Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Mai-Liis, I am sorry for your increasing communication difficulties with Jack. We have a similar situation here. Sometimes, I can predict by the way Harv begins to speak that what will follow will not make sense. I think, " Uh-oh " and brace myself. But there are some good moments, still. I hope you and Jack have them too. Bertha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Mai-Liis So sorry you are faced with the LBD communication - with yourself. My dad is back to rarely talking, so my visits whether 10 minutes or 2 hours is usually me talking, thinking, and answering. Sometimes I start the 20 question process to see if I will (maybe this time) get a response. I just really love hearing his voice as it is so rare that I get to. Guess whether the conversation with my dad makes no sense or does make sense, I consider it a gift just to hear his voice and to know he is still able to form words. Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Mai-Liis So sorry you are faced with the LBD communication - with yourself. My dad is back to rarely talking, so my visits whether 10 minutes or 2 hours is usually me talking, thinking, and answering. Sometimes I start the 20 question process to see if I will (maybe this time) get a response. I just really love hearing his voice as it is so rare that I get to. Guess whether the conversation with my dad makes no sense or does make sense, I consider it a gift just to hear his voice and to know he is still able to form words. Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Sandie, Wish my Mom had half the quiet of your Dad and he had half the conversation she carries on all day......and night. None of it makes a lot of sense but she sure talks. Donna A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Mia Liis, I am sure what Jack said does mean something and somehow he can only express it like that. Mom does that all the time. And now she is making up new words. If I ask her a question, she says, " Ohhh. " Like I just told her some big piece of news. Part of that with her comes from all the times she pretended every thing was fine, and it wasn't. But if she could fool people, I guess she hoped she was fine. Inbetween all Mom's words I sometimes find the answer I am lookig for, but it comes long after I have given up on an appropiate answer. The answer to my question is like a delayed reaction and it takes a while to sink into her head and get it processed. I just kept having to trust she would get me an answer sometime and it might take a while for me to process and understand what she was trying to tell me. Donna A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Mia Liis, I am sure what Jack said does mean something and somehow he can only express it like that. Mom does that all the time. And now she is making up new words. If I ask her a question, she says, " Ohhh. " Like I just told her some big piece of news. Part of that with her comes from all the times she pretended every thing was fine, and it wasn't. But if she could fool people, I guess she hoped she was fine. Inbetween all Mom's words I sometimes find the answer I am lookig for, but it comes long after I have given up on an appropiate answer. The answer to my question is like a delayed reaction and it takes a while to sink into her head and get it processed. I just kept having to trust she would get me an answer sometime and it might take a while for me to process and understand what she was trying to tell me. Donna A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2002 Report Share Posted June 7, 2002 In a message dated 2002-06-06 9:43:49 PM Eastern Daylight Time, MaiLiis@... writes: > Last night I had a long conversation with another caregiver > who was telling me how angry she was that their friends > had abandoned her LO. Jack asked me about it and so I told > him. > He listened to the whole story and then said, " You take your > chooses and you get your pills. " He could not explain what > he meant. > Be thankful he understood the subject...Somewhere in the back of my mind that saying rings a bell, with different words of course.We have had a similar set of occurrences here..for instance, Bud was fiddling with the side of his pants, I asked what the problem was. He replied, " there is something wrong with my cupboard " What he meant was that the pant pocket was inverted but could not find the correct words and substituted. Better still, I was telling someone about a cooking method, and for the life of me I couldn't remember the word microwave...ended up saying, " you know the oven that goes beep, beep when things are ready? " Now that was scary. Ev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2002 Report Share Posted June 7, 2002 In a message dated 2002-06-06 9:43:49 PM Eastern Daylight Time, MaiLiis@... writes: > Last night I had a long conversation with another caregiver > who was telling me how angry she was that their friends > had abandoned her LO. Jack asked me about it and so I told > him. > He listened to the whole story and then said, " You take your > chooses and you get your pills. " He could not explain what > he meant. > Be thankful he understood the subject...Somewhere in the back of my mind that saying rings a bell, with different words of course.We have had a similar set of occurrences here..for instance, Bud was fiddling with the side of his pants, I asked what the problem was. He replied, " there is something wrong with my cupboard " What he meant was that the pant pocket was inverted but could not find the correct words and substituted. Better still, I was telling someone about a cooking method, and for the life of me I couldn't remember the word microwave...ended up saying, " you know the oven that goes beep, beep when things are ready? " Now that was scary. Ev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2002 Report Share Posted June 7, 2002 In a message dated 2002-06-07 12:45:32 AM Eastern Daylight Time, Mandelbh@... writes: > that what will follow will not make sense I have requested, from that Mayo Nurse, the best way to answer when the conversation is gobbledegook, so as not to increase the frustration. Will notify when and if I get a reply. Ev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2002 Report Share Posted June 7, 2002 In a message dated 2002-06-07 12:45:32 AM Eastern Daylight Time, Mandelbh@... writes: > that what will follow will not make sense I have requested, from that Mayo Nurse, the best way to answer when the conversation is gobbledegook, so as not to increase the frustration. Will notify when and if I get a reply. Ev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2002 Report Share Posted June 7, 2002 Ev I agree with your thought on LBD people not being able to come up with the exact word so they subsitute words. I remember when my dad visited the neurologist the dr. had a picture that dad would have to name what was in it. It was a picture of a lady standing near a window, she was doing dishes with several items on the counter. Dad had trouble coming up with the correct word for some items in the picture. For instance, one time he was trying to come up with the word " plate " and said everything but that word. He even said, " You know, the thing you put food on, uh, saucer, no, um...... " I asked the neuro. about this and he said the thought process is affected with LBD. With LBD they know how to respond, just can't always find the correct word to use so they often substitute.....therefore, making a sentence or conversation jumbled. Even in the nh, I asked dad about 1 month ago what the picture of an airplane was.....his response was, " Car, no, um, goes in the air..... " I helped him with " airplane " and he instantly said YES. It was such a struggle for him and there was a definate sense of peace on his face after he realized the correct word. I can only imagine how this must feel inside my dads thoughts..... Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2002 Report Share Posted June 7, 2002 Ev I agree with your thought on LBD people not being able to come up with the exact word so they subsitute words. I remember when my dad visited the neurologist the dr. had a picture that dad would have to name what was in it. It was a picture of a lady standing near a window, she was doing dishes with several items on the counter. Dad had trouble coming up with the correct word for some items in the picture. For instance, one time he was trying to come up with the word " plate " and said everything but that word. He even said, " You know, the thing you put food on, uh, saucer, no, um...... " I asked the neuro. about this and he said the thought process is affected with LBD. With LBD they know how to respond, just can't always find the correct word to use so they often substitute.....therefore, making a sentence or conversation jumbled. Even in the nh, I asked dad about 1 month ago what the picture of an airplane was.....his response was, " Car, no, um, goes in the air..... " I helped him with " airplane " and he instantly said YES. It was such a struggle for him and there was a definate sense of peace on his face after he realized the correct word. I can only imagine how this must feel inside my dads thoughts..... Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2002 Report Share Posted June 7, 2002 Ev, I must say I think 'cupboard' for pocket is very clever! (Sorry, if you don't think so.) And, that thing that goes 'beep beep'? I do that kind of thing all the time! It's called stress. I also did it as a young single mother of 4 children. Last night Jack said he had finally figured out why it was so hot in front of the house! (Apparently, he finds it hotter than the back of the house.) The chlorine in the neighbor's pool is making it hot! I asked him what made him think so.....and he said because he could smell it. I have no problem rolling with the word substitutions and can almost always know guess at his meaning. It is this latest development in his thought process which is throwing me. His illness appears to be going faster than what I can keep up with and learn to live with. It's only been 2 years since his first hallucinations, and less than a year for any PD symptoms. Is this a bit unusual? Mai-Liis of occurrences here..for instance, Bud was fiddling with the side of his pants, I asked what the problem was. He replied, " there is something wrong with my cupboard " What he meant was that the pant pocket was inverted but could not find the correct words and substituted. Better still, I was telling someone about a cooking method, and for the life of me I couldn't remember the word microwave...ended up saying, " you know the oven that goes beep, beep when things are ready? " Now that was scary. Ev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2002 Report Share Posted June 7, 2002 Ev, I must say I think 'cupboard' for pocket is very clever! (Sorry, if you don't think so.) And, that thing that goes 'beep beep'? I do that kind of thing all the time! It's called stress. I also did it as a young single mother of 4 children. Last night Jack said he had finally figured out why it was so hot in front of the house! (Apparently, he finds it hotter than the back of the house.) The chlorine in the neighbor's pool is making it hot! I asked him what made him think so.....and he said because he could smell it. I have no problem rolling with the word substitutions and can almost always know guess at his meaning. It is this latest development in his thought process which is throwing me. His illness appears to be going faster than what I can keep up with and learn to live with. It's only been 2 years since his first hallucinations, and less than a year for any PD symptoms. Is this a bit unusual? Mai-Liis of occurrences here..for instance, Bud was fiddling with the side of his pants, I asked what the problem was. He replied, " there is something wrong with my cupboard " What he meant was that the pant pocket was inverted but could not find the correct words and substituted. Better still, I was telling someone about a cooking method, and for the life of me I couldn't remember the word microwave...ended up saying, " you know the oven that goes beep, beep when things are ready? " Now that was scary. Ev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2002 Report Share Posted June 7, 2002 Good for you, Sandie. I think you have a good attitude! I guess, maybe....maybe...I could manage gratitude for Jack talking at all if we weren't still on our honeymoon. I have totally accepted all the problems with my schizophrenic son.....but I've had 44 years to learn how. I am still shaking from my dashed expectations when Jack and I were married less than 4 years ago. I sure would like to get much speedier with learning how to deal with this. Mai-Liis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2002 Report Share Posted June 7, 2002 Mai-Liis Wow, married 4 yrs and hallucinations for 2 of that. Personally I think you are doing a wonderful job handling all that life has given you. You have stuck it out, have been doing research for answers, and are reaching out for support. Great job!! And to all the group........had a message left on my cell phone that the doctor who oversee's the residents at the nh saw my dad today. Well, she notated that dad has been more emotional and crying lately. Also she notated that dad has been more aggressive lately. Therefore, she has put in an order to have dad seen by the psychiatrist that oversee's the residents. Keep in mind, the regular dr. fully admitted she knows nothing about LBD and is basically following my lead. Now she feels dad needs to be seen by another dr. that I can only hope knows something about this disease. I called the nh back and told them that " Being power of attorney over medical decisions, my dad will NOT be seen by a psychiatrist without me being there, and will NOT be prescribed any medications without my approval first. " Also, I asked if there was possibly a neurologist that could be called in to view my dad, of course with me being there. They are supposed to get back with me on Monday. This just never really ends. Can only imagine what my dad is going through.....I must admit I will spend time kneeling tonight asking for some answers and more strength. Any comments and/or suggestions would be greatly appreciated. Thank you! Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2002 Report Share Posted June 7, 2002 Mai-Liis Wow, married 4 yrs and hallucinations for 2 of that. Personally I think you are doing a wonderful job handling all that life has given you. You have stuck it out, have been doing research for answers, and are reaching out for support. Great job!! And to all the group........had a message left on my cell phone that the doctor who oversee's the residents at the nh saw my dad today. Well, she notated that dad has been more emotional and crying lately. Also she notated that dad has been more aggressive lately. Therefore, she has put in an order to have dad seen by the psychiatrist that oversee's the residents. Keep in mind, the regular dr. fully admitted she knows nothing about LBD and is basically following my lead. Now she feels dad needs to be seen by another dr. that I can only hope knows something about this disease. I called the nh back and told them that " Being power of attorney over medical decisions, my dad will NOT be seen by a psychiatrist without me being there, and will NOT be prescribed any medications without my approval first. " Also, I asked if there was possibly a neurologist that could be called in to view my dad, of course with me being there. They are supposed to get back with me on Monday. This just never really ends. Can only imagine what my dad is going through.....I must admit I will spend time kneeling tonight asking for some answers and more strength. Any comments and/or suggestions would be greatly appreciated. Thank you! Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 >Hi Sandie, I think you did the exact right thing by insisting on being at these appointments and letting the staff know you would be monitoring the med decisions. I think it's important that you know the documentation of the behaviors (crying and aggressiveness) - to me this could be symptoms of depression or it could be that the nh staff needs more information on how to handle situations with your dad. For example, my husband sometimes resists help or just refuses to do something - so unless it's a matter of safety, I find that if I back off and wait a half hour or so; he'll be ready to do whatever by then (or he's had the chance to consider that it was his decision and he's in charge - bwhaha - you know, he sits in his hospital bed and says it's good to be king). If I were to press the issue right at the time, my husband would be aggressive. Be prepared - it's tough to be the only person in a group of medical professionals saying 'no, this isn't good for an LBD patient'. And I would prefer a neurologist to a psychiatrist eval too. I think this is what really irritates me about the nursing home recommendations - those making the recommendation think that it is easier on the caregiver. I don't. I think all it does is change the setting in which we still have to deal with LBD and complicates the decision making process and frustrates the caregiver that knows a person with LBD isn't going to accommodate the nursing home routine. ~lula Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 >Hi Sandie, I think you did the exact right thing by insisting on being at these appointments and letting the staff know you would be monitoring the med decisions. I think it's important that you know the documentation of the behaviors (crying and aggressiveness) - to me this could be symptoms of depression or it could be that the nh staff needs more information on how to handle situations with your dad. For example, my husband sometimes resists help or just refuses to do something - so unless it's a matter of safety, I find that if I back off and wait a half hour or so; he'll be ready to do whatever by then (or he's had the chance to consider that it was his decision and he's in charge - bwhaha - you know, he sits in his hospital bed and says it's good to be king). If I were to press the issue right at the time, my husband would be aggressive. Be prepared - it's tough to be the only person in a group of medical professionals saying 'no, this isn't good for an LBD patient'. And I would prefer a neurologist to a psychiatrist eval too. I think this is what really irritates me about the nursing home recommendations - those making the recommendation think that it is easier on the caregiver. I don't. I think all it does is change the setting in which we still have to deal with LBD and complicates the decision making process and frustrates the caregiver that knows a person with LBD isn't going to accommodate the nursing home routine. ~lula Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 In a message dated 6/7/02 9:33:22 PM Central Daylight Time, MaiLiis@... writes: > His illness appears to be going faster than what I can keep up with and > learn to live with. It's only been 2 years since his first hallucinations, > and less than a year for any PD symptoms. Is this a bit unusual? I've heard of some cases moving very rapidly. But it's only in the past few months that I've heard you express concerns about how fast, and is sounds like it's picking up steam. So sorry. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 In a message dated 6/7/02 9:33:22 PM Central Daylight Time, MaiLiis@... writes: > His illness appears to be going faster than what I can keep up with and > learn to live with. It's only been 2 years since his first hallucinations, > and less than a year for any PD symptoms. Is this a bit unusual? I've heard of some cases moving very rapidly. But it's only in the past few months that I've heard you express concerns about how fast, and is sounds like it's picking up steam. So sorry. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 In a message dated 6/7/02 10:43:52 PM Central Daylight Time, sanclown@... writes: > has put in an order to have dad seen by the psychiatrist that oversee's the > residents. This is good news, Sandie. I agree with insisting on being there and also being party to the decision about which meds to try. For what it's worth, unless your dad is having specifically neurological problems, a good psychiatrist, especially geriatrically oriented, could be the better move at this point. I say this after tracking down the Cognitive Neurologist we had at s Hopkins. We had several lengthy conversations, and during the last one he told me that given my husband's considerable decline over the last few months, he would have referred us to a geriatric psychiatrist at this point. Bob doesn't have behavioral " problems " as such, but I think with what you've described about your dad, the psychiatrist might be the better bet at this point. (NOW, you may already have posted more about this, but I am still days behind on posts . . . :-) ) I'll be looking forward to see what pans out. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 In a message dated 6/7/02 10:43:52 PM Central Daylight Time, sanclown@... writes: > has put in an order to have dad seen by the psychiatrist that oversee's the > residents. This is good news, Sandie. I agree with insisting on being there and also being party to the decision about which meds to try. For what it's worth, unless your dad is having specifically neurological problems, a good psychiatrist, especially geriatrically oriented, could be the better move at this point. I say this after tracking down the Cognitive Neurologist we had at s Hopkins. We had several lengthy conversations, and during the last one he told me that given my husband's considerable decline over the last few months, he would have referred us to a geriatric psychiatrist at this point. Bob doesn't have behavioral " problems " as such, but I think with what you've described about your dad, the psychiatrist might be the better bet at this point. (NOW, you may already have posted more about this, but I am still days behind on posts . . . :-) ) I'll be looking forward to see what pans out. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 In a message dated 6/8/02 9:21:27 AM Central Daylight Time, lelca@... writes: > I think this is what really irritates me about the nursing home > recommendations - those making the recommendation think that it is easier > on the caregiver. I don't. I think all it does is change the setting in > which we still have to deal with LBD and complicates the decision making > process and frustrates the caregiver that knows a person with LBD isn't > going to accommodate the nursing home routine. AMEN, Lula! It scares the willies out of me to consider a NH for my husband. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 The neurologist who diagnosed my dad said the progression rate for LBD is much quicker than Alzheimers. He said a progression rate of 5-7 years, although everyone will go through this at a different rate. My heart truly goes out to you Mai-Liis. Plus, the social worker called me yesterday to talk about the upcoming psychiatrist meeting. She said she knows my concerns about being present when the psych. sees my dad. I told her that I WILL BE THERE. She said sometimes the psych. will want to meet with the patient alone, as sometimes the patient will " act " differently when family is around. After much forcing, I ended with " Listen, I am power of attorney over dads medical decisions, I WILL BE in the meeting the WHOLE time or there WON'T be a meeting! Now are we clear? " Of course I told her a few other things and feel we were under a mutual understanding by the time we hung up......arghhhhhh!!! Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
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