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 LBD Caregiver groups in Manatee Cty. FL? 
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Joined: Mon Mar 21, 2011 11:28 pm
Posts: 26
Post LBD Caregiver groups in Manatee Cty. FL?
I live on a barrier island in Manatee Cty. We had a small general purpose caregiver's group out here for awhile which has been disbanded. Possibly there weren't enough of us to make it worthwhile for the coordinator. I get most really specific information from this website but I think it is a good idea to have a toehold in the community too. People tell you all the local things you need to know, like which doctor never listens to a caregiver. Or who is the best Eldercare lawyer. I' checked out a list of caregiver's groups here and they are all Alzheimer's. I don't know that they would be all that helpful. Am I wrong? It seems that the diseases are so different in symptoms and progress. I'll be going to one of these meetings in a couple of weeks just to check it out anyway. But this is a shoutout to any other LBD CGs in Manatee Cty.


Mon Apr 25, 2011 4:15 pm
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Location: Vermont
Post Re: LBD Caregiver groups in Manatee Cty. FL?
Here are a couple of ideas -
1. Can you start your own group? Perhaps the others who were in your former group would be willing to take turns helping out. I know a small "dementia group" that meets every 2 weeks at each others' houses. They all take turns hosting it and taking care of all the other things that need to be done.
2. The local group I attended was an "AD" group, but there are people who attend whose LOs have various forms of illness with dementia as a major symptom. Afterall, none of these diseases can be confirmed 100% until after death anyway, so who knows what people's LOs actually have. Many issues for CGs cross the barriers of which disease(s) our LOs have, so I'd suggest you attend one or two meetings and see how it works for you.
Good luck, 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.


Last edited by LTCVT on Mon Apr 25, 2011 8:24 pm, edited 1 time in total.



Mon Apr 25, 2011 4:24 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: LBD Caregiver groups in Manatee Cty. FL?
There is probably as good a chance someone with a clinical diagnosis of LBD actually has AD, so joining the AD group sounds like a good idea.

After all, what makes a good MD or a good attorney for AD is probably the same as for LBD.

I've been to many support groups for different neurodegenerative disorders and always find that I can learn something.


Mon Apr 25, 2011 8:03 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: LBD Caregiver groups in Manatee Cty. FL?
Here is the closest one for you, just the other side of the Skyway Bridge

Pinellas County/St. Petersburg Dementia Caregiver Support Group
When: First and third Wednesday of every month, 6 p.m. – 8:15 p.m.

Where: Bon Secours Place Assisted Living, 10401 Roosevelt Blvd., St. Petersburg, FL 33716

Who: Dementia caregivers, including Lewy body dementia caregivers.

Note: The meetings are ongoing - drop in. Free respite care for loved ones while the caregiver is attending the support group meeting. However, please call 727.563.9733 to reserve respite care.

Contact: Karen (Karle) Truman, Ph.D., 727.391.9999 on Mondays – Thursdays, 9 a.m. – 4 p.m.

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Irene Selak


Mon Apr 25, 2011 10:28 pm
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Location: SF Bay Area (Northern CA)
Post Re: LBD Caregiver groups in Manatee Cty. FL?
Karle is a wonderful person, and a great resource. If you haven't already brainstormed with her, you should!


Tue Apr 26, 2011 1:31 am
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Joined: Mon Mar 21, 2011 11:28 pm
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Post Re: LBD Caregiver groups in Manatee Cty. FL?
Thanks to you all for the suggestions. And thanks Irene for taking the time to type out the info for the St. Pete meeting. Unfortunately, for this old biddy (74), an hour's drive over, a couple of hours at the meeting and an hours drive back (in the dark) seems a bit daunting. Though I can see that for younger, working CGs in the Tampa-St. Pete area the timing of the meeting would be perfect. Just swing by after work. Anyway, I don't like to leave my husband alone for more than a couple of hours. He has a tendency to fall and doesn't like to be alone that long. I'll go to the AD meeting here and post whether they welcome other dementias. (Sounds strange, doesn't it.)


Wed Apr 27, 2011 3:55 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: LBD Caregiver groups in Manatee Cty. FL?
Perhaps you could still call and find out if a tepehone conference for the meeting is possible, you won't know unless you ask !

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Irene Selak


Wed Apr 27, 2011 4:40 pm
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Post Re: LBD Caregiver groups in Manatee Cty. FL?
Thanks for steering me to an Alzheimer's meeting. The small group that meets here does have caregivers for a variety of cognitive problems so I will continue to go to their monthly meetings. Helps with the feelings of isolation.


Thu Jun 02, 2011 10:16 am
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Joined: Thu Jan 17, 2013 9:31 pm
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Post Re: LBD Caregiver groups in Manatee Cty. FL?
I also live in Manatee County, perhaps we should compare notes. I wouldn't mind having someone to talk to who would understand the complexities of the disease.

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Liz (59) married to Gary (64) 39 years. Gary was diagnosed with LBD with Parkinsonian features after many years of frustration in December 2011. Gary passed away on October 23, 2013.


Fri Jan 18, 2013 2:10 pm
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Post Re: LBD Caregiver groups in Manatee Cty. FL?
Elizabeth,
I used to live in Manatee and I am glad there are others there for you and I hope you can get together and just for the record the Hospice there when the need comes is wonderful, I used the one in Parrish ! I hope you get a chance to look into the live support groups I think there a few in St Pete !

Good Luck !

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Irene Selak


Mon Jan 21, 2013 4:43 pm
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Post Re: LBD Caregiver groups in Manatee Cty. FL?
The one in St. Pete is just too far. I have to pay caregivers to be with my husband while I am at work. If the meetings were closer I wouldn't have to pay for the extra travel time too.

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Liz (59) married to Gary (64) 39 years. Gary was diagnosed with LBD with Parkinsonian features after many years of frustration in December 2011. Gary passed away on October 23, 2013.


Tue Jan 22, 2013 2:50 pm
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Joined: Mon Mar 21, 2011 11:28 pm
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Post Re: LBD Caregiver groups in Manatee Cty. FL?
Lizg:
I just opened the forum this morning and saw your post though now I remember reading about you in the Introductions section. I am in Holmes Beach. The caregiver's group I go to meets every month on the second Friday at 2pm in the Island Library meeting room. So in Feb. it will be on the 8th. As I wrote we are a diverse group with some having LOs with Alzheimer's, some undetermined and me with a husband with LBD. You mentioned that you work so this may not be convenient. Where are you located? I'm up for discussion.

I hear my husband banging around in the bathroom so he is up from his nap. I will get back to you later this afternoon.


Tue Jan 22, 2013 3:57 pm
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Post Re: LBD Caregiver groups in Manatee Cty. FL?
Beachdaisy:

I live in Bradenton in between SR 64 and SR 70. Yes I do work fulltime in addition to caring for my husband. He needs a great deal of care as he can no longer walk, he can still communicate but he doesn't always make a whole lot of sense. I would love to attend a meeting but I'm working at that time. This site does help with a lot of questions I have.

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Liz (59) married to Gary (64) 39 years. Gary was diagnosed with LBD with Parkinsonian features after many years of frustration in December 2011. Gary passed away on October 23, 2013.


Wed Jan 23, 2013 10:19 am
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Joined: Mon Mar 21, 2011 11:28 pm
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Post Re: LBD Caregiver groups in Manatee Cty. FL?
lizg:
This site is wonderful. I learned everything from it. Certainly not from doctors or experts. But sometimes it is helpful to have a touchpoint for the practical local questions. Which doctor seems to know the most about LBD? Who is the best eldercare attorney? How do assisted-livings compare? And every now and then its helpful to vent to a live human.
I realize that you have time and financial limits as you are paying for someone to stay with your husband. So a meeting may not work for you.

Anyway, I looked up the caregiver meetings on the Alzheimer's website (Sarasota-Manatee). As I suspected they are all during the day. But I remember a conversation a few months ago about starting an evening group at a local church. The person who would know about this is Sue Fox, the caregiver coordinator for the Alzheimer's assoc. here. Her phone number is (941) 365-8883. I'd try to speak to her directly. She can probably be helpful with other questions too. If you want you can say that Ann from the Island Library meeting suggested it.

It seems that your husband is a little further along physically than mine who can still walk (badly) with a walker. I'm glad this forum gives us a chance to talk. So I'm here for conversation or whatever, as are all of us.
Ann


Wed Jan 23, 2013 2:23 pm
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Joined: Thu Jan 17, 2013 9:31 pm
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Post Re: LBD Caregiver groups in Manatee Cty. FL?
Thank you for the info, I will do that. Well my husband is on an up and down roll this past week. He actually walked a few feet yesterday, but then he said "why isn't anyone with that baby"? There was no baby.

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Liz (59) married to Gary (64) 39 years. Gary was diagnosed with LBD with Parkinsonian features after many years of frustration in December 2011. Gary passed away on October 23, 2013.


Thu Jan 24, 2013 11:28 am
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