Re: Re: Imogene - anyone/Sandie

January 5, 2008

Looking at your signiture and I see nothing after your name, but I do see the

characters before the Des Moines area. Have no idea, but Hotmail used to do that

to all my e-mail, not just a name and that is why I am at Yahoo now.

Sandie/ wrote: Hi Imogene and All-

Any ideas what the characters are that show up after my name and before the

Des Moines " area? Just noticed they have been on a few of my signatures.

Odd. They sure don't show up on my computer before I hit " send " . Really

has me stumped. huh...

Sandie

ï»¿ï»¿ï»¿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.

>

January 5, 2008

I see it before Des Moines. Scroll to the bottom of original message.

Sandie/ wrote: Course now that I point them out,

they aren't there....I am getting v-e-r-y

sleepy...