Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 My mom has Lewy body and is very sick and its breaking my heart. I look forward to learning and hopefully helping other people with this terrible disease. Best Trista --------------------------------- Stay in the know. Pulse on the new Yahoo.com. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2006 Report Share Posted October 26, 2006 Trista, Welcome to the love and help you will receive from this group. Also, we are looking for anything you can share that may help us. I understand completely how it is breaking your heart, because mine is in the same shape. So, I just take comfort from everyone here, and my family. Still, I do feel alone sometimes, and that is when it is time for me to cry, after which I pick myself up and keep on keeping on. I am not normally a weepy person, but this can drain a person to that point. We all try to remember to take care of ourselves first. Also, Get all legal paper work in order early on. If you haven't already, then I suggest you see your lawyer, and do so, if your mother is still able to understand enough, and to write her name. As for myself, I had previous papers which I used the wording, and found papers from my Bank, to do the job of Wills, Power of Attorney, Durable Power of Attorney, Instructions to Doctors, etc., the latter of which I received from our Hospital. I made sure they all complied with Texas State Laws. I have to go to the Dentist in a little while, so I will run for now, but you will see me on here a lot, as I want to glean all the understanding I can get from this List. I think our List Moderator is the greatest. Again, welcome to a great second home. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with Parkinsonism. In a message dated 10/26/2006 12:00:39 AM Central Daylight Time, mom_my_bestfriend@... writes: My mom has Lewy body and is very sick and its breaking my heart. I look forward to learning and hopefully helping other people with this terrible disease. Best Trista Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2006 Report Share Posted October 26, 2006 Thank you Imogene for your welcome. This is all heart breaking. My mother is my best friend, my mom, my life. I am 43. I did the durable power of attorney and health care directive last year. I just got her approved for Medicaid. It is all so confusing. There is so much to learn. I have been footing the bills untill I found out about medicaid. My mom was a business women and started to show dementia signs at 58. By 60 she was a mess. She is now 67. She was diagnosed with parkinsons but didnt have the tremor. She is stiff like. I just got back from taking her to a long stint at the Mayo clinic. They knew nothing, nothing at all except that she had it. The Doctors referred me to a website. I have had to learn all this on my own, and being I am an only child (I have a brother who his retarded) Its all up to me. How long is life expectancy (just generally speaking I know everyone is " different " ). I read 5-7 years, and 12 years? She isn't far off from being bed ridden. Her mind is ok some days and somedays not. She had hallucinations upto a year ago. She all of a sudden took a turn for the worst. How about natural therapy? Aromatherapy? Vitamins??? Dos anyone have advice? That lewy body journal website broke my heart. Is this the future? wow. --------------------------------- Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2006 Report Share Posted October 26, 2006 > > > Trista, Welcome to the love and help you will receive from this group. Also, > we are looking for anything you can share that may help us. > > I understand completely how it is breaking your heart, because mine is in > the same shape. So, I just take comfort from everyone here, and my family. > Still, I do feel alone sometimes, and that is when it is time for me to cry, > after which I pick myself up and keep on keeping on. I am not normally a weepy > person, but this can drain a person to that point. > > We all try to remember to take care of ourselves first. Also, Get all legal > paper work in order early on. If you haven't already, then I suggest you see > your lawyer, and do so, if your mother is still able to understand enough, > and to write her name. > > As for myself, I had previous papers which I used the wording, and found > papers from my Bank, to do the job of Wills, Power of Attorney, Durable Power of > Attorney, Instructions to Doctors, etc., the latter of which I received from > our Hospital. I made sure they all complied with Texas State Laws. > > I have to go to the Dentist in a little while, so I will run for now, but > you will see me on here a lot, as I want to glean all the understanding I can > get from this List. I think our List Moderator is the greatest. > > Again, welcome to a great second home. > > > Imogene > Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with > Parkinsonism. > > > > > > > > In a message dated 10/26/2006 12:00:39 AM Central Daylight Time, > mom_my_bestfriend@... writes: > > > > > My mom has Lewy body and is very sick and its breaking my heart. I look > forward to learning and hopefully helping other people with this terrible disease. > > Best Trista > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 HI Trista, My mom was dx's at around 67 too (I'm also 43). You ask about the length of this illness and I can tell you that my mom is now in her seventh year of showing symptoms of either AD or PD. Mom is currently bed-ridden - she went from taking meds and walking with assistance to completely bid-ridden, no longer speaking or opening her eyes in about 8 months. This isn't the case with everyone. There are LO (Loved One's) on this site who don't slide so quickly. I do hope that you have lots of supportive extended family members who are able to help you. Have you checked into all the Elder services in your area? It is true that as this disease progresses that it becomes hard to be the caregiver and you do need time for yourself to prevent caregiver burn-out (I know all about that one!) Courage Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 You are better off for looking at reality just as you are doing, and for finding answers. I too didn't know beans about any of this. But, a very nice person directed me to this WEB site as well as the Alzheimer's site. _mj2@..._ (mailto:mj2@...) . I believe that is the address I used to sign on. If not we'll locate another for you. Caregiving for anyone is very similar. Your mother may have Alzheimer's (AD) mixed with Lewy Body Dementia (LBD) and Parkinsonism. I have gleaned a lot of knowledge in just a few months. Still, I have a very long way to go. Find a good Geriatric/Psychiatrist. They know more about these types of illnesses than anyone. They can properly diagnose your mother, and administer the appropriate medications. Other therapies may feel good and do a little good in the vitamin department, but for the most part you will learn right here some of the things you can do to better care for your mother. Don't be afraid to ask any question, anything at all. That is how we all learn from each other, and Doctor's learn from us. LBD is something few know about, and this is the place to be in order to learn. It may take a while to soak it all in, but you will. And, the answers don't always come at the drop of a sentence. We may have to wait, or if someone missed your sentence, then write it again in a day or two. It'll get answered. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with Parkinsonism. In a message dated 10/26/2006 11:34:04 PM Central Daylight Time, mom_my_bestfriend@... writes: Thank you Imogene for your welcome. This is all heart breaking. My mother is my best friend, my mom, my life. I am 43. I did the durable power of attorney and health care directive last year. I just got her approved for Medicaid. It is all so confusing. There is so much to learn. I have been footing the bills untill I found out about medicaid. My mom was a business women and started to show dementia signs at 58. By 60 she was a mess. She is now 67. She was diagnosed with parkinsons but didnt have the tremor. She is stiff like. I just got back from taking her to a long stint at the Mayo clinic. They knew nothing, nothing at all except that she had it. The Doctors referred me to a website. I have had to learn all this on my own, and being I am an only child (I have a brother who his retarded) Its all up to me. How long is life expectancy (just generally speaking I know everyone is " different " )Thank you Imogene for your welcome. This is all heart breaking. My mother is my bes is ok some days and somedays not. She had hallucinations upto a year ago. She all of a sudden took a turn for the worst. How about natural therapy? Aromatherapy? Vitamins??? Dos anyone have advice? That lewy body journal website broke my heart. Is this the future? wow. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 Trista, Have you gotten your answers yet? I am sorry it is so hard, but that is all the more reason we stick together, to give support, and learn. I am surprised that Mayo Clinic didn't have an answer for your mother. Was she too out of it to answer their questions? Did they do any testing, or were they unable because of her inability? That may be the reason they couldn't give you a definitive answer. Were they also unable to prescribe medications because of not being sure what she had? Someone may have mentioned it, but LBD patients cannot take some of the same medicines that Alzheimer's (AD) patients can take. Those medicines can send the LBD patient into a down hill spiral never to recover. That may be the reason the doctors couldn't help you a lot. Exactly what did they do? What medications did they prescribe? Did they tell you it was LBD? Is that why they directed you to the LBD site? We wish you to be able to give the best care possible, for you and your mother, in as easy a manner as possible. That possible? (smile) well we try. With much love and tenderness, Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with Parkinsonism. In a message dated 10/26/2006 11:34:04 PM Central Daylight Time, mom_my_bestfriend@... writes: Thank you Imogene for your welcome. This is all heart breaking. My mother is my best friend, my mom, my life. I am 43. I did the durable power of attorney and health care directive last year. I just got her approved for Medicaid. It is all so confusing. There is so much to learn. I have been footing the bills untill I found out about medicaid. My mom was a business women and started to show dementia signs at 58. By 60 she was a mess. She is now 67. She was diagnosed with parkinsons but didnt have the tremor. She is stiff like. I just got back from taking her to a long stint at the Mayo clinic. They knew nothing, nothing at all except that she had it. The Doctors referred me to a website. I have had to learn all this on my own, and being I am an only child (I have a brother who his retarded) Its all up to me. How long is life expectancy (just generally speaking I know everyone is " different " )Thank you Imogene for your welcome. This is all heart breaking. My mother is my bes is ok some days and somedays not. She had hallucinations upto a year ago. She all of a sudden took a turn for the worst. How about natural therapy? Aromatherapy? Vitamins??? Dos anyone have advice? That lewy body journal website broke my heart. Is this the future? wow. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with Parkinsonism. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 Hello, Can I ask what is on this DVD? I just wonder if it would be of help to my family. Hugs, Patti > > Glad it came and it is useful. Yes, burn as many as you like and share them. It is helpful, I think. > > Donna R > > Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. > She was almost 89 when she died in '02. No dx other than mine. > > > Thank you! > > I received the DVD today. Thank you so much! I plan on burning several copies to give to my > family and my father's 2 doctors. > > Rhonda > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 patti , yes this would be a big help for your family , as the dvd, is 2 lbd doctors, discussing lbd and making people understand what might hlep, it is geared for caregivers!!!!!! i think you should get one and even the second one which has Q & A for dr ferman and a caregiver panel telling hteir stories as well, hugs sharon ---- Patti wrote: Hello, Can I ask what is on this DVD? I just wonder if it would be of help to my family. Hugs, Patti > > Glad it came and it is useful. Yes, burn as many as you like and share them. It is helpful, I think. > > Donna R > > Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. > She was almost 89 when she died in '02. No dx other than mine. > > > Thank you! > > I received the DVD today. Thank you so much! I plan on burning several copies to give to my > family and my father's 2 doctors. > > Rhonda > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 Patti I have copies of the DVD and will be glad to send you one. You can send me your address to my e-mail address and I will get one in the mail for you. Jacqui in So Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 Patti, Depending on where you live, Carol is in Florida and I am in MI. If you send your address to either one of us, you will get a DVD. (The second one isn't available yet.) This is a symposium that was presented last Feb. It was taped and we are trying to share it. If you send me an email with your home address, I will see that either Carol or I send you one that you can share with your family and other Professionals.. Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. Thank you! > > I received the DVD today. Thank you so much! I plan on burning several copies to give to my > family and my father's 2 doctors. > > Rhonda > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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