Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Hi Ladies- Well, I did caucus. First time ever. Look where that got me. I am happy the next caucus is in New Hampshire...maybe the " codes " will go with them. Give me an " A " ... or maybe... " Y " " M " " C " " A " ... sheesh...this is out of control... Sandie - here we go again...lets see what appears this time -   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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