Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 My guess is it's a political caucus code. LOL adhd5464 wrote: 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 But the codes keep changing! i have seen AA's and II's, and so it must be a " buy a vowel " thing. > > > > > > > > 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 well, that would be too easy! Sandi can just put a number 1 behind Des Moines and that would be the end of it! I think we can have more fun than just a number 1. Although, number 1 produced by our LO is really no fun at all! > > > > > > > > > > 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...
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