Guest guest Posted January 14, 2012 Report Share Posted January 14, 2012 Hi Sandy and Judy, Thank you so much for your caring responses. Judy, I am grateful to have help with on a daily basis. I had scaled down on #of hours of care because I was able to handle things and $$$. Now, I am somewhat terrified that I won't be able to get him to transfer---it is quite a challenge from wheel chair to recliner but fairly easy from wheel chair to bed because of a transfer pole. With steroids starting Monday, I have no idea how it will affect him, so I upped the # of hours to 10-12. Obviously, this is all a process. Thank goodness he can talk and enjoy things, like the 49er game! I feel such sadness about both  your mom, and Sandy, your dad. Your dad was so young when he died. will be 70 in June and that is young, too.  Judy, the loss, on all levels, of  mother is so deeply wounding, especially since she was always there for you. Friends can be wonderful, but I also sense with some, a desire to not have to be around too much. And I do feel I have chewed their ears off for many years.....These same friends supported me when I had cancer! So, I am thinking of this as a spiritual journey, wanting to give the best of myself to , while not losing myself. Please know I care. W. ________________________________ To: " LBDcaregivers " <LBDcaregivers > Sent: Saturday, January 14, 2012 5:04 AM Subject: Hi linda and sandie  Hi and sandie It was nice to find your answers to my posts this morning. I appreciate your friendship during this dark time for me. Sandie - I like how u compared the grief process during the decline and then after your dads passing. I understand what you mean that our loved ones are still in there somewhere...... My mother is so quiet and hasn't spoken for so long - but when I am with her I still see a form of her. I guess one of the few people who understands my sadness is my brother.... It's only the two of us...but......since I'm the one who spends most of the time with her and is responsible for all aspects of her life it weighs heavy on my heart on a day to day level. I'm trying to keep it together but my heart and spirit are seeming to collapse under my heavy heart..... , I was wondering how you are caring for bob now with him being so weak and starting cancer treatments. Do you have help in the house for him - or are you doing it all yourself ? Either way my thoughts and prayers are with you as you move on with your bob..... Judy Judy R Strauss, LMSW, PhD Area Chair | College of Social Sciences University of Phoenix Jersey City Campus | 100 Town Square Place | Suite 305 Jersey City, NJ 07310 Cell: Email: Jrstr@... > Hi - My heart goes out to you. I include you, and your , in my prayers. I agree with you, our loved ones are in there on some level. My dad wasn't able to speak the last 2 1/2 years of his life yet his eyes would dance when I walked in the room. Then for a few weeks when I had Exelon started he was briefly able to sort of speak. Again, it was brief but I was thrilled I was able to hear him again. That didn't last long yet confirmed to me that my dad was and had been locked inside himself for quite some time. Sending you many hugs and keeping you and in my prayers- SandieDes Moines, IADad, Merle, passed from LBD 9-20-02, age 65 > > ----- Welcome New Members > > > > > > I'm glad you found us. > > > > > > First & foremost: > > > > > > NO TRADITIONAL ANTIPSYCHOTICS (e.g. Haldol, Chlorpromazine), > > > NO ANTICHOLINERGIC DRUGS (e.g. Benadryl, Tylenol PM, Detrol, Enablex) > > > > > > EXTREME CAUTION with MOST BENZODIAZEPINES (e.g. Ativan) > > > EXTREME CAUTION with some ATYPICAL ANTIPSYCHOTICS (e.g. Risperidone, Zyprexa) - but some are used w/ success (e.g. Seroquel, Clozaril) " Start Low, Go Slow " > > > > > > Take a moment to post a possible med. before trying - this board has an archives section w/ tons & tons of warnings about meds that don't work for those w/ LBD - they are extremely sensitive to meds! > > > > > > Read here: > > > Risperdal & Haldol > > > Message w/ collection of articles re: above > > > http://health.groups.yahoo.com/group/LBDcaregivers/message/70932 > > > > > > 2006, July 2 -- ADVERSE EFFECTS OF ANTIPSYCHOTICS ARE 'TIP OF THE ICEBERG' > > > Letter to the Editor - by Louis R. Caplan, MD > > > http://health.groups.yahoo.com/group/LBDcaregivers/message/73781 > > > > > > Dementia With Lewy Bodies: A Review Of Clinical > > > Benzodiazepines (e.g. Ativan) may negatively affect cognition and produce sedation, paradoxic agitation and increased risk of falls in the elderly > > > http://tinyurl.com/2n54qj > > > > > > Why such strong feelings about benzos? > > > Message by , also includes info re: an exception to the no benzo warning, Klonopin, that has been used with success for RBD (REM Behavior Disorder) by Dr. Boeve. > > > http://health.groups.yahoo.com/group/LBDcaregivers/message/61849 > > > > > > A Lewy Body patient > > > Lewy Body symptoms make my life one of constant frustration. > > > by Shirley Lay > > > http://www.care-givers.com/DBArticles/pages/viewarticle.php?id=730 > > > > > > Evaluating Meds > > > Advice from a PharmaD via Lin > > > http://health.groups.yahoo.com/group/LBDcaregivers/message/75551 > > > > > > Legal Stuff - get it done NOW > > > http://health.groups.yahoo.com/group/LBDcaregivers/files/ > > > scroll down to this document: > > > The Business of Dementia.doc > > > The 'legal' things you need to know about > > > > > > Top links to important LBD resources (IMHO) > > > > > > A Must Read by Dr. Bradley Boeve > > > A Comprehensive Approach to Treatment can Significantly Improve the > > > Quality of Life of Patients with the Lewy body dementias. > > > http://tinyurl.com/c2m5l6 > > > > > > Diagnostic Review & Medicine Management > > > by Bradley F. Boeve, MD (October 2004) Physicians guide to diagnosing > > > and treating DLB/LBD. Includes recommended dosages. > > > http://tinyurl.com/bhppca > > > > > > An Introduction to Lewy Body Dementia - for newly diagnosed patients and their family > > > http://www.lbda.org/index.cfm?fuseaction=product.print & product_id=10255 > > > > > > *** 2006, September 08 -- Lewy body dementia > > > From MayoClinic.com, Special to CNN.com. Norma says, " ...this is the most detailed, accurate information I've ever read about LBD. I think it should be sent to all new caregivers AND doctors who aren't clear. Thoughts everyone? " Keli says, " Definately yes!!! This is very informative yet not overwhelming. It can easily be shared with others. I intend to have my husband and children read it, and hopefully my moms dr's as well. Very good information. " > > > http://www.cnn.com/HEALTH/library/lewy-body-dementia/DS00795.html?iref=newssearc\ h > > > > > > LBD Brochure > > > (to print use legal size paper) > > > http://www.lbda.org/feature/1925/facts-about-lbd-brochure.htm > > > > > > " Difficulties in Diagnosing Lewy Body Dementia " > > > by T. MD > > > http://www.youtube.com/LBDAtv > > > > > > Live Chat Event with Gomperts, MD > > > Dr. Gomperts answered your questions in this Q & A session from March 2007 > > > http://www.lbda.org/node/597 > > > > > > If your LO hasn't been diagnosed yet, make sure they get a FDG-PET assessment. > > > http://interactive.snm.org/index.cfm?PageID=7405 & RPID=627 > > > > > > And a summary of what's on this board: > > > Main board: > > > http://groups.yahoo.com/group/LBDcaregivers/ > > > (Read your emails via the board vs. your `in box'. And get into all > > > the different sections that are available on the website. Search > > > archived messages here.) > > > > > > Links Section: > > > http://health.groups.yahoo.com/group/LBDcaregivers/links > > > (Tons of links that is continuously a `work in progress' & ndash; all these > > > links are useful to the caregiver. A variety of categories neatly > > > organized into folders & ndash; what topic are you interested in? Find the > > > folder and within it find numerous links to other websites for > > > additional information.) > > > > > > Files Section: > > > http://health.groups.yahoo.com/group/LBDcaregivers/files/ > > > (Read other caregiver's stories, read about the good & bad drugs > > > here, print a " companion card " from here (cards to hand out in public > > > areas about your LO's behavior), find the locations of other > > > caregivers who are possibility living in your immediate area, FAQ > > > document, LBD Phases by LBD Caring Spouses, etc.) > > > > > > Database Section: > > > http://health.groups.yahoo.com/group/LBDcaregivers/database > > > (Suggested reading, learn the common denominators about our loved > > > ones, medical referrals, nursing home referrals, bibliography of LBD > > > in literature and film, etc.) > > > > > > Photos Section: > > > http://health.ph.groups.yahoo.com/group/LBDcaregivers/photos > > > (Put a face to a name.) > > > > > > Polls Section: > > > http://health.groups.yahoo.com/group/LBDcaregivers/polls > > > (Several polls running re: LBD) > > > > > > ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom fell into the 50% category of those who could not handle antipsychotics; Was successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. 30th, 2006. > > > > > > ------------------------------------ > > > > > > Welcome to LBDcaregivers. > > > > > > Quote Link to comment Share on other sites More sharing options...
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