Guest guest Posted February 25, 2002 Report Share Posted February 25, 2002 In a message dated 2/25/02 8:31:07 PM Eastern Standard Time, catmandue1950@... writes: > So, that's my speal about certified diabetes educators. > > Hi , I saw a diabetes educator. The diet she gave me was working, but I wanted off meds, so I found what would work for me. Dec, 2000 my HbA1c was 7.3. It was Jan or early Feb, 2001 that my doctor told me I could stop taking the meds. When I went back in June for another HbA1c, it was 5.5. I am happy, I'm healthy and I'm enjoying life. Here I am 59 years old (young) and when my dog and I walked out to the mailbox (about a 15 minute walk out there and back) today, I was skipping and jumping like a kid. My educator is available anytime I need to see her, but I don't think I need her at the present time. Eunice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 One thing that I didn't know was available (and may not have been at the time of my diagnosis) was the cetified diabetes educators. Most doctors don't have the time, motivation, or desire to educate diabetics. Eat less and take your medicine is about their speed. But they are more than welcome to refer you to a CDE, usually associated with hospitals. Even if your insurance only pays part, or even none, it is well worth the price if you get a good basic diabetes education. An educator can teach you about several types of eating plans (counting carbohydrates, the exchange plan, the eat healthy and avoid fats and sugars), help teach about your medications and blood testing at home, when to call the doctor, sick day plans--pretty much everything you will need to know to make dealing with diabetes easier. Oh, it won't be a picnic, especially your first episode of hypoglycemia; but an educator can help you have a plan in place. Personally, my husband says I look just like my diabetic cat when she has one--she gazes off into space and keeps hitting doors and getting caught in corners. I give her syrup and protein, I take some form of sugar and protein. They can be frightening, but with a plan, less so. So, that's my speal about certified diabetes educators. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2009 Report Share Posted July 17, 2009 Welcome Jeni. You've come to the right place for support, caring, shared problems around caring for a loved one with LBD. Each of us has a different story but the similarities are there, such as the dementia getting much worse with the wrong general anaesthetic, with a uti. It's such a shame she wasn't diagnosed before the anaesthetic. Our los tend to be very sensitive to many meds. Is your mom taking a cognitive enhancer? It is difficult to know what comes next. She could plateau at this stage for a time or exhibit a slow but gradual decline. If she's on any meds that don't agree with LBD and that is changed, she could improve some. As for yelling and cursing, that really shouldn't have to happen if she is not hallucinating and is not in pain, is not on any " bad " meds. You should receive a list of meds to watch out for and if you would like to share what meds she is taking here there are very knowledgeable people aboard who will see any red flags. It's a journey we never asked to be a part of but the support here makes it easier. Gibsons BC Mother died Aug. 12, 2006 at age 92 after a 13 year decline from PDD. > > Hello, My mother (age 79) was diagnosed with LBD in April while in the hospital being treated for depression and eating disorders. First week in the hospital, (geriatric ward) well-known psychiatrist findings were all normal. Second week moved to the medical geriatric ward and the decision was made to remove her infected gallbladder in the hopes her ability to eat again would return. After the surgery mom became as the doctor described " totally demented " suggesting a feeding tube and a nursing home, in his opinion she was unable to return to her assisted living apartment. The sad truth was we could see for ourselves he was accurate. The question became, how did this happen? She walked into the hospital with the help of her walker 2 weeks ago, what was the cause of this demented state? Thankfully, she started showing small signs of improvement and we called in the psychiatrist for a second look. His findings this time caught us all off > guard. Lewy Body Dementia, probably heightened by her gallbladder surgery. Like so many of you, the Doctor gave me and my brothers a brief description of LBD and told us to google it. Three months later, I'm still researching answers to our many questions. I soon discovered mom actually started having symptoms about 6 years ago, (about the time dad died) first the shuffle walk, then the stooped position, horrible nightmares, cognition decline was rapid, depression, seeing things, blank stare and finally not eating. She managed one year at her assisted living apartment, with several trips to the ER for dehydration, I don't think she ever really adjusted to her apartment. Her weight was always a healthy 180, she weighed 125 in April. While Mom was still recovering from surgery in the hospital, we visited local nursing homes in our area (Baton Rouge, LA) and found what we considered to be the best place for Mom. Her appetite finally > returned about a week after moving to the nursing home. Unfortunately, her ability to walk never returned, the aides manage to get her up most days in the wheelchair for a few hours but then it's back to bed. My search continues in finding maybe the impossible answer, what's next? She's alert and handles small conversation, battles UTI's regularly, confused with surroundings like closet, bathroom, clothes, tv, people, etc. She is actually afraid of becoming like so many of the other patients in the nursing home that scream out, curse and usually sleep in their wheel chairs. Is she correct? Thank you for giving me this opportunity to share with you our new journey towards finding peace and comfort for our mother. Any suggestions, comments or questions are always welcomed. God Bless You. > Jeni > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2009 Report Share Posted July 17, 2009 Thanks for your warm welcome. Currently mom is taking nexium, arthotec and a low dose antibiotic for uti maintenance. I recognized early on that certain meds did not agree with her, I just wasn't aware of the LBD at the time. One doctor prescribed lexipro for her depression and I saw an immediate decline. I insisted the doctor take her off the lexipro (which he did) and while she was in the hospital another doctor put her back on it.. It's been a constant battle with doctors and hospitals regarding her meds.. I'm so thankful both brothers live close by and we are sharing visit responsibilities and staying on top of her daily well being at the nh. I do believe (like you said) she has plateaued and I think it's because we finally stabilized her meds. I guess it's the unknown that frightens me the most. Thanks for listening. Jeni Subject: Re: Newly diagnosed To: LBDcaregivers Date: Friday, July 17, 2009, 1:56 PM Welcome Jeni. You've come to the right place for support, caring, shared problems around caring for a loved one with LBD. Each of us has a different story but the similarities are there, such as the dementia getting much worse with the wrong general anaesthetic, with a uti. It's such a shame she wasn't diagnosed before the anaesthetic. Our los tend to be very sensitive to many meds. Is your mom taking a cognitive enhancer? It is difficult to know what comes next. She could plateau at this stage for a time or exhibit a slow but gradual decline. If she's on any meds that don't agree with LBD and that is changed, she could improve some. As for yelling and cursing, that really shouldn't have to happen if she is not hallucinating and is not in pain, is not on any " bad " meds. You should receive a list of meds to watch out for and if you would like to share what meds she is taking here there are very knowledgeable people aboard who will see any red flags. It's a journey we never asked to be a part of but the support here makes it easier. Gibsons BC Mother died Aug. 12, 2006 at age 92 after a 13 year decline from PDD. > > Hello, My mother (age 79) was diagnosed with LBD in April while in the hospital being treated for depression and eating disorders. First week in the hospital, (geriatric ward) well-known psychiatrist findings were all normal. Second week moved to the medical geriatric ward and the decision was made to remove her infected gallbladder in the hopes her ability to eat again would return. After the surgery mom became as the doctor described " totally demented " suggesting a feeding tube and a nursing home, in his opinion she was unable to return to her assisted living apartment. The sad truth was we could see for ourselves he was accurate. The question became, how did this happen? She walked into the hospital with the help of her walker 2 weeks ago, what was the cause of this demented state? Thankfully, she started showing small signs of improvement and we called in the psychiatrist for a second look. His findings this time caught us all off > guard. Lewy Body Dementia, probably heightened by her gallbladder surgery. Like so many of you, the Doctor gave me and my brothers a brief description of LBD and told us to google it. Three months later, I'm still researching answers to our many questions. I soon discovered mom actually started having symptoms about 6 years ago, (about the time dad died) first the shuffle walk, then the stooped position, horrible nightmares, cognition decline was rapid, depression, seeing things, blank stare and finally not eating. She managed one year at her assisted living apartment, with several trips to the ER for dehydration, I don't think she ever really adjusted to her apartment. Her weight was always a healthy 180, she weighed 125 in April. While Mom was still recovering from surgery in the hospital, we visited local nursing homes in our area (Baton Rouge, LA) and found what we considered to be the best place for Mom. Her appetite finally > returned about a week after moving to the nursing home. Unfortunately, her ability to walk never returned, the aides manage to get her up most days in the wheelchair for a few hours but then it's back to bed. My search continues in finding maybe the impossible answer, what's next? She's alert and handles small conversation, battles UTI's regularly, confused with surroundings like closet, bathroom, clothes, tv, people, etc. She is actually afraid of becoming like so many of the other patients in the nursing home that scream out, curse and usually sleep in their wheel chairs. Is she correct? Thank you for giving me this opportunity to share with you our new journey towards finding peace and comfort for our mother. Any suggestions, comments or questions are always welcomed. God Bless You. > Jeni > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2009 Report Share Posted July 17, 2009 Hey Jeni, I have to wonder why your mother has not been prescribed a cognitive enhancer to help bring her back a bit cognitively. The 3 recommended here are Aricept, Exelon and Razadyne. Some use Namenda as well with one of those. Some los can't tolerate one or another of those recommended meds, but so many of our los benefit from at least 1 of them. Zoloft tends to work well with LBD for depression but then every one of our los is unique in what they can tolerate. My mom couldn't take Zoloft, it knocked her out. She was fragile by then, in her late 80s. We suggest starting or weaning 1 med at a time, starting low and going slow. Then we know what does/doesn't help and what else might be needed. A cognitive enhancer just might bring your mother back to a level you thought you had left behind. If Lin sees this message she just might jump in with much more detailed information. Are you out there Lin? > > > > Hello, My mother (age 79) was diagnosed with LBD in April while in the hospital being treated for depression and eating disorders. First week in the hospital, (geriatric ward) well-known psychiatrist findings were all normal. Second week moved to the medical geriatric ward and the decision was made to remove her infected gallbladder in the hopes her ability to eat again would return. After the surgery mom became as the doctor described " totally demented " suggesting a feeding tube and a nursing home, in his opinion she was unable to return to her assisted living apartment. The sad truth was we could see for ourselves he was accurate. The question became, how did this happen? She walked into the hospital with the help of her walker 2 weeks ago, what was the cause of this demented state? Thankfully, she started showing small signs of improvement and we called in the psychiatrist for a second look. His findings this time caught us all off > > guard. Lewy Body Dementia, probably heightened by her gallbladder surgery. Like so many of you, the Doctor gave me and my brothers a brief description of LBD and told us to google it. Three months later, I'm still researching answers to our many questions. I soon discovered mom actually started having symptoms about 6 years ago, (about the time dad died) first the shuffle walk, then the stooped position, horrible nightmares, cognition decline was rapid, depression, seeing things, blank stare and finally not eating. She managed one year at her assisted living apartment, with several trips to the ER for dehydration, I don't think she ever really adjusted to her apartment. Her weight was always a healthy 180, she weighed 125 in April. While Mom was still recovering from surgery in the hospital, we visited local nursing homes in our area (Baton Rouge, LA) and found what we considered to be the best place for Mom. Her appetite finally > > returned about a week after moving to the nursing home. Unfortunately, her ability to walk never returned, the aides manage to get her up most days in the wheelchair for a few hours but then it's back to bed. My search continues in finding maybe the impossible answer, what's next? She's alert and handles small conversation, battles UTI's regularly, confused with surroundings like closet, bathroom, clothes, tv, people, etc. She is actually afraid of becoming like so many of the other patients in the nursing home that scream out, curse and usually sleep in their wheel chairs. Is she correct? Thank you for giving me this opportunity to share with you our new journey towards finding peace and comfort for our mother. Any suggestions, comments or questions are always welcomed. God Bless You. > > Jeni > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2009 Report Share Posted July 18, 2009 Jenni, if she has hallucinations and a lot of confusion, ask the doctor about seroquel. My mom started out with 25 mg every 12 hours and in 3-4 weeks was having NO hallucinations. She had to have it increased a little more after that, but is still better mentally. The hallucinations had been so bad she wanted to die to get away from them. Now she can handle life, even though she is mainly in a wheel chair and in and out of be. (She is 88.) We have Palliative Care from Hospice, and between the Palliative Care nurse, the Regional Ombudsman, and her doctor's physician's assistant who comes to the nursing home, and threatening to get our lawyer involved, we have been able to make the nursing home staff let her take a nap in bed any time she wants, so she won't be sitting slumped over in her wheel chair all day. She no longer has nightmares at this point, so sleep is something she looks forward to. I wish you the best. It is rough, to say the least. Gurganus > > Hello, My mother (age 79) was diagnosed with LBD in April while in the hospital being treated for depression and eating disorders. First week in the hospital, (geriatric ward) well-known psychiatrist findings were all normal. Second week moved to the medical geriatric ward and the decision was made to remove her infected gallbladder in the hopes her ability to eat again would return. After the surgery mom became as the doctor described " totally demented " suggesting a feeding tube and a nursing home, in his opinion she was unable to return to her assisted living apartment. The sad truth was we could see for ourselves he was accurate. The question became, how did this happen? She walked into the hospital with the help of her walker 2 weeks ago, what was the cause of this demented state? Thankfully, she started showing small signs of improvement and we called in the psychiatrist for a second look. His findings this time caught us all off > guard. Lewy Body Dementia, probably heightened by her gallbladder surgery. Like so many of you, the Doctor gave me and my brothers a brief description of LBD and told us to google it. Three months later, I'm still researching answers to our many questions. I soon discovered mom actually started having symptoms about 6 years ago, (about the time dad died) first the shuffle walk, then the stooped position, horrible nightmares, cognition decline was rapid, depression, seeing things, blank stare and finally not eating. She managed one year at her assisted living apartment, with several trips to the ER for dehydration, I don't think she ever really adjusted to her apartment. Her weight was always a healthy 180, she weighed 125 in April. While Mom was still recovering from surgery in the hospital, we visited local nursing homes in our area (Baton Rouge, LA) and found what we considered to be the best place for Mom. Her appetite finally > returned about a week after moving to the nursing home. Unfortunately, her ability to walk never returned, the aides manage to get her up most days in the wheelchair for a few hours but then it's back to bed. My search continues in finding maybe the impossible answer, what's next? She's alert and handles small conversation, battles UTI's regularly, confused with surroundings like closet, bathroom, clothes, tv, people, etc. She is actually afraid of becoming like so many of the other patients in the nursing home that scream out, curse and usually sleep in their wheel chairs. Is she correct? Thank you for giving me this opportunity to share with you our new journey towards finding peace and comfort for our mother. Any suggestions, comments or questions are always welcomed. God Bless You. > Jeni > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2009 Report Share Posted July 18, 2009 Dear Jeni, When my Mom was put on Lexapro, she really hallucinated big time - she saw people standing in the living room, the couch " breathed, " all sorts of things.... The Lexapro was quickly discontinued, and the hallucinations stopped... Both the known and the unknown are frightening. But we are all here together to help each other get through these times. Sending hugs, Helene From: stimtimminss <stimdccnet (DOT) com> Subject: Re: Newly diagnosed To: LBDcaregivers@ yahoogroups. com Date: Friday, July 17, 2009, 1:56 PM Welcome Jeni. You've come to the right place for support, caring, shared problems around caring for a loved one with LBD. Each of us has a different story but the similarities are there, such as the dementia getting much worse with the wrong general anaesthetic, with a uti. It's such a shame she wasn't diagnosed before the anaesthetic. Our los tend to be very sensitive to many meds. Is your mom taking a cognitive enhancer? It is difficult to know what comes next. She could plateau at this stage for a time or exhibit a slow but gradual decline. If she's on any meds that don't agree with LBD and that is changed, she could improve some. As for yelling and cursing, that really shouldn't have to happen if she is not hallucinating and is not in pain, is not on any " bad " meds. You should receive a list of meds to watch out for and if you would like to share what meds she is taking here there are very knowledgeable people aboard who will see any red flags. It's a journey we never asked to be a part of but the support here makes it easier. Gibsons BC Mother died Aug. 12, 2006 at age 92 after a 13 year decline from PDD. > > Hello, My mother (age 79) was diagnosed with LBD in April while in the hospital being treated for depression and eating disorders. First week in the hospital, (geriatric ward) well-known psychiatrist findings were all normal. Second week moved to the medical geriatric ward and the decision was made to remove her infected gallbladder in the hopes her ability to eat again would return. After the surgery mom became as the doctor described " totally demented " suggesting a feeding tube and a nursing home, in his opinion she was unable to return to her assisted living apartment. The sad truth was we could see for ourselves he was accurate. The question became, how did this happen? She walked into the hospital with the help of her walker 2 weeks ago, what was the cause of this demented state? Thankfully, she started showing small signs of improvement and we called in the psychiatrist for a second look. His findings this time caught us all off > guard. Lewy Body Dementia, probably heightened by her gallbladder surgery. Like so many of you, the Doctor gave me and my brothers a brief description of LBD and told us to google it. Three months later, I'm still researching answers to our many questions. I soon discovered mom actually started having symptoms about 6 years ago, (about the time dad died) first the shuffle walk, then the stooped position, horrible nightmares, cognition decline was rapid, depression, seeing things, blank stare and finally not eating. She managed one year at her assisted living apartment, with several trips to the ER for dehydration, I don't think she ever really adjusted to her apartment. Her weight was always a healthy 180, she weighed 125 in April. While Mom was still recovering from surgery in the hospital, we visited local nursing homes in our area (Baton Rouge, LA) and found what we considered to be the best place for Mom. Her appetite finally > returned about a week after moving to the nursing home. Unfortunately, her ability to walk never returned, the aides manage to get her up most days in the wheelchair for a few hours but then it's back to bed. My search continues in finding maybe the impossible answer, what's next? She's alert and handles small conversation, battles UTI's regularly, confused with surroundings like closet, bathroom, clothes, tv, people, etc. She is actually afraid of becoming like so many of the other patients in the nursing home that scream out, curse and usually sleep in their wheel chairs. Is she correct? Thank you for giving me this opportunity to share with you our new journey towards finding peace and comfort for our mother. Any suggestions, comments or questions are always welcomed. God Bless You. > Jeni > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2009 Report Share Posted July 19, 2009 Jenni: Welcome doesn't seem appropriate here because none of us want to be here, but have found this amazing site and are glad we are, so welcome. This is the BEST place in the world for information, support and yes even a place to whine, scream and cry. My Dad was diagnosed in January after surgery as well and we started to realize the same, that we'd been seeing these " sypmtoms " for at least 6 years, however Mom says it's been going on longer but she didn't tell us. Ask ANY AND ALL questions here, if someone doesn't know the answer they will help you find it, or they've been there already and can offer advice and wisdom. These people are amazing and extrememly knowledgeable. For some the LBD roller coaster ride is finally over and for others they are still on it and are learning and dealing day to day the best they can as we all are. My only advice is to stay on top of the NH about the UTI's. We deal with the continually and it's extremely trying as we know that Dad has one by his actions as do the staff at the NH but the Dr. won't treat it because he doesn't have a fever. GRRRRRR Yes, tests are positve for infections but until he has a fever the Dr. DOES NOTHING! Hang in there and stay strong. You and your family have a long road ahead of you and we are ALL here for you. Jayne in VT, daughter of Bob diagnosed in Jan. 09 > > > > Hello, My mother (age 79) was diagnosed with LBD in April while in the hospital being treated for depression and eating disorders. First week in the hospital, (geriatric ward) well-known psychiatrist findings were all normal. Second week moved to the medical geriatric ward and the decision was made to remove her infected gallbladder in the hopes her ability to eat again would return. After the surgery mom became as the doctor described " totally demented " suggesting a feeding tube and a nursing home, in his opinion she was unable to return to her assisted living apartment. The sad truth was we could see for ourselves he was accurate. The question became, how did this happen? She walked into the hospital with the help of her walker 2 weeks ago, what was the cause of this demented state? Thankfully, she started showing small signs of improvement and we called in the psychiatrist for a second look. His findings this time caught us all off > > guard. Lewy Body Dementia, probably heightened by her gallbladder surgery. Like so many of you, the Doctor gave me and my brothers a brief description of LBD and told us to google it. Three months later, I'm still researching answers to our many questions. I soon discovered mom actually started having symptoms about 6 years ago, (about the time dad died) first the shuffle walk, then the stooped position, horrible nightmares, cognition decline was rapid, depression, seeing things, blank stare and finally not eating. She managed one year at her assisted living apartment, with several trips to the ER for dehydration, I don't think she ever really adjusted to her apartment. Her weight was always a healthy 180, she weighed 125 in April. While Mom was still recovering from surgery in the hospital, we visited local nursing homes in our area (Baton Rouge, LA) and found what we considered to be the best place for Mom. Her appetite finally > > returned about a week after moving to the nursing home. Unfortunately, her ability to walk never returned, the aides manage to get her up most days in the wheelchair for a few hours but then it's back to bed. My search continues in finding maybe the impossible answer, what's next? She's alert and handles small conversation, battles UTI's regularly, confused with surroundings like closet, bathroom, clothes, tv, people, etc. She is actually afraid of becoming like so many of the other patients in the nursing home that scream out, curse and usually sleep in their wheel chairs. Is she correct? Thank you for giving me this opportunity to share with you our new journey towards finding peace and comfort for our mother. Any suggestions, comments or questions are always welcomed. God Bless You. > > Jeni > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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