Re: a small celebration :) O.

[Guest guest]

Thank you for such a wonderful compliment. It's

always nice to get a pat on the back, I appreciate it.

Jim and I dated for 4 years before we married, he was

in such good health it seemd. I would have bet my life

that he would live to be a ripe old age and healthy up

to the day he died. He was so physically active in

sports and he was a 7th and 8th grade history teacher

and loved to read. He did all the things to keep

himself mentally stimulated and physically fit. Then

we married in 1990 and the next year he developed

Restless Legs Sydrome and then he had back surgery in

1992 and in 1993 he was dx w/Parkinsons. He still

could get around and do the things he loved to do for

about 5 more years and then dementia started to

appear, but not badly, just forgetful of things now

and then and it gradually got worse and in 2000 all

Hell broke loose, (excuse my language) But that is

what it seemed to me, it was a total nightmare to me.

Little did I know it could only get worse. I would

gladly take back those years that I thought were so

horrible, they would seem easy today. I kept Jim's

neurologist informed of all the things that took place

and in 2003 he dx Jim with LBD. So we had about 9 good

years together, counting the 4 years that we dated

before we were married. We have been married for 15

years.

LOL, I think Jim appreciates the other me, but I'll

take what I can get.

, if all goes well with MediCal and Jim is

accepted, he will be going into a nh this summer. I

have done everything that my Elder Care Attorney has

told me to do to qualify. I can no longer afford to

keep him at home. We are very low on money now, the

rest is all tied up in a Trust to his kids. It breaks

my heart and I hope I can be strong when the time

comes. It will be very hard for me. I know there is a

time for everything and it is the time for Jim to go

into a nh. As you know, he has been in facilities for

respite and does well, but it is in Assisted Living

and not a nh, so I am a little affraid with his

combativeness that I will really have to watch that

they do not give him Haldol or Ativan and all the

other things that I will have to watch. He has never

had a pressure sore and this worries me too. I will

watch him like a hawk. In Assisted Living they can not

give medications other than what the LO is perscribed

already, so I feel safe with him in AL, but he has to

stay in a nh, because he will be on MediCal. Thank you

for your concern.

Hugs, Jan

Hope you have a wonderful Spring Holiday, whatever you

celebrate. If you don't celebrate any holidays, hope

you have a wonderful weekend!

--- stimtimminss wrote:

> Jan, the more you share the more I wonder how you do

> it all. You sounded like an

> amazing lady on our first visit and I just continue

> to be amazed as I learn about all you

> contend with. Jim is so lucky to have married you,

> to have you on his side. I am sure he

> appreciates you. (or the other you) LOL How many

> " good " years did you have together?

> , Oakville, Ont.

>

>

> >

> > >

> > > I took Clyndomiacin (sp) for a tooth infection,

> and

> > > two months later I was

> > > hospitalized, because I passed out in the bath

> room

> > > and hit my head pretty

> > > hard. Buggered it up a bit. Also, I was admitted

> for

> > > dehydration, vomiting, and

> > > diarrhea. A young intern figured out why I had

> been

> > > so sick for at least six

> > > weeks. My doctor didn't figure it out. I had

> gone to

> > > him over and over. (We

> > > have since changed doctors)

> > >

> > > Anyway, with the dehydration, my veins were very

> > > tiny. I was stuck fourteen

> > > times with that horrible thing that looks like a

> > > plastic tube, and feels the

> > > size of a large drinking straw, and burns like

> hot

> > > coal, when I arrived.

> > > Every nurse that came in and took a turn did it

> at

> > > least three times, and then

> > > they called someone else. A young man finally

> did

> > > it, after my arms had been

> > > whipped until they were sore. I was glad to get

> out

> > > of there. It was done every

> > > day. Sometimes a big miss and blood everywhere,

> and

> > > sometimes, an arm

> > > swollen a sight, before it is fixed. It's

> especially

> > > fun when it is potassium being

> > > given.

> > >

> > > I don't like those IVs at all, but it is

> something

> > > we put up with. Beats

> > > getting shots around the clock, and I have been

> > > there quite a few times, too.

> > >

> > > My man thought he saw me tonight, and I was in

> the

> > > office all the time. He

> > > said, " I thought it was you. Well, someone was

> in

> > > the room. " A hallucination.

> > >

> > > He is so slow that I can turn around in the

> kitchen

> > > getting lunch on the

> > > table, three or four times before he can get us

> a

> > > glass of water from the

> > > faucets on the refrigerator, and that is after

> I

> > > hand him the glasses. He is so

> > > lovable and willing and wants to be helpful. I

> want

> > > to tell him, " stay out of

> > > my way! " But, of course I don't.

> > >

> > > I am trying to be in his shoes a bit, and go

> along

> > > with it. I am sure it is

> > > very hard for him to be watching himself going

> > > downhill. For him this is the

> > > hard time. The time he knows. When he gets too

> bad

> > > off to know, then it will

> > > be very hard for me. I can handle the bathroom

> issue

> > > with him, as I had to do

> > > so several times in the past when he has been

> sick

> > > or had surgery. But, my

> > > health won't allow my having to get up three or

> four

> > > times every night. I know

> > > I couldn't take that.

> > >

> > > I have thought of going in the nursing home with

> > > him, where his daughter has

> > > nursed for over twenty years. They have the two

> room

> > > " suites " whereby one

> > > room is a bedroom and the other a sitting room.

> (as

> > > described in an earlier

> > > post)

> > >

> > > Why would an AD or LBD patient decide he wants

> to

> > > keep the lights off? MY LO

> > > does that now. Curtains drawn and lights off. I

> > > can't take that for long. I

> > > like sunshine, and let it come through the

> windows,

> > > and to have the lights

> > > on too. Well, I can understand the heat

> factor,

> > > here in South Central Texas,

> > > but the light I want on is a cool cent.

> He

> > > will turn on the stove light

> > > that gets much hotter and gives no light to

> speak

> > > of, but you can't reason

> > > with him, so I am just trying to go along with

> it,

> > > and from time to time I fix

> > > the lights to suit myself.

> > >

> > > Oh, another item. His body temperature doesn't

> stay

> > > regulated very well

> > > because of his bad heart. He has been this way

> since

> > > 1980, after his first

> > > surgery. But now, I can't reason with him, so

> > > Instead of putting on and taking off

> > > clothes he messes with the temp controls all the

> > > time. I will be pouring

> > > perspiration, and have to regulate the temp all

> over

> > > again. I go around the house

> > > and check out things he leaves running or on.

> Doors

> > > left open, yard faucets

> > > running. He thinks he is through with something,

> and

> > > lays it down, and there

> > > it stays totally forgotten.

> > >

> > > And this is still the easy time. Be happy,

> Imogene,

> > > and count you blessings

> > > now. And, talk to yourself about being strong.

> Love

> > > is the strongest force

> > > there is.

> > >

> > > Imogene

> > > Caregiver for my True Texas Gentleman husband

> of 35

> > > years. He has AD and

> > > possibly LBD, is Taking Aricept and Risperdal.

> Age

> > > 72 in May.

> > >

>

=== message truncated ===

Jan Colello, wife of Jim, dx w/Parkinsons 1993 and LBD 2003San Francisco Bay

Area, California

__________________________________________________

[Guest guest]

Jan, you deserve way more than a " pat on the back " . I suspected that your

married time

with Jim proved short because of your extended timeline dealing with his initial

diagnosis.

How well I remember Mom's, having no idea where it would lead. But then she was

living

independently in another city so that when the time came that she needed

intervention,

she wanted it there rather than where I live. Knowing how simple what I have I

gone

through these many years is compared to what you have contended with, and the

toll it

has taken on me, I have to wonder how you continue. You need to care for you

too, and

putting Jim into facilitated care is likely the best decision to be made. You

are a couple

but both of you have needs, It's time yours are met as well. We will be there

with you as

you reluctantly put Jim into nh care this summer.

I have inlaws here already celebrating the family time an Easter meal can bring,

all the way

from Shetland. Actually they are here ( in Canada) because of crises with the

inlaws, but

are taking respite here to join us and 2 of our 3 grown up (I think) kids and 1

significant

other for a family meal tomorrow. The 1 significant other is not of our

culture, and my

son was pleased to experience his first Seder this past week with her family.

We continue

to deal with life but learn as we continue.

You were very cautious with your weekend sentiments, but I will wish you a Happy

Easter,

since everyone here recognizes the holiday!

I wished Mom a happy birthday on Friday, no reaction. Her birthday is Sunday.

I decided

to not feel guilty about not being with her on her day, as, in the sandwich,

there is the

getting together of children and inlaws for a special meal also to deal with.

We do what

we can.

A happy Easter or whatever holiday you acknowledge.

, Oakville Ont.

Mom 92, 12 1/2 years " Parkinsons "

3 years ago LBD diagnosis, evident much longer in hindsight. Encouraged to give

up her

licence 6 years ago.

Currently immobile, in tilt wheelchair, spoonfed pureed food. Spends most of

days behind

closed eyes.

Eltroxin, Tylenol twice a day.

Off Aricept since Feb./06-now eating and drinking less, uncommunicativeSandr

> > >

> > > >

> > > > I took Clyndomiacin (sp) for a tooth infection,

> > and

> > > > two months later I was

> > > > hospitalized, because I passed out in the bath

> > room

> > > > and hit my head pretty

> > > > hard. Buggered it up a bit. Also, I was admitted

> > for

> > > > dehydration, vomiting, and

> > > > diarrhea. A young intern figured out why I had

> > been

> > > > so sick for at least six

> > > > weeks. My doctor didn't figure it out. I had

> > gone to

> > > > him over and over. (We

> > > > have since changed doctors)

> > > >

> > > > Anyway, with the dehydration, my veins were very

> > > > tiny. I was stuck fourteen

> > > > times with that horrible thing that looks like a

> > > > plastic tube, and feels the

> > > > size of a large drinking straw, and burns like

> > hot

> > > > coal, when I arrived.

> > > > Every nurse that came in and took a turn did it

> > at

> > > > least three times, and then

> > > > they called someone else. A young man finally

> > did

> > > > it, after my arms had been

> > > > whipped until they were sore. I was glad to get

> > out

> > > > of there. It was done every

> > > > day. Sometimes a big miss and blood everywhere,

> > and

> > > > sometimes, an arm

> > > > swollen a sight, before it is fixed. It's

> > especially

> > > > fun when it is potassium being

> > > > given.

> > > >

> > > > I don't like those IVs at all, but it is

> > something

> > > > we put up with. Beats

> > > > getting shots around the clock, and I have been

> > > > there quite a few times, too.

> > > >

> > > > My man thought he saw me tonight, and I was in

> > the

> > > > office all the time. He

> > > > said, " I thought it was you. Well, someone was

> > in

> > > > the room. " A hallucination.

> > > >

> > > > He is so slow that I can turn around in the

> > kitchen

> > > > getting lunch on the

> > > > table, three or four times before he can get us

> > a

> > > > glass of water from the

> > > > faucets on the refrigerator, and that is after

> > I

> > > > hand him the glasses. He is so

> > > > lovable and willing and wants to be helpful. I

> > want

> > > > to tell him, " stay out of

> > > > my way! " But, of course I don't.

> > > >

> > > > I am trying to be in his shoes a bit, and go

> > along

> > > > with it. I am sure it is

> > > > very hard for him to be watching himself going

> > > > downhill. For him this is the

> > > > hard time. The time he knows. When he gets too

> > bad

> > > > off to know, then it will

> > > > be very hard for me. I can handle the bathroom

> > issue

> > > > with him, as I had to do

> > > > so several times in the past when he has been

> > sick

> > > > or had surgery. But, my

> > > > health won't allow my having to get up three or

> > four

> > > > times every night. I know

> > > > I couldn't take that.

> > > >

> > > > I have thought of going in the nursing home with

> > > > him, where his daughter has

> > > > nursed for over twenty years. They have the two

> > room

> > > > " suites " whereby one

> > > > room is a bedroom and the other a sitting room.

> > (as

> > > > described in an earlier

> > > > post)

> > > >

> > > > Why would an AD or LBD patient decide he wants

> > to

> > > > keep the lights off? MY LO

> > > > does that now. Curtains drawn and lights off. I

> > > > can't take that for long. I

> > > > like sunshine, and let it come through the

> > windows,

> > > > and to have the lights

> > > > on too. Well, I can understand the heat

> > factor,

> > > > here in South Central Texas,

> > > > but the light I want on is a cool cent.

> > He

> > > > will turn on the stove light

> > > > that gets much hotter and gives no light to

> > speak

> > > > of, but you can't reason

> > > > with him, so I am just trying to go along with

> > it,

> > > > and from time to time I fix

> > > > the lights to suit myself.

> > > >

> > > > Oh, another item. His body temperature doesn't

> > stay

> > > > regulated very well

> > > > because of his bad heart. He has been this way

> > since

> > > > 1980, after his first

> > > > surgery. But now, I can't reason with him, so

> > > > Instead of putting on and taking off

> > > > clothes he messes with the temp controls all the

> > > > time. I will be pouring

> > > > perspiration, and have to regulate the temp all

> > over

> > > > again. I go around the house

> > > > and check out things he leaves running or on.

> > Doors

> > > > left open, yard faucets

> > > > running. He thinks he is through with something,

> > and

> > > > lays it down, and there

> > > > it stays totally forgotten.

> > > >

> > > > And this is still the easy time. Be happy,

> > Imogene,

> > > > and count you blessings

> > > > now. And, talk to yourself about being strong.

> > Love

> > > > is the strongest force

> > > > there is.

> > > >

> > > > Imogene

> > > > Caregiver for my True Texas Gentleman husband

> > of 35

> > > > years. He has AD and

> > > > possibly LBD, is Taking Aricept and Risperdal.

> > Age

> > > > 72 in May.

> > > >

> >

> === message truncated ===

>

>

> Jan Colello, wife of Jim, dx w/Parkinsons 1993 and LBD 2003San Francisco Bay

Area,

California

>

> __________________________________________________

>

[Guest guest]

Thank you , I do acknowledge Easter. Happy

Easter to you too. Jim is staying with a caregiver at

home and I am going to my sister's for dinner along

with my two daughters and parents. My sister lives an

hour and a half away from me.

Enjoy your day! Hugs, Jan

--- stimtimminss wrote:

> Jan, you deserve way more than a " pat on the back " .

> I suspected that your married time

> with Jim proved short because of your extended

> timeline dealing with his initial diagnosis.

> How well I remember Mom's, having no idea where it

> would lead. But then she was living

> independently in another city so that when the time

> came that she needed intervention,

> she wanted it there rather than where I live.

> Knowing how simple what I have I gone

> through these many years is compared to what you

> have contended with, and the toll it

> has taken on me, I have to wonder how you continue.

> You need to care for you too, and

> putting Jim into facilitated care is likely the best

> decision to be made. You are a couple

> but both of you have needs, It's time yours are met

> as well. We will be there with you as

> you reluctantly put Jim into nh care this summer.

> I have inlaws here already celebrating the family

> time an Easter meal can bring, all the way

> from Shetland. Actually they are here ( in Canada)

> because of crises with the inlaws, but

> are taking respite here to join us and 2 of our 3

> grown up (I think) kids and 1 significant

> other for a family meal tomorrow. The 1

> significant other is not of our culture, and my

> son was pleased to experience his first Seder this

> past week with her family. We continue

> to deal with life but learn as we continue.

> You were very cautious with your weekend sentiments,

> but I will wish you a Happy Easter,

> since everyone here recognizes the holiday!

> I wished Mom a happy birthday on Friday, no

> reaction. Her birthday is Sunday. I decided

> to not feel guilty about not being with her on her

> day, as, in the sandwich, there is the

> getting together of children and inlaws for a

> special meal also to deal with. We do what

> we can.

> A happy Easter or whatever holiday you acknowledge.

>

> , Oakville Ont.

>

> Mom 92, 12 1/2 years " Parkinsons "

> 3 years ago LBD diagnosis, evident much longer in

> hindsight. Encouraged to give up her

> licence 6 years ago.

> Currently immobile, in tilt wheelchair, spoonfed

> pureed food. Spends most of days behind

> closed eyes.

> Eltroxin, Tylenol twice a day.

> Off Aricept since Feb./06-now eating and drinking

> less, uncommunicativeSandr

>

>

> > > >

> > > > Hi Imogene,

> > > > My husband too has to have all the lights off

> and

> > > > curtains drawn in the daytime. I think things

> > > reflect

> > > > on the windows and it bothers him. I know that

> the

> > > > lights on in the house at night can reflect

> images

> > > on

> > > > the windows that they see and cause them to be

> > > > delusional that someone is roaming around,

> when it

> > > is

> > > > themselves that they see in the reflection.

> > > > The thing with the thermostat too is an issue

> > > here.

> > > > Jim is always cold, no matter how many

> blankets or

> > > > heated rice bags tucked inside he has on or

> > > sweaters

> > > > and gloves in the house, he is still cold. My

> bill

> > > for

> > > > running the furnace to keep Jim warm is

> enormous,

> > > > anywhere from $300.00 - $500.00 a mo. I also

> have

> > > a

> > > > space heater that I put next to him. I can't

> wait

> > > for

> > > > summer and warmer weather, so I don't have to

> run

>

=== message truncated ===

Jan Colello, wife of Jim, dx w/Parkinsons 1993 and LBD 2003San Francisco Bay

Area, California

__________________________________________________