Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 Welcome Nick- I would echo what Courage wrote you. It is helpful to have Power of Attorney, possibly your mom and someone else as well. Check into the many drugs that can be harmful to this disease. A couple to keep in mind are (Lorazepam) also known as Ativan. Also, (Haloperidol) also known as Haldol. Keep in mind of safety with your dad. As time goes on he may develop audio and/or visual hallucinations. I would suggest trying not to talk him out of these times but to encourage him, acknowledge them, and help him through them. One thing I learned in physical therapy with my dad is to give prompts during walking and/or eating. Often with Parkinson's (which this disease has symptoms of) to prompt to take a step or step over a certain area if our loved one becomes frozen. Also, while eating often our loved one will forget how to eat or what to do with a utensil...prompt to chew or even give an empty utensil which will remind them to open their mouth. I noticed you wrote " mum " in a reply. May I ask where you are located? My husband is from New Zealand and 'mum' is common language around our house. In all of this remember to take care of you, and be sure your mom is doing the same. Hugs- Sandie and -- Re: Just Diagnosed Hello There, Thanks very much for the reply - obviously just knowing that there is help out there is a big thing. I'm just about getting myself together, don't think that my mothers at this point yet though. She's in pieces at the moment, she's doing a fantastic job with my Dad, but what with the depression, poor mobility, lack of communication, lack of sleep its pretty difficult. I'm just beginning to sort out my head, and thanks for the information which is great (I'll give this to my Mum also). Will no doubt be in here again. Thanks once again. Regards Nick > > Hi Nick, > > Welcome to the group. > > Off the top of my head I would suggest that you and your family start to > get financial matters together such as Power of Attorney. You may also > want to start making a list of all the people who can come into your mom > and dad's home to help - family members and trusted friends. Start > thinking about getting in-home care to relieve the person who will be > doing the majority of care - I'm assuming it will be your mom. How > about Adult Day Care? Start listing all the services in your mom and > dad's area for elders. There are all kinds of programs out there that > offer help. > > There are very practical matters such as adult diapers, getting a pill > crusher, a wheelchair that allows the legs to be extended straight out, > making the bathroom safer with safety aids, getting rid of rugs - > essentially making the home safer for you dad. You can find good info > about this on the AD websites. > > Biggest thing to do now is to take a big, deep breath. I know too well > how you are feeling. I was walking around in shock for the longest > time. Getting prepared and learning about this damned disease finally > got me up and fighting again. > > Hang in there and you've come to the right place for help. > Courage > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 Hi Sandi and , Thanks for your kind words. So many replies from so many people. As you are probably aware its a bit like a bad dream at the moment. I know that I'm basically saying the same to all, but I really am just trying to collect my thoughts at the moment, and then hopefully do something useful with them. In answer to your question I and my family are in England, my parents live in Woodstock (Oxfordshire) and I'm about 30 min away. Will no doubt speak again over the coming weeks/months. Thank you for your help. Kind Regards Nick > > > > Hi Nick, > > > > Welcome to the group. > > > > Off the top of my head I would suggest that you and your family > start to > > get financial matters together such as Power of Attorney. You may > also > > want to start making a list of all the people who can come into > your mom > > and dad's home to help - family members and trusted friends. Start > > thinking about getting in-home care to relieve the person who will > be > > doing the majority of care - I'm assuming it will be your mom. How > > about Adult Day Care? Start listing all the services in your mom > and > > dad's area for elders. There are all kinds of programs out there > that > > offer help. > > > > There are very practical matters such as adult diapers, getting a > pill > > crusher, a wheelchair that allows the legs to be extended straight > out, > > making the bathroom safer with safety aids, getting rid of rugs - > > essentially making the home safer for you dad. You can find good > info > > about this on the AD websites. > > > > Biggest thing to do now is to take a big, deep breath. I know too > well > > how you are feeling. I was walking around in shock for the longest > > time. Getting prepared and learning about this damned disease > finally > > got me up and fighting again. > > > > Hang in there and you've come to the right place for help. > > Courage > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 Hey Nick- Thanks for your reply. We have a few other members from England. I can think of 3 off the top of my head. Two members live in Kent - one in Faversham and one in Tonbridge. Wish I knew more of England to place where you are in relation to them. Meeting other caregivers, in person, is a gift beyond words. I had organized the first ever caregivers gathering here in the U.S. in August 2003. I had had the blessing of meeting other caregivers, before the gathering, and wanted others to feel the support. So it was. We had members from across the U.S. attend as well as my now husband, , from New Zealand. His mother still struggles with LBD in New Zealand. We met here in the caregivers group. I do understand that this is all feeling like a nightmare. If we could only wake up and get on with life, yet there is a reason and purpose for this in your life. Just think though, there are people all over the world keeping you in our thoughts and prayers now that you have joined the group. If there is anything specific we can help with please ask. No question is too big or too small. Sending strength from across the pond- Sandie and -- Re: Just Diagnosed/Nick Hi Sandi and , Thanks for your kind words. So many replies from so many people. As you are probably aware its a bit like a bad dream at the moment. I know that I'm basically saying the same to all, but I really am just trying to collect my thoughts at the moment, and then hopefully do something useful with them. In answer to your question I and my family are in England, my parents live in Woodstock (Oxfordshire) and I'm about 30 min away. Will no doubt speak again over the coming weeks/months. Thank you for your help. Kind Regards Nick > > > > Hi Nick, > > > > Welcome to the group. > > > > Off the top of my head I would suggest that you and your family > start to > > get financial matters together such as Power of Attorney. You may > also > > want to start making a list of all the people who can come into > your mom > > and dad's home to help - family members and trusted friends. Start > > thinking about getting in-home care to relieve the person who will > be > > doing the majority of care - I'm assuming it will be your mom. How > > about Adult Day Care? Start listing all the services in your mom > and > > dad's area for elders. There are all kinds of programs out there > that > > offer help. > > > > There are very practical matters such as adult diapers, getting a > pill > > crusher, a wheelchair that allows the legs to be extended straight > out, > > making the bathroom safer with safety aids, getting rid of rugs - > > essentially making the home safer for you dad. You can find good > info > > about this on the AD websites. > > > > Biggest thing to do now is to take a big, deep breath. I know too > well > > how you are feeling. I was walking around in shock for the longest > > time. Getting prepared and learning about this damned disease > finally > > got me up and fighting again. > > > > Hang in there and you've come to the right place for help. > > Courage > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 Hi there Nick My name is Sally Rodgers and my dad died to LBD Oct 21st 2002. This site saved my sanity! I made heaps of terrific friends here and can't begin to tell you how amazing they are. I 'lurk' around the site these days because I am a full time primary school teacher and am so darn busy I could collapse!! My dad was 67 years old when he died. He was probably declining for at least 5 years prior to that - if not more. It is impossible to say. He was misdiagnosed with Parkinsons before the dreadful downward spiral began. He too had Rivastigmine - it helped at first. It gave us a breather. But please never forget ther are NO drugs for LBD - they give relief for a while but eventually the side-effects and general effectiveness has little positive effect. It's a roller-coaster ride!! Some do well on it - others don't.Everyone with LBD is unique - no two patients are ever the same. My dad was made much worse by general aneasthetic and any benzodiazipine drug - AVOID DIAZEPAM!!! You will be astounded at the wealth of knowledge here - and the readiness at which people want to help. All the best to you Sally x -- Internal Virus Database is out-of-date. Checked by AVG Anti-Virus. Version: 7.0.298 / Virus Database: 265.6.3 - Release Date: 21/12/2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Hi Nick, Welcome! I am sorry for the circumstances for which you have to be here, but you have found a group of people all experiencing what you are experiencing and even more depending on how far your LO (Loved One) has progressed into the disease. You are sure to identify with someone here and realize that you are not alone with your experiences. I know how devastating it is when you first discover how serious this disease is and what you are in for in the journey of LBD. Advice: Medically, make sure you arm yourself with all information especially, medications that our LOs are sensitive to, so when you have doctor visits or hospital visits you can inform all the staff there. I have even ordered an Allergy Medic Alert Bracelet over the internet that my husband wears constant. I have Haldol and Ativan listed on it as allergies. The more you can do to make the point the better. Practical, when your LO hallucinates sometimes it's just better to play along with it than to try to make sense out of it and become frustrated. Remember, it's the disease and not your LO. Make sure the caregiver has respite, it is very important for their own health and so they don't burn out. Financial, As has been mentioned and very improtant is Durable Power Of Attorney. I'm not sure of your laws and Long Term Care Facilities in England, so it is hard to explain much in that area. You will get a lot of information here to help you through your frustrations. I know this is very hard on your mother and she is lucky to have your support, she will really need it. Stick with us and we'll see you through......Jan --- nickmyall wrote: > Hello, my name is Nick Myall. My Father has just > been diagnosed with > Cortincal Lewy Syndrome. We only found out for sure > that this is what > he had 4 days ago - and are still trying to come > terms with it. My > mother who obviously lives with him 24/7 is > absolutely devastated. > > The reality is that we as a family don't know what > the future holds for > us all, my Father included. We are frightened, > upset, distraught - you > name it we feel it at the moment. I am just trying > to scrabble around > for any information/advice/help that anyone can give > - be this medical, > practical, technical, financial - really anything > and everything. > > My father is being diagnosed a drug called > Rivestigmine to slow down > the illness - does anyone have any experience of > this? > > Thanking you in advance. > > Regards Nick > > > > __________________________________ Start your day with Yahoo! - Make it your home page! http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
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