Carol

[Guest guest]

OH MY GOSH Carol. If I laugh any harder the only marks by me on me or

around me will be the ones from a beautiful white jacket used to give myself

a hug...they're coming to take me away...oh my...

Crop circles...Skunk Ape tracks...oh here I go again...lol

hahahahahaha lol

Put an Exelon Patch on it...hahahahhahahehehahaheha

Thank you for this...hahahaha

Sandie

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.

> >

> >

> >