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irene,

i didnt want to scare you but many people in htis group were shocked when nmy

dadddy died as noone not even me thought he was in the final stage, i got a call

taht his bp was dropping like it did many times before, they gave his meds and

he was drinking adn stable and then at 1:42am i got a call that daddy died, i

went ballistic, i wasnt told that they thought he was dying, he died without

family there, i hope to heaven he forgives me as i didnt understand what the

stupid nurse *sorry folks seh was a stupid one, remember she got a week off

without pay to think about what she did* i was expected to read between the

lines, she called me from a phone not even near daddy so she should have told

me what was going on but didnt, ugh, i still havent forgiven her and have

problems forgiving myself, we had made arrangements 5 days later to have daddy

moved at home.

so i tell everyone you cant wait you never know what or when is going to happen

so write your questwions, translate your brochures, give the doctors the links

possibly they have a computer taht can accedss it in italian instead, do what

you can when you can, and ask for help fromm friends, family, church etc,

but most of all irene, take care of yourself first, otherwise if you get

seriously ill, your hubby will be in the hands of people who dont understand teh

disease. take care of yourself, hugs, sharon

ps, i am doing fair today, i am really tired,stayed in bed today, so i can do

the legal processes of buyibg teh property tomorrow. hugs, sharon,

---- Irene elli wrote:

Sharon,

I know you are right about being prepared and I am going to start making my

lists now but this is still all so new to me that I can't even begin thinking

that far down the line. Also, here in Italy, it is so different than in the US

with health care facilities, etc. I would know what to do with him here so I am

going to wait until we get to the top of the wait list for the Alzheimer

Evaluation Unit at our hospital here in Lucca and then hit the neurologist with

a list of my prepared questions. Sounds to me like you did everything possible

for your father and I am sure he knew it even if he couldn't express it. How

are you doing? Irene

--

I am daugher of Leonard, diagnosed May 2004, probably had lbd since 1993,.Dad

had a serious fall in 7/05 causing him to hav hip surgery .After that he

developed aspiration pneumonia 7/05 with pulmonary embolyis, which he almost

died from. He had a 2nd bout of aspiration pneumonia and uti 8/05. He died when

his blood pressure fluctuations started dropping without coming back up on

9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

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it will come -- i really do believe that it is a manifestation of grace --

on a less ethereal level, i know that when i've had something resembling enough

sleep, am eating properly-ish, am having a little bit of a life outside of

grandma and her needs (friends, reading, my own pursuits), am doing some of my

own work (i'm a writer) and am exercising with some regularity (i'm a runner --

i'd like to do it 5 days a week..but back here in the reality of leweyville,

.......hmmm......i try to make it happen 3 days a week and that's a GOOD week

when it happens) --- when i'm taking care of myself (as cliched as that sounds)

i tend to be much more patient. much. much. much. much.

hugs to all,

anna

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You are too kind Irene.

I agree you don't want to alienate them because yes you will

definately need them for help and that is not selfish. Remember too

that it will take them time to see what you already know and see. I

can't remember for sure but I think it was June that said a family

member (daughter maybe?) didn't understand until they had to care for

their LO for an extended period of time. It really hasn't been until

the last few months and even more so in the last few weeks that my

sister has seen the extent of Dad's condition. We moved him to an AL

this weekend and she got so frustrated with him that at one point

when he was out of the room she told me she didn't know how I had

lived with him as long as I did because he was certainly on her

nerves. No matter how much we had done he would ask about every

single item we hadn't done.

Saying a prayer for you,

Leah

>

> Leah, WOW. This is a message I will save and reread. You are

right. The pamphlet would be good but none of them speak English so

that's a waste of time. I did send them all a letter with details of

LBD and Parkinsonism so they would know what it was all about. I

will work on my one sister in law and hopefully she will come around

and consider me capable of caring for my husband of 31 years! I

don't want to turn them away and get them angry as I know I will

selfishly need them for physical help, but I just don't want them

meddling now when I am still feeling my way in the dark. Thanks Leah

you're a gem. Irene

> Re: Re: Family Interference

>

>

>

> Right on, Leah!

> Imogene

>

>

> In a message dated 3/4/2007 12:35:08 PM Central Standard Time,

> jonaslaj@... writes:

>

> I totally understand about not having patience Irene. Sometimes I

> get so angry and frustrated that I just want to run away but I

know

> that wouldn't accomplish anything. Don't be afraid to be vocal

with

> his siblings in telling them what you do and don't need. I know

> it's hard but after you do it a few times it gets easier. If you

> can get even one sibling to be reasonable and be on your side

then

> let that sibling handle the others.

>

> Recently when my Dad was released from the hospital to a NH my

> sister that likes to pick at everything gave me a hard way to go

the

> first time we meet up at the NH. My other sister called her the

> next day and politely (no sarcasim there) told her she needed to

> back off of me. That neither one of them had dropped their lives

to

> care for Dad since our mother died 17 years ago and especially

since

> he became sick making all the health care and financial decisions

> and trust me, I was having to make some very tough ones at that

> point. So my point is, if there is even one sibling that you can

> get close enough to, show them the pamplets on LBD, explain how

> being picky about doctors is important for proper treatment and

let

> them run interferance it would be helpful. But if that can't

happen

> don't be afraid of saying, " Look...you have the right to know

what

> is happening with your brother and I am doing my best to insure

that

> he gets the best treatment anywhere. I need your support, not

your

> critisizm " . I know that is really easy for me to sit on this side

> of the world and say but the one thing I have learned in the last

> few months is that if I don't stand up for Dad, who else will?

>

> Hugs to you,

> Leah

>

> <BR><BR><BR>**************************************<BR> AOL now

offers free

> email to everyone. Find out more about what's free from AOL at

> http://www.aol.com.

>

>

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Thanks Leah.....I'm going to stack those prayers up! It's a pity that people

see the light the long and hard way when all they have to do is listen and

learn. Irene

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Sharon,

What a sad story Sharon. Please don't be too hard on yourself as if you had

known you would have been there with your father. It most definitely is not

your fault. I was very far away, Rome, when my father passed away in

Clearwater. He too died alone and it has always weighed heavy on my heart. My

mother was called by the NH but for some reason she didn't go and he died all

alone. Life's a bitch!

You are right, I am going to start that list no later than tomorrow. Today is

just about gone on this side of the world so I will try and chill out a bit

before going to sleep and hope that my husband will not get up 3 times during

the night!!!!!

Irene

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,

When you get that all figured out will you share your tips??? I

haven't had much in the form of proper sleep, eating and excersize

since Dad was diagnosed. I'm not saying it can't be done...I just

haven't figured it out. Maybe , Donna or Imogene can pass

along some hints to us. Lewyville...I like that. Do you think we

can get our own zip and area code...LOL.

Hugs to you,

Leah

>

> it will come -- i really do believe that it is a manifestation of

grace --

>

> on a less ethereal level, i know that when i've had something

resembling enough sleep, am eating properly-ish, am having a little

bit of a life outside of grandma and her needs (friends, reading, my

own pursuits), am doing some of my own work (i'm a writer) and am

exercising with some regularity (i'm a runner -- i'd like to do it 5

days a week..but back here in the reality of

leweyville, ......hmmm......i try to make it happen 3 days a week

and that's a GOOD week when it happens) --- when i'm taking care of

myself (as cliched as that sounds) i tend to be much more patient.

much. much. much. much.

>

> hugs to all,

> anna

>

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irene,

another thing we have in common huh??? i am sorry you werenot nearer to your

father, but like you siad they knew we loved them so that is what matters

anyway.

my dad had sleep issues and i found a few tricks that helped him relax at least.

downy fabric softener has a lavendar scent and i used taht for all towels and

sheets and blankets and also it has been talked about that if our loved ones

suffer from restless leg syndrome or restless body syndrome as my dad had, he

would yell and scream and thrash and flail all nite long, but we put a new bar

of lavendar soap at teh foot of his bed and that seems to help him, we do it

for my hubby too as he has restless leg syndrome and it has helped, dont know

why, but it helped both of them, thought i would pass that on. dad also took

zoloft at night for his agitation, hallucinations and aggression and one of the

benefits was it helped him sleep, thought i would pass that on good luck and

hugs, sharon

---- Irene elli wrote:

Sharon,

What a sad story Sharon. Please don't be too hard on yourself as if you had

known you would have been there with your father. It most definitely is not

your fault. I was very far away, Rome, when my father passed away in

Clearwater. He too died alone and it has always weighed heavy on my heart. My

mother was called by the NH but for some reason she didn't go and he died all

alone. Life's a bitch!

You are right, I am going to start that list no later than tomorrow. Today is

just about gone on this side of the world so I will try and chill out a bit

before going to sleep and hope that my husband will not get up 3 times during

the night!!!!!

Irene

--

I am daugher of Leonard, diagnosed May 2004, probably had lbd since 1993,.Dad

had a serious fall in 7/05 causing him to hav hip surgery .After that he

developed aspiration pneumonia 7/05 with pulmonary embolyis, which he almost

died from. He had a 2nd bout of aspiration pneumonia and uti 8/05. He died when

his blood pressure fluctuations started dropping without coming back up on

9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

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I don't have a clue. Use to get all ticked off when anyone wrote I should take

care of myself. Wish I had solved that problem instead of getting irked. It

HAS affected my health in lot of ways. I was so tired when Mom was gone, I

slept. But it is all so important. We really need to get this conversation

going. I guess I could have talked to Mom while I did sit ups or rode a

stationary bike. It would have not been so easy to argue and I would have been

doing some good stuff for myself. And Mom could have done chair exercises with

me and wouldn't have had to much to argue about either!!!

Hugs.

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: Family Interference

,

When you get that all figured out will you share your tips??? I

haven't had much in the form of proper sleep, eating and excersize

since Dad was diagnosed. I'm not saying it can't be done...I just

haven't figured it out. Maybe , Donna or Imogene can pass

along some hints to us. Lewyville...I like that. Do you think we

can get our own zip and area code...LOL.

Hugs to you,

Leah

>

> it will come -- i really do believe that it is a manifestation of

grace --

>

> on a less ethereal level, i know that when i've had something

resembling enough sleep, am eating properly-ish, am having a little

bit of a life outside of grandma and her needs (friends, reading, my

own pursuits), am doing some of my own work (i'm a writer) and am

exercising with some regularity (i'm a runner -- i'd like to do it 5

days a week..but back here in the reality of

leweyville, ......hmmm......i try to make it happen 3 days a week

and that's a GOOD week when it happens) --- when i'm taking care of

myself (as cliched as that sounds) i tend to be much more patient.

much. much. much. much.

>

> hugs to all,

> anna

>

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Thanks Sharon for the tip. Renzo, my husband, doesn't have the leg or body

syndrome, yet, he just wakes up and thinks it is morning. But I will keep the

lavender scent in mind. Irene

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My problem is now that Dad is not living with me it seems things are

just as hard as when he lived with me. I have to make time to go

see him (not that I have regrets about that) but trying to see him

and get all the other stuff done too is just so hard. At least when

he was home I could do my other stuff at the same time I sat with

him. I a lot of times feel like I just run in circles all the time.

> >

> > it will come -- i really do believe that it is a manifestation

of

> grace --

> >

> > on a less ethereal level, i know that when i've had something

> resembling enough sleep, am eating properly-ish, am having a

little

> bit of a life outside of grandma and her needs (friends, reading,

my

> own pursuits), am doing some of my own work (i'm a writer) and am

> exercising with some regularity (i'm a runner -- i'd like to do it

5

> days a week..but back here in the reality of

> leweyville, ......hmmm......i try to make it happen 3 days a week

> and that's a GOOD week when it happens) --- when i'm taking care

of

> myself (as cliched as that sounds) i tend to be much more

patient.

> much. much. much. much.

> >

> > hugs to all,

> > anna

> >

>

>

>

>

>

>

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hi all

indeed -- fitting it all in can be impossible ---

so i try for a little of each --

so even if i don't do my whole one hour run -- i slip

out for 15 mins to run --

even if i can't write for four hours a day -- i try to

squeeze in an hour

that sorta' thing ---

posey (my grandma) is pretty good at staying in

bed/reading from about 11 pm to 3 am .....so i use

that time to get stuff done.......but my writing has

suffered a LOT from the demands of caregiving.

everything else i manage at least a little of.....

wasn't trying to say it isn't a struggle -- i know it

is, i know it is -- and i know i'm lucky that posey

sleeps about 12 hours a day.

love to all

anna in lewyville -- waiting for the PO to designate a

specific zip to this strange land we all live in

together.....

--- jonaslaj wrote:

> ,

>

> When you get that all figured out will you share

> your tips??? I

> haven't had much in the form of proper sleep, eating

> and excersize

> since Dad was diagnosed. I'm not saying it can't be

> done...I just

> haven't figured it out. Maybe , Donna or

> Imogene can pass

> along some hints to us. Lewyville...I like that.

> Do you think we

> can get our own zip and area code...LOL.

>

> Hugs to you,

> Leah

>

>

> >

> > it will come -- i really do believe that it is a

> manifestation of

> grace --

> >

> > on a less ethereal level, i know that when i've

> had something

> resembling enough sleep, am eating properly-ish, am

> having a little

> bit of a life outside of grandma and her needs

> (friends, reading, my

> own pursuits), am doing some of my own work (i'm a

> writer) and am

> exercising with some regularity (i'm a runner -- i'd

> like to do it 5

> days a week..but back here in the reality of

> leweyville, ......hmmm......i try to make it happen

> 3 days a week

> and that's a GOOD week when it happens) --- when

> i'm taking care of

> myself (as cliched as that sounds) i tend to be much

> more patient.

> much. much. much. much.

> >

> > hugs to all,

> > anna

> >

>

>

>

________________________________________________________________________________\

____

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(and love to hate): Yahoo! TV's Guilty Pleasures list.

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I used day care, although I would sleep if that is what I needed. Mom always

ate good, so I ate better than normal....unfortunately.

I also had a vol from the Alzheimers Association that came once a week for 4

hours.

I don't know if you can induce family or if you can some of the church members

or any club you belong to or who ever to come and just sit, but what ever you

can do helps.

I don't know how creative you can be. If you/she have lots of money you can

hire it done. I couldn't stay in the house if someone was here for Mom, I did

like it better when I took her to day care.

Maybe some more will address this issue. It was the hardest thing I had to do

was to make time for myself. My daughter helped when I worked and so I had a

hard time asking her for more time for me to just relax.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: Re: Family Interference

hi all

indeed -- fitting it all in can be impossible ---

so i try for a little of each --

so even if i don't do my whole one hour run -- i slip

out for 15 mins to run --

even if i can't write for four hours a day -- i try to

squeeze in an hour

that sorta' thing ---

posey (my grandma) is pretty good at staying in

bed/reading from about 11 pm to 3 am .....so i use

that time to get stuff done.......but my writing has

suffered a LOT from the demands of caregiving.

everything else i manage at least a little of.....

wasn't trying to say it isn't a struggle -- i know it

is, i know it is -- and i know i'm lucky that posey

sleeps about 12 hours a day.

love to all

anna in lewyville -- waiting for the PO to designate a

specific zip to this strange land we all live in

together.....

--- jonaslaj wrote:

> ,

>

> When you get that all figured out will you share

> your tips??? I

> haven't had much in the form of proper sleep, eating

> and excersize

> since Dad was diagnosed. I'm not saying it can't be

> done...I just

> haven't figured it out. Maybe , Donna or

> Imogene can pass

> along some hints to us. Lewyville...I like that.

> Do you think we

> can get our own zip and area code...LOL.

>

> Hugs to you,

> Leah

>

>

> >

> > it will come -- i really do believe that it is a

> manifestation of

> grace --

> >

> > on a less ethereal level, i know that when i've

> had something

> resembling enough sleep, am eating properly-ish, am

> having a little

> bit of a life outside of grandma and her needs

> (friends, reading, my

> own pursuits), am doing some of my own work (i'm a

> writer) and am

> exercising with some regularity (i'm a runner -- i'd

> like to do it 5

> days a week..but back here in the reality of

> leweyville, ......hmmm......i try to make it happen

> 3 days a week

> and that's a GOOD week when it happens) --- when

> i'm taking care of

> myself (as cliched as that sounds) i tend to be much

> more patient.

> much. much. much. much.

> >

> > hugs to all,

> > anna

> >

>

>

>

________________________________________________________________________________\

____

We won't tell. Get more on shows you hate to love

(and love to hate): Yahoo! TV's Guilty Pleasures list.

http://tv.yahoo.com/collections/265

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PS,

Even if you believe you are the only one that can do take care of her " best, " it

is in your best interest to unlock yourself from the idea that second best might

not be ok. It is ok.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: Re: Family Interference

hi all

indeed -- fitting it all in can be impossible ---

so i try for a little of each --

so even if i don't do my whole one hour run -- i slip

out for 15 mins to run --

even if i can't write for four hours a day -- i try to

squeeze in an hour

that sorta' thing ---

posey (my grandma) is pretty good at staying in

bed/reading from about 11 pm to 3 am .....so i use

that time to get stuff done.......but my writing has

suffered a LOT from the demands of caregiving.

everything else i manage at least a little of.....

wasn't trying to say it isn't a struggle -- i know it

is, i know it is -- and i know i'm lucky that posey

sleeps about 12 hours a day.

love to all

anna in lewyville -- waiting for the PO to designate a

specific zip to this strange land we all live in

together.....

--- jonaslaj wrote:

> ,

>

> When you get that all figured out will you share

> your tips??? I

> haven't had much in the form of proper sleep, eating

> and excersize

> since Dad was diagnosed. I'm not saying it can't be

> done...I just

> haven't figured it out. Maybe , Donna or

> Imogene can pass

> along some hints to us. Lewyville...I like that.

> Do you think we

> can get our own zip and area code...LOL.

>

> Hugs to you,

> Leah

>

>

> >

> > it will come -- i really do believe that it is a

> manifestation of

> grace --

> >

> > on a less ethereal level, i know that when i've

> had something

> resembling enough sleep, am eating properly-ish, am

> having a little

> bit of a life outside of grandma and her needs

> (friends, reading, my

> own pursuits), am doing some of my own work (i'm a

> writer) and am

> exercising with some regularity (i'm a runner -- i'd

> like to do it 5

> days a week..but back here in the reality of

> leweyville, ......hmmm......i try to make it happen

> 3 days a week

> and that's a GOOD week when it happens) --- when

> i'm taking care of

> myself (as cliched as that sounds) i tend to be much

> more patient.

> much. much. much. much.

> >

> > hugs to all,

> > anna

> >

>

>

>

________________________________________________________________________________\

____

We won't tell. Get more on shows you hate to love

(and love to hate): Yahoo! TV's Guilty Pleasures list.

http://tv.yahoo.com/collections/265

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hi donna

thanks for this ---

i totalllllllllllllllllly agree ---

we're working on getting more help ---

posey resists it and most of her kids support her on

not having the help (her kids who are not on site,

mind you) and so it's a battle.....

but i'm not at ALLL hung up on providing the care ---

lol -- in fact some days i think i'd be willing to

leave her with the ups guy if i could sweet talk him

into it. (or anyone else who knocks on the door

mid-day -- y'know what i mean?)

love to all,

anna

--- Donna Mido wrote:

> PS,

>

> Even if you believe you are the only one that can do

> take care of her " best, " it is in your best interest

> to unlock yourself from the idea that second best

> might not be ok. It is ok.

>

> Hugs,

>

> Donna R

>

> Caregave for Mom (after I brought her from WI to MI)

> for 3 years and 4th year in a nh.

> She was almost 89 when she died in '02. No dx other

> than mine.

>

>

> Re: Re: Family Interference

>

> hi all

>

> indeed -- fitting it all in can be impossible ---

>

> so i try for a little of each --

>

> so even if i don't do my whole one hour run -- i

> slip

> out for 15 mins to run --

>

> even if i can't write for four hours a day -- i try

> to

> squeeze in an hour

>

> that sorta' thing ---

>

> posey (my grandma) is pretty good at staying in

> bed/reading from about 11 pm to 3 am .....so i use

> that time to get stuff done.......but my writing has

> suffered a LOT from the demands of caregiving.

>

> everything else i manage at least a little of.....

>

> wasn't trying to say it isn't a struggle -- i know

> it

> is, i know it is -- and i know i'm lucky that posey

> sleeps about 12 hours a day.

>

> love to all

> anna in lewyville -- waiting for the PO to designate

> a

> specific zip to this strange land we all live in

> together.....

>

>

> --- jonaslaj wrote:

>

> > ,

> >

> > When you get that all figured out will you share

> > your tips??? I

> > haven't had much in the form of proper sleep,

> eating

> > and excersize

> > since Dad was diagnosed. I'm not saying it can't

> be

> > done...I just

> > haven't figured it out. Maybe , Donna or

> > Imogene can pass

> > along some hints to us. Lewyville...I like that.

> > Do you think we

> > can get our own zip and area code...LOL.

> >

> > Hugs to you,

> > Leah

> >

> >

> > >

> > > it will come -- i really do believe that it is

> a

> > manifestation of

> > grace --

> > >

> > > on a less ethereal level, i know that when i've

> > had something

> > resembling enough sleep, am eating properly-ish,

> am

> > having a little

> > bit of a life outside of grandma and her needs

> > (friends, reading, my

> > own pursuits), am doing some of my own work (i'm a

> > writer) and am

> > exercising with some regularity (i'm a runner --

> i'd

> > like to do it 5

> > days a week..but back here in the reality of

> > leweyville, ......hmmm......i try to make it

> happen

> > 3 days a week

> > and that's a GOOD week when it happens) --- when

> > i'm taking care of

> > myself (as cliched as that sounds) i tend to be

> much

> > more patient.

> > much. much. much. much.

> > >

> > > hugs to all,

> > > anna

> > >

> >

> >

> >

>

>

>

>

>

________________________________________________________________________________\

____

> We won't tell. Get more on shows you hate to love

> (and love to hate): Yahoo! TV's Guilty Pleasures

> list.

> http://tv.yahoo.com/collections/265

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

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thanks donna --

i'm actually starting a thing i'm calling " circles of

friendly care " when we get back from our vacation ---

i've got a cadre of volunteers -- mostly posey's

friends with a couple of mine thrown in the mix ---

who have agreed to do one companion shift of 4 hours

every two weeks. so they will be around from 12-4

monday through friday and we have a paid helper from

9to 12 m-f and then posey reads/rests in her room from

4-7 m-f and then on tuesday and thrusday nights we

have paid help from 7-10 pm and posey usually gets

ready for bed and goes to her room and reads at 10 pm

(she doesn't go to sleep until 2 ish, but she is

squared away after 10 or 10:30 or so). on saturday

nights posey's daughter (my mother) comes at 7 and

stays until sunday at 2 pm (and i leave). so

realllllllllly -- i can't complain.

er, well, lol -- clearly i CAN complain. but i

shouldn't.

there is just soooooo much to do and just coordinating

all of the above takes a huge amount of prep and time

and there are still not enough hours in the day --

but i know that i/we are fortunate to have the help we

have.

xo

anna

--- Donna Mido wrote:

> I used day care, although I would sleep if that is

> what I needed. Mom always ate good, so I ate better

> than normal....unfortunately.

>

> I also had a vol from the Alzheimers Association

> that came once a week for 4 hours.

>

> I don't know if you can induce family or if you can

> some of the church members or any club you belong to

> or who ever to come and just sit, but what ever you

> can do helps.

>

> I don't know how creative you can be. If you/she

> have lots of money you can hire it done. I couldn't

> stay in the house if someone was here for Mom, I

> did like it better when I took her to day care.

>

> Maybe some more will address this issue. It was the

> hardest thing I had to do was to make time for

> myself. My daughter helped when I worked and so I

> had a hard time asking her for more time for me to

> just relax.

>

> Hugs,

>

> Donna R

>

>

> Caregave for Mom (after I brought her from WI to MI)

> for 3 years and 4th year in a nh.

> She was almost 89 when she died in '02. No dx other

> than mine.

>

>

> Re: Re: Family Interference

>

> hi all

>

> indeed -- fitting it all in can be impossible ---

>

> so i try for a little of each --

>

> so even if i don't do my whole one hour run -- i

> slip

> out for 15 mins to run --

>

> even if i can't write for four hours a day -- i try

> to

> squeeze in an hour

>

> that sorta' thing ---

>

> posey (my grandma) is pretty good at staying in

> bed/reading from about 11 pm to 3 am .....so i use

> that time to get stuff done.......but my writing has

> suffered a LOT from the demands of caregiving.

>

> everything else i manage at least a little of.....

>

> wasn't trying to say it isn't a struggle -- i know

> it

> is, i know it is -- and i know i'm lucky that posey

> sleeps about 12 hours a day.

>

> love to all

> anna in lewyville -- waiting for the PO to designate

> a

> specific zip to this strange land we all live in

> together.....

>

>

> --- jonaslaj wrote:

>

> > ,

> >

> > When you get that all figured out will you share

> > your tips??? I

> > haven't had much in the form of proper sleep,

> eating

> > and excersize

> > since Dad was diagnosed. I'm not saying it can't

> be

> > done...I just

> > haven't figured it out. Maybe , Donna or

> > Imogene can pass

> > along some hints to us. Lewyville...I like that.

> > Do you think we

> > can get our own zip and area code...LOL.

> >

> > Hugs to you,

> > Leah

> >

> >

> > >

> > > it will come -- i really do believe that it is

> a

> > manifestation of

> > grace --

> > >

> > > on a less ethereal level, i know that when i've

> > had something

> > resembling enough sleep, am eating properly-ish,

> am

> > having a little

> > bit of a life outside of grandma and her needs

> > (friends, reading, my

> > own pursuits), am doing some of my own work (i'm a

> > writer) and am

> > exercising with some regularity (i'm a runner --

> i'd

> > like to do it 5

> > days a week..but back here in the reality of

> > leweyville, ......hmmm......i try to make it

> happen

> > 3 days a week

> > and that's a GOOD week when it happens) --- when

> > i'm taking care of

> > myself (as cliched as that sounds) i tend to be

> much

> > more patient.

> > much. much. much. much.

> > >

> > > hugs to all,

> > > anna

> > >

> >

> >

> >

>

>

>

>

>

________________________________________________________________________________\

____

> We won't tell. Get more on shows you hate to love

> (and love to hate): Yahoo! TV's Guilty Pleasures

> list.

> http://tv.yahoo.com/collections/265

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

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Guest guest

,

Can I ask a silly question? If your Mom is available, how was it that you are

doing the caregiving?

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: Re: Family Interference

>

> hi all

>

> indeed -- fitting it all in can be impossible ---

>

> so i try for a little of each --

>

> so even if i don't do my whole one hour run -- i

> slip

> out for 15 mins to run --

>

> even if i can't write for four hours a day -- i try

> to

> squeeze in an hour

>

> that sorta' thing ---

>

> posey (my grandma) is pretty good at staying in

> bed/reading from about 11 pm to 3 am .....so i use

> that time to get stuff done.......but my writing has

> suffered a LOT from the demands of caregiving.

>

> everything else i manage at least a little of.....

>

> wasn't trying to say it isn't a struggle -- i know

> it

> is, i know it is -- and i know i'm lucky that posey

> sleeps about 12 hours a day.

>

> love to all

> anna in lewyville -- waiting for the PO to designate

> a

> specific zip to this strange land we all live in

> together.....

>

>

> --- jonaslaj wrote:

>

> > ,

> >

> > When you get that all figured out will you share

> > your tips??? I

> > haven't had much in the form of proper sleep,

> eating

> > and excersize

> > since Dad was diagnosed. I'm not saying it can't

> be

> > done...I just

> > haven't figured it out. Maybe , Donna or

> > Imogene can pass

> > along some hints to us. Lewyville...I like that.

> > Do you think we

> > can get our own zip and area code...LOL.

> >

> > Hugs to you,

> > Leah

> >

> >

> > >

> > > it will come -- i really do believe that it is

> a

> > manifestation of

> > grace --

> > >

> > > on a less ethereal level, i know that when i've

> > had something

> > resembling enough sleep, am eating properly-ish,

> am

> > having a little

> > bit of a life outside of grandma and her needs

> > (friends, reading, my

> > own pursuits), am doing some of my own work (i'm a

> > writer) and am

> > exercising with some regularity (i'm a runner --

> i'd

> > like to do it 5

> > days a week..but back here in the reality of

> > leweyville, ......hmmm......i try to make it

> happen

> > 3 days a week

> > and that's a GOOD week when it happens) --- when

> > i'm taking care of

> > myself (as cliched as that sounds) i tend to be

> much

> > more patient.

> > much. much. much. much.

> > >

> > > hugs to all,

> > > anna

> > >

> >

> >

> >

>

>

>

>

>

________________________________________________________________________________\

____

> We won't tell. Get more on shows you hate to love

> (and love to hate): Yahoo! TV's Guilty Pleasures

> list.

> http://tv.yahoo.com/collections/265

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

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Guest guest

hi

not a silly question donna ---

my mom is only semi-available........she works full

time four days a week in washington dc whereas posey

lives at the beach -- bethany beach, delaware 2.5

hours outside of washington and has lived there for

the last 25 years and has no desire to leave her house

or to go back to dc. my mom and step-dad have a

house at the beach around the corner from posey -- my

step-dad lives in bethany full time and my mom is at

the beach thursday night until monday morning.

i'm a writer and can write anywhere (theoretically, at

least) so when posey first started having significant

trouble and asked me to come " help with a few things

for a week " it was easy for me to do so.

also.....well.....my mother might be the most

impatient woman who ever lived -- and that's a

description she uses for herself.......she really is

el stinko -- TO PUT IT MILDLY -- when it comes to

dealing with posey. and she hates it. and so in turn

posey hates it. her attitude is " mother will have

to go to assisted living if you can't do it " . (in

fact she'd rather i not take care of posey.........my

mother is big on " fun " and she says all the time " what

you're doing with posey is no fun " .)

it sounds like i'm being hard on my mom -- and i don't

mean to sound that way. people are all

different.......obviously.....and who am i to

judge..............my mom is great in many, many, many

ways. and she does a lot to help in other ways -- she

tracks down items that i request that posey needs

(bed wedges, walker pads, door alarms, wide armed

cotton nightgowns, etc), she stops by for short cheery

visits, she takes posey to the salon sometimes, she

brings over dinner a couple of times a

weekend......she is ALWAYS there when i need to call

and vent and is very supportive in her way.

she is by far the best of posey's six children in

terms of all this --- and she's not one bit in denial

about posey or what's required in terms of assistance.

her siblings -- posey's five other children -- are

another story altogether. these other five -- four

of whom are in dc -- are all in denial to varying

degrees....of those four who are in dc two sons do

nothing and are critical in not helpful ways of me and

obstructionists to posey's quality of life ( " why is

she spending so much money on helpers? she's fine.

why are you telling her she needs all this help " )

........ the third sone does nothing but does no harm

-- and comes to visit at the beach 2 or 3 times a year

for the weekend (though he brought 8 loads of laundry

when he came at thanksgiving. ahem. )

the fourth one -- my aunt -- will do companion duty

once every couple of weeks -- but she is still in a

lot of denial about what posey is capable of and not

AND she won't monitor psoey taking her meds or

administer the meds (so posey doesn't take them at

all, or takes all two days worth of doses at once --

even though i have them divided up into the daily pill

boxes and each daily box has four compartments for

different times of day....) AND she thinks posey

sleeps too much so posey comes home from 24 or48 hour

jaunts to her house exhausted and out of

whack......but my aunt will have posey come and stay

for the weekend and that can be invaluable......and

she is keeping her for two long weekends in

april.....(but then probably won't do it again until

june or july......and will only do a night then).

i could go on -- believe me i could go on.....

but i think y'all get the idea now.

much love

anna

--- Donna Mido wrote:

> ,

>

> Can I ask a silly question? If your Mom is

> available, how was it that you are doing the

> caregiving?

>

> Hugs,

>

> Donna R

>

> Caregave for Mom (after I brought her from WI to MI)

> for 3 years and 4th year in a nh.

> She was almost 89 when she died in '02. No dx other

> than mine.

>

>

> Re: Re: Family

> Interference

> >

> > hi all

> >

> > indeed -- fitting it all in can be impossible ---

> >

> > so i try for a little of each --

> >

> > so even if i don't do my whole one hour run -- i

> > slip

> > out for 15 mins to run --

> >

> > even if i can't write for four hours a day -- i

> try

> > to

> > squeeze in an hour

> >

> > that sorta' thing ---

> >

> > posey (my grandma) is pretty good at staying in

> > bed/reading from about 11 pm to 3 am .....so i use

> > that time to get stuff done.......but my writing

> has

> > suffered a LOT from the demands of caregiving.

> >

> > everything else i manage at least a little of.....

> >

> > wasn't trying to say it isn't a struggle -- i know

> > it

> > is, i know it is -- and i know i'm lucky that

> posey

> > sleeps about 12 hours a day.

> >

> > love to all

> > anna in lewyville -- waiting for the PO to

> designate

> > a

> > specific zip to this strange land we all live in

> > together.....

> >

> >

> > --- jonaslaj wrote:

> >

> > > ,

> > >

> > > When you get that all figured out will you share

> > > your tips??? I

> > > haven't had much in the form of proper sleep,

> > eating

> > > and excersize

> > > since Dad was diagnosed. I'm not saying it

> can't

> > be

> > > done...I just

> > > haven't figured it out. Maybe , Donna

> or

> > > Imogene can pass

> > > along some hints to us. Lewyville...I like

> that.

> > > Do you think we

> > > can get our own zip and area code...LOL.

> > >

> > > Hugs to you,

> > > Leah

> > >

> > >

> > > >

> > > > it will come -- i really do believe that it

> is

> > a

> > > manifestation of

> > > grace --

> > > >

> > > > on a less ethereal level, i know that when

> i've

> > > had something

> > > resembling enough sleep, am eating properly-ish,

> > am

> > > having a little

> > > bit of a life outside of grandma and her needs

> > > (friends, reading, my

> > > own pursuits), am doing some of my own work (i'm

> a

> > > writer) and am

> > > exercising with some regularity (i'm a runner --

> > i'd

> > > like to do it 5

> > > days a week..but back here in the reality of

> > > leweyville, ......hmmm......i try to make it

> > happen

> > > 3 days a week

> > > and that's a GOOD week when it happens) ---

> when

> > > i'm taking care of

> > > myself (as cliched as that sounds) i tend to be

> > much

> > > more patient.

> > > much. much. much. much.

> > > >

> > > > hugs to all,

> > > > anna

> > > >

> > >

> > >

> > >

> >

> >

> >

> >

> >

>

________________________________________________________________________________\

____

> > We won't tell. Get more on shows you hate to love

> > (and love to hate): Yahoo! TV's Guilty Pleasures

> > list.

> > http://tv.yahoo.com/collections/265

> >

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

>

>

>

________________________________________________________________________________\

____

> The fish are biting.

> Get more visitors on your site using Yahoo! Search

> Marketing.

>

http://searchmarketing.yahoo.com/arp/sponsoredsearch_v2.php

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

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Guest guest

I am not sure what Posie did wrong, but I can't believe she has 6 kids who won't

help. Guess I should be able to. My grandma had the same problem. There were

5 girls Grandma raised and she didn't see much of them either. I was the one

that ended up going to get her for a meal,, (She lived at assisted living.)

and Mom would argue with me about that. Thank goodness she had her right mind.

You are a good grand daughter. And she is lucky to have you. You are doing

good at getting them to help as best they can, at least. Hopefully those that

don't will learn soon enough.

Good luck and have a good holiday!

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: Re: Family

> Interference

> >

> > hi all

> >

> > indeed -- fitting it all in can be impossible ---

> >

> > so i try for a little of each --

> >

> > so even if i don't do my whole one hour run -- i

> > slip

> > out for 15 mins to run --

> >

> > even if i can't write for four hours a day -- i

> try

> > to

> > squeeze in an hour

> >

> > that sorta' thing ---

> >

> > posey (my grandma) is pretty good at staying in

> > bed/reading from about 11 pm to 3 am .....so i use

> > that time to get stuff done.......but my writing

> has

> > suffered a LOT from the demands of caregiving.

> >

> > everything else i manage at least a little of.....

> >

> > wasn't trying to say it isn't a struggle -- i know

> > it

> > is, i know it is -- and i know i'm lucky that

> posey

> > sleeps about 12 hours a day.

> >

> > love to all

> > anna in lewyville -- waiting for the PO to

> designate

> > a

> > specific zip to this strange land we all live in

> > together.....

> >

> >

> > --- jonaslaj wrote:

> >

> > > ,

> > >

> > > When you get that all figured out will you share

> > > your tips??? I

> > > haven't had much in the form of proper sleep,

> > eating

> > > and excersize

> > > since Dad was diagnosed. I'm not saying it

> can't

> > be

> > > done...I just

> > > haven't figured it out. Maybe , Donna

> or

> > > Imogene can pass

> > > along some hints to us. Lewyville...I like

> that.

> > > Do you think we

> > > can get our own zip and area code...LOL.

> > >

> > > Hugs to you,

> > > Leah

> > >

> > >

> > > >

> > > > it will come -- i really do believe that it

> is

> > a

> > > manifestation of

> > > grace --

> > > >

> > > > on a less ethereal level, i know that when

> i've

> > > had something

> > > resembling enough sleep, am eating properly-ish,

> > am

> > > having a little

> > > bit of a life outside of grandma and her needs

> > > (friends, reading, my

> > > own pursuits), am doing some of my own work (i'm

> a

> > > writer) and am

> > > exercising with some regularity (i'm a runner --

> > i'd

> > > like to do it 5

> > > days a week..but back here in the reality of

> > > leweyville, ......hmmm......i try to make it

> > happen

> > > 3 days a week

> > > and that's a GOOD week when it happens) ---

> when

> > > i'm taking care of

> > > myself (as cliched as that sounds) i tend to be

> > much

> > > more patient.

> > > much. much. much. much.

> > > >

> > > > hugs to all,

> > > > anna

> > > >

> > >

> > >

> > >

> >

> >

> >

> >

> >

>

________________________________________________________________________________\

____

> > We won't tell. Get more on shows you hate to love

> > (and love to hate): Yahoo! TV's Guilty Pleasures

> > list.

> > http://tv.yahoo.com/collections/265

> >

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

>

>

>

________________________________________________________________________________\

____

> The fish are biting.

> Get more visitors on your site using Yahoo! Search

> Marketing.

>

http://searchmarketing.yahoo.com/arp/sponsoredsearch_v2.php

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

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