefully it will help answer some of my questions, but others too and help us to realize, we are not alone... !!!

thanks,
cindi

Cindi,
Try this link , this is a smaller group and might be a better fir for you!

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

PS Cindi,
This is a different group !

You might want to try caringspouses site again. I felt the same as you at first on that site but after giving it a few weeks with reading & posting have found comfort & answers there too.

Susieg

thanks irene..

that is the one i used to belong too... i need to renew my membership, they said... and ill give it a try again...
susieg is that the one you belong to, or is it another.???.. do you have the link??? glad you are feeling more comfortable there...

cindi

Cindi - is there a CG support group that meets somewhere fairly close to you that you could join? When my dad was still alive I joined a couple of those and it was so helpful to talk face to face with other CGs. Some of the folks there who had spouses with LBD broke off into subgroups and they meet regularly. The CGs have a separate meeting and those with LBD meet together, then they all get together for a bit at each weekly meeting. Four years later, some of these folks I met at the support group have become very close friends of mine. I hope you can find either a real or a virtual community of people (besides us LBD forum folks) to help you. Lynn

Cindi,
Not sure if any of these would be helpful to you or not but this is what I know of in CA


Bay Area - Lewy Body Dementia Caregiver Support Group
When: Approximately every six weeks on a Sunday, 5 p.m. – 7 p.m. (call for date information)

Who: Caregivers of those with Lewy body dementia.

Location: Mimi's Cafe

Address: Where: 2208 Bridgepointe Parkway San Mateo, CA 94404

Contact:

Robin Riddle
650.814.0848
rriddle@stanfordalumni.org
LBDA Affiliate: Yes

Gold River Lewy Body Support Group
When: Second Thursday of every month, 10 a.m. – 11:30 a.m.

Who: Caregivers and loved ones of those diagnosed with Lewy body dementia.

Location: Eskaton Lodge Gold River, Assisted Living and Memory Care

Address: 11390 Coloma Road Gold River, CA 95670

Contact:

Denise Davis
916.930.9080
denise.davis@alznorcal.org
LBDA Affiliate: No

High Desert Lewy Body Dementia Support Group
When: Contact Stephanie Brynjolfson for details.

Who: For caregivers and family members of those diagnosed with Lewy body dementia.

Location: Contact Stephanie Brynjolfson for details.

Address: Contact Stephanie Brynjolfson for details. Contact Stephanie Brynjolfson for details., CA 99999

Contact:

Stephanie Brynjolfson
760.963.1478
stephanieinga@hotmail.com
LBDA Affiliate: Yes

Irvine/Alzheimer’s Association Caregiver Support Group
When: Second Tuesday of every month, 1:00 p.m. – 2:30 p.m.

Who: Lewy body dementia and frontotemporal dementia caregivers.

Location: Alzheimer’s Association

Address: 17771 Cowan Street., Suite 290 Irvine, CA 92614

Contact:

Donna Velarde
949.757.3759
donna.velarde@alz.org
LBDA Affiliate: No

Irvine/UCI Caregiver Support Group
When: First Wednesday of every month, 9:30 a.m. – 11:30 a.m. (RSVP recommended for parking permits)

Who: Lewy body dementia and fronto-temporal dementia caregivers.

Location: University of California-Irvine campus, Gillespie Neuroscience Research Facility, first floor conference room

Address: University of California-Irvine campus, Gillespie Neuroscience Research Facility, first floor conference room Irvine, CA 99999

Contact:

Susan Randhawa, MSW
949.824.2983
susanr@uci.edu
LBDA Affiliate: No

North Bay Lewy Body Dementia Support Group
When: Second Tuesday of every month 4:30 p.m. – 6:00 p.m.

Who: Caregivers and family members who have a loved one with Lewy body dementia.

Location: The Atrium Court building

Address: 1260 North Dutton Avenue, 1st floor conference room - #140 Santa Rosa, CA 95401

Contact:

Laurie White
707.525.9633
laurie@dementiaconsulting.com
LBDA Affiliate: No

Northern California/East Bay LBD and other Dementias Support Group
When: Second Tuesday of every month from 7:15 p.m. to 9:00 p.m. in the Community Meeting Room.

Who: Family members who have a loved one with Lewy body dementia, or any other dementia.

Location: Robert Livermore Community Center

Address: 4444 East Avenue Livermore, CA 94550

Contact:

Karen Jenkins
925.325.0544
kjenkins@rsac.com
LBDA Affiliate: No

Palm Desert Area Alzheimer’s Family Support Group
When: Every Thursday, 9:00 a.m. – 11:00 a.m.

Who: Family members who have a loved one with Alzheimer’s disease, Lewy body dementia, or any other dementia.

Location: Eisenhower Medical Center Five Star Club

Address: Beacon Hill, Suite A Palm Desert, CA 92211

Contact:

Denise or Nancy
760.836.0232
LBDA Affiliate: Yes

Sacramento Pocket Area Lewy Body Dementia Support Group
When: Every Wednesday 10:00am-11:00am

Who: Caregivers, and loved ones of those diagnosed with Alzheimer’s/Dementia

Location: Primrose Specialized Senior Living

Address: 7707 Rush River Drive Sacramento, CA 95831

Contact:

Lori Gales, LVN Wellness Director
916.392.3510
Wellness@primrosealz.com
LBDA Affiliate: No

San Diego County Lewy Body Dementia and Frontotemporal Dementia Caregiver Support Group
When: First Wednesday of every month, 2:00 p.m. – 3:30 p.m.

Who: For Lewy body dementia and fronto-temporal dementia caregivers.

Location: UCSD Shiley-Marcos Alzheimer's Disease Research Center Conference Room

Address: 8950 Villa La Jolla Drive, Suite C-129 La Jolla, CA 92037

Contact:

Lisa Snyder
858-822-4800
lsnyder@ucsd.edu.
LBDA Affiliate: Yes




Santa Ynez Valley Caregivers Support Group
When: First and third Tuesday of every month, 2:00 p.m. - 3:30 p.m.

Who: For caregivers and family members who have a loved one with Lewy body dementia, Alzheimer's disease, or any other dementia.

Location: Solvang Friendship House, Hamilton Room

Address: 880 Friendship Lane Solvang, CA 93463

Contact:

Ari Weaver
805.688.5868
smithweaver@yahoo.com
LBDA Affiliate: Yes

Does anyone know of any groups in the Easr Texas area, especially Tyler area? Thanks,

Susieg

In addition to this site I belong to LBD_caringspouses@yahoogroups.com

I also belong to veteranaid.org.

All of these sites have helped me beyond measure.

Susieg

sisieg thanks for the infor ill try them too, since we are va also..

i have a painting friend in tyler. ill ask if she has any suggestions on places...
thanks again..

cindi

thanks irene....

i missed your post on the groups.. i am about an hour north of san diego.. i was going to go to the one down there one time with sher, from the forum here..... but i have no one to stay with hubby.. and i feel very uncomfortable leaving him alone and being that far away...

i think there might be a ad meeting closer.. but still the same problem.. and since he is in denial that any thing is wrong, not sure taking him, is a good option..???

thanks for the info tho i do appreciate it..((()))
cindi

Susie,
This is for you, the closest Ican find.
North Dallas/Richardson Lewy Body Dementia Caregivers Support Group
When: First Wednesday of every month, 5:00 p.m. – 6:00 p.m.

Who: For caregivers and family members of those diagnosed with LBD.

Location: Friends Place Adult Day Services

Address: 1960 Nantucket Drive Richardson, TX 75080

Contact:

Pam Kovacs
972.437.2940
pamkovacs@friendsplaceads.com
LBDA Affiliate: Yes

Cindi.
If there is another group closer to you I am not aware of it and it might not be through the LBDA, it could be another form of Dementia which is OK too !

Not sure what you meant when you said you missed my posts, I was away and ended up in the Hurricane area and then was having Tech issues getting into the forums, kind of funny huh? Alls well now and I am back home thank goodness !