Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 Hi Ginny- you wrote: This sure is frustrating! My husband and I feel so powerless to get anything done with the doctors. It seems all we can do presently is watch from afar and be ready to help if needed. I am wondering what the effect of shock treatment would be on someone with LBD? ********* I am not sure what the effects of shock treatments would be for someone with LBD, however, I do know with a very good friend's mom, who was diagnosed Paranoid Schizophrenia, had been damaged mentally from shock treatment. My opinion is I would stay away from shock treatments especially with LBD. Sandie -- Update on my father-in-law, Jim I joined this group about a week ago so that I can help my mother-in-law, Virginia, as my FIL, Jim, probably has LBD. The doctor who had been his attending physician at the hospital was the first to mention the possibility of LBD. Last week Jim saw a geriatric internist for the first time who put him on Lexapro, 5 mg. He has not yet diagnosed Jim with anything else but depression .... which blows my mind. Jim will also be keeping an appointment with a neurologist who treated him at the hospital too. Jim's been on Lexapro for 4 days now. At night he's been getting up, pulling all the bedclothes off the bed, and twirling the sheets around his feet for hours. He stands, holds the sheets, and whirls his hands around and around so that the sheets twirl around his feet. Last night he did this until noon! My MIL wasn't able to get him back to bed or stop him and finally told him that she needed to get her sleep so that she could take care of him and she went to bed. While he twirls the sheets, he makes a sort of chant. Since he began the Lexapro, he has gotten worse at night. My MIL described it as wild. She called the doctor today and he told her to cut the Lexapro into smaller pieces so that he'd only be taking 2.5 mg. He also mentioned the possibility of electric shock treatment and of Jim seeing a psychiatrist. Virginia mentioned that when Jim is coherent, he is capable of carrying on an almost normal conversation. Other times he doesn't even know if anyone is there. This sure is frustrating! My husband and I feel so powerless to get anything done with the doctors. It seems all we can do presently is watch from afar and be ready to help if needed. I am wondering what the effect of shock treatment would be on someone with LBD? Ginny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2005 Report Share Posted March 8, 2005 You wrote: He stands, holds the sheets, and whirls his hands around and around so that the sheets twirl around his feet. Last night he did this until noon! Ginny, my Mom has WILD stuff going on at night too. She helps her uncle work on his tractor, chases kids away from her purse (and hides her checkbook different places) and insists that my Dad is drunk and standing on top of her dresser with a gun! And that was just LAST week! :-) It is so frustrating to see our LO's act so out of character. I don't have any suggestions really but wanted to let you know it's not uncommon for LBD patients to do this. I, too, am astounded that your FIL hasn't been diagnosed with something other than depression. I would say that there is something pretty obvious going on that the doctor's aren't picking up on! Good luck and lots of peace, Update on my father-in-law, Jim I joined this group about a week ago so that I can help my mother-in-law, Virginia, as my FIL, Jim, probably has LBD. The doctor who had been his attending physician at the hospital was the first to mention the possibility of LBD. Last week Jim saw a geriatric internist for the first time who put him on Lexapro, 5 mg. He has not yet diagnosed Jim with anything else but depression .... which blows my mind. Jim will also be keeping an appointment with a neurologist who treated him at the hospital too. Jim's been on Lexapro for 4 days now. At night he's been getting up, pulling all the bedclothes off the bed, and twirling the sheets around his feet for hours. He stands, holds the sheets, and whirls his hands around and around so that the sheets twirl around his feet. Last night he did this until noon! My MIL wasn't able to get him back to bed or stop him and finally told him that she needed to get her sleep so that she could take care of him and she went to bed. While he twirls the sheets, he makes a sort of chant. Since he began the Lexapro, he has gotten worse at night. My MIL described it as wild. She called the doctor today and he told her to cut the Lexapro into smaller pieces so that he'd only be taking 2.5 mg. He also mentioned the possibility of electric shock treatment and of Jim seeing a psychiatrist. Virginia mentioned that when Jim is coherent, he is capable of carrying on an almost normal conversation. Other times he doesn't even know if anyone is there. This sure is frustrating! My husband and I feel so powerless to get anything done with the doctors. It seems all we can do presently is watch from afar and be ready to help if needed. I am wondering what the effect of shock treatment would be on someone with LBD? Ginny Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2005 Report Share Posted March 8, 2005 Ginny- One more bit of information I had learned. Some of the older anti-psychotic and even anti-depression drugs can work in reverse for our LBD loved ones. This played out true with my dad. He had taken Ativan for several months 'before' I learned what it could do to him. In the first few weeks it did seem to help...only to start working in reverse and agitated him more. He would become outraged and litterly out of control. I had him taken off the Ativan as soon as I realized what damage it could do and HAD done. I remember the NH staff, in an unscheduled meeting, asking if I knew why my dad was acting out as he was...insinuating that because he was being taken off Ativan, was why he was acting out - when in reality it was the Ativan and the lasting effect and damage it did to my dad that caused him to act out in complete rage and agitation. In no uncertain terms I told them it was because of the Ativan and the length of time dad had taken it was the ONLY reason he was acting out so often and with such extreme agitation. Again, this is my experience only. Please do keep us updated as to how Jim is doing. These types of behaviors have always peeked my curiosity as my dad really struggled with behaviors. Hugs to you- Sandie and -- Re: Update on my father-in-law, Jim Thank you all for your input on the electric shock idea. I'm aware from reading that I had done in the past on depression that electric shock has been used to treat geriatric depression with some success recently but my gut feeling is that Jim's diagnosis by the doctor isn't accurate and that treating him as though he is suffering from depression only and suggesting electric shock therapy is a bad idea. My husband and I aren't in control of which doctors that my in-laws see. However, we do advise my mother-in-law on which things should NOT be done and she will listen to us on those points. She is somewhat more cautious now about doctors' advice after the recent hospital experience and Jim's reaction to being given Haldol and Ativan. I think also that the continued nighttime agitation is impressing on her that there is something worse than depression going on here. I am going to advise her to get Jim evaluated by a psychiatrist and/or a team of doctors as this doctor had suggested that as an option. Virginia was too ready to believe that the diagnosis of depression was the answer. I don't know if she is ready yet to accept absolutely that the diagnosis is what we had been thinking it was .... LBD. It is extremely annoying as when we were there the week prior to last week we received so much differing advice from " professionals " who then later seemed to be much too imperfect that it becomes almost impossible to know who to trust or where to turn in the medical community. And this is in the Washington, D.C. area where I would think they'd have some very good medical help available. It makes no sense to go back to the hospital where they treated him to ask for further advice as the people there are the ones who have given the advice and recommendations that my in-laws are following currently. And the hospital is where they gave him Haldol and Ativan and would have given him possibly Thorazine if we hadn't stayed overnight to calm him. Ginny > Hi Ginny, > > my goodness, it sounds worrying. > > When my dad was first diagnosed and we told him he had 'Vascular Disease' his one and only FEAR was that the doctors would want to 'examine him in the head' and by this he meant electric shock treatment. > > Our Consultant Physco-Geriatrician was SO SO kind with my dad, gentle, understanding, picked up straight away that my dad wasn't a great coper with things and fed him only very nexessary information on what was happening, told him in no circustances would he require Electric shock therapy, this greatly consoled my dad, our consultant was and is so wise and gentle - this has continued to this day with my dad in hospital. > > I'm not speaking from a medical point of view but I would DEFINITELY not subject Jim to Electric Shock therapy until I had some other opinions, I cannot IMAGINE what it would do to someone suffering from LBD.......what I DO know is that if Jim DOES have LBD then this shock treatment is absolutely no use whatever. > > It's quite clear now that he's definitely got something more than depression, the disturbed sleep thing to that extent is VERY indicative of Lewy Body, I'm not sure about the twirling the sheets and the chanting, but my dad definitely had the restless leg thing and very seldom slept a whole night through especially in the begining. You mention Virginia saying that Jim also appears totally normal in the day sometimes - another strong indication of Lewy Body.......my dad could be so normal sometimes we wondered if it was US with the problems. > > I wrote to you the other day saying that the depression medication was probably a 'ruling out' exercise, but I don't now think you can afford to wait, it annoys me when doctors over the phone tell carers to cut tablets up......my mum used to have this responsibility from time to time (as if her day wasn't quite fraught enough) and she'd be terrified then she'd heard the wrong thing & was doing the wrong thing or was giving the wrong amounts.......if he needs anti-depressant a lower dose should be prescribed, doctors don't seem to realise that to an exhausted carer cutting up medications and remembering specific instructions isn't always easy. > > I think you need to get back on to the hospital where Jim was seen last week and quickly get to someone who can give you a 2nd opinion, meanwhile I wouldn't even entertain any thought of EST till you all know what your dealing with, certainly the suggestion of Jim seeing a Physciatrist is one you should persue - but electric shock treatment - my goodness, they need to know what he has first before they start to treat it in ANY way. > > Good luck - keep in touch. > > Kathleen - Scotland. > Update on my father-in-law, Jim > > > > I joined this group about a week ago so that I can help my > mother-in-law, Virginia, as my FIL, Jim, probably has LBD. The doctor > who had been his attending physician at the hospital was the first to > mention the possibility of LBD. Last week Jim saw a geriatric > internist for the first time who put him on Lexapro, 5 mg. He has not > yet diagnosed Jim with anything else but depression .... which blows > my mind. Jim will also be keeping an appointment with a neurologist > who treated him at the hospital too. > > Jim's been on Lexapro for 4 days now. At night he's been getting up, > pulling all the bedclothes off the bed, and twirling the sheets around > his feet for hours. He stands, holds the sheets, and whirls his hands > around and around so that the sheets twirl around his feet. Last night > he did this until noon! My MIL wasn't able to get him back to bed or > stop him and finally told him that she needed to get her sleep so that > she could take care of him and she went to bed. While he twirls the > sheets, he makes a sort of chant. Since he began the Lexapro, he has > gotten worse at night. My MIL described it as wild. > > She called the doctor today and he told her to cut the Lexapro into > smaller pieces so that he'd only be taking 2.5 mg. He also mentioned > the possibility of electric shock treatment and of Jim seeing a > psychiatrist. > > Virginia mentioned that when Jim is coherent, he is capable of > carrying on an almost normal conversation. Other times he doesn't even > know if anyone is there. > > This sure is frustrating! My husband and I feel so powerless to get > anything done with the doctors. It seems all we can do presently is > watch from afar and be ready to help if needed. I am wondering what > the effect of shock treatment would be on someone with LBD? > > Ginny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 Ginny, I too was frustrated with Dad's doctor not picking up on things and not giving the diagnosis I expected. For many years, Mom was the only one going with Dad to the doctor. When she quit driving and I started taking them to appointments, I learned WHY the doctor wasn't picking up on things: my parents weren't telling the doctor the whole story. They would either say things were " fine " or they would minimize any problems. At a guess, this could be what is happening with your in-laws. LBD is such a tricky thing--they can be right on the ball when they are out in public or at the doctor then turn around and have hallucinations and be totally out of touch as soon as they get home. If you add to that the emotional baggage of any kind of " dementia " and the instinctive desire for the problem to be ANYTHING else, I can see why the doctors might be stuck in the depression rut. Is there any way you or your husband could go with your in-laws to an appointment? I know it is very hard to have any real interaction from a distance. Just some thoughts, Margee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 Those are good thoughts, Margee. I've had the same thoughts including going with them to the doctor's appointment. I had suggested to my MIL that she not sugercoat anything for the doctor and she said she wouldn't. But I wasn't there and don't know what was said and what wasn't said. As the situation continues the way it has with the nighttime agitation and sleep disturbances, I think that my MIL will be telling the doctor everything. And maybe an accurate diagnosis will be figured out as the evidence piles up for the doctor. If not, I can go down there and go to a doctor's appointment with them to see if I can ask questions that maybe aren't being asked and offer information that maybe isn't being offered. Ginny > Ginny, > > I too was frustrated with Dad's doctor not picking up on things and not giving the diagnosis I expected. For many years, Mom was the only one going with Dad to the doctor. When she quit driving and I started taking them to appointments, I learned WHY the doctor wasn't picking up on things: my parents weren't telling the doctor the whole story. They would either say things were " fine " or they would minimize any problems. > > At a guess, this could be what is happening with your in-laws. LBD is such a tricky thing--they can be right on the ball when they are out in public or at the doctor then turn around and have hallucinations and be totally out of touch as soon as they get home. > > If you add to that the emotional baggage of any kind of " dementia " and the instinctive desire for the problem to be ANYTHING else, I can see why the doctors might be stuck in the depression rut. > > Is there any way you or your husband could go with your in-laws to an appointment? I know it is very hard to have any real interaction from a distance. > > Just some thoughts, > Margee > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 Ginny, Another idea would be to prepare a sheet of crib notes, or script to hand the doctor, a head of time. Even when the Mayo doctor asked me about my mother's halucinations, all I could think to tell him was that she almost consistantly sees dad, sitting in his favorite chair, or laying in the bed. Good thing that my wife was there and reminded me. At the spur of the moment, I had forgotten about the really wacky stuff, like the fantom dog she saw hanging by its chain from a tree, or the imaginary migrant workers that pretty much weeded and walked the imaginary soybean field across road for months on end. Even when the ground was tilled black, and later covered with snow, mom still saw them weeding the soybeans. Mom hadn't spoken of the wacky stuff like the migrant bean weeders for a few weeks, and I simply forgot about it too. Dann --- Ginny wrote: --------------------------------- Those are good thoughts, Margee. I've had the same thoughts including going with them to the doctor's appointment. I had suggested to my MIL that she not sugercoat anything for the doctor and she said she wouldn't. But I wasn't there and don't know what was said and what wasn't said. As the situation continues the way it has with the nighttime agitation and sleep disturbances, I think that my MIL will be telling the doctor everything. And maybe an accurate diagnosis will be figured out as the evidence piles up for the doctor. If not, I can go down there and go to a doctor's appointment with them to see if I can ask questions that maybe aren't being asked and offer information that maybe isn't being offered. Ginny > Ginny, > > I too was frustrated with Dad's doctor not picking up on things and not giving the diagnosis I expected. For many years, Mom was the only one going with Dad to the doctor. When she quit driving and I started taking them to appointments, I learned WHY the doctor wasn't picking up on things: my parents weren't telling the doctor the whole story. They would either say things were " fine " or they would minimize any problems. > > At a guess, this could be what is happening with your in-laws. LBD is such a tricky thing--they can be right on the ball when they are out in public or at the doctor then turn around and have hallucinations and be totally out of touch as soon as they get home. > > If you add to that the emotional baggage of any kind of " dementia " and the instinctive desire for the problem to be ANYTHING else, I can see why the doctors might be stuck in the depression rut. > > Is there any way you or your husband could go with your in-laws to an appointment? I know it is very hard to have any real interaction from a distance. > > Just some thoughts, > Margee > > > [Non-text portions of this message have been removed] Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.