Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 So, is the gobbledegook still there? I don't think I see them anymore, however, not sure what I see. Ya, Number 1 stories are far less interesting than the next number in line. Sandie - aka Sanna, aka Vanna...aka S   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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