Guest guest Posted July 17, 2004 Report Share Posted July 17, 2004 Welcome to our group. I can only speak of what worked for my family.There are 6 children. Three in state with my parents (me being one of those ) and 3 out of state. When my mother was diagnosised (she passed away in Jan 2004) we all sat down with her and my dad, talked about the disease and what they wanted. They elected to stay in their own home for as long as possible. Each one of us kids took on a role. Some of us more than others, but the most important thing we did was to agree that we were all going to do the best we could to take care of our parents. I think that you have to do what you think is right and in the end it will be the right thing. If you love with your heart and react with that love then you cant be wrong. M > >Reply-To: LBDcaregivers >To: LBDcaregivers >Subject: Being Overwhelmed >Date: Sat, 17 Jul 2004 19:00:10 -0000 >MIME-Version: 1.0 >X-Originating-IP: 208.190.176.41 >X-Sender: nflittlejohn@... >Received: from n33.grp.scd.yahoo.com ([66.218.66.101]) by >mc2-f20.hotmail.com with Microsoft SMTPSVC(5.0.2195.6713); Sat, 17 Jul 2004 >12:01:35 -0700 >Received: from [66.218.66.156] by n33.grp.scd.yahoo.com with NNFMP; 17 Jul >2004 19:00:25 -0000 >Received: (qmail 33034 invoked from network); 17 Jul 2004 19:00:17 -0000 >Received: from unknown (66.218.66.216) by m16.grp.scd.yahoo.com with QMQP; >17 Jul 2004 19:00:17 -0000 >Received: from unknown (HELO n39.grp.scd.yahoo.com) (66.218.66.107) by >mta1.grp.scd.yahoo.com with SMTP; 17 Jul 2004 19:00:17 -0000 >Received: from [66.218.67.165] by n39.grp.scd.yahoo.com with NNFMP; 17 Jul >2004 19:00:10 -0000 >X-Message-Info: JGTYoYF78jEVpn4JzVm/hOMO7wYmt/j+ >X-eGroups-Return: >sentto-2141318-32381-1090090819-cat86443=hotmail.com@... >X-Apparently-To: LBDcaregivers >Message-ID: <cdbsvq+ijq2eGroups> >User-Agent: eGroups-EW/0.82 >X-Mailer: Yahoo Groups Message Poster >X-eGroups-Remote-IP: 66.218.66.107 >X-Yahoo-Profile: nflittlejohn1953 >Mailing-List: list LBDcaregivers ; contact >LBDcaregivers-owner >Delivered-To: mailing list LBDcaregivers >Precedence: bulk >List-Unsubscribe: <mailto:LBDcaregivers-unsubscribe > >Return-Path: >sentto-2141318-32381-1090090819-cat86443=hotmail.com@... >X-OriginalArrivalTime: 17 Jul 2004 19:01:35.0761 (UTC) >FILETIME=[7B643010:01C46C30] > >Hi! >My father was diagnosed with LBD only two days ago. He has been >symptomatic for at least a year.My parents were given a lot of >information both verbal and written at once. They are very impressed >with Daddy's neurologist, but they are overwhelmed. None of us, >including one of my sisters who is a nurse practioner and a Ph.D in >epidemiology, had ever heard of it. I have done extensive research >on the internet which I have forwarded to my 3 siblings. When my >mother called me yesterday just to say she was too tired and >overwhelmed to talk about it yet, I assured her that we would give >them time to digest everything, then she coud call us when she was >ready.I am the oldest of four children at age 50 married with two >children on their own (26,24) and one still in college(21);a married >sister,48, with two children,11 and 7; a single sister,46; and a >married brother,41, with two children,11 and 7.We are all very close >to each other as well as our parents. Problem- we all live in >different places-Wichita Falls,TX,Dallas, Houston,,TX, and >Washington, D.C.Our parents have always taken very good care of us. >It is our turn to take care of them.My mother spent several weeks >with my sister after my sister sustained a serious knee injury last >summer, and even as late as January, she came down to take care of >me after I broke my pelvis in a car accident. What is the best thing >for the four of us to do now? >nfl > _________________________________________________________________ Discover the best of the best at MSN Luxury Living. http://lexus.msn.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2004 Report Share Posted July 17, 2004 > Hi! > My father was diagnosed with LBD only two days ago. He has been > symptomatic for at least a year.My parents were given a lot of > information both verbal and written at once. They are very impressed > with Daddy's neurologist, but they are overwhelmed. None of us, > including one of my sisters who is a nurse practioner and a Ph.D in > epidemiology, had ever heard of it. I have done extensive research > on the internet which I have forwarded to my 3 siblings. When my > mother called me yesterday just to say she was too tired and > overwhelmed to talk about it yet, I assured her that we would give > them time to digest everything, then she coud call us when she was > ready.I am the oldest of four children at age 50 married with two > children on their own (26,24) and one still in college(21);a married > sister,48, with two children,11 and 7; a single sister,46; and a > married brother,41, with two children,11 and 7.We are all very close > to each other as well as our parents. Problem- we all live in > different places-Wichita Falls,TX,Dallas, Houston,,TX, and > Washington, D.C.Our parents have always taken very good care of us. > It is our turn to take care of them.My mother spent several weeks > with my sister after my sister sustained a serious knee injury last > summer, and even as late as January, she came down to take care of > me after I broke my pelvis in a car accident. What is the best thing > for the four of us to do now? > nfl Hi nfl, I'm very sorry to hear about your dad. Seems like there are more diagnosis like this then ever before. You are lucky to be from a close family, that will surely be a help to all of you, especially your mum as it seems she is the main caregiver for your dad. It is hard to help from long distance, but e-mails, cards, postcard, phone calls, any kind of communication will be a good thing. My sister and I live only 45 minutes apart but only get to see each other a couole of times a month. But we keep in touch constantly by e- mail and phone as we both are involved in mums care (dx in Apr 2004 and currently in NH). As I wrote to Barbara, this place was like an oasis in the desert for me. You will find so much support and help here from others that have gone through or are experiencing caring for someone with LBD, and you never feel alone. All the best, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2004 Report Share Posted July 17, 2004 It will probably come in stages. My FIL was diagnosed a little over a year ago. Lots has happened since then. Maybe you could let us know a little more about what is happening with your Dad from a behavioral standpoint. Certainly medications have helped us a lot. Also, a loving caregiver that we screened for and hired from an outside agency has extended the time my FIL was able to remain at home. Let us know more. SEPJ > Hi! > My father was diagnosed with LBD only two days ago. He has been > symptomatic for at least a year.My parents were given a lot of > information both verbal and written at once. They are very impressed > with Daddy's neurologist, but they are overwhelmed. None of us, > including one of my sisters who is a nurse practioner and a Ph.D in > epidemiology, had ever heard of it. I have done extensive research > on the internet which I have forwarded to my 3 siblings. When my > mother called me yesterday just to say she was too tired and > overwhelmed to talk about it yet, I assured her that we would give > them time to digest everything, then she coud call us when she was > ready.I am the oldest of four children at age 50 married with two > children on their own (26,24) and one still in college(21);a married > sister,48, with two children,11 and 7; a single sister,46; and a > married brother,41, with two children,11 and 7.We are all very close > to each other as well as our parents. Problem- we all live in > different places-Wichita Falls,TX,Dallas, Houston,,TX, and > Washington, D.C.Our parents have always taken very good care of us. > It is our turn to take care of them.My mother spent several weeks > with my sister after my sister sustained a serious knee injury last > summer, and even as late as January, she came down to take care of > me after I broke my pelvis in a car accident. What is the best thing > for the four of us to do now? > nfl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Hi there nflittlejohn 1953 Welcome to our 'family' - sorry that you had to 'find' us under such sad circumstances! We are here to help as much as we can. I'm in the UK - there are several 'Brits' lurking here. My precious dad died to LBD in Oct 2002. His story can be found in full, along with TONS of wonderful information, photos and stuff by going to the FILES area of this forum - all under 'CCC' Files. There are several 'things' I would do as priority 1. Make sure you have the best geriatric psychiatrist and neurologist you can get. You can find out the 'best' research hospitals etc here. 2. Consider Power of Attorney and that legal stuff as regards your parents wishes etc. I think that became a hot issue for me because my dad was alone, my mom had died a year before. 3. Keep a journal and darn good diary notes of all fluctuations, changes, differences, drug reactions .... EVERYTHING! 4. Use this site to question, probe, vent, cry, spit, swear .... Never be afraid to ask any question. 5. Understand that LBD sufferers are CRITICALLY sensitive to all medication and certain drugs can have fatal effects. All drugs are administered with extreme caution and some should be avoided - namely the benzodiazepines (Ativan, epam, Lorazepam) 6. You can't do everything or carry this burden on your shoulders. You will need help and so start to think about the support structures that could be put into place. I'm useless at understanding medical insurance schemes but plenty here DO have a handle on it! 7. Print off as much information as you can from here and go armed with photocopies for all medical staff - it is astounding how ignorant people are to this disease! You will need to educate and inform the so called 'experts', most of whom will be as much in the dark as you! 8. DON'T PANIC ..... don't be overwhelmed. You have found a place of sanctuary here. This place is an oasis of hope ... I would have been crushed had it not been for this wonderful group of saints. We will do all we can to help. Sally x Quote Link to comment Share on other sites More sharing options...
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