Re: Jan- anyone/Sandie

January 6, 2008

Hi Jan-

Thanks for replying. Not sure if the marks are still there before the Des

Moines or not. It seems to me they are gone. Course all this could be only

happening in my little world. :-))

All the best to you and Jim, with many hugs-

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 6, 2008

Sandie, the little marks before Des Moines are still there on my side. It shows

like an i with double dots on top and upside down question marks and arrows. It

is weird! There aren't even those type of characters on an English Type

Keyboard.........Hugs back at ya S

Jim and I combind are JAM, LOL

Sandie/ wrote: