Guest guest Posted May 3, 2009 Report Share Posted May 3, 2009 Lin: I thought the same thing when I read the list of meds, but you put it in much better language. If the doc wants to start removing meds, he should start on those three first, but I understand you can't get of Xanax very easily. But, if it is reduced gradually, maybe they could get it down to a very minimum dose. There is a man in my church whose wife has AD, and we have discussed her quite often. She used to be able to come to church but hasn't been able to now for the last several months. However, she is able to stay alone part of the time, as he does get to church sometimes. Anyway, he told me today that she had been progressively getting worse, and they finally put her on Seroquel in addition to her Aricept and Namenda, and it has improved her greatly so that she now can help cook, wash dishes, etc., when she hadn't been able to do those things. He says that she wants to " go home " all day, and nothing can convince her that she is home. I told him to go along with her by saying that they'd go later or something like that, so hopefully, that will help. To June, hopefully, the doctor will listen and maybe get her off the harmful meds before they do too much more damage. The other June. From: keeblejune <junekeeblenumail (DOT) org> Subject: My Sister Joyce To: LBDcaregivers@ yahoogroups. com Date: Sunday, May 3, 2009, 7:35 PM Hi, Lin. Yes - I received your earlier post and printed it out so that I could go down the list and give you the info you asked for. Thank you so much for doing this. I guess I've been on a big pity party because I just didn't know how to write to you. Also, about a week ago, I fell in my home and was pretty banged up for a few days. I couldn't sleep and got up to go downstairs and sit in my recliner and watch TV until I got sleepy. I have a blanket in my chair that had fallen to the floor in front of my chair. I did not turn any lights own and proceeded to get tangled up in the blanket and fell. I still have a few bruises but I'm OK. Now, back to Joyce. I feel that I should give you some background. Joyce is 77 and I a 73. We've always been very close growing up. We have two completely different personalities. I am not afraid or embarrassed to speak my mind. When I have a legimate argument, I will argue my case to the end. Joyce, on the other hand, has always been extremely shy, very nervous, worried about everything, and easily scared. She had been going to the same doctor for about 20 years and I felt like he would give Joyce anything she wanted or do anything she wanted - just my impression. About three years ago, Joyce started having wild hallucinations, seeing children dancing in her back yard, thinking she was fully dressed when she had no clothes on at all. She was hospitalized and put on Aricept. She was already on Zoloft 50 mg which she has been taking for years. She recovered somewhat and was able to take care of her household. Things came to a halt when she got lost in her car and we did not find her until 2:00 AM. From there she went to worse and we changed doctors. He admitted her to Wesley Woods Memory Unit, stopped the Aricept, and started her on Risperdal 0.5 mg once a day. Things improved for a few weeks. Then, without warning, she went beserk. She began stuffing towels down the toilet, took all her clothes from the closet because " that man " was trying to steal them. She hated her husband, Clyde, and me and would not even let us into her unit without her becoming violent. She even resorted to yelling obscenities to everyone and that is so very out of character for her. So - although we did not want to do it, we allowed her to have Abilify 10 mg daily. She also is on Namenda 10 mg. twice a day,Zoloft 50 mg once a day, aspirin 81mg daily and Xanax 0.25 every eight hours. They've recently added the Exelon Patch at night. It took about two weeks for the meds to get her straigtened out. WE all realize that this is a lot of medication but it is the only thing that keeps the horrible hallucinations in check. Her doctor will see her Wednesday and I'll know better what to tell you then. He told us that he thinks she is about one month from hospice care. He also said he was going to begin backing off her medications. Thank you so much for your invaluable help, Lin. This has not been very good week. Love, June Keeble ------------ --------- --------- ------ Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2009 Report Share Posted May 3, 2009 Hi June, I just want to say that Mom would want to go home every day, even sometimes more than once a day. This was before I knew she had LBD and that this is a common thing with the disease. One day, after she kept asking over and over again to go home, I just thought I would try something. I said " OK " and we got in the car and took about a 5 mile ride and then came back home. She was then fine. It's that Capgras Syndrome. Some days she wanted to go home two or three times. If I didn't take the same exact route every time she would tell me. So in her thinking that she had two homes, she could also 'learn' the way to get home and knew if I went the wrong way to her 'other home'. It gave me some extra time with her, because we would talk, sing, pray, play " A my name is " , etc. It was a nice little break in the day to see the sunshine and observe nature etc. Joan > > From: keeblejune <junekeeblenumail (DOT) org> > Subject: My Sister Joyce > To: LBDcaregivers@ yahoogroups. com > Date: Sunday, May 3, 2009, 7:35 PM > > Hi, Lin. Yes - I received your earlier post and printed it out so that I could > go down the list and give you the info you asked for. Thank you so much for > doing this. I guess I've been on a big pity party because I just didn't > know how to write to you. Also, about a week ago, I fell in my home and was > pretty banged up for a few days. I couldn't sleep and got up to go > downstairs and sit in my recliner and watch TV until I got sleepy. I have a > blanket in my chair that had fallen to the floor in front of my chair. I did > not turn any lights own and proceeded to get tangled up in the blanket and fell. > I still have a few bruises but I'm OK. Now, back to Joyce. I feel that I > should give you some background. Joyce is 77 and I a 73. We've always been > very close growing up. We have two completely different personalities. I am not > afraid or embarrassed to speak my mind. When I have a legimate argument, I will > argue my case to the end. Joyce, on the other hand, has always been extremely > shy, very nervous, worried about everything, and easily scared. She had been > going to the same doctor for about 20 years and I felt like he would give Joyce > anything she wanted or do anything she wanted - just my impression. About three > years ago, Joyce started having wild hallucinations, seeing children dancing in > her back yard, thinking she was fully dressed when she had no clothes on at all. > She was hospitalized and put on Aricept. She was already on Zoloft 50 mg which > she has been taking for years. She recovered somewhat and was able to take care > of her household. Things came to a halt when she got lost in her car and we did > not find her until 2:00 AM. From there she went to worse and we changed doctors. > He admitted her to Wesley Woods Memory Unit, stopped the Aricept, and started > her on Risperdal 0.5 mg once a day. Things improved for a few weeks. Then, > without warning, she went beserk. She began stuffing towels down the toilet, > took all her clothes from the closet because " that man " was trying to > steal them. She hated her husband, Clyde, and me and would not even let us into > her unit without her becoming violent. She even resorted to yelling obscenities > to everyone and that is so very out of character for her. So - although we did > not want to do it, we allowed her to have Abilify 10 mg daily. She also is on > Namenda 10 mg. twice a day,Zoloft 50 mg once a day, aspirin 81mg daily and Xanax > 0.25 every eight hours. They've recently added the Exelon Patch at night. It > took about two weeks for the meds to get her straigtened out. WE all realize > that this is a lot of medication but it is the only thing that keeps the > horrible hallucinations in check. Her doctor will see her Wednesday and I'll > know better what to tell you then. He told us that he thinks she is about one > month from hospice care. He also said he was going to begin backing off her > medications. > Thank you so much for your invaluable help, Lin. This has not been very good > week. > Love, > June Keeble > > ------------ --------- --------- ------ > > Welcome to LBDcaregivers. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2009 Report Share Posted May 3, 2009 Mom was given Risperdal upon her initial evaluation and diagnosis of dementia. She took it about six weeks and then after her comprehensive evaluation was completed and the definitive diagnosis of LBD, the geriatric psychiatrist changed her to a milder drug. She had problems holding her head up and our primary care doctor said it was from the Risperdol and her neck was very painful. > > June one more question. When was Joyce put on Risperdal? My husband had > hallucinations, and that is the medication the doctor prescribed over the > phone through the nurse. I found another Doctor within a month, after I > removed the Risperdal. The other doctor, a highly respected > Geriatric/Psychiatrist, told me that I did the right thing for Don. In fact he was proud of me. > If the hallucinations aren't frightening then leave them alone. Joyce can > visit with them, and have company that doesn't scare her. > > Love with a smile, > Imogene > > Caregiver for my True Texas Gentleman Husband. Diagnosed with AD in 2005. > And then, with LBD 2006. > A happy personality is contagious. Infect someone today. > Yours Truly > > > In a message dated 5/3/2009 9:00:36 P.M. Central Daylight Time, > junekeeble@... writes: > > Thanks, Lin. I appreciate every bit of info you can supply me with and I > will NEVER think you are not trying to help Joyce and me. I have had a > long discussion with Joyce's doctor regarding the Abilify before and he stated > that he had tried to control the hallucinations with other meds and that > the Abilify was the only thing that worked. I'll surely speak to him > Wednesday regarding the Abilify and the Xanax. The only thing that really > troubles me is this - when I told you that about 3 years ago Joyce was > hospitazlied because of bad hallucinations. She was so bad that she had to be > restrained for about a week. I can't help but wonder if she has some deep mental > problem in addition to the LBD. Knowing her personality and background, I > would not be surprised. > Thanks. I'll let you know what the doctor says. > Love, > June > > > > **************The Average US Credit Score is 692. See Yours in Just 2 Easy > Steps! > (http://pr.atwola.com/promoclk/100126575x1222376998x1201454298/aol?redir=http://\ www.freecreditreport.com/pm/default.aspx?sc=668072 & hmpgID=62 & bcd=M > ay5309AvgfooterNO62) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 Dearest June, Even though I've never written to you before, please know you, your sister Joyce and your family have been in my thoughts and prayers. I am so glad the horrible hallucinations have disappeared. My dad's bad hallucination have gone away too, with the exception of trying to pick off a speck he sees on the night table or floor. That we can live with! Sending you many hugs, from NYC > > Hello everyone. Thank you so much for replying to my questions regarding the state of my sister's LBD and Parkinson's. Yes, I have printed out the LBD approximate phases from our group site. As many of you have pointed out, I've noticed some of ALL the phases at different times. This list really helps me. Joyce has been incontinent, both kidney and bowel for about three years, long before she went to live at Wesley Woods. She exhibits the Lewy Lean and at one time had severe and horrible hallucinations. Once her meds got straightened out, the hallucinations completely stopped. I sure hope they don't re-appear. She stills sees things that aren't there but they are not scary to her. She may notice something on the floor and think it is something else when it is just the carpet pattern. Anyway, I saw her this evening around 6:30 PM and she was really having a time straitening out her legs. The nurse said it was because it was the end of the day and she was very tired. She knew me this time and called my by name as soon as she saw me and held out her arms for a great big hug. Again, she was standing at the nurse's station which is next door to her apartment. I just think she wants the company of the nurses. They all said that Joyce sleeps very well at night. I plan to spend a long time with her tomorrow. Her husband's heart is breaking and he can hardly stay with her, nor can her only daughter. Thank you so much for letting me vent. I love you all and really feel like you all are my loving and caring friends, although we've never met in person. > Love, > June K. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2009 Report Share Posted May 8, 2009 Dear June, I join and everyone here in having much respect for the care you're giving your dear sister. She is so fortunate to have you by her side. Dealing with this disease is so hard for family members, and it sounds as if Joyce's husband and daughter can also be grateful to you for your loving attention. You're right, you are so clear about what it means to be an advocate: they too are lucky to have you. Also wonderful the MD is taking your guidance and getting the meds on course. Did the doctor say more about Joyce " failing " ? If you aren't seeing that, then of course anyone would wonder what he means. Is he talking about some specific disease, organ failure, the natural progression of LBD over time as it affects the entire being, or a general kind of failure to thrive that sometimes comes when people haven't been getting adequate nutrition, hydration, exercize, stimulation, etc? I don't know what he means by drugs to " keep her out. " As in " out of pain, " " knocked out, " or what? I'd guess he will be checking on her in person again fairly soon to evaluate her response to the changes in meds, so it would be an opportunity for him to further explain. I am so impressed by your work at Emory. It's an excellent med center, and it sounds as if you were right in the middle of some exciting activites. And how proud you must be of your daughter. How about you? Are you recuperated after your tumble? Getting Joyce's meds sorted out is probably a great relief, and I'm glad to hear you're feeling better about that. You have been persistent, attentive and a terrific sister. I have one brother who wants nothing to do with my mom, her care or me, so I have great admiration for how committed you are to your sib. Please stay in touch, June. We all care a lot! Lin Subject: Re: My Sister Joyce To: LBDcaregivers Date: Thursday, May 7, 2009, 12:04 PM June, thak you for sharing the outcome of your visit with Joyce's doctor. It may be a rough ride getting Joyce stabilized but I know you will be there for her. Just know better days should come. Thinking of you. > > HI,Lin and all you other good friends who gave me some excellent advice regarding Joyce's med. I spoke with her doc today. I'll admit that he is very familiar with LBD. In fact, Joyce and one other lady in her unit are the only two with LBD/Parkinsonism. The other lady's family uses Joyce's doctor also because of the LBD. I told him that Joyce's family had appointed me spokesman for the family and he said that was fine with him. (Can you imagine - Joyce's husband nor her daughter came to meet with the doc - they want me to and I am glad because I know it will get done. They've had an easy, rosy life and just do not know how to handle this.) I told the doc that we did not want Joyce taking Abilify and Xanax. He said he started last week weaning her off Abilify and will do the same regarding the Xanax. I checked with Joyce's records and, sure enough, he has cut down on the dosage and will take her off completely. He'll do the same for the Xanax. She will remain on the Zoloft (which she started taking several years before she got sick), Exelon Patch at night for sleep, and Namemda. He is starting her on Seroquel again. She was taking it for a while. I don't know why he took her off. Hope she can tolerate all the changes. He did tell me that Joyce is failing rapidly but that's hard for me to see. However, I got the same message from her PT. By the way Lin, you mentioned the Emory University doctors. I know many of them. I retired from Emory in 1993. I am not a medically trained practitioner but I am a trained medical secretary. I worked for the School of Medicine, Dept. OB/Gyn and recruited bright medical students to come and train at Emory. I also was secretary to the Vice-Chairman of the Department and typed and edited many, many journal articles. Unfortunately, OB/GYN didn't cover LBD. Needless to say, I checked out Joyce's doctor with my friends at Emory. Also, my daughter got her BSN from Emory, as well as her MSN. She works at Emory's Children's Hospital as a Nurse Practitioner in the Urology Dept. Again, thank you for all your help. I feel so much better and will keep you informed. By the way, he checked Joyce out good and again said she was failing everywhere. I asked him if he meant body and mind and he said yes and that soon, she may require drugs to keep her out. What do you think of this? He said last month that she was about one month away from hospice. > Love, > June > ------------------------------------ Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2009 Report Share Posted May 8, 2009 Hi June, As I read Lin's post, I can almost gurantee that if I was suffering from LBD there would not be a sibling within 500 miles to help out. It is wonderful that you have remained close and take on this huge responsibilty for her in these difficult times. I only hope and pray that Joyce's husband and daughter not only appreciate your stepping in as the main caregiver, but also that they find it in their hearts to acknowledge this and thank you for what you are doing. If they done, I do! Thank you for being there for your sister...you are amazing and I wish you were my sister! Joan > > > > HI,Lin and all you other good friends who gave me some excellent advice > regarding Joyce's med. I spoke with her doc today. I'll admit that he > is very familiar with LBD. In fact, Joyce and one other lady in her unit are the > only two with LBD/Parkinsonism. The other lady's family uses Joyce's > doctor also because of the LBD. I told him that Joyce's family had appointed > me spokesman for the family and he said that was fine with him. (Can you imagine > - Joyce's husband nor her daughter came to meet with the doc - they want me > to and I am glad because I know it will get done. They've had an easy, rosy > life and just do not know how to handle this.) I told the doc that we did not > want Joyce taking Abilify and Xanax. He said he started last week weaning her > off Abilify and will do the same regarding the Xanax. I checked with Joyce's > records and, sure enough, he has cut down on the dosage and will take her off > completely. He'll do the same for the Xanax. She will remain on the Zoloft > (which she started taking several years before she got sick), Exelon Patch at > night for sleep, and Namemda. He is starting her on Seroquel again. She was > taking it for a while. I don't know why he took her off. Hope she can > tolerate all the changes. He did tell me that Joyce is failing rapidly but > that's hard for me to see. However, I got the same message from her PT. By > the way Lin, you mentioned the Emory University doctors. I know many of them. I > retired from Emory in 1993. I am not a medically trained practitioner but I am a > trained medical secretary. I worked for the School of Medicine, Dept. OB/Gyn and > recruited bright medical students to come and train at Emory. I also was > secretary to the Vice-Chairman of the Department and typed and edited many, many > journal articles. Unfortunately, OB/GYN didn't cover LBD. Needless to say, I > checked out Joyce's doctor with my friends at Emory. Also, my daughter got > her BSN from Emory, as well as her MSN. She works at Emory's Children's > Hospital as a Nurse Practitioner in the Urology Dept. Again, thank you for all > your help. I feel so much better and will keep you informed. By the way, he > checked Joyce out good and again said she was failing everywhere. I asked him if > he meant body and mind and he said yes and that soon, she may require drugs to > keep her out. What do you think of this? He said last month that she was about > one month away from hospice. > > Love, > > June > > > > > > > ------------------------------------ > > Welcome to LBDcaregivers. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2009 Report Share Posted May 9, 2009 Hello dear June, Did she walk when she went to Clyde's house? Also, she was able to tell you which place she liked better. Think of it, If Joyce was able to go to Clyde's house and could tell you that she liked WW better, she is not at the end yet. Usually at the end, the LO can no longer get up. They very often can't talk. They can't eat solids. To me it sounds as if she has gotten better with medicine change. A person at the end stage has fever, is very sick, and has very fluctuating blood pressure. Usually it nearly drops out of sight. When it is the end the person's breathes are fast, irregular, and shallow. The feet and hands may display purple blotches. Yes, at the end there is pain from the organs and body as a whole shutting down. Believe me, the nurses will let you know when it is the end. Hospice will provide Morphine to relieve any pain, and allow the person to die with dignity. Others may tell you more, or clarify what I have said. I believe you can relax about Joyce just now. But, I will say you are one fine advocate. I wish I had you on my team. Love with a smile, Imogene Caregiver for my True Texas Gentleman Husband. Diagnosed with AD in 2005. And then, with LBD 2006. A happy personality is contagious. Infect someone today. Yours Truly In a message dated 5/9/2009 5:20:36 P.M. Central Daylight Time, junekeeble@... writes: Dear Lin, , Imogene, and all my friends. I wanted to give you an update on Joyce's condition. Since coming off the Abilify and Xanax, her leg stiffness is so much better but her trembling may be a little worse. Yesteday, she was in such a happy mood. Her husband could not believe the difference. He said he and Joyce had a great, sensible conversation for the first time in a long time. I spent the afternoon with her today, and I'm so glad that I did. Clyde took her home today for about 2.5 hours and I think that was a mistake. I asked Joyce if she had a good time at " Clyde's " home and she said, " not really. " " It was not what I thought it would be. " I then asked her which home she liked the best, Clyde's home or her home at Wesley Woods. She said she likes her home at WW better. I Just don't know what to expect in the coming months. When I walked into her room, she said she had been crying and I asked her why and she said she was crying because she couldn't find me. I really don't know what to do. She begged me to take her to my house. She said she couldn't do anything at WW and if I brought her to my house, she would cook, clean, and do anything I wanted to do. I just told her that I live in a two story house and the stairs might be dangerous. She said she was going to ask Clyde to bring her to me house anyway. She appears to be losing weight and appears to be extrenekt weak even though she is not as stiff. I think her doctor meant that she may have to be sedated if he can't control her halllucinations, which aren't bad athis time. I don't like this idea at all. CAN ANY OF YOU TELL ME WHAT TO EXPECT IN THE LAST STAGES. IF SHE IS IN PAIN, WHERE IS THE PAIN COMING FROM? IS IT BECAUSE MAJOR ORGANS WILL SHUT DOWN AND CAUSE PAIN? ANYTHING YOU CAN TELL ME WILL BE GREAT SO THAT i CAN PREPARE MYSELF, AS WELL AS HER FAMILY. Love to all, June **************A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100126575x1221823232x1201398636/aol?redir=http://\ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2009 Report Share Posted May 9, 2009 Dear June, Isn't this what we are here for? To help if we possibly can? One sentence may help. Of course she is tired today, since she went out yesterday. That happens to all of us at some point in life. When I am like that I just want to be alone and quiet. I hope she is back to normal tomorrow. Sending you best wishes. Love with a smile, Imogene Caregiver for my True Texas Gentleman Husband. Diagnosed with AD in 2005. And then, with LBD 2006. A happy personality is contagious. Infect someone today. Yours Truly In a message dated 5/9/2009 10:36:16 P.M. Central Daylight Time, junekeeble@... writes: Dear Imogene, Thank you so much for your encouragement regarding Joyce. She can walk short distances but gets tired quickly. She didn't want to eat dinner tonight so we jut gave her Ensure and some flavored water. She appears to have lost a little weight but I'm not sure. I tried to get her to stand on the scales so I could weigh her but she wouldn't cooperate. Yes, I too, don't think it is the end for Joyce yet but she is so very weak. She did great yesterday talking with Clyde but today was a down day.Sometimes she talks about dying. It's hard to explain to her but I told her that since we are Christians, we will never die. Christ defeated death on the cross. Well, I'll go to bed now. Thank you again Imogene, my friend. I don't know where I'd be without this wonderful group of caregivers who have so much in common. Love, June **************A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100126575x1221823232x1201398636/aol?redir=http://\ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2009 Report Share Posted May 9, 2009 Hi June, I just want to add to what Imogene replied. When Mom was in the dying process the hospice nurses explained that when the body is shutting down the pain receptors in the brain are close to the first to be shut down. Therefore, the dying person does not feel pain from the organs shutting down but it causes an agitation and the liquid morphine sulphate (Roxinol) takes that agitation away so that there is no discomfort from this process. the stomach starts to shut down and then the person isn't taking any more food or water. Sounds like Joyce is eating so that is a sign that she is not 'near the end' as in a few days. Hospice will always make sure that the proper medications to deal with each stage of the dying process is started and adjusted at the right times to make Joyce's final days very peaceful. It sounds like the med change that Joyce had has brought her back to eating and talking, etc. Remember to take care of yourself so that you can be strong to be with Joyce when she needs you. It sounds like you are certainly her favorite, and while it puts added burden on your life right now, I would consider that an honor - something that you can be very proud of. God bless you and Joyce, Joan > > Hello dear June, > > Did she walk when she went to Clyde's house? Also, she was able to tell > you which place she liked better. Think of it, If Joyce was able to go to > Clyde's house and could tell you that she liked WW better, she is not at the > end yet. > > Usually at the end, the LO can no longer get up. They very often can't > talk. They can't eat solids. To me it sounds as if she has gotten better with > medicine change. > > A person at the end stage has fever, is very sick, and has very > fluctuating blood pressure. Usually it nearly drops out of sight. When it is the end > the person's breathes are fast, irregular, and shallow. The feet and hands > may display purple blotches. Yes, at the end there is pain from the organs > and body as a whole shutting down. > > Believe me, the nurses will let you know when it is the end. Hospice will > provide Morphine to relieve any pain, and allow the person to die with > dignity. > > Others may tell you more, or clarify what I have said. I believe you can > relax about Joyce just now. But, I will say you are one fine advocate. I > wish I had you on my team. > > Love with a smile, > Imogene > > Caregiver for my True Texas Gentleman Husband. Diagnosed with AD in 2005. > And then, with LBD 2006. > A happy personality is contagious. Infect someone today. > Yours Truly > > > In a message dated 5/9/2009 5:20:36 P.M. Central Daylight Time, > junekeeble@... writes: > > Dear Lin, , Imogene, and all my friends. I wanted to give you an > update on Joyce's condition. Since coming off the Abilify and Xanax, her leg > stiffness is so much better but her trembling may be a little worse. > Yesteday, she was in such a happy mood. Her husband could not believe the > difference. He said he and Joyce had a great, sensible conversation for the > first time in a long time. I spent the afternoon with her today, and I'm so > glad that I did. Clyde took her home today for about 2.5 hours and I think > that was a mistake. I asked Joyce if she had a good time at " Clyde's " home > and she said, " not really. " " It was not what I thought it would be. " I then > asked her which home she liked the best, Clyde's home or her home at > Wesley Woods. She said she likes her home at WW better. I Just don't know what > to expect in the coming months. When I walked into her room, she said she > had been crying and I asked her why and she said she was crying because she > couldn't find me. I really don't know what to do. She begged me to take > her to my house. She said she couldn't do anything at WW and if I brought > her to my house, she would cook, clean, and do anything I wanted to do. I > just told her that I live in a two story house and the stairs might be > dangerous. She said she was going to ask Clyde to bring her to me house anyway. > She appears to be losing weight and appears to be extrenekt weak even > though she is not as stiff. I think her doctor meant that she may have to be > sedated if he can't control her halllucinations, which aren't bad athis time. > I don't like this idea at all. CAN ANY OF YOU TELL ME WHAT TO EXPECT IN > THE LAST STAGES. IF SHE IS IN PAIN, WHERE IS THE PAIN COMING FROM? IS IT > BECAUSE MAJOR ORGANS WILL SHUT DOWN AND CAUSE PAIN? ANYTHING YOU CAN TELL ME > WILL BE GREAT SO THAT i CAN PREPARE MYSELF, AS WELL AS HER FAMILY. > Love to all, > June > > > > **************A Good Credit Score is 700 or Above. See yours in just 2 easy > steps! > (http://pr.atwola.com/promoclk/100126575x1221823232x1201398636/aol?redir=http://\ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 hello, when my dad passed, it was sudden, he wasnt expected to pass, he was eating and drinking the day he died, the 30 hours before his death he was singing happy birthday to donnie, that was on a friday. the next afternoon his bp started becoming more erractic, it would bottom out and with the increase of fluids and a change in his bp medicine he stabilized by 1030pm, and at 142am he passed away, according to his favorite nurse who was with him when he passed away he was not in abnormal pain, he was on lortabs for a broken and out of socket left hip, his bp kept dropping and wouldnt come back up, he pointed to teh heavens and then reached out grabbing a 'hand' he saw and said 'i am coming mommy' (his mother passed away not quite one month before my daddy) and then he was gone, i and this group was in shock as we were making arrangements to bring daddy home on oct 1, he died sept 25. i was devasted as i wasnt there, but i know daddy did it that way to keep me from remembering his dying but to remembre the better times. daddy and i have alwawys been the exception to teh rules though. we never have done things the way it is supposed to be done, whether it is symptoms of a disease, or getting a job, we always did things different, and i am still doing things out of norm to this day. i can say that daddy went peacefully and wasnt in pain and went quicdkly. even if the nh had called me when the dying process started and we were only 10 minutes away we wouldnt have made it in time to see him. that is why i know he died his way. i did go to the nh after his death to say good bye,. good luck and hugs. sharon a-m 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: My Sister Joyce To: LBDcaregivers Date: Saturday, May 9, 2009, 10:21 PM Hi June, I just want to add to what Imogene replied. When Mom was in the dying process the hospice nurses explained that when the body is shutting down the pain receptors in the brain are close to the first to be shut down. Therefore, the dying person does not feel pain from the organs shutting down but it causes an agitation and the liquid morphine sulphate (Roxinol) takes that agitation away so that there is no discomfort from this process. the stomach starts to shut down and then the person isn't taking any more food or water. Sounds like Joyce is eating so that is a sign that she is not 'near the end' as in a few days. Hospice will always make sure that the proper medications to deal with each stage of the dying process is started and adjusted at the right times to make Joyce's final days very peaceful. It sounds like the med change that Joyce had has brought her back to eating and talking, etc. Remember to take care of yourself so that you can be strong to be with Joyce when she needs you. It sounds like you are certainly her favorite, and while it puts added burden on your life right now, I would consider that an honor - something that you can be very proud of. God bless you and Joyce, Joan > > Hello dear June, > > Did she walk when she went to Clyde's house? Also, she was able to tell > you which place she liked better. Think of it, If Joyce was able to go to > Clyde's house and could tell you that she liked WW better, she is not at the > end yet. > > Usually at the end, the LO can no longer get up. They very often can't > talk. They can't eat solids. To me it sounds as if she has gotten better with > medicine change. > > A person at the end stage has fever, is very sick, and has very > fluctuating blood pressure. Usually it nearly drops out of sight. When it is the end > the person's breathes are fast, irregular, and shallow. The feet and hands > may display purple blotches. Yes, at the end there is pain from the organs > and body as a whole shutting down. > > Believe me, the nurses will let you know when it is the end. Hospice will > provide Morphine to relieve any pain, and allow the person to die with > dignity. > > Others may tell you more, or clarify what I have said. I believe you can > relax about Joyce just now. But, I will say you are one fine advocate. I > wish I had you on my team. > > Love with a smile, > Imogene > > Caregiver for my True Texas Gentleman Husband. Diagnosed with AD in 2005. > And then, with LBD 2006. > A happy personality is contagious. Infect someone today. > Yours Truly > > > In a message dated 5/9/2009 5:20:36 P.M. Central Daylight Time, > junekeeble@. .. writes: > > Dear Lin, , Imogene, and all my friends. I wanted to give you an > update on Joyce's condition. Since coming off the Abilify and Xanax, her leg > stiffness is so much better but her trembling may be a little worse. > Yesteday, she was in such a happy mood. Her husband could not believe the > difference. He said he and Joyce had a great, sensible conversation for the > first time in a long time. I spent the afternoon with her today, and I'm so > glad that I did. Clyde took her home today for about 2.5 hours and I think > that was a mistake. I asked Joyce if she had a good time at " Clyde's " home > and she said, " not really. " " It was not what I thought it would be. " I then > asked her which home she liked the best, Clyde's home or her home at > Wesley Woods. She said she likes her home at WW better. I Just don't know what > to expect in the coming months. When I walked into her room, she said she > had been crying and I asked her why and she said she was crying because she > couldn't find me. I really don't know what to do. She begged me to take > her to my house. She said she couldn't do anything at WW and if I brought > her to my house, she would cook, clean, and do anything I wanted to do. I > just told her that I live in a two story house and the stairs might be > dangerous. She said she was going to ask Clyde to bring her to me house anyway. > She appears to be losing weight and appears to be extrenekt weak even > though she is not as stiff. I think her doctor meant that she may have to be > sedated if he can't control her halllucinations, which aren't bad athis time. > I don't like this idea at all. CAN ANY OF YOU TELL ME WHAT TO EXPECT IN > THE LAST STAGES. IF SHE IS IN PAIN, WHERE IS THE PAIN COMING FROM? IS IT > BECAUSE MAJOR ORGANS WILL SHUT DOWN AND CAUSE PAIN? ANYTHING YOU CAN TELL ME > WILL BE GREAT SO THAT i CAN PREPARE MYSELF, AS WELL AS HER FAMILY. > Love to all, > June > > > > ************ **A Good Credit Score is 700 or Above. See yours in just 2 easy > steps! > (http://pr.atwola. com/promoclk/ 100126575x122182 3232x1201398636/ aol?redir= http://www. freecreditreport .com/pm/default. aspx?sc=668072 & hmpgID=62 & bcd= > May5909footerNO62) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 Hello Lin, I always appreciate what you write, and thank you for turning our attention to things in 's List about end stage. There is so much there, yet I didn't think about End Stage being in the List. There is a question bothering me. What is the top limit a patient should have for Seroquel? I don't want to overdo any medicine, as Zoloft was done in my husband's case. Forewarned is forearmed. Thank you dear friend, Love with a smile, Imogene Caregiver for my True Texas Gentleman Husband. Diagnosed with AD in 2005. And then, with LBD 2006. A happy personality is contagious. Infect someone today. Yours Truly In a message dated 5/10/2009 9:18:08 P.M. Central Daylight Time, lprattbethany@... writes: Dear June, Thank you so much for sharing this news with us. Hopefully you know we all care so much about you, Joyce and all your family. While I'm not there in person - and can't give a clinical perspective anyway - it sounds from what you wrote that Joyce is becoming somewhat more stabilized on her meds. Is it correct this is one of the first " sensible " conversations " she and Clyde have had for awhile? If so, that is truly a greeat sign. A couple of thoughts: O I assume the weaning-off of Xanax and Abilify is still going on. And wasn't she also on Risperdol, which we know she needs to come off of, too? This process goes slow of necessity, so any improvement this early on is to be celebrated. O During the weaning off and getting adjusted to what I think was going to be an increased dose of Seroquel (as a support to the weaning, to help maintain calm, and to relieve hallucinations), Joyce is bound to be weak, tired and emotional. This is to be expected. Her brain and body will take time to adjust. O If the MD hasn't already ordered it, ask him for PT, OT and therapeutic activities orders for Joyce. This will be helpful from mulitple perspectives: physical strengthening, time for socializing with others, meaningful use of time (not just waiting for...), improved sense of self and abilities. O Much of what Joyce says sounds pretty normal to me: I would rather come home with you, too, than be in the NH. I too would want my/our life back, and I'd offer to cook, clean, do whatever you wanted to get it back. This was a common theme with my mom for years after I made her leave home and come be with me. Not being home with loved ones is a great loss and no one can or should try to ationalize it away. Your responses to Joyce will be loving as always, stated simply, and very reassuring about your always loving her, always being sisters, always enjoying your special times together - and that you need her. You can find activities to do together in her room or in Activities Dept space at the NH to simulate some of what she may miss - folding laundry, sharing a special trea, making no-bake desserts, doing each other's hair, dusting her furniture, discussing a ladies magazine article, etc. Like all of us, Joyce probably needs to be needed and certainly needs frequent reassurance she is loved. Logic - all the reasons she can't come home with you - probably won't be too helpful: our LOs don't think that way much anymore. O Her crying, missing you, thinking you are lost, is so sad for her and for you to hear, but again pretty common. Her brain fog might be lifting a bit, and she's more aware of her surroundings and that you aren't there. Could be an effect of the drug changes. Could be not quite enough Seroquel . Etc. Again, your patience, love and reassurance will be helpful, and I assume the MD will be continually monitoring meds to ensure she has a steady level of Sero in her system. You don't want her sedated, of course, but not distraught either. O Have one of the nurses or aides Joyce likes weigh her. This should be done as a matter of record, anyway. Good nutrition and hydration during this meds change period is vital. Get her whatever she likes - the MD can order milkshakes every meal if she likes them - mix with Ensure for higher calorie count. I assume the NH lets you bring in food - get her what she likes and eat with her. Or if there's a snack shop, treat her. Our nurses say " make food fun " and they're right. Joyce has been out of it and all those meds made her uninterested in food, so help get her jump-started with goodies she'll enjoy. O Only you in the family can make decisions about taking Joyce out during this stabilizing period: it might be easier on her a bit later when all meds are working at optimal levels. Maybe you could help her husband find things to do with Joyce at the NH while she gets her strength back, but again, you all are there and able to see if she can physically and emotionally handle the shifts back and forth. On general principles, it's not automatically a bad thing for folks to go back to their own homes: the question is benefit vs. harm. O Is Joyce still hallucinating? If yes, minimally or a lot? You say they aren't bad how, so I'm speculating the past weeks/months of them have been due mostly to the bad meds and not to the disease. Once all 3 bad meds are totally out of her system, and she is getting the proper dosage of Sero, and the LBD meds aren't changed, you will see if any further adjustments are needed. If she is not hallucinating now, you can set aside that concern for a bit while the MD, NH staff and the family work on building up her physical strength and provide lots of emotional support. O What dosage Sero is Joyce on now? Most likely, given her frail physical state, there will be room to increase it in future if needed should hallucinations reappear. If that time comes, don't let the MD give the same old bad meds. Imogene gave you good input re " end stages. " It just doesn't sound as if Joyce is there right now, although it appeared so with that bad mix of meds she was on. You can find links at our site to caregivers' ideas about end stages from their own experiences, and there is some clinical literature too. The proper meds can keep our LOs out of pain now when needed and certainly at end of life. With continued proper care, Joyce need not ever be in physical or emotional pain. I can't " link " from my work computer here, but or another friend can send you those. O June, please try to focus on how Joyce is doing right now and enjoy this time together. She's coming out of a prolonged and bad experience, and all of you are so fortunate to have what seems like another opportunity to be with each other. Please stay in touch and let us know how the weaning is going and what you get the MD to order for Joyce. I hope you are recovering well from the fall, and I send much love. Lin Subject: My Sister Joyce To: LBDcaregivers Date: Saturday, May 9, 2009, 5:20 PM Dear Lin, , Imogene, and all my friends. I wanted to give you an update on Joyce's condition. Since coming off the Abilify and Xanax, her leg stiffness is so much better but her trembling may be a little worse. Yesteday, she was in such a happy mood. Her husband could not believe the difference. He said he and Joyce had a great, sensible conversation for the first time in a long time. I spent the afternoon with her today, and I'm so glad that I did. Clyde took her home today for about 2.5 hours and I think that was a mistake. I asked Joyce if she had a good time at " Clyde's " home and she said, " not really. " " It was not what I thought it would be. " I then asked her which home she liked the best, Clyde's home or her home at Wesley Woods. She said she likes her home at WW better. I Just don't know what to expect in the coming months. When I walked into her room, she said she had been crying and I asked her why and she said she was crying because she couldn't find me. I really don't know what to do. She begged me to take her to my house. She said she couldn't do anything at WW and if I brought her to my house, she would cook, clean, and do anything I wanted to do. I just told her that I live in a two story house and the stairs might be dangerous. She said she was going to ask Clyde to bring her to me house anyway. She appears to be losing weight and appears to be extrenekt weak even though she is not as stiff. I think her doctor meant that she may have to be sedated if he can't control her halllucinations, which aren't bad athis time. I don't like this idea at all. CAN ANY OF YOU TELL ME WHAT TO EXPECT IN THE LAST STAGES. IF SHE IS IN PAIN, WHERE IS THE PAIN COMING FROM? IS IT BECAUSE MAJOR ORGANS WILL SHUT DOWN AND CAUSE PAIN? ANYTHING YOU CAN TELL ME WILL BE GREAT SO THAT i CAN PREPARE MYSELF, AS WELL AS HER FAMILY. Love to all, June ------------------------------------ Welcome to LBDcaregivers. Yahoo! Groups Links [Non-text portions of this message have been removed] ------------------------------------ Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2009 Report Share Posted May 11, 2009 June K, I bet she would love it if you just reassure you will always find her! They need to know they are not abandon. And you are being the best sister ever. Hugs, Donna R Caregiver for Mom for 3 years and 4th year in a nh. (In MI) She was almost 89 when she died in '02. No dx other than mine. My Sister Joyce Dear Imogene, Thank you so much for your encouragement regarding Joyce. She can walk short distances but gets tired quickly. She didn't want to eat dinner tonight so we jut gave her Ensure and some flavored water. She appears to have lost a little weight but I'm not sure. I tried to get her to stand on the scales so I could weigh her but she wouldn't cooperate. Yes, I too, don't think it is the end for Joyce yet but she is so very weak. She did great yesterday talking with Clyde but today was a down day.Sometimes she talks about dying. It's hard to explain to her but I told her that since we are Christians, we will never die. Christ defeated death on the cross. Well, I'll go to bed now. Thank you again Imogene, my friend. I don't know where I'd be without this wonderful group of caregivers who have so much in common. Love, June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2009 Report Share Posted May 11, 2009 Hi Lin, I will try to answer your questions but, first, I have some great news. You should see the change in Joyce! She can get up from her chair, she can sit down in her chair, she can walk - ALL UNASSISTED! Her husband Clyde, is elated as we all are. She is back to smiling and eating again. Pray that it will last. Thank you and others on this board for convincing me to get her off Abilify and Xanax. It hasn't seemed to bother her yet, the weaning off, I pray that it doesn't. I had the nurse show me her chart and in big letters on the front, it reads, NO ABILIFY OR XANAX FOR JOYCE FINCHER! Do you think they know that I mean business. O I assume the weaning-off of Xanax and Abilify is still going on. And wasn't she also on Risperdol, which we know she needs to come off of, too? This process goes slow of necessity, so any improvement this early on is to be celebrated. BELIEVE ME, WE ARE CELEBRATING. JOYCE WAS ON RISPERDOL RIGHT AFTER SHE ENTERED WW LAST AUGUST BUT WAS NOT ON IT LONG. D/C SEPT. 08. O During the weaning off and getting adjusted to what I think was going to be an increased dose of Seroquel (as a support to the weaning, to help maintain calm, and to relieve hallucinations), Joyce is bound to be weak, tired and emotional. This is to be expected. Her brain and body will take time to adjust. JOYCE IS ON 100 MG SEROQUEL AT BEDTIME. O If the MD hasn't already ordered it, ask him for PT, OT and therapeutic activities orders for Joyce. This will be helpful from mulitple perspectives: physical strengthening, time for socializing with others, meaningful use of time (not just waiting for...), improved sense of self and abilities. YES, JOYCE GOES TO PT AND OT. SHE ALSO GOES FOR LITTLE HIKES WITH HER GROUP WHICH SHE COULD NOT DO WHILE ON ABILITY. O Much of what Joyce says sounds pretty normal to me: I would rather come home with you, too, than be in the NH. I too would want my/our life back, and I'd offer to cook, clean, do whatever you wanted to get it back. This was a common theme with my mom for years after I made her leave home and come be with me. Not being home with loved ones is a great loss and no one can or should try to ationalize it away. Your responses to Joyce will be loving as always, stated simply, and very reassuring about your always loving her, always being sisters, always enjoying your special times together - and that you need her. You can find activities to do together in her room or in Activities Dept space at the NH to simulate some of what she may miss - folding laundry, sharing a special trea, making no-bake desserts, doing each other's hair, dusting her furniture, discussing a ladies magazine article, etc. Like all of us, Joyce probably needs to be needed and certainly needs frequent reassurance she is loved. Logic - all the reasons she can't come home with you - probably won't be too helpful: our LOs don't think that way much anymore. TODAY, JOYCE AND I WORKED IN HER CLOSET. WE PUT AWAY THE WINTER THINGS AND BROUGHT OUT THE SPRING AND SUMMER THINGS AND SHE ENJOYED THAT. WHEn CLYDE CAME, SHE TOLD HIM WHAT WE HAD DONE AND WAS SO PROUD. O Her crying, missing you, thinking you are lost, is so sad for her and for you to hear, but again pretty common. Her brain fog might be lifting a bit, and she's more aware of her surroundings and that you aren't there. Could be an effect of the drug changes. Could be not quite enough Seroquel . Etc. Again, your patience, love and reassurance will be helpful, and I assume the MD will be continually monitoring meds to ensure she has a steady level of Sero in her system. You don't want her sedated, of course, but not distraught either. SHE IS SO HAPPY RIGHT NOW, SMILING AND TALKING SENSIBLY. O Have one of the nurses or aides Joyce likes weigh her. This should be done as a matter of record, anyway. Good nutrition and hydration during this meds change period is vital. Get her whatever she likes - the MD can order milkshakes every meal if she likes them - mix with Ensure for higher calorie count. I assume the NH lets you bring in food - get her what she likes and eat with her. Or if there's a snack shop, treat her. Our nurses say " make food fun " and they're right. Joyce has been out of it and all those meds made her uninterested in food, so help get her jump-started with goodies she'll enjoy. I AM GOING TO TAKE CHIC-FIL-A, FRIES AND MILKSHAKE FOR OUR LUNCH TOMORROW. iF THE WEATHE IS NICE, WE WILL HAVE A PICNIC OUTSIDE. O Only you in the family can make decisions about taking Joyce out during this stabilizing period: it might be easier on her a bit later when all meds are working at optimal levels. Maybe you could help her husband find things to do with Joyce at the NH while she gets her strength back, but again, you all are there and able to see if she can physically and emotionally handle the shifts back and forth. On general principles, it's not automatically a bad thing for folks to go back to their own homes: the question is benefit vs. harm. O Is Joyce still hallucinating? If yes, minimally or a lot? You say they aren't bad how, so I'm speculating the past weeks/months of them have been due mostly to the bad meds and not to the disease. Once all 3 bad meds are totally out of her system, and she is getting the proper dosage of Sero, and the LBD meds aren't changed, you will see if any further adjustments are needed. If she is not hallucinating now, you can set aside that concern for a bit while the MD, NH staff and the family work on building up her physical strength and provide lots of emotional support. SHE HAS SMALL HALLUCINATIONS SUCH AS A MAN AT WW LIKES HER. BUT SHE SAID CLYDE WAS HERS AND SHE TOLD THE MAN SO. SHE ALSO TALKS ABOUT OUR LITTLE CHILDREN. O What dosage Sero is Joyce on now? Most likely, given her frail physical state, there will be room to increase it in future if needed should hallucinations reappear. If that time comes, don't let the MD give the same old bad meds. Imogene gave you good input re " end stages. " It just doesn't sound as if Joyce is there right now, although it appeared so with that bad mix of meds she was on. You can find links at our site to caregivers' ideas about end stages from their own experiences, and there is some clinical literature too. The proper meds can keep our LOs out of pain now when needed and certainly at end of life. With continued proper care, Joyce need not ever be in physical or emotional pain. I can't " link " from my work computer here, but or another friend can send you those. NO - IT APPEARS THAT JOYCE IS A LONG WAY FROM THE END. WE ARE HAVING SO MUCH FUN NOW AND, BELIEVE ME, SHE WILL HAVE TO BE RAGING AND IN AWSUL PAIN BEFORE I WOULD ALLOW HER TO BE DRUGGED INTO UNCONCIOUSNESS. O June, please try to focus on how Joyce is doing right now and enjoy this time together. She's coming out of a prolonged and bad experience, and all of you are so fortunate to have what seems like another opportunity to be with each other. Please stay in touch and let us know how the weaning is going and what you get the MD to order for Joyce. I hope you are recovering well from the fall, and I send much love. YES, LIN WE ARE ENJOYING EVERY MINUTE AND HAVING LOTS OF FUN. I'VE COMPLETELY RECOVERED FROM MY FALL AND I FEEL GREAT EXCEPT I MUST GO TO THE DENTIST TOMORROW. UGH! - I'D RATHER EAT A WORM THA GO TO THE DENTIST. THANK YOU SO VERY MUCH FOR STAYING ON ME REGARDING ABILITY AND XANAX. I'LL KEEP YOU POSTED. LOVE, JUNE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2009 Report Share Posted May 11, 2009 June, such a good news posting. Thank you for making my day. I am so relieved for Joyce and you all who love her so. Wow! Her symptoms just didn't ring quite true of LBD. Now we know why. I hope the healing continues. Kudos to you for what you have accomplished for your beloved sister and her family. I certainly hope the doctor and nursing staff have learned a bit about LBD through all this to save another patient from going through the same agony. > > Hi Lin, I will try to answer your questions but, first, I have some great news. You should see the change in Joyce! She can get up from her chair, she can sit down in her chair, she can walk - ALL UNASSISTED! Her husband Clyde, is elated as we all are. She is back to smiling and eating again. Pray that it will last. Thank you and others on this board for convincing me to get her off Abilify and Xanax. It hasn't seemed to bother her yet, the weaning off, I pray that it doesn't. I had the nurse show me her chart and in big letters on the front, it reads, NO ABILIFY OR XANAX FOR JOYCE FINCHER! Do you think they know that I mean business. > > O I assume the weaning-off of Xanax and Abilify is still going on. And wasn't she also on Risperdol, which we know she needs to come off of, too? This process goes slow of necessity, so any improvement this early on is to be celebrated. > > BELIEVE ME, WE ARE CELEBRATING. JOYCE WAS ON RISPERDOL RIGHT AFTER SHE ENTERED WW LAST AUGUST BUT WAS NOT ON IT LONG. D/C SEPT. 08. > > O During the weaning off and getting adjusted to what I think was going to be an increased dose of Seroquel (as a support to the weaning, to help maintain calm, and to relieve hallucinations), Joyce is bound to be weak, tired and emotional. This is to be expected. Her brain and body will take time to adjust. > > JOYCE IS ON 100 MG SEROQUEL AT BEDTIME. > > O If the MD hasn't already ordered it, ask him for PT, OT and therapeutic activities orders for Joyce. This will be helpful from mulitple perspectives: physical strengthening, time for socializing with others, meaningful use of time (not just waiting for...), improved sense of self and abilities. > > YES, JOYCE GOES TO PT AND OT. SHE ALSO GOES FOR LITTLE HIKES WITH HER GROUP WHICH SHE COULD NOT DO WHILE ON ABILITY. > > O Much of what Joyce says sounds pretty normal to me: I would rather come home with you, too, than be in the NH. I too would want my/our life back, and I'd offer to cook, clean, do whatever you wanted to get it back. This was a common theme with my mom for years after I made her leave home and come be with me. Not being home with loved ones is a great loss and no one can or should try to ationalize it away. Your responses to Joyce will be loving as always, stated simply, and very reassuring about your always loving her, always being sisters, always enjoying your special times together - and that you need her. You can find activities to do together in her room or in Activities Dept space at the NH to simulate some of what she may miss - folding laundry, sharing a special trea, making no-bake desserts, doing each other's hair, dusting her furniture, discussing a ladies magazine article, etc. Like all of us, Joyce probably needs to be needed > and certainly needs frequent reassurance she is loved. Logic - all the reasons she can't come home with you - probably won't be too helpful: our LOs don't think that way much anymore. > > TODAY, JOYCE AND I WORKED IN HER CLOSET. WE PUT AWAY THE WINTER THINGS AND BROUGHT OUT THE SPRING AND SUMMER THINGS AND SHE ENJOYED THAT. WHEn CLYDE CAME, SHE TOLD HIM WHAT WE HAD DONE AND WAS SO PROUD. > > O Her crying, missing you, thinking you are lost, is so sad for her and for you to hear, but again pretty common. Her brain fog might be lifting a bit, and she's more aware of her surroundings and that you aren't there. Could be an effect of the drug changes. Could be not quite enough Seroquel . Etc. Again, your patience, love and reassurance will be helpful, and I assume the MD will be continually monitoring meds to ensure she has a steady level of Sero in her system. You don't want her sedated, of course, but not distraught either. > > SHE IS SO HAPPY RIGHT NOW, SMILING AND TALKING SENSIBLY. > > O Have one of the nurses or aides Joyce likes weigh her. This should be done as a matter of record, anyway. Good nutrition and hydration during this meds change period is vital. Get her whatever she likes - the MD can order milkshakes every meal if she likes them - mix with Ensure for higher calorie count. I assume the NH lets you bring in food - get her what she likes and eat with her. Or if there's a snack shop, treat her. Our nurses say " make food fun " and they're right. Joyce has been out of it and all those meds made her uninterested in food, so help get her jump-started with goodies she'll enjoy. > > I AM GOING TO TAKE CHIC-FIL-A, FRIES AND MILKSHAKE FOR OUR LUNCH TOMORROW. iF THE WEATHE IS NICE, WE WILL HAVE A PICNIC OUTSIDE. > > O Only you in the family can make decisions about taking Joyce out during this stabilizing period: it might be easier on her a bit later when all meds are working at optimal levels. Maybe you could help her husband find things to do with Joyce at the NH while she gets her strength back, but again, you all are there and able to see if she can physically and emotionally handle the shifts back and forth. On general principles, it's not automatically a bad thing for folks to go back to their own homes: the question is benefit vs. harm. > > O Is Joyce still hallucinating? If yes, minimally or a lot? You say they aren't bad how, so I'm speculating the past weeks/months of them have been due mostly to the bad meds and not to the disease. Once all 3 bad meds are totally out of her system, and she is getting the proper dosage of Sero, and the LBD meds aren't changed, you will see if any further adjustments are needed. If she is not hallucinating now, you can set aside that concern for a bit while the MD, NH staff and the family work on building up her physical strength and provide lots of emotional support. > > SHE HAS SMALL HALLUCINATIONS SUCH AS A MAN AT WW LIKES HER. BUT SHE SAID CLYDE WAS HERS AND SHE TOLD THE MAN SO. SHE ALSO TALKS ABOUT OUR LITTLE CHILDREN. > > O What dosage Sero is Joyce on now? Most likely, given her frail physical state, there will be room to increase it in future if needed should hallucinations reappear. If that time comes, don't let the MD give the same old bad meds. Imogene gave you good input re " end stages. " It just doesn't sound as if Joyce is there right now, although it appeared so with that bad mix of meds she was on. You can find links at our site to caregivers' ideas about end stages from their own experiences, and there is some clinical literature too. The proper meds can keep our LOs out of pain now when needed and certainly at end of life. With continued proper care, Joyce need not ever be in physical or emotional pain. I can't " link " from my work computer here, but or another friend can send you those. > > NO - IT APPEARS THAT JOYCE IS A LONG WAY FROM THE END. WE ARE HAVING SO MUCH FUN NOW AND, BELIEVE ME, SHE WILL HAVE TO BE RAGING AND IN AWSUL PAIN BEFORE I WOULD ALLOW HER TO BE DRUGGED INTO UNCONCIOUSNESS. > > O June, please try to focus on how Joyce is doing right now and enjoy this time together. She's coming out of a prolonged and bad experience, and all of you are so fortunate to have what seems like another opportunity to be with each other. > > Please stay in touch and let us know how the weaning is going and what you get the MD to order for Joyce. I hope you are recovering well from the fall, and I send much love. > > YES, LIN WE ARE ENJOYING EVERY MINUTE AND HAVING LOTS OF FUN. I'VE COMPLETELY RECOVERED FROM MY FALL AND I FEEL GREAT EXCEPT I MUST GO TO THE DENTIST TOMORROW. UGH! - I'D RATHER EAT A WORM THA GO TO THE DENTIST. > > THANK YOU SO VERY MUCH FOR STAYING ON ME REGARDING ABILITY AND XANAX. I'LL KEEP YOU POSTED. > LOVE, > JUNE > Quote Link to comment Share on other sites More sharing options...
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