Guest guest Posted February 20, 2011 Report Share Posted February 20, 2011 Jannis, my heart goes out to you. You have been amazing through all this. Continued strength to you as you end this journey. > > I had gone shopping with my daughter yesterday, and I got a frantic phone call from my Dad, asking me to come home. He was unable to awaken Mom, who has LBD. She had been asleep for 18 hours. > > I got here, and saw that the right side of her face was droopier, her eyes were not equally open equally, her grip was uneven, and her speech was totally garbled. I put in a call to hospice, and our nurse, , came to the house. In the meantime, my daughter texted my sister, who has not been here or even made a phone call to check on my parents since Christmas (although she lives less than 15 minutes away), who picked up her daughter and rushed over here, as if they were going to save the day! > > So what happens? SHOWTIME! Somehow or another, the LBD showtime overrode the minor stroke (which agreed was the problem), and the sister and her daughter acted as if I were out of my tree for even thinking there was anything different. > > Of course, they clucked around and raised eyebrows at me and all... > > I told my niece that she could think whatever she wanted, but until she read up on LBD and all the manifestations of it, I didn't want to hear her assessment based on her being an EMT. I told her I am here with Mom and Dad every single day, and every single night, and I think I am a bit more familiar with what's going on than she is... > > Sheesh. > > As soon as everyone left, Mom dropped back into a comatose stage. We did manage to get oxygen on her (her oxygen level was at 85 or so) because she lacks the strength to pull the cannula from her nose. > > She refuses food and water, and we've DC'd all her meds, opting for merely palliative measures. She doesn't complain of any pain, but it's apparent that her kidneys are shutting down, and all her autonomic functions are becoming more and more erratic. > > A week? Maybe. The hospice nurse said not to expect more than that. > > So, we're nearing the end of the journey. I pray now that God will be merciful. > > Jannis > Daughter to , age 82 > Third year after diagnosis with LBD, > incorrect diagnoses for several years > prior. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2011 Report Share Posted February 20, 2011 Dear Jannis, Your family is in my thoughts and prayers during this difficult time. I just want to add this one thing that might or might not be a cause, and that is my husband had symptoms  similar to your mother. The neurologist prescribed Klonopin. At that time Jim was at home on his own while I worked, he was in the very beginning stages, in fact, he had not been diagnosed with LBD yet only Parkinson's. This was way before any doctors knew of LBD. I set the table for his breakfast and put the morning paper there too for when he got up and I went off to work. When I returned home everything was as I had left it, he had not gotten out of bed. I shouted his name and there was no response, I went into the bedroom and shouted his name, there was no response, and I rolled him over and his face was all droopy on one side and normal on the other. He only could mumble when he first responded. I called the neurologist right away. He had just been put on Klonopin and the doctor said he was having a reaction to the medication. My question is: Has your mother been put on any new medication recently that could have caused her to have a reaction, it doesn't have to be Klonopin, any medication? LBD is so sensitive to many medications. After awhile my husband came around and his face was normal again and his speech. There are so many things that can cause different reactions with LBD it is hard to know at times if there is any other underlying causes to certain symptoms they display. It is a very frustrating disease and tricks many into thinking the end is near and then they bounce back again. Keeping you in my thoughts and prayers. Jan Colello San Francisco Bay Area, California Husband, Jim, dx w/LBD 2003 Deceased, January 22, 2011 ________________________________ To: LBDcaregivers Sent: Sun, February 20, 2011 7:45:35 AM Subject: Nearing the end  I had gone shopping with my daughter yesterday, and I got a frantic phone call from my Dad, asking me to come home. He was unable to awaken Mom, who has LBD. She had been asleep for 18 hours. I got here, and saw that the right side of her face was droopier, her eyes were not equally open equally, her grip was uneven, and her speech was totally garbled. I put in a call to hospice, and our nurse, , came to the house. In the meantime, my daughter texted my sister, who has not been here or even made a phone call to check on my parents since Christmas (although she lives less than 15 minutes away), who picked up her daughter and rushed over here, as if they were going to save the day! So what happens? SHOWTIME! Somehow or another, the LBD showtime overrode the minor stroke (which agreed was the problem), and the sister and her daughter acted as if I were out of my tree for even thinking there was anything different. Of course, they clucked around and raised eyebrows at me and all... I told my niece that she could think whatever she wanted, but until she read up on LBD and all the manifestations of it, I didn't want to hear her assessment based on her being an EMT. I told her I am here with Mom and Dad every single day, and every single night, and I think I am a bit more familiar with what's going on than she is... Sheesh. As soon as everyone left, Mom dropped back into a comatose stage. We did manage to get oxygen on her (her oxygen level was at 85 or so) because she lacks the strength to pull the cannula from her nose. She refuses food and water, and we've DC'd all her meds, opting for merely palliative measures. She doesn't complain of any pain, but it's apparent that her kidneys are shutting down, and all her autonomic functions are becoming more and more erratic. A week? Maybe. The hospice nurse said not to expect more than that. So, we're nearing the end of the journey. I pray now that God will be merciful. Jannis Daughter to , age 82 Third year after diagnosis with LBD, incorrect diagnoses for several years prior. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2011 Report Share Posted February 23, 2011 Jannis - sending you strength during this difficult time. Spend as much time as possible with your mom. Lots of kisses. > > I had gone shopping with my daughter yesterday, and I got a frantic phone call from my Dad, asking me to come home. He was unable to awaken Mom, who has LBD. She had been asleep for 18 hours. > > I got here, and saw that the right side of her face was droopier, her eyes were not equally open equally, her grip was uneven, and her speech was totally garbled. I put in a call to hospice, and our nurse, , came to the house. In the meantime, my daughter texted my sister, who has not been here or even made a phone call to check on my parents since Christmas (although she lives less than 15 minutes away), who picked up her daughter and rushed over here, as if they were going to save the day! > > So what happens? SHOWTIME! Somehow or another, the LBD showtime overrode the minor stroke (which agreed was the problem), and the sister and her daughter acted as if I were out of my tree for even thinking there was anything different. > > Of course, they clucked around and raised eyebrows at me and all... > > I told my niece that she could think whatever she wanted, but until she read up on LBD and all the manifestations of it, I didn't want to hear her assessment based on her being an EMT. I told her I am here with Mom and Dad every single day, and every single night, and I think I am a bit more familiar with what's going on than she is... > > Sheesh. > > As soon as everyone left, Mom dropped back into a comatose stage. We did manage to get oxygen on her (her oxygen level was at 85 or so) because she lacks the strength to pull the cannula from her nose. > > She refuses food and water, and we've DC'd all her meds, opting for merely palliative measures. She doesn't complain of any pain, but it's apparent that her kidneys are shutting down, and all her autonomic functions are becoming more and more erratic. > > A week? Maybe. The hospice nurse said not to expect more than that. > > So, we're nearing the end of the journey. I pray now that God will be merciful. > > Jannis > Daughter to , age 82 > Third year after diagnosis with LBD, > incorrect diagnoses for several years > prior. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2011 Report Share Posted February 24, 2011 Jannis - My thoughts are with you. Sending you peace, Norma Quote Link to comment Share on other sites More sharing options...
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