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 New from England 
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Joined: Wed May 08, 2013 9:16 pm
Posts: 15
Post New from England
I have joined this forum because it seems there is much more known about LBD in the States than here. My mother (86) has been living with us for 9 years and was diagnosed with LBD in February, although I knew long before that that there was a problem even though no-one would listen to me.
There are many things I would like to ask, but I'm sure a lot of them will be answered in the forums - so I will go through the posts first (when I have time!!). My major problem is the 'emotional roller coaster' I seem to be on, since her condition fluctuates from day to day - and hour to hour sometimes!
The 'professionals' here don't appear to have an answer for this - and there probably isn't a solution - but I would appreciate any feedback if others have experienced this, and whether it will continue indefinitely.

Fri May 10, 2013 6:07 am

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New from England
Welcome to the forum! I think we all share your frustrations. It's a cruel disease for everyone concerned and sometimes the best way we can be helped is to know we are not alone. Hope you can glean support, comfort and knowledge here. God bless!

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.

Fri May 10, 2013 10:16 am

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: New from England
Hi Chandris, welcome to the forum.

I think a lot of us go through the emotional rollercoaster. It is natural to be hopeful every time there seems to be improvement, only to have those hopes dashed at the next decline. I don't know if this always continues indefinitely but it certainly goes on for a long time.

It helps to be realistic about the disease, take the long view, and recognize that over time it is inevitably going to cause deterioration that will not reverse. That's a sad thing to say but I think you may not go through as much of an emotional rollercoaster if you maintain a realistic perspective.

Good luck!


Fri May 10, 2013 11:09 am

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New from England
I too would like to welcome you to the LBDA forums and I hope it can become a place for comfort for you as well as place you you can get some answers for the many questions that come with this illness. As to solutions, they are far and few in between, mainly it is finding the correct combination to the medication but often that is much trial and error.

Good Luck and do visit us often !

Irene Selak

Sun May 12, 2013 10:36 am
Profile WWW

Joined: Thu Apr 21, 2011 9:07 pm
Posts: 248
Post Re: New from England
Welcome, and warm thoughts across a long distance - but we are all brought close by our efforts to help each other cope with the challenges of LBD.
I have found both help and support here, and hope you will, too.

Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.

Sun May 12, 2013 10:42 pm

Joined: Mon Oct 01, 2012 11:24 pm
Posts: 15
Post Re: New from England
Greetings! I too would like to welcome you to the LBDA forums. I trust you will find this forum to be a very useful, educational tool and that you feel very well supported by forum members.

Yours in service,

Toy Scaife-Rooks, LBDA Volunteer and Programs Coordinator

LaToysa Scaife-Rooks, MPH
Lewy Body Dementia Association (LBDA)
Volunteer and Program Coordinator

Mon May 13, 2013 3:37 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: New from England
Welcome to the forum and sorry for your need to be here. I wish there were a way of CGs to get off/not be on an emotional roller coaster when dealing with a LO with this disease. There is so much that CGs have to do, be in charge of, make decisions about, adjust to, etc. that it is probably a very unusual person who DOESN'T feel like they are on an emotional roller coaster. It's a good time to ask for various types of help and support from friends and family, and especially have someone you can talk with about this role that none of us wanted to have. It was really true for me that the best listeners were people on the forum, in the support group I attended, and a counselor at a memory care center. These were the people who could relate to what I was going through and give me the kind of support I needed. Come back often and let us help you with this roller coaster of emotions you are experiencing and are likely to continue to experience. Lynn

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.

Thu May 16, 2013 9:54 pm
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