Re: imogene/sharon m

[Guest guest]

imogene,

thank you for your concern, i try to forget the bad times and most of the time

i dont dwell on them as i know in my brain that it was the disease talking but

yes the heart forgot that several times.

my dad also accused me of stealing from him, and hiding money on him, and

keeping him sfrom his freinds etc. truth is dad drank so much and was not nice

when he was drunk he burned all of his bridges down, and when the 'shit' hit the

fan, he had noone to turn to to take care of him, so he asked me *and donnie* to

move down and take care of him, he promised me and donnie that we wouldnt ahve

to work although i am disabled and cannot work, that our repsonsibility was to

take care of him. but then he would tell his family that we just moved in and

he didnt know why and that donnie didnt want to work not that he asked us to

move and he didnt want donnie to work,. sigh,

but we did have alot of fun times and i still remember very clearly dad's little

infant like giggle.

keep your spirits up, hugs, sharon

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall

7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

---- Iward27663@... wrote:

Sharon, what a terrible thing to endure. Really terrible. I am so sorry. Do

you think

he was screaming at you like that, because it is like a baby that screams at

Mama to make it go away? What ever is wrong, Mama always fixes it, and she

is the one the baby trust most. If Mama doesn't fix it right away, the baby

screams louder and harder. It seems your dad loved you and trusted you to make

it go away, and desperately wanted you to do that for him. You were his shield

his strength, and the one to fix it. And, of course you couldn't, and he

couldn't understand that.

I really appreciate your telling me your horror story. I hope I never endure

something like that.

What happened to me hurt, because I thought my LO was accusing me of trying

to hide something. He said I didn't tell him straight out the answer to his

questions. No one could be more straight out to a mate than I am. Trust and

honesty along with respect and love, are what we base our marriage on.

After a good cry, and I could think, and recall how I do answer him, I

realized I wasn't tuned in to Dementia fully. Yes, by all means I answer him

straight, But, I tend to explain all around it, to help him see the whole

picture,

and by the time I get back to the answer he has already forgotten my answer.

He thought I was talking in circles. It was totally my fault, except that I

wish he had said something to me, instead of to the doctor in front of me.

That was embarrassing, which caused my pain.

But, that was a slight misunderstanding, and nothing like you endured. If my

LO treated me like that I am not sure I could go around him. I crumble too

easily. I am so used to his total love, and trust, that it floored me. It's

all better now, thank goodness.

After all the things I have learned about these dementia's and have become

so frightened for my life, (wear a cell phone, get rid of all guns knives, and

anything that can be used as a weapon,) then to be told My LO has the worst

of the dementia's knocked me for a loop.

But, I was told, today, that my LO doesn't seem to have true frontal lobe

dementia which is a horrible disease. I was told that from another list. Not fr

om my LO's doctor that diagnosed My LO's condition. The doctor did say that

my LO had improved on the last mini test, which he was happy to see. Well,

from the other List, I was told that frontal lobe does not fluctuate, that it

just goes from bad to worse.

So, I want to learn more about it, but I don't believe my LO is very sick.

We get along well, with lots of love and affection, and he helps around the

house when I

ask him to set the table or take the dishes out of the washer. He also helps

with the laundry, but I have asked dozens of times for him to leave the

laundry to me. He forgets and takes the clothes out before they have gone

through

the second rinse. Our washer has an automatic second rinse if you set the

button. I can't count the number of times I have had to put the clothes back

after they have been dried. That is no biggy. His heart is very good about

wanting to do things with me, as long as I set things in motion. If I read , he

reads, if I do puzzles he watches Tv beside me, If I am on the computer, he is

asleep, or reads until I get up and start doing something. Then he'll follow

my lead and follow me around like a kid to help Mama. It is really sweet.

Since his Zoloft has been increased he has really calmed down, and is very

nice like he used to be. He has been started on Razadyne. He fell in the

kitchen once. That is the reason for the new medication.

Thank you for telling me your experiences. I hope you can remember the good,

and not be hurt anymore by the bad. It was the illness, but I do understand

no one wants to be treated in such a degrading manner. I am really sorry,

Sharon.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism, and Frontal Lobe Disease with Apathy, and possibly AD.

In a message dated 6/17/2006 10:38:54 PM Central Daylight Time,

LadySmilingAtU2@... writes:

Imogene

the evils of lbd come out from our lo's to the ones the love the most. that

is why he says things that are hurtful to you, becuase somewhere deep in his

brain and heart he knows you love him thru sickness and in health, for

better or for worse, so he feels secure with you. he doesnt have to showtime,

it

took a long time for me to learn that, when dad was cursing me, treating me

like a down trodded pimp whould treat a prostitute that didnt do what she was

supposed to. yet donnie who he knew only for 2 years could do no wrong.

dad would yell and scream at me, and then smile and be so nice to donnie. it

would hurt me sooo bad, i would cry and cry. one time when dad was in the

hosp, hurricane dennis had us locked into the hosp. we were boarded in for the

storn, and dad had a particularly ugly day. he would scream bit**, whore,

etc at the top of his lungs to me in the hallway of the hosp where everyone

was evactuated to. we werent allowed to stay in our rooms due to the large

windows so all the patients and loved ones and the staff and their familes

were in the hosp hallways. i was so embarassed and humiliated, i ran down the

hall in tears, wanting to disappear from the face of the earth. i found

solace in the nurses break room where noone was and just baweld my eyes out.

and

a few mintues later a very soft spoken nurse came in and sat with me, she put

her arms around me and held me and said let it out honey. after a few

mintues i stopped crying and she looked at me, and said, the dementia is awful

to

not only the patient but to those the patient loves. she said, this is

definietly a time in life when the saying, you always hurt the ones you love

the

most, the worst. shes said it is the dementia screaming out, and i believe

that is the fear he has in him because he cant control himeslef. and he screams

out the most, the loudest, the meanest to those he trusts deep in his heart

and soul. then she told me to take 1 hr to myslef, walk around the hosp,

take a break, get something to eat, drink, just relax, we will take good care

of your dad and beleive me hon, when you come back he will be glad to see you

, even if it is in his own dementia influence way.

so i did. and every other time after that i treid to remember the words she

said. granted it didnt erase the hurt i got from the words he used but it did

help me not carry a grudge from it. let it flow off me a little easier.

good luck hugs, sharon m '

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from

fall 7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

---- Iward27663@... wrote:

I hope it gets easier, Dixie. There are so many things to learn about, and

to learn how to go with the flow. I don't mind the dirty clothes he makes,

I

don't mind the meals, I don't mind the driving so much anymore, but I am

having a time getting used to him saying and doing things that hurt me

emotionally. Yesterday I had to really talk to myself and say it is the

illness talking.

Still, I cried. I felt the same way taking care of his mother. I never

minded, but when a person is unkind to me, then I mind. (Get a tough skin,

Imogene. You have a lot more coming !!) What is so hard is he is a true

gentleman,

and is very kind.

I know it is true,that things get turned inside out, or upside down,

because

he knows what kind of person I am, and yet, will accuse me of things that

are totally opposite from me. His thinking is the same way when I ask for

medicine in my container on the counter, and he brings me medicine from a

different container from the cabinet. Sometimes if I ask him to put the

salt and

pepper on the table (after he has asked me what he can do), but he will put

another object on the table, or bring it to me at the counter. Those times

are not

often, but he doesn't hurt my feeling often either. We are a very loving

affectionate couple. I don't know what brings on his spells other than LBD.

They

come out of the blue.

As for my bed clothes. Well, I come from the old school, that soap cleans.

I

don't know that I could clean the oils, dead skin, dust mites, and what

ever

else may be lurking in my bedding, so I use Clorox, scent free detergent,

Hot water for washing, and lots of cold water for rinsing. I am usually

careful

to unroll my sheets if they do get that way, to make sure they are getting

clean, and especially rinsed well.

When I got up today, I had no itching, or rash. That bed had been striped

in

a hurry yesterday, and rinsed all over again.

I certainly appreciate your encouragement and concern for my well being. I

had a long talk with my Dentist today, and was so glad for a professional

that

was understanding, and sympathetic. I came home in a whole new state of

mind. I thanked her for being my therapist. We both laughed.

She did all the final measurements for my bridgework, and I should have

them

In a few weeks. She is on Faculty, and has to figure out what days she can

allot to me.

That is one reason I have taken so long getting my work done, besides my

own

health problems causing me to cancel.

It was good to talk to you Dixie, and all of the rest of you.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism, and Frontal Lobe Disease with Apathy, and possibly AD.

Love is long-suffering,-- it does not fail. 1 Cor. 13: 4-7 (paraphrased)

In a message dated 6/14/2006 4:52:16 PM Central Daylight Time,

djmcil@... writes:

Hi Imogene;

It's funny how much stronger we turn out to be than we ever expected we

were. You learned a long time ago to trust yourself in a tough situation

and know you'd manage. And despite challenges that could overwhelm a

person, you are taking care of Don. Now it is very difficult but, strangely,

it gets easier once they become worse. When you are not constantly waiting

for the next crisis, the next fall, the next BM or pee all over the floor or

bed, the next embarrassing encounter with a perfect stranger, it is not as

bad. You can plan and anticipate and get things under your control. Of

course, you are never really in control but at least you can contain the

situation better, and even get more sleep.

Also, do you wash your sheets with detergent? Why not just use lots of hot

water and nothing else? Kills any germs and it might be gentler on your

skin.

Dixie

Dixie McIlwraith

[Non-text portions of this message have been removed]

[Guest guest]

Sharon, you are right. When we visited the doctor I had four typed pages

from him, now I am not writing things down. You are absolutely right.

I wasn't diligent about watching him take his 3 PM pill and he forgot it for

a whole week. I really have to get on the ball. I know the other pills, as

they are at meal times, but forgot the 3 PM.

Do I tell on myself? (smile) I don't pay that much attention to the subtle

things, and I should. I have been revising my book, because he is doing so

well, and here I am.

Thanks dear lady for the reminder.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism.

In a message dated 6/25/2006 11:27:22 PM Central Daylight Time,

LadySmilingAtU2@... writes:

imogene,

i am smiling here becuase i just noticed both of our husbands names are don,

and they are both southern gentlemen.

as for taking a pad and paper, i encourage you to also take little notes on

your don, just short things about how his day was, so you can tell the doctor

about any changes, questions, problems, etc. as you may not notice things

as the changes may be subtle and then you will forget to tell the doctor.

hugs, sharon m

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from

fall 7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

[Guest guest]

no problem, and do you have an alarm clock, why dont you set it for the 3pm

medicine and that way you wont forget it,

i have to take my morphine on a schdule, 6am, 2pm and 10pm and my cell phone

that is always near me has an alram clock so i have it set to ring at those

times just to remind me to take my medicines, and aol has a reminder that you

can set up to send you and instant message reminder to pop up at 3pm to say take

medicine. some ideas, hope they help, hugs, sharon

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall

7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

---- Iward27663@... wrote:

Sharon, you are right. When we visited the doctor I had four typed pages

from him, now I am not writing things down. You are absolutely right.

I wasn't diligent about watching him take his 3 PM pill and he forgot it for

a whole week. I really have to get on the ball. I know the other pills, as

they are at meal times, but forgot the 3 PM.

Do I tell on myself? (smile) I don't pay that much attention to the subtle

things, and I should. I have been revising my book, because he is doing so

well, and here I am.

Thanks dear lady for the reminder.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism.

In a message dated 6/25/2006 11:27:22 PM Central Daylight Time,

LadySmilingAtU2@... writes:

imogene,

i am smiling here becuase i just noticed both of our husbands names are don,

and they are both southern gentlemen.

as for taking a pad and paper, i encourage you to also take little notes on

your don, just short things about how his day was, so you can tell the doctor

about any changes, questions, problems, etc. as you may not notice things

as the changes may be subtle and then you will forget to tell the doctor.

hugs, sharon m

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from

fall 7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

[Guest guest]

In a message dated 6/26/2006 1:14:41 AM Central Daylight Time,

LadySmilingAtU2@... writes:

no problem, and do you have an alarm clock, why dont you set it for the

3pm medicine and that way you wont forget it,

i have to take my morphine on a schdule, 6am, 2pm and 10pm and my cell

phone that is always near me has an alram clock so i have it set to ring at

those times just to remind me to take my medicines, and aol has a reminder that

you can set up to send you and instant message reminder to pop up at 3pm to

say take medicine. some ideas, hope they help, hugs, sharon

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from

fall 7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

---- Iward27663@... wrote:

Sharon, you are right. When we visited the doctor I had four typed pages

from him, now I am not writing things down. You are absolutely right.

I wasn't diligent about watching him take his 3 PM pill and he forgot it

for

a whole week. I really have to get on the ball. I know the other pills, as

they are at meal times, but forgot the 3 PM.

Do I tell on myself? (smile) I don't pay that much attention to the subtle

things, and I should. I have been revising my book, because he is doing so

well, and here I am.

Thanks dear lady for the reminder.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism.

In a message dated 6/25/2006 11:27:22 PM Central Daylight Time,

LadySmilingAtU2@... writes:

imogene,

i am smiling here becuase i just noticed both of our husbands names are

don,

and they are both southern gentlemen.

as for taking a pad and paper, i encourage you to also take little notes on

your don, just short things about how his day was, so you can tell the

doctor

about any changes, questions, problems, etc. as you may not notice

things

as the changes may be subtle and then you will forget to tell the doctor.

hugs, sharon m

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from

fall 7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had

aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

[Non-text portions of this message have been removed]

[Guest guest]

Sorry about the slip on sending a blank reply. The alarm is a good idea,

except I don't want to wake my husband from his afternoon nap. It isn't

mandatory that he take it exactly on time. But, I still need a reminder of

sorts.

I'll think on it.

Sharon, you sent up an alarm in my brain. Why are you taking Morphine? I am

sorry, but this concerned me with a big alarm.

Imogene

In a message dated 6/26/2006 1:14:41 AM Central Daylight Time,

LadySmilingAtU2@... writes:

no problem, and do you have an alarm clock, why dont you set it for the

3pm medicine and that way you wont forget it,

i have to take my morphine on a schdule, 6am, 2pm and 10pm and my cell

phone that is always near me has an alram clock so i have it set to ring at

those times just to remind me to take my medicines, and aol has a reminder that

you can set up to send you and instant message reminder to pop up at 3pm to

say take medicine. some ideas, hope they help, hugs, sharon

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from

fall 7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

---- Iward27663@... wrote:

Sharon, you are right. When we visited the doctor I had four typed pages

from him, now I am not writing things down. You are absolutely right.

I wasn't diligent about watching him take his 3 PM pill and he forgot it

for

a whole week. I really have to get on the ball. I know the other pills, as

they are at meal times, but forgot the 3 PM.

Do I tell on myself? (smile) I don't pay that much attention to the subtle

things, and I should. I have been revising my book, because he is doing so

well, and here I am.

Thanks dear lady for the reminder.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism.

In a message dated 6/25/2006 11:27:22 PM Central Daylight Time,

LadySmilingAtU2@... writes:

imogene,

i am smiling here becuase i just noticed both of our husbands names are

don,

and they are both southern gentlemen.

as for taking a pad and paper, i encourage you to also take little notes on

your don, just short things about how his day was, so you can tell the

doctor

about any changes, questions, problems, etc. as you may not notice

things

as the changes may be subtle and then you will forget to tell the doctor.

hugs, sharon m

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from

fall 7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had

aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

[Non-text portions of this message have been removed]