Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 Carol, You really make me laugh out loud.Its so nice to get some humor out of our lbd experiences.Please keep it up and please never start charging for it.Thank you for the laughs. Ron adhd5464 wrote: Okay, i am glad you are not holding the bag here, and that everyone is on the same page. too often, the folks in leftfield are there to throw 20/20 hindsight monkey wrenches into the game on Monday mornings. You got all that, right? So, at least that is not the case with your family. I am thinking maybe frosting some of the breath-freshening dog bones with Scope flavored frosting. Lay out a pretty plate, and see what happens. You obviously have done all of the things we might have suggested, and we do know about brushing the sink, knuckles, and hair, and calling it " done " . So, I am thinking the dog treats for dental health. You are interested in removing plaque, and you can't get the brush in. And who knows, she may then roll over and want her tummy scratched. Or, inject a little Scope into a grape. would she chew on a washcloth? What might she do with a teething toy? You get the points today for stumping the panel. You have already tried a plethora of ideas, so now we will play with the ridiculous while granny's teeth deteriorate. At least Millie's teeth come out, so I can clean them while she is sleeping. Would grandma chew some sugarless gum? and, finally....At least an elephant isn't likely to take a dump in her mouth! i am trying here! OXOX, Carol > > The unfortunate problem about Grandma's teeth issue is she THINKS she's already doing it > right! She refuses to use mouth wash and she won't put those little pink foam things in her > mouth. She takes the toothbrush and puts soap on it or toothpaste then scrubs her hands > with it or scrubs the sink with it or rubs it on her hands or rubs it together with her hair > brush. It never gets anywhere near her mouth. But when I try to help or gently correct her > she gets angry and either says " I already did it! " or " Listen missy, I've been doing this since > before you were born! leave me alone! " or " I AM brushing my teeth! " I can't convince her to > try it my way or a different way. She thinks how she is doing it is the way its supposed to be > done and thats all there is to it. > I don't know what it is but she's getting more and more angry/mean/belligerent about that > and everything else lately. We've had her tested for UTI and she is clear. Thats why I'm so > worried about the teeth thing. I'm really wondering if the bacteria build up in her mouth is > contributing to her bad attitude lately. > Emma > RON --------------------------------- Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 love it when you guys laugh! laughs are few and far between! You know i do best when i can bounce off what others have written. Anything that takes are minds off the rollercoaster is important. LBD takes too much from each of us as it is. If we can laugh at its expense, we win! Carol > > > > > > Dear Imogene- > > > > > > Wanting so badly to reach through the computer and give you a big > > hug. > > > > > > Thank you for sharing this letter with us. This truly paints a > > vivid > > > picture. > > > > > > Love and lots of hugs- > > > > > > Sandie > > > > > > ÃÆ'¯Â»Â¿Des Moines, IA > > > dad, Merle, passed away from LBD 9-20-02, age 65 > > > mum, Jo, (MIL) passed away from LBD 4-29-07, age 78 > > > > > > > > > > > > > > > -- Letter I wrote to my children. All about > > our lives > > > as of now > > > > > > Hi, all o' y'all young'uns, > > > > > > Don't you wish? Being young is so nice. I do hope all of you had a > > > very good time off from you respective jobs and/or school. But, > most > > > of all I hope all of you are well. Please let me know if you > aren't. > > > > > > Of course the City had a blast here last night, but surprisingly > not > > > around our house. I heard nothing going on. No fire crackers. Oh > > yes, > > > I did hear a lot of extra ambulances passing with sirens blaring. > > > But, we don't even notice them, that is why I almost forgot them. > We > > > do kind of like being on a busy street, because it lets us know > > there > > > are people alive and moving around out there. We actually have > > > something to talk about once in a while from the activity we seen. > > > It's less boring. > > > > > > Don had a blast in his room last night, from all the partying > going > > > on. He was ready to fight them. He didn't like their partying in > his > > > room and down the hall. It was at least 4 or 5 people, (All > > > hallucinations.) Also he had very bad chest pain from getting > cold, > > > that is the second time this winter. Tonight is when it's supposed > > > to get really cold. > > > > > > We went to the Allergist, and she was adamant, in a nice way, > about > > > our getting this carpet out and getting filtration. She also told > me > > > how my allergies are affecting my lungs. She kept me and Don in > the > > > room a long time and really talked to me. She wants to see me for > > the > > > third time in seven days. I told her I thought the allergies were > > > just an aggravation, and not life threatening, so I just avoided > > what > > > I could and lived with the rest. She told me how it is causing my > > > sleep Apnea, and high blood pressure, and how my head allergies > are > > > going to my chest, which is ruining my lungs. It is all I can do > to > > > keep them clean. My ability to breath is getting less with each > > test. > > > The last test was 85, now it is 79. > > > > > > The Doctor said, " It is much harder on you than you know. " When > > > allergens trigger Asthma, then that makes a far worse situation > that > > > only adds to the Chronic Eosenophilia Pneumonia. She told me, " You > > > have severe Allergies. " I asked her to repeat what she had said, > and > > > she said it again. Yes, Don and I both heard her. She said, " It > will > > > exhaust you, and leave you feeling drained. " No kidding, as if I > > > didn't know that already. > > > > > > It is all I can do to get us to doctors, and pick up drugs. Thrift > > > store shopping is out. And we loved browsing in them. But, the > > > strength isn't there. I wonder why the lung doctors have never > said > > > anything about allergies? I certainly told them. > > > > > > Don has started to rearrange things, and has left piles of clothes > > > everywhere in his room. That is not like him. On one hand he is > neat > > > and on the other I can see the scrambled mess of his brain. His > > > drawers are so mixed up. I will say one thing, they are carefully > > > folded, but mixed, and so is his closet. He is neat in some areas. > > > His banana peels were left in the sink in a very neat stack. Yet, > > the > > > store room is a shambles. I made it into a nice working area, and > > > within a couple of weeks every bench top was piled as high as it > > > would go. Nothing put away. Just a wreck out there. I'll wait 'til > > > the weather is right to tackle it again. It's almost beyond me to > > > know where to put all his junk. > > > > > > Don can't do much of anything, and is also having trouble telling > > > about things of a recent nature. Old things he talks well, but he > > > does have trouble with words a lot. > > > And he looses his train of thought by the slightest distraction, > and > > > a lot with no distraction. > > > > > > I asked him to get me a wide mouth pint jar. He went to one place > > > where I keep big jars. I said, " Look in the little refrigerator. " > > (It > > > is not plugged in and I use it for jars). He looked and looked, > and > > > just couldn't find one. I said, " Look under your hand. " I turned > > > around to do something, then in a couple of minutes I asked > > > again, " Where is the pint jar? " He said, " I thought you wanted me > to > > > put it away so I put it in the refrigerator. " He forgot in mid- > > action > > > that he was getting a pint jar for me. He doesn't know up and down > > or > > > sideways a lot of the time. He can't follow directions, nor learn > > new > > > things. > > > > > > Papa Don knows he has LBD, and is aware when things happen. He > > > recently had a burst of anger, and hit his fist on the dashboard, > > and > > > cursed a bit, because I didn't stop the car fast enough. He went > > into > > > the store to pay for the gas, (Normally I do, And have to pump the > > > gas too, but he was angry) He worried with the pump for a spell, > but > > > finally pumped the gas. I thought he was never going to get the > > > nozzle put away. He couldn't figure out the way it has to be done > to > > > make the nozzle go in. I was watching in the rear view mirror. A > man > > > behind him must have told him, because he sure told Don that our > gas > > > tank was still open. > > > When Don got back in the car he said, " Honey, I sure am sorry. " > > That > > > disposition is not him, it was LBD. > > > > > > He has been having accidents just about every day in his > underwear, > > > but it isn't serious. I do bathe him, (not all the time) and love > > the > > > nice shower Don B. built in for us. We have to get more round > > > cornered grab bars for it. Yesterday I took the shower curtain > back > > > down for the umpteenth time to install the paper trim around the > top > > > of the shower. So far I haven't been able. > > > > > > I did get a light in the fixture in the store room. That room has > > > been dark for a week, and Don didn't do a thing about it. We could > > > hardly see by the light in the washer room. Well, it is fixed, > and I > > > didn't fall. I am proud of me. I need to stretch my arm a little > > > longer, so I can pat my back a little easier, (grin) > > > > > > This year we have to get the carpet out of here. The Doctor > stressed > > > it. I will get this house cleaned like never before. Yeah, right! > > Any > > > day now. > > > > > > I must wash my bed clothes in scalding water at least once a week. > > > That is real playtime. I nearly stand on my head, (watch me stand > on > > > my head, Mama, while I bend over to make the bed, Watch me! " I'm > > > laughing my silly head off) It's a king bed. I have elastic straps > > > with fasteners to hold my sheets down, and in place. I am studying > > > to get Don a twin and take his double for me. He is agreeable to > > it. > > > > > > This morning when Don woke up cold he also saw someone in his bed > > > with a baby. But, it wasn't him in bed. He was up looking at them. > > It > > > was someone else. He told them, " Go home. " They disappeared. Right > > > now he can do that, but as he becomes sicker, he won't be able. > > > Hallucinations are one of the first hallmarks of Lewy Body > Dementia. > > > > > > I mentioned his chest pain last night, well he said it was VERY > BAD > > > chest pain. I don't know why he didn't ring for me. I told him he > > > needed to come back into my bed, and I would put a heater near to > > > keep him warm, (my room is a deep freeze) but he said " no. " He > said > > > he would cover himself better when he goes to bed. Tonight, I put > a > > > heater in his room. Am running the bath heater and one in the > hall, > > > so that is he gets up to potty he won't get too cold. We need to > buy > > > two more little heaters. > > > > > > At noon I asked if Papa had fed the birds. He assured me that he > > had. > > > I took some bread scraps out and gave them some grain. The bird's > > > water was gone. Bone dry. > > > > > > When I came in I told him that the birds hadn't been fed, > > > saying, " Take a look at them. Dozens of them gobbling as fast as > > they > > > can. " He insisted he fed them because he took a bag of crumbs to > > > them. I said darling there is no evidence of a bag in the trash. > > > > > > He was angry in a flash and dumped the trash on the floor and > > > searched. I should never have challenged him like that. I told > > > him, " The bag may have been thrown in the black can outside. > > Darling, > > > I am so sorry I said anything, because you certainly know what you > > > have done. " > > > > > > But, the truth is he did not know what he had done. There was no > > > evidence of a bag anywhere. It is a trivial thing, but I know all > > too > > > well not to say one word that can trigger his anger, but I did, > and > > > bit my lip too late. > > > > > > Sometimes he'll see me do something, and swear it was him that did > > it > > > when I had just done it. He'll repeat what he did down the last > > > detail, and it was me that did it. Go figure. Like my taking > crumbs > > > to the birds, and feeding them. He knows for sure that he did it. > > > > > > It does get a little hard for me to have a shadow ALL the time. We > > go > > > to a store, and he is right behind me. I cook and he stands right > > > there in the way, watching. > > > I go to the bathroom and he comes looking for me, and the same > with > > > the laundry. > > > He follows me out there, and tells me he couldn't find me. No > matter > > > what I do he is watching. He is lonely, bored, and very insecure. > he > > > is afraid he'll loose me. I am his lifeline. He can't entertain > > > himself very much anymore. It reminds me of you kids underfoot all > > > the time, and I don't dare shut the door to the bathroom. (those > > were > > > the good old days. Big happy smile) > > > > > > We talk right up front about all of Lewyville. > > > > > > He told me that the woman in his bed one night was going to kiss > > him, > > > and he told her to go away. And puff, she was gone. He also had a > > > baby in bed, and had a young man standing by his bed that was > > flexing > > > his large muscles to wrestle or fight. He always tells them to go > > > away or go home. End of them, at least for awhile. > > > > > > It seems that he can handle it better when it is in the open with > > > someone that understands and helps carry his load. That is why we > > are > > > open about it and talk. > > > > > > We can't possibly know what is in the sick person's mind and how > > hard > > > they actually work to be with us. That is why they become tired so > > > readily, or frustrated > > > and angry so quickly. We don't know what triggers it. > > > > > > We can't know how hard it must be on those that are having these > > > terrible experiences, especially when others tell them they are > > fine. > > > They want the problem validated, not told they are fine. > > > > > > I want to understand with him and for him. He does not need to > carry > > > this mental thing all by himself, and certainly not when others > deny > > > it. " Don is just fine, he talked just fine with me, I don't see > > > anything wrong. " > > > > > > That is like a Doctor telling his patients it's all in their head > > > when they are really sick, and they know something is wrong. It > > > usually makes the recipient of such treatment quite angry, and > > > frustrated. > > > > > > Don's sleepiness in the daytime is because he works so hard > mentally > > > with things around him that he is exhausted. Our dear Papa Don > will > > > often take a nap while I fix lunch, and again for two hours after > > > lunch. I have never tried to stop his naps. He sleeps all night > too. > > > In fact I try to guard his nap times so that he isn't disturbed. > It > > > keeps him calm and not agitated. > > > > > > It's like a small child that is tired and needs a nap. The child > > > becomes cranky and cries. A man, on the other hand, may become > > highly > > > agitated and actually try to fight. > > > > > > LBD is so unpredictable. A patient can be as sweet as pie, and > > > another time in a snap he can kill someone. Papa knows that when, > or > > > if, he gets that bad he will have to go to a lock down Nursing > Home. > > > I hope and pray the doctor can find medicine to curb that, but if > > > Hallucinations and agitation get too bad then nothing can be done > as > > > of now. A lot of research is being done. LBD patients cannot > handle > > > Antipsychotic drugs. > > > > > > I really do try to remain calm, loving and gentle with Papa Don, > > > because I want to keep him well as long as possible. I make a few > > > mistakes, but very few. Love and affection is good for both of us. > > > > > > Hey, I am about typed out, and my eye lids are drooping, so good > > > night all. > > > I love you with all my heart, > > > Mama > > > Added note 1-2-08 > > > Don awoke from his nap, and was standing in the doorway to his > > > bedroom. > > > It startled me slightly to see him standing in the half dark. I > > > said, " Oh you are up. " > > > He answered, " There is one standing right there, and right here. > > They > > > are cowboys. " I told him I was glad he recognized that they were > > > hallucinations. Of course the time will probably come when he > > doesn't > > > know. To him they are real people. He sees them clearly and > > > distinctly. > > > > > > Love you all on this wonderful List. > > > Imogene > > > > > > > > > > > > > > > Welcome to LBDcaregivers. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Carol- I must say I was a bit timid opening your reply. My stomach already hurts from laughing so hard over what you wrote the last time....crop circles...oh hehehahahaha I love love love your sense of humor. I appreciate your serious side and the love you show in caregiving for Millie. I am intrigued by your manatee stories and haven't as yet looked up all the information you wrote earlier but have saved the email and shall have a look around to see what I can get my hands/eyes on. Thank you, thank you, and thank you for all you contribute to this group! Iowa hugs- - known as manatee-less land- Sandie   Des Moines, IA dad, Merle, passed away from LBD 9-20-02, age 65 mum, Jo, (MIL) passed away from LBD 4-29-07, age 78 -- Letter I wrote to my children. All about > > our lives > > > as of now > > > > > > Hi, all o' y'all young'uns, > > > > > > Don't you wish? Being young is so nice. I do hope all of you had a > > > very good time off from you respective jobs and/or school. But, > most > > > of all I hope all of you are well. Please let me know if you > aren't. > > > > > > Of course the City had a blast here last night, but surprisingly > not > > > around our house. I heard nothing going on. No fire crackers. Oh > > yes, > > > I did hear a lot of extra ambulances passing with sirens blaring. > > > But, we don't even notice them, that is why I almost forgot them. > We > > > do kind of like being on a busy street, because it lets us know > > there > > > are people alive and moving around out there. We actually have > > > something to talk about once in a while from the activity we seen. > > > It's less boring. > > > > > > Don had a blast in his room last night, from all the partying > going > > > on. He was ready to fight them. He didn't like their partying in > his > > > room and down the hall. It was at least 4 or 5 people, (All > > > hallucinations.) Also he had very bad chest pain from getting > cold, > > > that is the second time this winter. Tonight is when it's supposed > > > to get really cold. > > > > > > We went to the Allergist, and she was adamant, in a nice way, > about > > > our getting this carpet out and getting filtration. She also told > me > > > how my allergies are affecting my lungs. She kept me and Don in > the > > > room a long time and really talked to me. She wants to see me for > > the > > > third time in seven days. I told her I thought the allergies were > > > just an aggravation, and not life threatening, so I just avoided > > what > > > I could and lived with the rest. She told me how it is causing my > > > sleep Apnea, and high blood pressure, and how my head allergies > are > > > going to my chest, which is ruining my lungs. It is all I can do > to > > > keep them clean. My ability to breath is getting less with each > > test. > > > The last test was 85, now it is 79. > > > > > > The Doctor said, " It is much harder on you than you know. " When > > > allergens trigger Asthma, then that makes a far worse situation > that > > > only adds to the Chronic Eosenophilia Pneumonia. She told me, " You > > > have severe Allergies. " I asked her to repeat what she had said, > and > > > she said it again. Yes, Don and I both heard her. She said, " It > will > > > exhaust you, and leave you feeling drained. " No kidding, as if I > > > didn't know that already. > > > > > > It is all I can do to get us to doctors, and pick up drugs. Thrift > > > store shopping is out. And we loved browsing in them. But, the > > > strength isn't there. I wonder why the lung doctors have never > said > > > anything about allergies? I certainly told them. > > > > > > Don has started to rearrange things, and has left piles of clothes > > > everywhere in his room. That is not like him. On one hand he is > neat > > > and on the other I can see the scrambled mess of his brain. His > > > drawers are so mixed up. I will say one thing, they are carefully > > > folded, but mixed, and so is his closet. He is neat in some areas. > > > His banana peels were left in the sink in a very neat stack. Yet, > > the > > > store room is a shambles. I made it into a nice working area, and > > > within a couple of weeks every bench top was piled as high as it > > > would go. Nothing put away. Just a wreck out there. I'll wait 'til > > > the weather is right to tackle it again. It's almost beyond me to > > > know where to put all his junk. > > > > > > Don can't do much of anything, and is also having trouble telling > > > about things of a recent nature. Old things he talks well, but he > > > does have trouble with words a lot. > > > And he looses his train of thought by the slightest distraction, > and > > > a lot with no distraction. > > > > > > I asked him to get me a wide mouth pint jar. He went to one place > > > where I keep big jars. I said, " Look in the little refrigerator. " > > (It > > > is not plugged in and I use it for jars). He looked and looked, > and > > > just couldn't find one. I said, " Look under your hand. " I turned > > > around to do something, then in a couple of minutes I asked > > > again, " Where is the pint jar? " He said, " I thought you wanted me > to > > > put it away so I put it in the refrigerator. " He forgot in mid- > > action > > > that he was getting a pint jar for me. He doesn't know up and down > > or > > > sideways a lot of the time. He can't follow directions, nor learn > > new > > > things. > > > > > > Papa Don knows he has LBD, and is aware when things happen. He > > > recently had a burst of anger, and hit his fist on the dashboard, > > and > > > cursed a bit, because I didn't stop the car fast enough. He went > > into > > > the store to pay for the gas, (Normally I do, And have to pump the > > > gas too, but he was angry) He worried with the pump for a spell, > but > > > finally pumped the gas. I thought he was never going to get the > > > nozzle put away. He couldn't figure out the way it has to be done > to > > > make the nozzle go in. I was watching in the rear view mirror. A > man > > > behind him must have told him, because he sure told Don that our > gas > > > tank was still open. > > > When Don got back in the car he said, " Honey, I sure am sorry. " > > That > > > disposition is not him, it was LBD. > > > > > > He has been having accidents just about every day in his > underwear, > > > but it isn't serious. I do bathe him, (not all the time) and love > > the > > > nice shower Don B. built in for us. We have to get more round > > > cornered grab bars for it. Yesterday I took the shower curtain > back > > > down for the umpteenth time to install the paper trim around the > top > > > of the shower. So far I haven't been able. > > > > > > I did get a light in the fixture in the store room. That room has > > > been dark for a week, and Don didn't do a thing about it. We could > > > hardly see by the light in the washer room. Well, it is fixed, > and I > > > didn't fall. I am proud of me. I need to stretch my arm a little > > > longer, so I can pat my back a little easier, (grin) > > > > > > This year we have to get the carpet out of here. The Doctor > stressed > > > it. I will get this house cleaned like never before. Yeah, right! > > Any > > > day now. > > > > > > I must wash my bed clothes in scalding water at least once a week. > > > That is real playtime. I nearly stand on my head, (watch me stand > on > > > my head, Mama, while I bend over to make the bed, Watch me! " I'm > > > laughing my silly head off) It's a king bed. I have elastic straps > > > with fasteners to hold my sheets down, and in place. I am studying > > > to get Don a twin and take his double for me. He is agreeable to > > it. > > > > > > This morning when Don woke up cold he also saw someone in his bed > > > with a baby. But, it wasn't him in bed. He was up looking at them. > > It > > > was someone else. He told them, " Go home. " They disappeared. Right > > > now he can do that, but as he becomes sicker, he won't be able. > > > Hallucinations are one of the first hallmarks of Lewy Body > Dementia. > > > > > > I mentioned his chest pain last night, well he said it was VERY > BAD > > > chest pain. I don't know why he didn't ring for me. I told him he > > > needed to come back into my bed, and I would put a heater near to > > > keep him warm, (my room is a deep freeze) but he said " no. " He > said > > > he would cover himself better when he goes to bed. Tonight, I put > a > > > heater in his room. Am running the bath heater and one in the > hall, > > > so that is he gets up to potty he won't get too cold. We need to > buy > > > two more little heaters. > > > > > > At noon I asked if Papa had fed the birds. He assured me that he > > had. > > > I took some bread scraps out and gave them some grain. The bird's > > > water was gone. Bone dry. > > > > > > When I came in I told him that the birds hadn't been fed, > > > saying, " Take a look at them. Dozens of them gobbling as fast as > > they > > > can. " He insisted he fed them because he took a bag of crumbs to > > > them. I said darling there is no evidence of a bag in the trash. > > > > > > He was angry in a flash and dumped the trash on the floor and > > > searched. I should never have challenged him like that. I told > > > him, " The bag may have been thrown in the black can outside. > > Darling, > > > I am so sorry I said anything, because you certainly know what you > > > have done. " > > > > > > But, the truth is he did not know what he had done. There was no > > > evidence of a bag anywhere. It is a trivial thing, but I know all > > too > > > well not to say one word that can trigger his anger, but I did, > and > > > bit my lip too late. > > > > > > Sometimes he'll see me do something, and swear it was him that did > > it > > > when I had just done it. He'll repeat what he did down the last > > > detail, and it was me that did it. Go figure. Like my taking > crumbs > > > to the birds, and feeding them. He knows for sure that he did it. > > > > > > It does get a little hard for me to have a shadow ALL the time. We > > go > > > to a store, and he is right behind me. I cook and he stands right > > > there in the way, watching. > > > I go to the bathroom and he comes looking for me, and the same > with > > > the laundry. > > > He follows me out there, and tells me he couldn't find me. No > matter > > > what I do he is watching. He is lonely, bored, and very insecure. > he > > > is afraid he'll loose me. I am his lifeline. He can't entertain > > > himself very much anymore. It reminds me of you kids underfoot all > > > the time, and I don't dare shut the door to the bathroom. (those > > were > > > the good old days. Big happy smile) > > > > > > We talk right up front about all of Lewyville. > > > > > > He told me that the woman in his bed one night was going to kiss > > him, > > > and he told her to go away. And puff, she was gone. He also had a > > > baby in bed, and had a young man standing by his bed that was > > flexing > > > his large muscles to wrestle or fight. He always tells them to go > > > away or go home. End of them, at least for awhile. > > > > > > It seems that he can handle it better when it is in the open with > > > someone that understands and helps carry his load. That is why we > > are > > > open about it and talk. > > > > > > We can't possibly know what is in the sick person's mind and how > > hard > > > they actually work to be with us. That is why they become tired so > > > readily, or frustrated > > > and angry so quickly. We don't know what triggers it. > > > > > > We can't know how hard it must be on those that are having these > > > terrible experiences, especially when others tell them they are > > fine. > > > They want the problem validated, not told they are fine. > > > > > > I want to understand with him and for him. He does not need to > carry > > > this mental thing all by himself, and certainly not when others > deny > > > it. " Don is just fine, he talked just fine with me, I don't see > > > anything wrong. " > > > > > > That is like a Doctor telling his patients it's all in their head > > > when they are really sick, and they know something is wrong. It > > > usually makes the recipient of such treatment quite angry, and > > > frustrated. > > > > > > Don's sleepiness in the daytime is because he works so hard > mentally > > > with things around him that he is exhausted. Our dear Papa Don > will > > > often take a nap while I fix lunch, and again for two hours after > > > lunch. I have never tried to stop his naps. He sleeps all night > too. > > > In fact I try to guard his nap times so that he isn't disturbed. > It > > > keeps him calm and not agitated. > > > > > > It's like a small child that is tired and needs a nap. The child > > > becomes cranky and cries. A man, on the other hand, may become > > highly > > > agitated and actually try to fight. > > > > > > LBD is so unpredictable. A patient can be as sweet as pie, and > > > another time in a snap he can kill someone. Papa knows that when, > or > > > if, he gets that bad he will have to go to a lock down Nursing > Home. > > > I hope and pray the doctor can find medicine to curb that, but if > > > Hallucinations and agitation get too bad then nothing can be done > as > > > of now. A lot of research is being done. LBD patients cannot > handle > > > Antipsychotic drugs. > > > > > > I really do try to remain calm, loving and gentle with Papa Don, > > > because I want to keep him well as long as possible. I make a few > > > mistakes, but very few. Love and affection is good for both of us. > > > > > > Hey, I am about typed out, and my eye lids are drooping, so good > > > night all. > > > I love you with all my heart, > > > Mama > > > Added note 1-2-08 > > > Don awoke from his nap, and was standing in the doorway to his > > > bedroom. > > > It startled me slightly to see him standing in the half dark. I > > > said, " Oh you are up. " > > > He answered, " There is one standing right there, and right here. > > They > > > are cowboys. " I told him I was glad he recognized that they were > > > hallucinations. Of course the time will probably come when he > > doesn't > > > know. To him they are real people. He sees them clearly and > > > distinctly. > > > > > > Love you all on this wonderful List. > > > Imogene > > > > > > > > > > > > > > > Welcome to LBDcaregivers. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 Sandie, May I jump in on the band wagon and second what you said about Carol? Thank you. I just did. She tears me up! Love a lot, and laugh your head off, Imogene In a message dated 1/6/2008 6:49:37 PM Central Standard Time, sanclown@... writes: Carol- I must say I was a bit timid opening your reply. My stomach already hurts from laughing so hard over what you wrote the last time....crop circles...oh hehehahahaha I love love love your sense of humor. I appreciate your serious side and the love you show in caregiving for Millie. I am intrigued by your manatee stories and haven't as yet looked up all the information you wrote earlier but have saved the email and shall have a look around to see what I can get my hands/eyes on. Thank you, thank you, and thank you for all you contribute to this group! Iowa hugs- - known as manatee-less land- Sandie  Des Moines, IA dad, Merle, passed away from LBD 9-20-02, age 65 mum, Jo, (MIL) passed away from LBD 4-29-07, age 78 **************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2008 Report Share Posted February 19, 2008 Millie did not have her teeth with her yesterday, mostly because she has lost the ability to take them in and out. I called the nurse's station this a.m. to let them know she would need a special diet, but when I arrived after work, they had a whole untouched regular meal on her tray. She did not touch very much, and I am sure they wrote that on her chart. She still has the catheter, they took her off pain meds, and she is restrained. The hospital did not call me today, but did call Jim because he has the DPOA. Of course, he could not be anywhere near as helpful about her personal needs, but they had already had a very rough night. We think they are going to put her with Hospice for a few days to be evaluated. It was so odd to come to my own house this afternoon and not have to fix for Millie. If we look at the rapid decline in terms of development, I would say whe slipped from a toddler to a high chair, almost overnight. I do not know if the Ultram did her in, or the Exelon patch. It may have been neither, but the Ultram did get rid of the constant pain she was in. the ER doctor took her off pain meds. I was able to make sure they did not give her Ativan. Ten years from now it will be very interesting to see what becomes standard for LBD patients. We are pioneers,and we are blazing trail at the expense of our LO's. I do suspect something pushed Millie over the edge, and maybe a few days will make a difference. It happened too quickly! I would do the Ultram again, only because when Millie was in pain all of the time, she was so miserable. Exelon didn't seem to have any positive effect. So, we will continue to watch for improvement, or not. The change was just so sudden, I was not on top of it. I can't say any of the sons have stepped up to fix anything. Millie's blood pressure when from 83/63 to 203/99 in the course of the day yesterday. The 83/63 definitely sent up some red flags, and then the flags went higher at 203/99. Trained professionals, and fancy machines were keeping track of her, and no one seemed to be terribly alarmed by the variances. I will keep you guys posted. Carol > > Hi Carol, I hope your resting and getting some peace and quiet.I also > hope Millie is doing well.Just wanted to let you know your being > thought of, no ifs and or BUTTS.My best to you Carol Ron > Quote Link to comment Share on other sites More sharing options...
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