Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 We're so happy you came back!! Hi listers I was on this list before but came off because I was on too many lists, I took a break from lists for a while. But this is a good list lots of information. Dottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Tell your spouse not to be so negative. My psa was 5.2, gleason 3+3, age 52, had radical Davinci prostatectomy. 1% of total prostate involved in gleason 6. Now 3 1/2 weeks post op, just about normal. Surgery was not so bad. charlie I am a new member. My spouse was diagnosed with PCa about 2 1/2 months ago. Prior to that his PSA had been rising for over a year, during which time he was seeing urologist. PSA now 3.94, Gleason 7, non palpable and (so far) unilateral. Today he has second biopsy on the cancer free side to double check. He is 57 yo. He is very negative about the outcome. I directed him to YANA site and he will make use of that. If cancer is unilateral he will probably go with Targeted (or Focal) cryoablation. If bilateral- ??. I am pleased to have found this group and know it will offer much support and information in months to come, as will YANA. Thanks, Terry!I have many questions and will ask them as is appropriate, but mostly I will absorb from all your experiences.Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Charlie: That's encouraging. psa 4.0, 3+3, currently expectant waiting. Diag at 3.9 in 10/05 age now 44. Still sacred of overtreating. Da Vinci sounds promising. Does it guarantee getting it up any time soon? thanks for sharing such optimism.. Wilkes wrote: Tell your spouse not to be so negative. My psa was 5.2, gleason 3+3, age 52, had radical Davinci prostatectomy. 1% of total prostate involved in gleason 6. Now 3 1/2 weeks post op, just about normal. Surgery was not so bad. charlie On 6/26/07, brandyagain <brandyagain> wrote: I am a new member. My spouse was diagnosed with PCa about 2 1/2 months ago. Prior to that his PSA had been rising for over a year, during which time he was seeing urologist. PSA now 3.94, Gleason 7, non palpable and (so far) unilateral. Today he has second biopsy on the cancer free side to double check. He is 57 yo. He is very negative about the outcome. I directed him to YANA site and he will make use of that. If cancer is unilateral he will probably go with Targeted (or Focal) cryoablation. If bilateral- ??. I am pleased to have found this group and know it will offer much support and information in months to come, as will YANA. Thanks, Terry!I have many questions and will ask them as is appropriate, but mostly I will absorb from all your experiences.Carol Sucker-punch spam with award-winning protection. Try the free Yahoo! Mail Beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Hey Carol: The last thing your husband needs to be is negative. There are many many that would be happy to have his stats! His cancer is beatable! Look upon it as an opportunity to change perhaps diet, lifestyle and to develop a positive outlook! Prostate cancer changed my life, and for the better! Every day is a joy to be experienced! Terry's YANA Mentor's Experiences are highly recommended; spend whatever time it takes to study the different choices. Where are you located? Who is the cryosurgeon, and how did you decide on that? Is the Gleason 4+3 or 3+4? Keep us posted and please do not hesitate to ask questions, there are NONE too dumb! Fuller > > I am a new member. My spouse was diagnosed with PCa about 2 1/2 > months ago. Prior to that his PSA had been rising for over a year, > during which time he was seeing urologist. PSA now 3.94, Gleason 7, > non palpable and (so far) unilateral. Today he has second biopsy on > the cancer free side to double check. > > He is 57 yo. He is very negative about the outcome. I directed him > to YANA site and he will make use of that. If cancer is unilateral he > will probably go with Targeted (or Focal) cryoablation. If bilateral- > ??. > > I am pleased to have found this group and know it will offer much > support and information in months to come, as will YANA. Thanks, > Terry! > > I have many questions and will ask them as is appropriate, but mostly > I will absorb from all your experiences. > > Carol > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Kojo: Be aware, in this thing called prostate cancer, there ARE NO guarantees! Fuller -- In ProstateCancerSupport , Kojo Dankwa wrote: > > Charlie: > > That's encouraging. psa 4.0, 3+3, currently expectant waiting. Diag at 3.9 in 10/05 age now 44. Still sacred of overtreating. Da Vinci sounds promising. Does it guarantee getting it up any time soon? > > thanks for sharing such optimism.. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Thanks Fuller..Good thoughtFuller wrote: Kojo:Be aware, in this thing called prostate cancer, there ARE NO guarantees!Fuller-- In ProstateCancerSupport , Kojo Dankwa wrote:>> Charlie:> > That's encouraging. psa 4.0, 3+3, currently expectant waiting.Diag at 3.9 in 10/05 age now 44. Still sacred of overtreating. DaVinci sounds promising. Does it guarantee getting it up any time soon?> > thanks for sharing such optimism..> Ready for the edge of your seat? Check out tonight's top picks on Yahoo! TV. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Hi Carol - Welcome to the group. It's very understandable that your husband is feeling negative right now, but I assure you that the more he participates in this group and others, the more he will realize that PCa can be very treatable especially when it is caught early. If he does that, his attitude should improve. He also needs your support now more than ever. I am a 48 year old PCa patient (you aren't considered a survivor until you are cancer-free for 5 years) and my life is very good. There are many treatment options out there and most will agree that they all compare equally in their ability to treat PCa. What I recommend is that you both look at all of them and choose the treatment that you both feel most comfortable with. Side-effects differ with all of the treatments and side-effects differ with all people, so that must be taken into consideration. Perhaps the most frustrating thing about this disease IS the fact that there are so many uncertainties. But my philosophy is to look at all your options, choose one, then don't look back. Once you choose an option it is MOST IMPORTANT that you pick a doctor who is experienced in that type of treatment. I found the best way to find out how good a doctor is, is to ask around. If you know someone in the medical field, ask them who they recommend and why. I asked several people that question and the same doctor came to the top of the list each time. I scheduled an appointment with him and I was armed with a list of questions and concerns that I had. To make a long story shorter, I had about the best experience one could ask for in my PCa treatment, and it was because I got focused, I got educated, I made a personal decision on treatment, I chose my doctor, and through it all I chose to have a good attitude. The common thread here is take control of your life and don't allow the doctors to.... because they will try. If you do these things your outcome will be greatly improved as well. Best of luck to you both and keep in touch.Mick brandyagain wrote: I am a new member. My spouse was diagnosed with PCa about 2 1/2 months ago. Prior to that his PSA had been rising for over a year, during which time he was seeing urologist. PSA now 3.94, Gleason 7, non palpable and (so far) unilateral. Today he has second biopsy on the cancer free side to double check. He is 57 yo. He is very negative about the outcome. I directed him to YANA site and he will make use of that. If cancer is unilateral he will probably go with Targeted (or Focal) cryoablation. If bilateral- ??. I am pleased to have found this group and know it will offer much support and information in months to come, as will YANA. Thanks, Terry! I have many questions and will ask them as is appropriate, but mostly I will absorb from all your experiences. Carol God rewards those that keep on keeping on. Stay positive. Think positive. Pray positive. And talk positive. Shape Yahoo! in your own image. Join our Network Research Panel today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Hi! Thanks for the encouraging post--- We are in Florida, West Coast and the doctor is La. He has been in practice a long time. Has been doing cryoablation for about 4 years with a good success rate but obviously no long term statistics. Maybe he is negative because he has had cancer before. (not prostate, of course) We have both been researching treatment protocols for several months now. Reading actual experiences and physical outcomes on YANA have been most helpful of all. His biopsy this morning went well but he has more pain than with the first one--who wouldn't with 12 probes inserted in a space the size of a walnut half?? Carol ProstateCancerSupport , " Fuller " wrote: > > Hey Carol: > > The last thing your husband needs to be is negative. There are many > many that would be happy to have his stats! His cancer is beatable! > > Look upon it as an opportunity to change perhaps diet, lifestyle and > to develop a positive outlook! Prostate cancer changed my life, and > for the better! Every day is a joy to be experienced! > > Terry's YANA Mentor's Experiences are highly recommended; spend > whatever time it takes to study the different choices. > > Where are you located? Who is the cryosurgeon, and how did you decide > on that? Is the Gleason 4+3 or 3+4? > > Keep us posted and please do not hesitate to ask questions, there are > NONE too dumb! > > Fuller > > > > > > > > I am a new member. My spouse was diagnosed with PCa about 2 1/2 > > months ago. Prior to that his PSA had been rising for over a year, > > during which time he was seeing urologist. PSA now 3.94, Gleason 7, > > non palpable and (so far) unilateral. Today he has second biopsy on > > the cancer free side to double check. > > > > He is 57 yo. He is very negative about the outcome. I directed him > > to YANA site and he will make use of that. If cancer is unilateral he > > will probably go with Targeted (or Focal) cryoablation. If bilateral- > > ??. > > > > I am pleased to have found this group and know it will offer much > > support and information in months to come, as will YANA. Thanks, > > Terry! > > > > I have many questions and will ask them as is appropriate, but mostly > > I will absorb from all your experiences. > > > > Carol > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 No guarantees, but I can feel increasing spontaneous early morning engorgement. I sort of watched my psa slowly rise from 4 up to 5. When it hit 5, I couldn't stand waiting anymore. I understand the younger you are, the more likely get better recovery.Charlie Charlie: That's encouraging. psa 4.0, 3+3, currently expectant waiting. Diag at 3.9 in 10/05 age now 44. Still sacred of overtreating. Da Vinci sounds promising. Does it guarantee getting it up any time soon? thanks for sharing such optimism.. Wilkes wrote: Tell your spouse not to be so negative. My psa was 5.2, gleason 3+3, age 52, had radical Davinci prostatectomy. 1% of total prostate involved in gleason 6. Now 3 1/2 weeks post op, just about normal. Surgery was not so bad. charlie On 6/26/07, brandyagain <brandyagain@... > wrote: I am a new member. My spouse was diagnosed with PCa about 2 1/2 months ago. Prior to that his PSA had been rising for over a year, during which time he was seeing urologist. PSA now 3.94, Gleason 7, non palpable and (so far) unilateral. Today he has second biopsy on the cancer free side to double check. He is 57 yo. He is very negative about the outcome. I directed him to YANA site and he will make use of that. If cancer is unilateral he will probably go with Targeted (or Focal) cryoablation. If bilateral- ??. I am pleased to have found this group and know it will offer much support and information in months to come, as will YANA. Thanks, Terry!I have many questions and will ask them as is appropriate, but mostly I will absorb from all your experiences.Carol Sucker-punch spam with award-winning protection.Try the free Yahoo! Mail Beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Hi Carol, Consider your husband lucky. My husband had a PSA of 3.8, and the doctor did a DRA. The exam felt normal, so the doctor was not concerned about the 3.8 PSA. He told my husband as long as the PSA was under 4.0 everything was ok. How wrong was he. My husband's next PSA, drawn by another doctor a year later was 4.2. Once again the doctor did a DRA, felt normal. But this doctor sent him to an Urologist. A biopsy was taken. He showed a gleason 4+4 = total 8, also bone scan showed cancer was event in his lower back. He has complete 15 sessions of radiation, and is considered a stage 4 cancer. So a PSA under 4.0 is not always safe. The Urologist, told us any PSA over 2.5 is suspect. So your husband's doctor was smart to have him go to an urologist. I am sure that if my husband, had seen the urologist a year sooner, the cancer would have been caught before it spread....Rita Lee Hi I am a new member. My spouse was diagnosed with PCa about 2 1/2 months ago. Prior to that his PSA had been rising for over a year, during which time he was seeing urologist. PSA now 3.94, Gleason 7, non palpable and (so far) unilateral. Today he has second biopsy on the cancer free side to double check. He is 57 yo. He is very negative about the outcome. I directed him to YANA site and he will make use of that. If cancer is unilateral he will probably go with Targeted (or Focal) cryoablation. If bilateral-??. I am pleased to have found this group and know it will offer much support and information in months to come, as will YANA. Thanks, Terry!I have many questions and will ask them as is appropriate, but mostly I will absorb from all your experiences.Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 I feel the need to repeat this from time to time because I think it is important. I was 47 at the time of my diagnosis with a PSA of 1 (yes you heard that right), and a Gleason Score of 3+3=6. Post op pathology report upgraded me to 3+4=7. Mick Rita and Bill wrote: Hi Carol, Consider your husband lucky. My husband had a PSA of 3.8, and the doctor did a DRA. The exam felt normal, so the doctor was not concerned about the 3.8 PSA. He told my husband as long as the PSA was under 4.0 everything was ok. How wrong was he. My husband's next PSA, drawn by another doctor a year later was 4.2. Once again the doctor did a DRA, felt normal. But this doctor sent him to an Urologist. A biopsy was taken. He showed a gleason 4+4 = total 8, also bone scan showed cancer was event in his lower back. He has complete 15 sessions of radiation, and is considered a stage 4 cancer. So a PSA under 4.0 is not always safe. The Urologist, told us any PSA over 2.5 is suspect. So your husband's doctor was smart to have him go to an urologist. I am sure that if my husband, had seen the urologist a year sooner, the cancer would have been caught before it spread....Rita Lee Hi I am a new member. My spouse was diagnosed with PCa about 2 1/2 months ago. Prior to that his PSA had been rising for over a year, during which time he was seeing urologist. PSA now 3.94, Gleason 7, non palpable and (so far) unilateral. Today he has second biopsy on the cancer free side to double check. He is 57 yo. He is very negative about the outcome. I directed him to YANA site and he will make use of that. If cancer is unilateral he will probably go with Targeted (or Focal) cryoablation. If bilateral-??. I am pleased to have found this group and know it will offer much support and information in months to come, as will YANA. Thanks, Terry!I have many questions and will ask them as is appropriate, but mostly I will absorb from all your experiences.Carol God rewards those that keep on keeping on. Stay positive. Think positive. Pray positive. And talk positive. Get the Yahoo! toolbar and be alerted to new email wherever you're surfing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Amazing, Mick. PSA of 1!I'm 49, and although my PSA was higher (3.0), my biopsy was a Gleason 6 and the DRE was negative. After my robotic surgery the final pathology report, like yours, upgraded the Gleason to a 7 (3+4). The cancer was multifocal, largest tumor being 7mm. However, the surgical margins were negative. I had blood taken today and should have the results of my first post op PSA test results in a week.Mick Northrop wrote: I feel the need to repeat this from time to time because I think it is important. I was 47 at the time of my diagnosis with a PSA of 1 (yes you heard that right), and a Gleason Score of 3+3=6. Post op pathology report upgraded me to 3+4=7. Mick Rita and Bill <rbmoyearthlink (DOT) net> wrote: Hi Carol, Consider your husband lucky. My husband had a PSA of 3.8, and the doctor did a DRA. The exam felt normal, so the doctor was not concerned about the 3.8 PSA. He told my husband as long as the PSA was under 4.0 everything was ok. How wrong was he. My husband's next PSA, drawn by another doctor a year later was 4.2. Once again the doctor did a DRA, felt normal. But this doctor sent him to an Urologist. A biopsy was taken. He showed a gleason 4+4 = total 8, also bone scan showed cancer was event in his lower back. He has complete 15 sessions of radiation, and is considered a stage 4 cancer. So a PSA under 4.0 is not always safe. The Urologist, told us any PSA over 2.5 is suspect. So your husband's doctor was smart to have him go to an urologist. I am sure that if my husband, had seen the urologist a year sooner, the cancer would have been caught before it spread....Rita Lee Hi I am a new member. My spouse was diagnosed with PCa about 2 1/2 months ago. Prior to that his PSA had been rising for over a year, during which time he was seeing urologist. PSA now 3.94, Gleason 7, non palpable and (so far) unilateral. Today he has second biopsy on the cancer free side to double check. He is 57 yo. He is very negative about the outcome. I directed him to YANA site and he will make use of that. If cancer is unilateral he will probably go with Targeted (or Focal) cryoablation. If bilateral-??. I am pleased to have found this group and know it will offer much support and information in months to come, as will YANA. Thanks, Terry!I have many questions and will ask them as is appropriate, but mostly I will absorb from all your experiences.Carol God rewards those that keep on keeping on. Stay positive. Think positive. Pray positive. And talk positive. Get the Yahoo! toolbar and be alerted to new email wherever you're surfing. Sucker-punch spam with award-winning protection. Try the free Yahoo! Mail Beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Well Jack it just goes to show how this beast can get away from some guys. Who knows how bad I would have gotten if i would have waited for a PSA of 4? Sure makes you stop and think. For me it makes me stop and count my blessings. Mick Jack Long wrote: Amazing, Mick. PSA of 1!I'm 49, and although my PSA was higher (3.0), my biopsy was a Gleason 6 and the DRE was negative. After my robotic surgery the final pathology report, like yours, upgraded the Gleason to a 7 (3+4). The cancer was multifocal, largest tumor being 7mm. However, the surgical margins were negative. I had blood taken today and should have the results of my first post op PSA test results in a week.Mick Northrop <mnorthrop1977> wrote: I feel the need to repeat this from time to time because I think it is important. I was 47 at the time of my diagnosis with a PSA of 1 (yes you heard that right), and a Gleason Score of 3+3=6. Post op pathology report upgraded me to 3+4=7. Mick Rita and Bill <rbmoyearthlink (DOT) net> wrote: Hi Carol, Consider your husband lucky. My husband had a PSA of 3.8, and the doctor did a DRA. The exam felt normal, so the doctor was not concerned about the 3.8 PSA. He told my husband as long as the PSA was under 4.0 everything was ok. How wrong was he. My husband's next PSA, drawn by another doctor a year later was 4.2. Once again the doctor did a DRA, felt normal. But this doctor sent him to an Urologist. A biopsy was taken. He showed a gleason 4+4 = total 8, also bone scan showed cancer was event in his lower back. He has complete 15 sessions of radiation, and is considered a stage 4 cancer. So a PSA under 4.0 is not always safe. The Urologist, told us any PSA over 2.5 is suspect. So your husband's doctor was smart to have him go to an urologist. I am sure that if my husband, had seen the urologist a year sooner, the cancer would have been caught before it spread....Rita Lee Hi I am a new member. My spouse was diagnosed with PCa about 2 1/2 months ago. Prior to that his PSA had been rising for over a year, during which time he was seeing urologist. PSA now 3.94, Gleason 7, non palpable and (so far) unilateral. Today he has second biopsy on the cancer free side to double check. He is 57 yo. He is very negative about the outcome. I directed him to YANA site and he will make use of that. If cancer is unilateral he will probably go with Targeted (or Focal) cryoablation. If bilateral-??. I am pleased to have found this group and know it will offer much support and information in months to come, as will YANA. Thanks, Terry!I have many questions and will ask them as is appropriate, but mostly I will absorb from all your experiences.Carol God rewards those that keep on keeping on. Stay positive. Think positive. Pray positive. And talk positive. Get the Yahoo! toolbar and be alerted to new email wherever you're surfing. Sucker-punch spam with award-winning protection.Try the free Yahoo! Mail Beta. God rewards those that keep on keeping on. Stay positive. Think positive. Pray positive. And talk positive. Don't be flakey. Get Yahoo! Mail for Mobile and always stay connected to friends. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Carol: Proton Beam Therapy is another viable option,with minimal to no side effects, a longer history than cryotherapy,and no loss of sexual capability. It is accepted by Medicare and most insurance. I presume that the focal cryo you are considering is to attempt to spare the nerves. Dr. Rich Brunelle in Tampa trained with Dr Onik, who is the guy with the great reputation for focal cryoablation, but Onik accepts no insurance, not even Medicare. But why not go for a consult to ville Shands new Proton Center? (I would actually rather you went to Loma University Medical Center in California, but I realize that is too much to ask.) If you can't spare the nine weeks that the treatment takes, then that settles that. You can check it out online here: http://www.floridaproton.org/ And also go the the www.protonbob.com site and read the testimonials. Fuller > > Hi! > > Thanks for the encouraging post--- > > We are in Florida, West Coast and the doctor is La. He has been > in practice a long time. Has been doing cryoablation for about 4 > years with a good success rate but obviously no long term > statistics. > > Maybe he is negative because he has had cancer before. (not > prostate, of course) > > We have both been researching treatment protocols for several months > now. Reading actual experiences and physical outcomes on YANA have > been most helpful of all. > > His biopsy this morning went well but he has more pain than with the > first one--who wouldn't with 12 probes inserted in a space the size > of a walnut half?? > > Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Myspouse works full time-has great concerns about the time for recovery since his job will only give him 4 weeks for sick time. This is an issue, as well as time off to visit doctors. Unfortunately he works with mostly younger men who don't understand illness at all! Carol > > > > Hi! > > > > Thanks for the encouraging post--- > > > > We are in Florida, West Coast and the doctor is La. He has been > > in practice a long time. Has been doing cryoablation for about 4 > > years with a good success rate but obviously no long term > > statistics. > > > > Maybe he is negative because he has had cancer before. (not > > prostate, of course) > > > > We have both been researching treatment protocols for several months > > now. Reading actual experiences and physical outcomes on YANA have > > been most helpful of all. > > > > His biopsy this morning went well but he has more pain than with the > > first one--who wouldn't with 12 probes inserted in a space the size > > of a walnut half?? > > > > Carol > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2010 Report Share Posted February 13, 2010 Marilyn, Welcome to the group. You have had a real bout of Guardianships. What you describe sounds very much like what we have all gone through. The main message is be so careful with the drugs. Do them one at a time a start low and go slow so you can tell which ones aren't for him. Not everyone can take the drugs. There is as " welcome message " that has links and will take you to the yahoo site and give you tons of info if you click on the links. It will come out again. You can go back to last week at Yahoo and find the message easily with the " search " box. You will find a few good books that will help you find your way too.. I think you are right and if he needs a guardian, he would need help at Assisted Living. Mostly he would need 24 hour care if he can't be responsible for himself. And it isn't safe for him to live alone if he is having that much trouble anyway. You are probably looking for a Nursing Home with a locked door. Hope we can help you find your way through the maze. The saying is " he can't come into your world, you must go into his. " So ignore all the " bad " stuff he says and let him know you love him and just want him safe. Scare, at the turmoil in his mind, is very difficult for him too. Hugs, Donna R Hi My name is Marilyn and I am new to the group. I have been the POA and Guardian of my mother and aunt who had dementia, my oldest sister who had terminal colon cancer and brother-in-law while in ICU on vent. For the past 15 months I have been helping my brother live independently after being diagnoses with dementia by his GP and OT. I have a Geriatric Evaluation set up for him early March. It took 4 months to get the appointment. He has recently cut me off of contact because he feels when things are missing, misplaces or moved in his apartment it is me doing so. He speaks of these things as him actually seeing it happen. He feels he has not failed the OT test, I set him up to look goofy and told lies about his abilities. When he is not in these paranoid type episodes he is the loving sweet brother I have always remembered. When he is in the episodes he is sharp tongued and says hurtful and hateful things. Logic has to place for him at times like this. His body language, voice and personality actually change. Fortunately he still likes and trust my husband so he is able to visit and make sure things are going well and take him grocery shopping. The other senior residents are wonderful with him and keep an eye out just to make sure he is OK. The building manager is unsure how long he can continue to live there without my involvement. I am in the process of checking out Assisted Living facilities and also meeting with a lawyer who specializes in Guardianship. I want to have as much information in hand before it is needed. With the new laws passed he would not be eligible for Assisted Living if I had the medical/personal POA activated or Guardianship in place. Yet that may be the only way I will legally be able to keep him safe and healthy. Right now I am taking it one day at a time, gathering information, finding support in this group and doing a lot of praying. Thank You for your time Marilyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2010 Report Share Posted February 13, 2010 marilyn,  my daddy was very ugly to me, accusing me of stealing from him, he was also sexually inappropriate in comments, he had no clue during this episodes of what he was say8ing and how hurtful it yet my finace at taht time and later my hubby, daddy completey adored adn trusted. we lived with daddy until his fall in may 2005. it was so hard to remember that ist wasw the lbd. try to remember it is just the lbd and that he does love you very much. also remembger teh saying we hurt the ones we love the most, hurt the most. sad but true esp in lbd.  keep smiling and take care hugs. sharon Daughter of Leonard whom was diagnosed in May 2004 and died of complicatons *blood pressure started dropping and wouldn't recover* on Sept 25, 2005. He had bad case of Dr Jekyl/Mr Hyde scenarios. He was showing hallucinations and falling issues since prior to 1994. We moved in to take care of him Jan 19, 2003 and still live in his house. And in feb 2009, i have been diagonosed with 99% probability of lbd. Subject: Re: Hi To: LBDcaregivers Date: Saturday, February 13, 2010, 1:42 PM  Marilyn, Welcome to the group. You have had a real bout of Guardianships. What you describe sounds very much like what we have all gone through. The main message is be so careful with the drugs. Do them one at a time a start low and go slow so you can tell which ones aren't for him. Not everyone can take the drugs. There is as " welcome message " that has links and will take you to the yahoo site and give you tons of info if you click on the links. It will come out again. You can go back to last week at Yahoo and find the message easily with the " search " box. You will find a few good books that will help you find your way too.. I think you are right and if he needs a guardian, he would need help at Assisted Living. Mostly he would need 24 hour care if he can't be responsible for himself. And it isn't safe for him to live alone if he is having that much trouble anyway. You are probably looking for a Nursing Home with a locked door. Hope we can help you find your way through the maze. The saying is " he can't come into your world, you must go into his. " So ignore all the " bad " stuff he says and let him know you love him and just want him safe. Scare, at the turmoil in his mind, is very difficult for him too. Hugs, Donna R Hi My name is Marilyn and I am new to the group. I have been the POA and Guardian of my mother and aunt who had dementia, my oldest sister who had terminal colon cancer and brother-in-law while in ICU on vent. For the past 15 months I have been helping my brother live independently after being diagnoses with dementia by his GP and OT. I have a Geriatric Evaluation set up for him early March. It took 4 months to get the appointment. He has recently cut me off of contact because he feels when things are missing, misplaces or moved in his apartment it is me doing so. He speaks of these things as him actually seeing it happen. He feels he has not failed the OT test, I set him up to look goofy and told lies about his abilities. When he is not in these paranoid type episodes he is the loving sweet brother I have always remembered. When he is in the episodes he is sharp tongued and says hurtful and hateful things. Logic has to place for him at times like this. His body language, voice and personality actually change. Fortunately he still likes and trust my husband so he is able to visit and make sure things are going well and take him grocery shopping. The other senior residents are wonderful with him and keep an eye out just to make sure he is OK. The building manager is unsure how long he can continue to live there without my involvement. I am in the process of checking out Assisted Living facilities and also meeting with a lawyer who specializes in Guardianship. I want to have as much information in hand before it is needed. With the new laws passed he would not be eligible for Assisted Living if I had the medical/personal POA activated or Guardianship in place. Yet that may be the only way I will legally be able to keep him safe and healthy. Right now I am taking it one day at a time, gathering information, finding support in this group and doing a lot of praying. Thank You for your time Marilyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2010 Report Share Posted February 14, 2010 Marilyn, A big warm Texas welcome! You have had your hands more than full for along time it appears. My hat is off to you. You are in the correct place for any help we can give. So another welcome, and Love with a smile, Imogene Caregiver for my true Texas Gentleman Husband, who was diagnosed with AD in '05, but correctly diagnosed with LBD in March '06. A happy personality is contagious. Infect someone today Yours Truly In a message dated 2/13/2010 3:21:39 P.M. Central Standard Time, marilynkcgw@... writes: My name is Marilyn and I am new to the group. I have been the POA and Guardian of my mother and aunt who had dementia, my oldest sister who had terminal colon cancer and brother-in-law while in ICU on vent. For the past 15 months I have been helping my brother live independently after being diagnoses with dementia by his GP and OT. I have a Geriatric Evaluation set up for him early March. It took 4 months to get the appointment. He has recently cut me off of contact because he feels when things are missing, misplaces or moved in his apartment it is me doing so. He speaks of these things as him actually seeing it happen. He feels he has not failed the OT test, I set him up to look goofy and told lies about his abilities. When he is not in these paranoid type episodes he is the loving sweet brother I have always remembered. When he is in the episodes he is sharp tongued and says hurtful and hateful things. Logic has to place for him at times like this. His body language, voice and personality actually change. Fortunately he still likes and trust my husband so he is able to visit and make sure things are going well and take him grocery shopping. The other senior residents are wonderful with him and keep an eye out just to make sure he is OK. The building manager is unsure how long he can continue to live there without my involvement. I am in the process of checking out Assisted Living facilities and also meeting with a lawyer who specializes in Guardianship. I want to have as much information in hand before it is needed. With the new laws passed he would not be eligible for Assisted Living if I had the medical/personal POA activated or Guardianship in place. Yet that may be the only way I will legally be able to keep him safe and healthy. Right now I am taking it one day at a time, gathering information, finding support in this group and doing a lot of praying. Thank You for your time Marilyn ------------------------------------ Quote Link to comment Share on other sites More sharing options...
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