Re: Imogene-Letter I wrote to my children. All about our lives as of now

[Guest guest]

Dear Imogene-

Wanting so badly to reach through the computer and give you a big hug.

Thank you for sharing this letter with us. This truly paints a vivid

picture.

Love and lots of hugs-

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.

[Guest guest]

Dear dear, Sandie,

I love all your letters reaching out to everyone with a word of

kindness with uplifting thoughts and praise. I am glad you have

remained on the List. You are needed.

You did reach through the computer. Here I am. I'll be on mail by

tomorrow. I have just signed it again for regular mail.

And, a big ((((((Hug Sandie)))))

Love a lot,

Imogene

>

> Dear Imogene-

>

> Wanting so badly to reach through the computer and give you a big

hug.

>

> Thank you for sharing this letter with us. This truly paints a

vivid

> picture.

>

> Love and lots of hugs-

>

> 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.

>

>

>