Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 So my father's battle with LBD is over, but I find I want to continue learning about this disease and helping others. Any suggestions from the group? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Ann (MB) - You can join the many of us who have decided to stick around this board and help those who are new to the disease. Everyone that has stayed on the board after their LO has passed experienced different things - so collectively we can pretty much help all aspects of caregiving b/c one of us has already been there. My mom passed away September 2006, and I can honestly say that I know more now than I did before. (unfortunately for Mumsie, but at least I can pass on what I've learned to others...) After my mother's passing I decided to be a facilitator of a LBD support group. Now I can pass on all that I've learned to those locally who are new. e.g. During mom's journey I didn't know who the best doctors to go to in MA, now I know... The support group meets monthly. To those who just join the local group receives an email from me that lists a # of the most useful links that are out there about LBD. I now have tons of local resources under my belt too - some used by me & mom and others that were given to me from MA Alz. Assoc. (e.g. local Day Care Centers, local In-Home Care Services, etc.) Those who find me in MA are now getting a huge amount of info in one dose... As you know caregiving is very time-comsuming so I'm sure those w/in the local support group are grateful of the resources given. One caregiver had his mother move into the same NH my mother was in, another caregiver used the same woman who would give my mom weekly compassionate touch massages, a few caregivers met with the doctor who did the online Q & A session at LBDA.org, another caregiver went to the elder law attorney that I went to... I noticed that you're in WI - there isn't a local support group there yet - see here: http://www.lewybodydementia.org/sptgroups.php See - there's tons of stuff to do... And things that are not only very useful to other caregivers, but gratifying for you too. And healing too! Just by doing what I do on this board + what I do for LBDA has allowed me to do something productive after the loss of my mom - and I'm keeping my mom's spirit alive as well... > > So my father's battle with LBD is over, but I find I want to continue > learning about this disease and helping others. Any suggestions from > the group? > Quote Link to comment Share on other sites More sharing options...
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