Guest guest Posted February 20, 2011 Report Share Posted February 20, 2011 Jannis, I'm so sorry to hear you are dealing with the frustrations that you are...and family that isn't there or doesn't educate themselves just don't get it. Good for you on confronting your niece...her experience doesn't qualify her to make assessments of what is going on! You're at a very hard stage now with your Mom, and my thoughts and prayers are with you. Lori 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 20, 2011 Report Share Posted February 20, 2011 Dear Jannis, My thoughts and prayers go with you and your Mom at this time. It's a rough ride, to be sure. My Mom will be 77 in March, and some days she is great, and some days she refuses to eat more than one meal a day. Sending you strength and many hugs, Helene in NY > > 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 I pray for a peaceful end for her, and also prayers for you! > > 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 Sorry, I just reread your message and see that you've DC'd all the meds and opted for palliative measures, so it isn't a reaction to a med. My heart goes out to you and your family during this difficult time. May you find peace and comfort in knowing that your mother will no longer suffer from this dreaded disease. You are doing all the right things to make sure she has comfort at this time. You have been a good, caring daughter and your mother has been fortunate to have you by her side. Jan Colello ________________________________ To: LBDcaregivers Sent: Sun, February 20, 2011 10:11:17 AM Subject: Re: Nearing the end 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 21, 2011 Report Share Posted February 21, 2011 Thank you, everyone, for your prayers. No, Mom hadn't changed meds in over a year. She has rallied a little, but we can't keep the oxygen on her. She still has that much control of her hands and arms. I can go in and fix it, and 5 minutes later she's thrown the cannula on the floor. She's a stubborn woman...*LOL* We've added the Requip back in to help control the hand tremors. It doesn't take care of them completely, but does help. We're having to keep very close watch on her, because at our request the hospice nurse came and put in a catheter. There's no getting her up for using the potty chair, and I certainly don't want her lying in a wet bed. She's pulled out catheters before, and I don't want that to happen again. She's content, though, to remain in her hospital bed and doesn't insist on getting up. We have to change her position often so that she doesn't get a skin breakdown and pressure sores. She just says she's tired, when she talks. She ate pancakes yesterday morning for breakfast, two small ones, and a chocolate chip cookie I made yesterday afternoon. Other than that, she's refused everything except a little water. We're just taking it minute by minute, hour by hour. Jan, I hadn't been online in quite a while, and just realized that you lost your sweet Jim. You were such a blessing to him, and you're a blessing to all of us on here. Things such as this are defining moments in our lives, aren't they? May God bless you. Jannis Daughter to , age 82 Third year after diagnosis with LBD, incorrect diagnoses for several years prior. > > Sorry, I just reread your message and see that you've DC'd all the meds and > opted for palliative measures, so it isn't a reaction to a med. > > My heart goes out to you and your family during this difficult time. > May you find peace and comfort in knowing that your mother will no longer suffer > from this dreaded disease. You are doing all the right things to make sure she > has comfort at this time. You have been a good, caring daughter and your mother > has been fortunate to have you by her side. > Jan Colello > > > > ________________________________ > > To: LBDcaregivers > Sent: Sun, February 20, 2011 10:11:17 AM > Subject: Re: Nearing the end > > > 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...
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