Guest guest Posted January 15, 2012 Report Share Posted January 15, 2012 Dear Sandie and All, Thank you for all your sharing. Sandie, your parents were so young. Your mom only 47. But you were really young to lose both your parents, 19 and 39. I didn't realize it's been so long for you as well. I don't read all these e-mails - too much for me somedays - so I apologize for that. I really like how you worded your comment to all those whose " loved ones have won their battle " . That puts a much more positive spin on how this terrible journey ends. Thank you for sharing your dad's story with the hallucinations. I don't think I'm as strong as you were since I can only take so many hours around my mom when she's hallucinating. I start out calm and understanding but after a while I have to walk away. That's when I'm grateful for any medication that will give mom peace as well as me - that sounds selfish I know. Especially if those medications keep her out of the ER and the behavioral unit. That is my no. 1 concern. What brings my mom peace right now is me cleaning. I know this sounds silly. (Jan mentioned finding things that our LO's can relate to. Mom can't read, write, watch TV, refuses any group activities, etc - it's been a challenge.) Mom loved cleaning. Her home always looked like a show home. So now when we visit it gives us something in common. She sits up straighter - very hard for her to do with all her spinal problems and Parkinsons - and her eyes take it all in. Even though her mind is sometimes in another realm she feels present somehow. It's like I'm honoring her in a small way. Bless you Sandie, Judy, Helene, and with all your challenges with . and are my brother's and sister's names, who are suffering as well. Very hard for me to even write these names. , I too think of this as a spiritual journey wanting to give the best of myself to my mom, and other loved ones who are also suffering, while not losing myself. That is not easy and this past week was one of the worst. Maybe it's the time of year. Wishing us better, brighter tomorrows! Marcie, daughter of Marjorie, age 82, in dementia unit, dx may 2011 _____ From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Sandie / Sent: Saturday, January 14, 2012 8:39 PM To: LBDcaregivers Subject: Re: Hi and Judy Hi Judy and - Judy, I do understand how one's heavy heart brings the spirit and soul with it. LBD is a tough journey to travel. It was heartwrenching to watch my dad go through the many struggles, and, also unable to speak, it seemed each hallucination would send him over the last ledge. I remember so many times taking his hand, holding it tightly, telling him I understood as what we were looking at scared me too so we should turn and walk away from it. The fear in his eyes, his flailing arms, and grunting were almost too much to bear but I had promised him we would be " in this together 'til the end " and I was determined to find the inner strength to make that happen. My heart goes out to you, and all still on this confusing and heartbreaking LBD journey. 'The book you picked up...Adult Orphan, brought back memories, too. I, too, only have one sibling, a brother, and I remember he and I saying after dad passed away how we felt like orphans. Our mom passed away of lung cancer at age 47, almost 29 years ago. I was 19. Dad passed away at age 65, when I was 39. We were no longer someones children. The people that knew us the longest, with the most knowledge of our history, were gone. It still at times is such an empty feeling. Mostly I have decided to turn it to positive energy and use what I have been through to connect with others that might be feeling what I went through - I can say I feel I know what they are going through. I do believe our loved ones know us up until they win their battle, with what ever struggle it is. They know our movements, our voice, and our scent. My dad didn't talk for a good 2 1/2 years yet he had the biggest blue eyes that spoke volumes. He trusted me and knew when I was there even though he couldn't say my name. My mom was in a coma over a day when she passed and I sat by her bedside telling her all my thoughts over the years up until the present. Her eyes would flutter and a tear ran down her cheek. , oh how my heart goes out to you, too. You have so much to deal with. I admire that you are finding strength to go on and take care of your . I know you will continue to have the knowledge and strength to continue to travel this journey. You are not alone in this. Please remember that as long as there is life, there is hope. And we are only responsible for the effort, not the result. We can only do and give what we know how to and the result isn't up to us. My thoughts and prayers are with you, and Marcie, all who are in the midst of caring for a loved one, and all who's loved ones have won their battle- Sandie Des Moines, IA dad, 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 <http://www.lbda.org/index.cfm?fuseaction=product.print & product_id=10255> & 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=newss earch > > > > > > 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 <http://interactive.snm.org/index.cfm?PageID=7405 & RPID=627> & 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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