Guest guest Posted January 28, 2011 Report Share Posted January 28, 2011 jennifer, thank you so very much for your kind words, and also for putting me on oyour prayer chain, as i do belive in the power of prayer as ihave benefited from it before, if i can help you please feel free to ask either here or personally and i will be glad ot help any way i can, hugs. sharon Subject: Re: My Sister To: LBDcaregivers Date: Friday, January 28, 2011, 9:27 AM Dorothy: Thank you for your response. I try to stay up on her medications. She is on medication for high blood pressure, cholesterol, perminin (sp?, horomone), nitrofurtin to prevent UTIs, and a anti-inflammatory for arthritics. As of right now she isn't on any antiphyosic meds. She does have frequent UTIs and they check her often. She has physical therapy 3 days a week, but the last few days she has been refusing it. She has never liked exercise even when she was healthy. Right now she cannot stand on her own. We are having to lift her to the wheel chair to take her to the bathroom. The staff at the assisted living seem to be very caring. As with any nursing facility, you have some that are more patient and tolerant with patients that require more care. The director is an RN and they also have an RN who is head of nursing. They have been working with us very well to help make suggestions to the doctors. We are there several times a day, so they know we keep close check on her. She only has one son and all of us work. We thought about bringing her home and tyring to take care of her, but the doctors advised against it. We live in a rural area and it is very difficult to find people who will stay/sit will someone and someone you can trust and depend on. We have people staying with her at night and that has been an ordeal just to find people for that. We don't know if what she is doing now is medication or part of the LBD. Her neuro doctor said there are very few meds that work without side effects and he just has to try to see what will help her. He and her primary doctor do communicate about her condition. The next medicine they are going to try is Abilify. One of the nurses said this worked on a patient in a nursing home that had very similar symptoms. They didn't think it would, but it did. She says she is in in constant pain with her legs and now complaining about her tale bone. Does this type of pain go along with LBD? I know God can work a miracle in her body and that is what I'm praying. However, and I hate to use this term, but her mind has her in hell. She sees very little relief other than maybe the short naps she takes. When she is awake ,she is constantly wanting to know what time it is, who will be staying with her, " what was that noise " , etc., then the same questions all over again. Thanks My Sister My sister, 74 years of age, was diagnosed w/parkinson's severals ago and put on meds for parkinson. A couple of years ago she started seeing people in her house, seeing black lace around things especially curtains. She was never afraid of these people but couldn't understand why they were in her house. In November early one morning she left her home barefooted and walked down the road about 1/2 mile before someone got to her. She was in the hospital for approximately three weeks and was diagnosed with LBD. They have taken her off all parkinson's meds because of the possibility of increasing the hallucinations. She is now living in a very nice assisted living facility. They have tried Seroquil, Risperdal, Ativan,Paxil and everything works against her. They are now going to try Abilify. I see her going down every day. She was a very independent woman who lived by herself for close to 20 years. Now she is terrified to be alone, very parnoid. She thinks they ! are making movies about her, bugging her room, monitoring her phone calls, etc. She was able to get up and down from the chair and coach by herself, but these last few days she has to have assistance. Her feet seem to " freeze " when she tries to walk. We ask her to move her feet, but she says she can't. It is so troubling to see her go through this and not know what to do and knowing the doctors know little as to what to do. The doctors thinks she is probably mid-sage. I go see her most days twice a day and we have sitters during the night. Every day there is something new going on. Today she was complaining of legs and neck pain. She has just about quit eating. We have to sit and encourage her to eat what she does. She has lost 18 pounds in about three months. Can anyone help us know where were are with this awlful disease or any medication that seems to work. I know everyone is different. We want to keep her out of the nursing home as long as possible, but I'm not sure how long she will be able to stay at the assisted living. Any help would be greatly appreciated. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2011 Report Share Posted January 28, 2011 Hi . I am glad that you followed my suggestion and joined this group. You will be so happy that there are so many people that can help and offer their solutions to some of the things that you and your sister are experiencing! Hugs, Joan > > My sister, 74 years of age, was diagnosed w/parkinson's severals ago and put on meds for parkinson. A couple of years ago she started seeing people in her house, seeing black lace around things especially curtains. She was never afraid of these people but couldn't understand why they were in her house. In November early one morning she left her home barefooted and walked down the road about 1/2 mile before someone got to her. She was in the hospital for approximately three weeks and was diagnosed with LBD. They have taken her off all parkinson's meds because of the possibility of increasing the hallucinations. She is now living in a very nice assisted living facility. They have tried Seroquil, Risperdal, Ativan,Paxil and everything works against her. They are now going to try Abilify. I see her going down every day. She was a very independent woman who lived by herself for close to 20 years. Now she is terrified to be alone, very parnoid. She thinks they are making movies about her, bugging her room, monitoring her phone calls, etc. She was able to get up and down from the chair and coach by herself, but these last few days she has to have assistance. Her feet seem to " freeze " when she tries to walk. We ask her to move her feet, but she says she can't. > > It is so troubling to see her go through this and not know what to do and knowing the doctors know little as to what to do. The doctors thinks she is probably mid-sage. I go see her most days twice a day and we have sitters during the night. Every day there is something new going on. Today she was complaining of legs and neck pain. She has just about quit eating. We have to sit and encourage her to eat what she does. She has lost 18 pounds in about three months. > > Can anyone help us know where were are with this awlful disease or any medication that seems to work. I know everyone is different. We want to keep her out of the nursing home as long as possible, but I'm not sure how long she will be able to stay at the assisted living. > > Any help would be greatly appreciated. > > Thanks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2011 Report Share Posted September 20, 2011 Update on my sister. She is now getting choked a lot and aspirating. She now has pneumonia. The Hospice nurse said aspiration and pneumonia would be a constant battle, leading to the end. She is so weak. When she tries to cough up the congestion, she gets so choked and tired. She complains of someone " sitting or pushing on her chest " . Thanks .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2011 Report Share Posted September 20, 2011 Hi jenifer My heart breaks for you! Especially since your Sister knows what's happening and can speak about it!! Just know my thoughts and prayers are with you that her suffering is Not prolonged !!' Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... > > Update on my sister. She is now getting choked a lot and aspirating. She now has pneumonia. The Hospice nurse said aspiration and pneumonia would be a constant battle, leading to the end. She is so weak. When she tries to cough up the congestion, she gets so choked and tired. She complains of someone " sitting or pushing on her chest " . > > Thanks > > > . > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2011 Report Share Posted September 21, 2011 Dear , What a heartbreak to read this. My Mom has bouts of coughing, and has difficult swallowing sometimes. She had pneumonia about a year ago, but the antibiotics did the trick and we still use a nebulizer once a day; we think the nebulizer must help to keep her clear, and it often helps her get back the 'chew and swallow.' My thoughts are with you. Helene in NY > > > Update on my sister. She is now getting choked a lot and aspirating. She now has pneumonia. The Hospice nurse said aspiration and pneumonia would be a constant battle, leading to the end. She is so weak. When she tries to cough up the congestion, she gets so choked and tired. She complains of someone " sitting or pushing on her chest " . > > Thanks > > > . > > > > > > > Quote Link to comment Share on other sites More sharing options...
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