Guest guest Posted April 23, 2006 Report Share Posted April 23, 2006 Hello. My name is Joanne, and my 79 year old step-father was diagnosed with LBD yesterday. My mother died 10 years ago; Poppy was spending the day in a chair with a gin bottle next to him, so, as I was single (sort of, anyway) I left my apartment to stay with him until he got back on his feet. I figured it would be about 6 months. I have lived with him for 10 years now, and as obvious as the changes have been over the last 9 months, we are both devastated. I long time ago, he asked me never to place him in a nursing home, and I said I would not. It's still early, but I'm up and crying at 4 in the morning, wondering how I am going to do this. I'm a teacher, and I have to work to support us. I have 13 years until retirement, and need every dime of my teacher's salary to support us. What should I know? What should I ask the Doc? How long will it be until he is incapacitated? --------------------------------- Celebrate Earth Day everyday! Discover 10 things you can do to help slow climate change. Yahoo! Earth Day Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2006 Report Share Posted April 23, 2006 Joanne, Welcome to this LBD List, but not for the reason you have to be here. For that I am sorry. We are all in this situation together, so I am happy to see that you are asking for help. I am sure someone can help. I am rather new to the List, myself, so I am not too much help. But, First, is your father on Medicare, or Medicaid? He surely should be. That would help a great deal. Can your father be left alone at this time? If not, Get in touch with the Dept. of Elder Affairs, and see how they can help you. They have many services to offer, and a great deal of guidance to offer as well. Even today, I learned more than I knew yesterday, from just being on this List, so hang in there, and you will get help. There are many " that have been there and done that, " who are more than willing to lovingly extend a hand. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has AD and possibly LBD, is Taking Aricept. In a message dated 4/23/2006 9:01:45 AM Central Daylight Time, jon0307b@... writes: Hello. My name is Joanne, and my 79 year old step-father was diagnosed with LBD yesterday. My mother died 10 years ago; Poppy was spending the day in a chair with a gin bottle next to him, so, as I was single (sort of, anyway) I left my apartment to stay with him until he got back on his feet. I figured it would be about 6 months. I have lived with him for 10 years now, and as obvious as the changes have been over the last 9 months, we are both devastated. I long time ago, he asked me never to place him in a nursing home, and I said I would not. It's still early, but I'm up and crying at 4 in the morning, wondering how I am going to do this. I'm a teacher, and I have to work to support us. I have 13 years until retirement, and need every dime of my teacher's salary to support us. What should I know? What should I ask the Doc? How long will it be until he is incapacitated? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2006 Report Share Posted April 23, 2006 Joanne, Sometimes you have to break that promise. When it's a safety issue for either you or your step-father, you have to sometimes make the hard choice. If he qualifies for Medicaid, then you need to be looking for a nursing home as soon as possible. Many have multi year wait lists. It's anybodies guess as to when he will be incapacitated. With LBD there can be sudden drops in ability. LBD has been called a roller coaster since abilities fluctuate. You need to look into day centers and/or someone to be with him. Since hallucinations (or called hallies for short) can happen anytime, I would say that it's not safe for him to stay home alone. Also, get your paper work in order: living will, will, power of attorney, etc. You don't know how much longer he can sign his name. Sorry you have to be here, but there is a wealth of information here and much compassion and support. in Dallas, Caregiver to Mother Billie in nursing home since Nov. 2003 Meds: Seroquel, Exelon, Nameda and others for blood pressure, thyroid, allergies, menopause. > > Hello. My name is Joanne, and my 79 year old step-father was diagnosed with LBD yesterday. My mother died 10 years ago; Poppy was spending the day in a chair with a gin bottle next to him, so, as I was single (sort of, anyway) I left my apartment to stay with him until he got back on his feet. I figured it would be about 6 months. I have lived with him for 10 years now, and as obvious as the changes have been over the last 9 months, we are both devastated. I long time ago, he asked me never to place him in a nursing home, and I said I would not. It's still early, but I'm up and crying at 4 in the morning, wondering how I am going to do this. I'm a teacher, and I have to work to support us. I have 13 years until retirement, and need every dime of my teacher's salary to support us. What should I know? What should I ask the Doc? > How long will it be until he is incapacitated? > > > > > --------------------------------- > Celebrate Earth Day everyday! Discover 10 things you can do to help slow climate change. Yahoo! Earth Day > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 Welcome Joanne, I hope you will share a little more info with us. Then we can better answer your questions. You sound very tired. It seems he must be able to be alone as you work? Does he get his Social Security? You should not have to support you both. His money should be spent on his half or more of the expenses as you are taking care of him. Does he sleep? That was a problem I had with my Mom when she was alive. It is a hard long journey. Putting them in a nh becomes almost needed in most cases of the disease if you are caregiving alone. Not many of us who did it alone, didn't at the end need help and had to use a nh. You promised him without knowing what that meant at the time. You still are required to caregive even when it is in a nh. If he has LBD, he can't do his own decision making. Hope you will come on again and share. We are here to help. And most are willing to share their experiences. Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org New to LBD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 Thanks for answering, Donna. Yes, I am tired. In fact, today was my first day back at school after Spring vacation; I slept through my alarm, and awoke at 10:30am. Fortunately, my school and boss are great, and figured something was really wrong. Yes, Poppy can still be alone, and a teacher's hours, for the most part, allow me to spend most of his day with him. But , we just learned of this on Friday. It was obvious he was not himself, and two weeks ago, I had to transport him by ambulance to the ER when his BP spiked to 185/110, and he got a sudden, terrible headache. He has a history of stroke, and many TIAs (Had one last Sunday, as I was looking and speaking with him) After he was sent home from the ER (no stroke, instructions to see Doc), he started with hallucinations, seeing me, my dead husband, my dead mother. He slept almost 20 hours a day that week, and would have awful, very vivid dreams, where he would call out , and thrash around. He was taking an anti-depressant called Cymbalta, and hated it! Funny, how, even when the brain is impaired, it somehow knows what is bad for it. He refused to take any more Cymbalta the week before Easter, and his sleeping has become much more peaceful. Consequently, he has gotten more rest , and has more energy. He is still driving around, locally, and he understands that it must stop soon. He cannot use figures, can't figure out money, and is putting away unwashed dishes from the washer back into the cabinets, that sort of thing. An hour later, however, he'll watch a baseball game, analyze it perfectly, read the paper, discuss it, and help me unload the groceries. He knows he has a disease, but can't remember the name of it. I've brokem down in front of him, and he'll hold me when I cry....he's taking this better than I am. Of course, he realizes he's impaired from his former self, but he doesn't think he'll get any worse. In fact, I don't have any idea how much worse he'll be, and how fast. The docror was not very forthcoming...very strange.He doesn't have a will, living or otherwise, and I don't yet have power of attorney. He has a SS check, and about another couple of hundred of investment income per month. He and my Mom didn't save very much, but their house is paid for, and I can maintain it fine on my salary. He is really my stepfather, but we've had him for 40 years, so he's my Dad. I have a brother, who never had a relatioonship with him, and will call me just to ask how much the house is worth...can't wait for him to die to get his share. I have a sister who is getting divorced this week, has 3 teens, has her hands full herself. She lives near, but we haven't told her yet. We'll do that next week. Should I take him to a neurologist? Is there anything that can slow this down? What about Exelon....I've seen that drug here on the support site. Most of all, how fast is this? Can I make it to summer vacation (June 30) without a daily caregiver visiting? Donna Mido wrote: Welcome Joanne, I hope you will share a little more info with us. Then we can better answer your questions. You sound very tired. It seems he must be able to be alone as you work? Does he get his Social Security? You should not have to support you both. His money should be spent on his half or more of the expenses as you are taking care of him. Does he sleep? That was a problem I had with my Mom when she was alive. It is a hard long journey. Putting them in a nh becomes almost needed in most cases of the disease if you are caregiving alone. Not many of us who did it alone, didn't at the end need help and had to use a nh. You promised him without knowing what that meant at the time. You still are required to caregive even when it is in a nh. If he has LBD, he can't do his own decision making. Hope you will come on again and share. We are here to help. And most are willing to share their experiences. Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org New to LBD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 Thanks for answering, Donna. Yes, I am tired. In fact, today was my first day back at school after Spring vacation; I slept through my alarm, and awoke at 10:30am. Fortunately, my school and boss are great, and figured something was really wrong. Yes, Poppy can still be alone, and a teacher's hours, for the most part, allow me to spend most of his day with him. But , we just learned of this on Friday. It was obvious he was not himself, and two weeks ago, I had to transport him by ambulance to the ER when his BP spiked to 185/110, and he got a sudden, terrible headache. He has a history of stroke, and many TIAs (Had one last Sunday, as I was looking and speaking with him) After he was sent home from the ER (no stroke, instructions to see Doc), he started with hallucinations, seeing me, my dead husband, my dead mother. He slept almost 20 hours a day that week, and would have awful, very vivid dreams, where he would call out , and thrash around. He was taking an anti-depressant called Cymbalta, and hated it! Funny, how, even when the brain is impaired, it somehow knows what is bad for it. He refused to take any more Cymbalta the week before Easter, and his sleeping has become much more peaceful. Consequently, he has gotten more rest , and has more energy. He is still driving around, locally, and he understands that it must stop soon. He cannot use figures, can't figure out money, and is putting away unwashed dishes from the washer back into the cabinets, that sort of thing. An hour later, however, he'll watch a baseball game, analyze it perfectly, read the paper, discuss it, and help me unload the groceries. He knows he has a disease, but can't remember the name of it. I've brokem down in front of him, and he'll hold me when I cry....he's taking this better than I am. Of course, he realizes he's impaired from his former self, but he doesn't think he'll get any worse. In fact, I don't have any idea how much worse he'll be, and how fast. The docror was not very forthcoming...very strange.He doesn't have a will, living or otherwise, and I don't yet have power of attorney. He has a SS check, and about another couple of hundred of investment income per month. He and my Mom didn't save very much, but their house is paid for, and I can maintain it fine on my salary. He is really my stepfather, but we've had him for 40 years, so he's my Dad. I have a brother, who never had a relatioonship with him, and will call me just to ask how much the house is worth...can't wait for him to die to get his share. I have a sister who is getting divorced this week, has 3 teens, has her hands full herself. She lives near, but we haven't told her yet. We'll do that next week. Should I take him to a neurologist? Is there anything that can slow this down? What about Exelon....I've seen that drug here on the support site. Most of all, how fast is this? Can I make it to summer vacation (June 30) without a daily caregiver visiting? Donna Mido wrote: Welcome Joanne, I hope you will share a little more info with us. Then we can better answer your questions. You sound very tired. It seems he must be able to be alone as you work? Does he get his Social Security? You should not have to support you both. His money should be spent on his half or more of the expenses as you are taking care of him. Does he sleep? That was a problem I had with my Mom when she was alive. It is a hard long journey. Putting them in a nh becomes almost needed in most cases of the disease if you are caregiving alone. Not many of us who did it alone, didn't at the end need help and had to use a nh. You promised him without knowing what that meant at the time. You still are required to caregive even when it is in a nh. If he has LBD, he can't do his own decision making. Hope you will come on again and share. We are here to help. And most are willing to share their experiences. Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org New to LBD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 This disease works at different speeds of degeneration for different people. There are peaks and valleys and even plateaus before the next level of degeneration. Yes drugs can slow the disease down. I am living proof. I take Aricept it has been a miracle drug for me. exelon is another good drug from what everyone has said but is usually used later in the disease. Yes you should go to a neurologist as soon as possible. Make sure they are well versed in Lewy Body Disease and all of the dementias. How did he get his diagnosis without seeing a neurologist? Just curious very unusual. Welcome here Joanne you will be glad you came. Great people here they have the experience and love and support you will need. Most are caregivers but there are some of us such as myself that have the disease. God Bless Dirk joanne oneill wrote: Thanks for answering, Donna. Yes, I am tired. In fact, today was my first day back at school after Spring vacation; I slept through my alarm, and awoke at 10:30am. Fortunately, my school and boss are great, and figured something was really wrong. Yes, Poppy can still be alone, and a teacher's hours, for the most part, allow me to spend most of his day with him. But , we just learned of this on Friday. It was obvious he was not himself, and two weeks ago, I had to transport him by ambulance to the ER when his BP spiked to 185/110, and he got a sudden, terrible headache. He has a history of stroke, and many TIAs (Had one last Sunday, as I was looking and speaking with him) After he was sent home from the ER (no stroke, instructions to see Doc), he started with hallucinations, seeing me, my dead husband, my dead mother. He slept almost 20 hours a day that week, and would have awful, very vivid dreams, where he would call out , and thrash around. He was taking an anti-depressant called Cymbalta, and hated it! Funny, how, even when the brain is impaired, it somehow knows what is bad for it. He refused to take any more Cymbalta the week before Easter, and his sleeping has become much more peaceful. Consequently, he has gotten more rest , and has more energy. He is still driving around, locally, and he understands that it must stop soon. He cannot use figures, can't figure out money, and is putting away unwashed dishes from the washer back into the cabinets, that sort of thing. An hour later, however, he'll watch a baseball game, analyze it perfectly, read the paper, discuss it, and help me unload the groceries. He knows he has a disease, but can't remember the name of it. I've brokem down in front of him, and he'll hold me when I cry....he's taking this better than I am. Of course, he realizes he's impaired from his former self, but he doesn't think he'll get any worse. In fact, I don't have any idea how much worse he'll be, and how fast. The docror was not very forthcoming...very strange.He doesn't have a will, living or otherwise, and I don't yet have power of attorney. He has a SS check, and about another couple of hundred of investment income per month. He and my Mom didn't save very much, but their house is paid for, and I can maintain it fine on my salary. He is really my stepfather, but we've had him for 40 years, so he's my Dad. I have a brother, who never had a relatioonship with him, and will call me just to ask how much the house is worth...can't wait for him to die to get his share. I have a sister who is getting divorced this week, has 3 teens, has her hands full herself. She lives near, but we haven't told her yet. We'll do that next week. Should I take him to a neurologist? Is there anything that can slow this down? What about Exelon....I've seen that drug here on the support site. Most of all, how fast is this? Can I make it to summer vacation (June 30) without a daily caregiver visiting? Donna Mido wrote: Welcome Joanne, I hope you will share a little more info with us. Then we can better answer your questions. You sound very tired. It seems he must be able to be alone as you work? Does he get his Social Security? You should not have to support you both. His money should be spent on his half or more of the expenses as you are taking care of him. Does he sleep? That was a problem I had with my Mom when she was alive. It is a hard long journey. Putting them in a nh becomes almost needed in most cases of the disease if you are caregiving alone. Not many of us who did it alone, didn't at the end need help and had to use a nh. You promised him without knowing what that meant at the time. You still are required to caregive even when it is in a nh. If he has LBD, he can't do his own decision making. Hope you will come on again and share. We are here to help. And most are willing to share their experiences. Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org New to LBD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Joanne, ( and all new comers) You are asking all the right questions and I am sure you will find lots of answers from others as well as me. I would immediately start working on the legal stuff, while the lawyer still knows it's what your Dad wants. It may take a bit to get it done, and time is not on your side as being predictable. Seeing a Neurologist is what many do. Others find a good MD who knows a bit about LBD. I had my Mom with me for 4 years and I really thought I had a year so so to go when she finally came to live with me. It was in '98 and I never did get much of a dx except Alzheimers or " Dementia' GO TO THE SITE FOLLOWING MY NAME: LBDA. This is the non profit that has gotten the word out to many people. There is a DVD about the disease that is done by the Association and had an MD explaining things. Much work has been done to get you a diagnosis. This DVD is available to you for free or a small donation to the LBDA if you chose. There are a few rules one of which you have learned already. 1-With Drugs, Start low and go slow. My Mom never could take drugs and while I had her at home, I would often try and then quit if she had a reaction. Even before that I would cut the dose and spread it out. Many people here will tell you Exelon is a good drug to try. And it has helped some. 2- If you start or stop drugs, do them one at a time. 3- He needs to get his paper work in order now. As if there were no tomorrow. 4- He thinks he can still drive. If he or someone gets hurt because he is at a point of " not remembering " which is gas or brake, it would be unfortunate even in a small community. 5- In the LBDA website there is lots of info about " stuff " including others experiences with this disease. There is also info available at the Yahoo site. At the bottom of any message it says if you want to visit the Yahoo site, click here. If you get the digest, that info is at the bottom of the digest. There are photos to be viewed and lots of other info people have put into the site. Hope this helps some. As a lone caregiver, I always had people who would help me if I came here and asked. Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org Re: New to LBD Quote Link to comment Share on other sites More sharing options...
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