Fw: Re: Re: Don

[Guest guest]

Lets see if this goes through this time!

Donna R

Don

>

>

>

> Hello everyone,

>

> Don became violent over the weekend. I was so glad was here to see

> it. It has been difficult for others that only see his loving side to

> really know how bad it can get.

>

> I called Hospice and they came out on Sunday, and saw it for themselves.

> The person that came happened to be our Spiritual Brother. He didn't stop

> with helping us until Don was committed to a psyche hospital today. Hospice

> told me I was too ill myself to care for Don, and that he needed to be

> placed.

>

> I was not able to go with them to the hospital, but, or ,

> will take me later this week. I have spent too many nights up with Don trying

> to keep him in a happy balance, and I just can't handle it any more.

>

> He tried hard to hit us, and yelled very loudly over and over, and hit

> every thing around him. Turned his potty chair over and beat it for quite a

> while. Threw his shoes at us, which we dodged. We couldn't go near him. We

> just couldn't calm him down at all. And, thank goodness he couldn't get out

> of bed. He sat on the side of the bed. I was able to sit on the bed with him

> today, and he held me tight. He let me kiss him, and rub his back, after

> he loosened his tight grip.

>

> Hospice was on the phone for about four hours trying to place him. Hospice

> was up until 3 A.M. with another family in Cibilo. Finally, today, he got

> Don admitted to a psyche hospital. An ambulance came for Don.

>

> Of course I have cried a lot as I know this usually means it is closer to

> the end of his life, but what kind of life is the poor man living anyway?

> This is far from the first time he has gone out on a limb, but it was the

> longest period of time. He was still that way today.

>

> He came around enough to tell me he loved me, and said he was sorry, as

> if he could help it. Poor darling. Sunday he acted like he hated me. He told

> me I was his mother, and I know he was mad at me because I wouldn't fix

> what was wrong. After all Mothers can fix any boo boo.

>

> He has talked out of his head a lot. What he said to us almost never made

> sense. And oh yes, he will never be released from this place.

>

> I am exhausted to say the least, and will talk another time.

>

> Love so very much,

> Imogene

>

>

>

> Love with a smile,

>

> Imogene

>

> Caregiver for my true Texas Gentleman Husband, who was diagnosed with AD

> in '05, but correctly diagnosed with LBD in March '06.

> A happy personality is contagious. Infect someone today

> Yours Truly

>

>

>

[Guest guest]

Don

>

>

>

> Hello everyone,

>

> Don became violent over the weekend. I was so glad was here to see

> it. It has been difficult for others that only see his loving side to

> really know how bad it can get.

>

> I called Hospice and they came out on Sunday, and saw it for themselves.

> The person that came happened to be our Spiritual Brother. He didn't stop

> with helping us until Don was committed to a psyche hospital today. Hospice

> told me I was too ill myself to care for Don, and that he needed to be

> placed.

>

> I was not able to go with them to the hospital, but, or ,

> will take me later this week. I have spent too many nights up with Don trying

> to keep him in a happy balance, and I just can't handle it any more.

>

> He tried hard to hit us, and yelled very loudly over and over, and hit

> every thing around him. Turned his potty chair over and beat it for quite a

> while. Threw his shoes at us, which we dodged. We couldn't go near him. We

> just couldn't calm him down at all. And, thank goodness he couldn't get out

> of bed. He sat on the side of the bed. I was able to sit on the bed with him

> today, and he held me tight. He let me kiss him, and rub his back, after

> he loosened his tight grip.

>

> Hospice was on the phone for about four hours trying to place him. Hospice

> was up until 3 A.M. with another family in Cibilo. Finally, today, he got

> Don admitted to a psyche hospital. An ambulance came for Don.

>

> Of course I have cried a lot as I know this usually means it is closer to

> the end of his life, but what kind of life is the poor man living anyway?

> This is far from the first time he has gone out on a limb, but it was the

> longest period of time. He was still that way today.

>

> He came around enough to tell me he loved me, and said he was sorry, as

> if he could help it. Poor darling. Sunday he acted like he hated me. He told

> me I was his mother, and I know he was mad at me because I wouldn't fix

> what was wrong. After all Mothers can fix any boo boo.

>

> He has talked out of his head a lot. What he said to us almost never made

> sense. And oh yes, he will never be released from this place.

>

> I am exhausted to say the least, and will talk another time.

>

> Love so very much,

> Imogene

>

>

>

> Love with a smile,

>

> Imogene

>

> Caregiver for my true Texas Gentleman Husband, who was diagnosed with AD

> in '05, but correctly diagnosed with LBD in March '06.

> A happy personality is contagious. Infect someone today

> Yours Truly

>

>

>

[Guest guest]

Hi Dearest Donna,

My computer crashed. I guess it was about time. It was older than me, and

I am older than dirt. My grandson came to the rescue very quickly with

another one. This one has XP. Whatever that is?

It is such a shame your second surgery isn't healing as well as the first.

I sure am sorry for that. Yet, if you think of it, you are one day closer

to a better knee each day.

A hug or two from all of us will make it heal even faster.

Here is my hug ((((((( Donna))))))))

Love you dear woman,

Imogene

In a message dated 4/16/2010 5:51:07 A.M. Central Daylight Time,

twomido@... writes:

Lets see if this goes through this time!

Donna R

-----Original Message-----

From: Donna Mido

Sent: Thursday, April 15, 2010 8:53 AM

To: LBDcaregivers

Subject: Re: Re: Don

Second leg is healing. Not the same as the first one, but I think God

knew I wouldn't go back if I had this much trouble with the first one.

It is coming. Only 2 weeks out of surgery and things are getting better.

I seem much more impatient this time. (With my other doing so well now.)

It is hard to remember what I went through 4 and a half months ago. That

sentence is hard for me to believe.

Thanks for asking. You aren't as far out of it as you think. I am so

glad you are getting some rest. That does make all the difference in the

world. And you do deserve your health. Don is very aware you love him, even

if all this stuff is happening.

My hugs and prayers are with you both.

Donna R

[Guest guest]

Many thanks, Imogene,

It may be I am just not remembering quite as well and it does get tiring just

looking forward to healing all the time.

It is a bit better each week.

Hugs,

Donna R

Re: Re: Don

Second leg is healing. Not the same as the first one, but I think God

knew I wouldn't go back if I had this much trouble with the first one.

It is coming. Only 2 weeks out of surgery and things are getting better.

I seem much more impatient this time. (With my other doing so well now.)

It is hard to remember what I went through 4 and a half months ago. That

sentence is hard for me to believe.

Thanks for asking. You aren't as far out of it as you think. I am so

glad you are getting some rest. That does make all the difference in the

world. And you do deserve your health. Don is very aware you love him, even

if all this stuff is happening.

My hugs and prayers are with you both.

Donna R

[Guest guest]

Hi Donna,

With the first surgery there are many unknowns...and if I remember correctly

wasn't that your first surgery ever in your whole life?

Well, with me the first knee transplant that I had was horrendous...the swelling

was so bad, the pain as so bad, there was the unknown of how long it would take

for the pain to go away; how long it would be until I could walk normal again,

etc. We get through each day looking for that little sign that something is

indeed changing and getting better.

With the second, you know that you were at the same point that you are now, and

you also have some sort of 'amnesia' about all those days that transpired from

how you feel right now with your second knee and where your first knee is right

now.

You have seen the light at the end of the tunnel from your first surgery and you

just think that the train should be traveling faster this time...the good thing

you know is that this knee that you just had surgery on is going to be feeling

like the first one that you had surgery on very soon.

Take it easy and enjoy the last bit of time that you have to take it easy before

life has to go back to normal...then you will be looking back and saying, why

did I want that time to pass so quickly.

With me, I think that I just want to be at that end point and skip the middle

part...after over 30 surgeries I have lost my patience that I used to have, and

also with my spine surgeries the result of the surgery is supposed to be to ease

some of the pain, but the means to do that also weakens the spine more and

places more restrictions on me. So it is a matter of after going through the

surgery and proper recovery period I will have less pain, but I also have that

unknown of how long I will have before the spine starts having more problems

from what was just done. But, in your case, the results are good...this has

fixed a serious painful problem and I don't know of anyone that had the knee

replacements and actually did all the proper physical therapy and exercises that

is having more problems.

You can do it, Donna...patience is a virtue....just hang in there a little bit

longer

>

> Many thanks, Imogene,

>

> It may be I am just not remembering quite as well and it does get tiring just

looking forward to healing all the time.

>

> It is a bit better each week.

>

> Hugs,

>

> Donna R

>

>

> Re: Re: Don

>

> Second leg is healing. Not the same as the first one, but I think God

> knew I wouldn't go back if I had this much trouble with the first one.

>

> It is coming. Only 2 weeks out of surgery and things are getting better.

> I seem much more impatient this time. (With my other doing so well now.)

> It is hard to remember what I went through 4 and a half months ago. That

> sentence is hard for me to believe.

>

> Thanks for asking. You aren't as far out of it as you think. I am so

> glad you are getting some rest. That does make all the difference in the

> world. And you do deserve your health. Don is very aware you love him, even

> if all this stuff is happening.

>

> My hugs and prayers are with you both.

>

> Donna R

>

>

>

>

>

>

>

[Guest guest]

Gee, Joan,

I would say you have a pretty good memory. And yes this is my second surgery in

my life. How did you ever remember that?

And I think you have been on the same trip I am doing! You described it to a

tee. I didn't really have a lot of swelling with my first knee and this one

does. Makes all the diff in the world. But it is moving bit by bit. My PT

says measure week to week, not day to day and that is helpful.

You are right, I am not as patient as I may need to be. The train should be

traveling faster. But how I enjoy the scenery if the train goes any faster.

It will get better and is getting better. This week I could do the bike at 10

AM different than last week where I couldn't get it to go around before 2 PM..

LOL

Thanks for your description. It was perfect.

And I hope you are out of the 30!!!!!! surgeries and feeling a bit better for

all of that.?

Hugs,

Donna R

Re: Re: Don

>

> Second leg is healing. Not the same as the first one, but I think God

> knew I wouldn't go back if I had this much trouble with the first one.

>

> It is coming. Only 2 weeks out of surgery and things are getting better.

> I seem much more impatient this time. (With my other doing so well now.)

> It is hard to remember what I went through 4 and a half months ago. That

> sentence is hard for me to believe.

>

> Thanks for asking. You aren't as far out of it as you think. I am so

> glad you are getting some rest. That does make all the difference in the

> world. And you do deserve your health. Don is very aware you love him, even

> if all this stuff is happening.

>

> My hugs and prayers are with you both.

>

> Donna R

>

>

>

>

>

>

>

[Guest guest]

Bless your heart Joan, What you have gone through! It is almost

unbelievable that one person could

through all that, and come out to talk about it. Well, for one I am glad

you are with us and can talk about it.

I don't know how much mail I have missed as my computer crashed, and was

that way until Saturday

afternoon when my grandson brought me another. But, I haven't had time to

check the WEB mail.

My son took me to see Don today. My beloved husband is very bad off. I told

the list some time back that he had started curling into a fetal position

here at home. Well now he can't handle himself at all. He is curled up all

the time, and in a lot of pain. I talked with the DON about addressing the

pain, and will pursue it further tomorrow.

From all indications he doesn't have long to live, but then I remember Jan

with her Jim. He has fooled all of us a long time. Don is free of any

infections.

My D-I-L and I both left the NH crying. It was heartbreaking. I hope to get

my Caregiver, , to take me to see Don tomorrow. I want to talk to the

main staff about Don's care, and what they are doing for his pain.

Love you all,

Imogene

In a message dated 4/18/2010 7:50:23 P.M. Central Daylight Time,

joan_croft@... writes:

Donna,

I just remember when you posted that you were real nervous because you

never had any surgeries before. I was thinking....wow, I wish that was me.

I started with an Osteomyelitis infection in my right mandible after some

dental procedures...that went on and on and in all I had 7 surgeries on

that jaw, and lost two teeth because of the infection.

Then it was my left knee...worked in a bank and when the coin shipment

came, I knocked a box of quarters (approx 40 lbs) into the side of my knee and

it knocked a chunk of the articular cartilege (the cartilage that is

attached to the bone) off both the femur and tibia, and it was a most horrible

indescribable pain when it happened and then every step it would just be

scraping and scraping. I had three arthroscopic surgeries where they tried to

get scar tissue to grow into the bone where the cartilege was missing but

it didn't work. So I was put on a waiting list for donor material - 325

days - and then they took a piece of the donor knee and removed the bad part

of mine and transplanted it. Then less than 5 years later I had to have

another arthroscopic surgery because there was so much scar tissue from the

surgery that it was causing pain when I walked. About 4 1/2 years after

that the knee started hurting more and I was working in an office with stairs

and I would have

to go up and down them sometimes 20 times a day. I'm sure that didn't

help. They took MRI and the first graft was deteriorating and had ragged edges

so I was again put on a waiting list and this time it was only 3 1/2

months until I got the surgery. The second time was actually a whole lot

easier, as they had perfected the surgery quite a bit. I am happy to say that

it

has now been 10 1/2 years since the last surgery and I seem to be doing

just fine. The transplant surgery is actually much harder to recover from

because you can't bear full weight on that leg until about 3 months.

But somewhere between the 4th and 5th knee surgery, I developed carpal

tunnel syndrome and so in 1993 I had carpal tunnel surgery in September,

carpal tunnel surgery in November and then the knee arthroscopy in December.

After the carpal tunnel surgery, I was having pain in my hands (thenar

myocitis) and while going to physical therapy it became very apparent that

there was something wrong with my right upper arm...turns out my shoulder was

severly impinged and then I had to have shoulder sugery - they took out

half of my collar bone and most of the acromium, and that was a VERY painful

recovery in itself.

After that is when I had the second knee transplant.

In May 2002, on my way to work, stopped third person in line at a red

light, a not-so-good driver was coming off the off ramp and I think trying to

beat the light and when he turned must not have been looking and slammed

right into the back of me. The impact was so hard that it threw my car into

the one in front of me, and that car into the first car at the red light and

then her car was pushed into the intersection...thank God people were not

turning off the freeway at that moment. I had serious injuries to both the

lumbar/sacral and cervical spine. For my lower back the knee transplant

doctor asked for me to see his colleage at UCSD, and he did a couple

procedures which lessened the pain, but not really too much. After all the

treatment liek anti-inflammatory meds, physical therapy etc. they did an MRI

(at

my primary care doctor's order - not all the specialists that I was going

to) and my neck was so messed up...I hadn't hardly been able to turn it since

the accident an

d had daily sharp shooting pains into my skull...I had to go to a

neurosurgeon who performed my first cervical fusion. As I was recuperating

from

that I told the neurosurgeon about how bad my back was and he ordered MRI of

my lower back. On Valentines Day 2005, he did a full open back surgery -

not a fusion - just cutting away some of the bony structures to give the

nerves some space, and then not two months later on April 13, 2005, I was on

my way to get xrays of my lower back, stopped at a stop light. The light

turned green but there were people in the crosswalk and I was waiting for

them to pass me before turning into them, and the lady in back of me rammed

into my rear end. My neck started hurting again immediately and my lower

back which was still having quite a bit of pain was injured more also. I did

have an MRI just one week before this accident because of all the pain I

was still having in my lower back, so that proved very helpful for the second

injury case.

But that MRI showed that I had a huge fluid filled cyst in my back which

was encasing and going around the spinal cord. So then I had to go to the

hospital and the radiologist doctor with the aid of the CAT scan machine

found the exact place where the needle could be inserted to syringe out all

the fluid.

I kept going to the neurosurgeon but all he did was give me drugs, drugs,

drugs. Drugs that I could barely be awake for more than 2 hours in a day,

and that is not for me. I would rather be in pain than be a zombie. And

then almost every medicine that I was given would cause rashes or other

problems. My system had enough.

My primary care doctor referred me to a spine specialist and he took over

my care and he did another cervical fusion (from a new disk herniated from

the second surgery) and then he did the lumbar sacral fusion but not until

I would give him the go ahead...but by that time the entire disk was no

longer in the spine...so the tendons and oligaments had atrophied and he

couldnt raise the space between the two vertebrae far enough and then I had

problems with the nerves not having enough space to exit the spine. He did a

foraminotoy on both sides and that gave me only about two months relief...at

that point I had more MRIs and the doctor told me that I had another

herniated cervical disk and that my lower back just needed some rest and it

might get better...that was in February 2008, so I went on disability an it

just happened to be the same time that Mom was going through the dementia and

couldn't be left alone. So, I was able to be there for her those last

couple of months. I

had big plans on how I was going to structure the days and make flash cards

to play games like go fish with pictures of people that we knew, fruits

and vegetables, and other familiar things so that the game wouldn't get too

boring using the same cards over and over again.

I was shocked when the doctors told me a month later that her body was

shutting down...but I am glad that she never got to the late stages of LBD.

Mom had died, I was on disability, my work had alreday replaced me with

someone else, and I did have a home in North Las Vegas where we went on

weekends for three months prior to her death. I just made four day trips then

where I would be here and breathe better and then go back to San Diego and

pack some stuff, then pack it in my car and after four days go back to North

Las Vegas...soon everything was packed the commercial movers came to get

the bulk of the stuff and then I went back to clean up all the trash that

was still there. The house was put up on the market on July 22nd and when I

went back for a doctor appt for the State of California Disability, there

were already three offers on the house...I made two counter offers and one

guy wanted it so much that he upped my counter offer. So at least that went

well, except for the house was graffittied twice and broken itno at least

twice, I had to replace a kitchen window that was broken, a sliding glass

door that was pus

hed right off of the tracks and then the broken window in the kitchen ca

used a breeze to blow out one or more of the pilot lights on the stove and

the gas was escaping. My friend was my real estate agent and she had her

hands full with MOm's house.

In November 2008, I finally got a spine surgeon here, and the one

herniated cervical disk that I had in January 2008 was now three herniated

cervical

disks and three herniated lumbar disks. A year ago January the surgeon

here did a fusion on one of the cervical disks and then in July/August I had

that horrendous surgery that was supposed to be one day n the hopsital and

turned out to be 13 days. The doctor had to remove the laminas from six

levels of my spine and there was scar tissue that was attached to the dura

(the membrane that encloses the fluid and the spinal cord) I think it must

have been from that fluid filled cyst taht I had..wll anyway I lost some

spinal fluid when he removed the scar tissue and patched the dura in two

places,

but things were not going well and every time that I sat up I was having

SERIOUS pains in my skull...like a bowling ball travelling at a hundred mph

trying to break through the top. After 5 days they scheduled emergency

procedure to put m

y blood in teh epidural space and it was so supposed to clot and stop the

fluid loss. But, it didn't and thee days later the surgeon had to get his

entire team together to do another surgery on Saturday morning...then he

found one more tear...he patched that one and reinforced the two previous

patches.

And to all of this that I have listed I cannot even count how many times

in the last 7 years that I have gone to surgery centers for epidural steroid

injections, formainal steroid injections, etc. So, yes, I hope that this

is the end, but I know that unless I die relatively soon, that this is not

the end.

Sorry this post is so long, but this is probably close to the whole story.

Joan

> >

> > Many thanks, Imogene,

> >

> > It may be I am just not remembering quite as well and it does get

tiring just looking forward to healing all the time.

> >

> > It is a bit better each week.

> >

> > Hugs,

> >

> > Donna R

> >

> >

> > -----Original Message-----

> > From: Iward27663@

> > Sent: Saturday, April 17, 2010 6:27 PM

> > To: LBDcaregivers

> > Subject: Re: Fw: Re: Re: Don

> >

> >

> > Hi Dearest Donna,

> >

> > My computer crashed. I guess it was about time. It was older than me,

and

> > I am older than dirt. My grandson came to the rescue very quickly

with

> > another one. This one has XP. Whatever that is?

> >

> > It is such a shame your second surgery isn't healing as well as the

first.

> > I sure am sorry for that. Yet, if you think of it, you are one day

closer

> > to a better knee each day.

> >

> > A hug or two from all of us will make it heal even faster.

> >

> > Here is my hug ((((((( Donna))))))))

> >

> > Love you dear woman,

> > Imogene

> >

> >

> >

> >

> >

> >

> >

> >

> > In a message dated 4/16/2010 5:51:07 A.M. Central Daylight Time,

> > twomido@ writes:

> >

> > Lets see if this goes through this time!

> >

> > Donna R

> >

> >

> > -----Original Message-----

> > From: Donna Mido

> > Sent: Thursday, April 15, 2010 8:53 AM

> > To: LBDcaregivers

> > Subject: Re: Re: Don

> >

> > Second leg is healing. Not the same as the first one, but I think

God

> > knew I wouldn't go back if I had this much trouble with the first

one.

> >

> > It is coming. Only 2 weeks out of surgery and things are getting

better.

> > I seem much more impatient this time. (With my other doing so well

now.)

> > It is hard to remember what I went through 4 and a half months ago.

That

> > sentence is hard for me to believe.

> >

> > Thanks for asking. You aren't as far out of it as you think. I am

so

> > glad you are getting some rest. That does make all the difference in

the

> > world. And you do deserve your health. Don is very aware you love

him, even

> > if all this stuff is happening.

> >

> > My hugs and prayers are with you both.

> >

> > Donna R

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Donna,

I just remember when you posted that you were real nervous because you never had

any surgeries before. I was thinking....wow, I wish that was me.

I started with an Osteomyelitis infection in my right mandible after some dental

procedures...that went on and on and in all I had 7 surgeries on that jaw, and

lost two teeth because of the infection.

Then it was my left knee...worked in a bank and when the coin shipment came, I

knocked a box of quarters (approx 40 lbs) into the side of my knee and it

knocked a chunk of the articular cartilege (the cartilage that is attached to

the bone) off both the femur and tibia, and it was a most horrible indescribable

pain when it happened and then every step it would just be scraping and

scraping. I had three arthroscopic surgeries where they tried to get scar

tissue to grow into the bone where the cartilege was missing but it didn't work.

So I was put on a waiting list for donor material - 325 days - and then they

took a piece of the donor knee and removed the bad part of mine and transplanted

it. Then less than 5 years later I had to have another arthroscopic surgery

because there was so much scar tissue from the surgery that it was causing pain

when I walked. About 4 1/2 years after that the knee started hurting more and I

was working in an office with stairs and I would have to go up and down them

sometimes 20 times a day. I'm sure that didn't help. They took MRI and the

first graft was deteriorating and had ragged edges so I was again put on a

waiting list and this time it was only 3 1/2 months until I got the surgery.

The second time was actually a whole lot easier, as they had perfected the

surgery quite a bit. I am happy to say that it has now been 10 1/2 years since

the last surgery and I seem to be doing just fine. The transplant surgery is

actually much harder to recover from because you can't bear full weight on that

leg until about 3 months.

But somewhere between the 4th and 5th knee surgery, I developed carpal tunnel

syndrome and so in 1993 I had carpal tunnel surgery in September, carpal tunnel

surgery in November and then the knee arthroscopy in December.

After the carpal tunnel surgery, I was having pain in my hands (thenar myocitis)

and while going to physical therapy it became very apparent that there was

something wrong with my right upper arm...turns out my shoulder was severly

impinged and then I had to have shoulder sugery - they took out half of my

collar bone and most of the acromium, and that was a VERY painful recovery in

itself.

After that is when I had the second knee transplant.

In May 2002, on my way to work, stopped third person in line at a red light, a

not-so-good driver was coming off the off ramp and I think trying to beat the

light and when he turned must not have been looking and slammed right into the

back of me. The impact was so hard that it threw my car into the one in front

of me, and that car into the first car at the red light and then her car was

pushed into the intersection...thank God people were not turning off the freeway

at that moment. I had serious injuries to both the lumbar/sacral and cervical

spine. For my lower back the knee transplant doctor asked for me to see his

colleage at UCSD, and he did a couple procedures which lessened the pain, but

not really too much. After all the treatment liek anti-inflammatory meds,

physical therapy etc. they did an MRI (at my primary care doctor's order - not

all the specialists that I was going to) and my neck was so messed up...I hadn't

hardly been able to turn it since the accident and had daily sharp shooting

pains into my skull...I had to go to a neurosurgeon who performed my first

cervical fusion. As I was recuperating from that I told the neurosurgeon about

how bad my back was and he ordered MRI of my lower back. On Valentines Day

2005, he did a full open back surgery - not a fusion - just cutting away some of

the bony structures to give the nerves some space, and then not two months later

on April 13, 2005, I was on my way to get xrays of my lower back, stopped at a

stop light. The light turned green but there were people in the crosswalk and I

was waiting for them to pass me before turning into them, and the lady in back

of me rammed into my rear end. My neck started hurting again immediately and my

lower back which was still having quite a bit of pain was injured more also. I

did have an MRI just one week before this accident because of all the pain I was

still having in my lower back, so that proved very helpful for the second injury

case. But that MRI showed that I had a huge fluid filled cyst in my back which

was encasing and going around the spinal cord. So then I had to go to the

hospital and the radiologist doctor with the aid of the CAT scan machine found

the exact place where the needle could be inserted to syringe out all the fluid.

I kept going to the neurosurgeon but all he did was give me drugs, drugs, drugs.

Drugs that I could barely be awake for more than 2 hours in a day, and that is

not for me. I would rather be in pain than be a zombie. And then almost every

medicine that I was given would cause rashes or other problems. My system had

enough.

My primary care doctor referred me to a spine specialist and he took over my

care and he did another cervical fusion (from a new disk herniated from the

second surgery) and then he did the lumbar sacral fusion but not until I would

give him the go ahead...but by that time the entire disk was no longer in the

spine...so the tendons and oligaments had atrophied and he couldnt raise the

space between the two vertebrae far enough and then I had problems with the

nerves not having enough space to exit the spine. He did a foraminotoy on both

sides and that gave me only about two months relief...at that point I had more

MRIs and the doctor told me that I had another herniated cervical disk and that

my lower back just needed some rest and it might get better...that was in

February 2008, so I went on disability an it just happened to be the same time

that Mom was going through the dementia and couldn't be left alone. So, I was

able to be there for her those last couple of months. I had big plans on how I

was going to structure the days and make flash cards to play games like go fish

with pictures of people that we knew, fruits and vegetables, and other familiar

things so that the game wouldn't get too boring using the same cards over and

over again.

I was shocked when the doctors told me a month later that her body was shutting

down...but I am glad that she never got to the late stages of LBD.

Mom had died, I was on disability, my work had alreday replaced me with someone

else, and I did have a home in North Las Vegas where we went on weekends for

three months prior to her death. I just made four day trips then where I would

be here and breathe better and then go back to San Diego and pack some stuff,

then pack it in my car and after four days go back to North Las Vegas...soon

everything was packed the commercial movers came to get the bulk of the stuff

and then I went back to clean up all the trash that was still there. The house

was put up on the market on July 22nd and when I went back for a doctor appt for

the State of California Disability, there were already three offers on the

house...I made two counter offers and one guy wanted it so much that he upped my

counter offer. So at least that went well, except for the house was graffittied

twice and broken itno at least twice, I had to replace a kitchen window that was

broken, a sliding glass door that was pushed right off of the tracks and then

the broken window in the kitchen caused a breeze to blow out one or more of the

pilot lights on the stove and the gas was escaping. My friend was my real

estate agent and she had her hands full with MOm's house.

In November 2008, I finally got a spine surgeon here, and the one herniated

cervical disk that I had in January 2008 was now three herniated cervical disks

and three herniated lumbar disks. A year ago January the surgeon here did a

fusion on one of the cervical disks and then in July/August I had that

horrendous surgery that was supposed to be one day n the hopsital and turned out

to be 13 days. The doctor had to remove the laminas from six levels of my spine

and there was scar tissue that was attached to the dura (the membrane that

encloses the fluid and the spinal cord) I think it must have been from that

fluid filled cyst taht I had..wll anyway I lost some spinal fluid when he

removed the scar tissue and patched the dura in two places, but things were not

going well and every time that I sat up I was having SERIOUS pains in my

skull...like a bowling ball travelling at a hundred mph trying to break through

the top. After 5 days they scheduled emergency procedure to put my blood in teh

epidural space and it was so supposed to clot and stop the fluid loss. But, it

didn't and thee days later the surgeon had to get his entire team together to do

another surgery on Saturday morning...then he found one more tear...he patched

that one and reinforced the two previous patches.

And to all of this that I have listed I cannot even count how many times in the

last 7 years that I have gone to surgery centers for epidural steroid

injections, formainal steroid injections, etc. So, yes, I hope that this is the

end, but I know that unless I die relatively soon, that this is not the end.

Sorry this post is so long, but this is probably close to the whole story.

Joan

> >

> > Many thanks, Imogene,

> >

> > It may be I am just not remembering quite as well and it does get tiring

just looking forward to healing all the time.

> >

> > It is a bit better each week.

> >

> > Hugs,

> >

> > Donna R

> >

> >

> > Re: Re: Don

> >

> > Second leg is healing. Not the same as the first one, but I think God

> > knew I wouldn't go back if I had this much trouble with the first one.

> >

> > It is coming. Only 2 weeks out of surgery and things are getting better.

> > I seem much more impatient this time. (With my other doing so well now.)

> > It is hard to remember what I went through 4 and a half months ago. That

> > sentence is hard for me to believe.

> >

> > Thanks for asking. You aren't as far out of it as you think. I am so

> > glad you are getting some rest. That does make all the difference in the

> > world. And you do deserve your health. Don is very aware you love him,

even

> > if all this stuff is happening.

> >

> > My hugs and prayers are with you both.

> >

> > Donna R

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

I don't know what is causing the pain. If we touch him, he acts in pain. He

frowns, and pulls back, or even groans a bit. It does seem to be arthritic

type pain, and from being curled I think.

This is why I need to talk to the staff tomorrow.

Love a lot,

Imogene

In a message dated 4/18/2010 11:48:32 P.M. Central Daylight Time,

joan_croft@... writes:

Forgive me for even having to ask...Mom never got to even the mid stages.

I think that the curling into fetal position is due to the

Parkinsonism...is the pain from being drawn into that position or is the pain

from another

facet of this disease?

[Guest guest]

Forgive me for even having to ask...Mom never got to even the mid stages.

I think that the curling into fetal position is due to the Parkinsonism...is the

pain from being drawn into that position or is the pain from another facet of

this disease?

> > >

> > > Many thanks, Imogene,

> > >

> > > It may be I am just not remembering quite as well and it does get

> tiring just looking forward to healing all the time.

> > >

> > > It is a bit better each week.

> > >

> > > Hugs,

> > >

> > > Donna R

> > >

> > >

> > > -----Original Message-----

> > > From: Iward27663@

> > > Sent: Saturday, April 17, 2010 6:27 PM

> > > To: LBDcaregivers

> > > Subject: Re: Fw: Re: Re: Don

> > >

> > >

> > > Hi Dearest Donna,

> > >

> > > My computer crashed. I guess it was about time. It was older than me,

> and

> > > I am older than dirt. My grandson came to the rescue very quickly

> with

> > > another one. This one has XP. Whatever that is?

> > >

> > > It is such a shame your second surgery isn't healing as well as the

> first.

> > > I sure am sorry for that. Yet, if you think of it, you are one day

> closer

> > > to a better knee each day.

> > >

> > > A hug or two from all of us will make it heal even faster.

> > >

> > > Here is my hug ((((((( Donna))))))))

> > >

> > > Love you dear woman,

> > > Imogene

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > In a message dated 4/16/2010 5:51:07 A.M. Central Daylight Time,

> > > twomido@ writes:

> > >

> > > Lets see if this goes through this time!

> > >

> > > Donna R

> > >

> > >

> > > -----Original Message-----

> > > From: Donna Mido

> > > Sent: Thursday, April 15, 2010 8:53 AM

> > > To: LBDcaregivers

> > > Subject: Re: Re: Don

> > >

> > > Second leg is healing. Not the same as the first one, but I think

> God

> > > knew I wouldn't go back if I had this much trouble with the first

> one.

> > >

> > > It is coming. Only 2 weeks out of surgery and things are getting

> better.

> > > I seem much more impatient this time. (With my other doing so well

> now.)

> > > It is hard to remember what I went through 4 and a half months ago.

> That

> > > sentence is hard for me to believe.

> > >

> > > Thanks for asking. You aren't as far out of it as you think. I am

> so

> > > glad you are getting some rest. That does make all the difference in

> the

> > > world. And you do deserve your health. Don is very aware you love

> him, even

> > > if all this stuff is happening.

> > >

> > > My hugs and prayers are with you both.

> > >

> > > Donna R

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

He is under the care of hospice, correct?

Then they should be making sure that he isn't in any discomfort.

Please keep us informed what you find out tomorrow.

>

>

> I don't know what is causing the pain. If we touch him, he acts in pain. He

> frowns, and pulls back, or even groans a bit. It does seem to be arthritic

> type pain, and from being curled I think.

>

> This is why I need to talk to the staff tomorrow.

>

> Love a lot,

> Imogene

>

>

> In a message dated 4/18/2010 11:48:32 P.M. Central Daylight Time,

> joan_croft@... writes:

>

> Forgive me for even having to ask...Mom never got to even the mid stages.

>

> I think that the curling into fetal position is due to the

> Parkinsonism...is the pain from being drawn into that position or is the pain

from another

> facet of this disease?

>

>

>

>

>

>

>

[Guest guest]

Now that I think about it, Mom did have some hypersensitivity to pain in her

last couple of weeks...we couldn't touch her feet without her grimacing. We had

hospice and they just said it was in response to touch...not pain there all the

time..of course two totally different people and two totally different

situations.

> >

> >

> > I don't know what is causing the pain. If we touch him, he acts in pain. He

> > frowns, and pulls back, or even groans a bit. It does seem to be arthritic

> > type pain, and from being curled I think.

> >

> > This is why I need to talk to the staff tomorrow.

> >

> > Love a lot,

> > Imogene

> >

> >

> > In a message dated 4/18/2010 11:48:32 P.M. Central Daylight Time,

> > joan_croft@ writes:

> >

> > Forgive me for even having to ask...Mom never got to even the mid stages.

> >

> > I think that the curling into fetal position is due to the

> > Parkinsonism...is the pain from being drawn into that position or is the

pain from another

> > facet of this disease?

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Joan, I am seriously thinking of getting my Mom hospice care. I take

her to her neurologist Wed. and will ask her about that. My Mom is in deep

deep hallucinations and doesn't want to be bothered by caregivers though.

She is getting married, or married, or her husband's are getting murdered,

or she's inheriting millions or trillions of dollars or she someone is

going to kill her every day or every other day. This is what comes out of her

mind and mouth every minute she's awake. She goes on the couch and kisses

the pillows, talks love to these men constantly, and its like so sad,

seeing an 86 yr. old woman do and say these things. I know this isn't her at

all. She even looks totally a different person out of her eyes. Sometimes

her eyes are so wild looking, big and wild looking, scary. Last night she

got up and woke everyone up in the house around 11:30 saying someone was in

her bed trying to kill her, I finally had to give her a Xanax pill to get

her to sleep! Sometimes I try not to let these crazy things affect me,

and try to block it all out, but some days it puts so much stress on me

that I feel like I'm shaking all over or a nervous wreck!!!

This neurologist has hopefully GOT TO HELP ME!!!! I'm desperate and the

low dose of Seroquel 25 mg. AM and 25 mg. PM (its only been 2 weeks since

she's been on this), is NOT WORKING!!

So if I were to get Hospice out here, it would be like a caregiver or

nurse doing things for her, like taking BP, temperature, those type things a

regular nurse does???? Right Joan? If this is what they do, then she will

not allow them to see her. I already know that from the last home health

care nurse that came a month ago when she refused to see her for 2 weeks in

a row.

Thanks for any input ya'll might have about this.

God bless,

In a message dated 4/19/2010 12:04:55 A.M. Central Daylight Time,

joan_croft@... writes:

He is under the care of hospice, correct?

Then they should be making sure that he isn't in any discomfort.

Please keep us informed what you find out tomorrow.

--- In _LBDcaregivers@LBDcaregiverLBD_

(mailto:LBDcaregivers ) , Iward27663@., Iwa

>

>

> I don't know what is causing the pain. If we touch him, he acts in pain.

He

> frowns, and pulls back, or even groans a bit. It does seem to be

arthritic

> type pain, and from being curled I think.

>

> This is why I need to talk to the staff tomorrow.

>

> Love a lot,

> Imogene

>

>

> In a message dated 4/18/2010 11:48:32 P.M. Central Daylight Time,

> joan_croft@. joan_crof

>

> Forgive me for even having to ask...Mom never got to even the mid

stages.

>

> I think that the curling into fetal position is due to the

> Parkinsonism. Parkinsonism.<WBR>..is the pain from being drawn into that

position or is the

> facet of this disease?

>

>

>

>

>

>

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

>

[Guest guest]

Hi, my MOm was on Aricept for over one year and she hallucinated while on

that all the time, and Namenda too and still hallucinated.

I will ask about Risperadol. It sounds like your Mom was an easy person

to take care of. Unlike some with Lewy Body that are combatitive,

hallucinate, urinate everywhere, and misbehave a lot.

Oh if it were that easy, that Mom would allow someone to come in and help

her or give her med's or BP, but she has a VERY SHORT ATTENTION SPAN!!!!!!

And is hyper and has a temper nowadays with this disease.

But I won't give up hope.

In a message dated 4/19/2010 12:47:30 P.M. Central Daylight Time,

joan_croft@... writes:

We were in California and the hospice that we had was great. The girls

(ususally) were wonderful...We were in California and the hospice that we had

was great. The girls (ususally) were wonderful...<WBR>they came in wearing

regular clothes and would usually do li

However, your neurologist has to give your Mom something for the

hallucinations.However, your neurologist has to give your Mom something for the

hallucinations.<WBR>..I know that it wasn't one of the preferred meds and she

was on it before she was diagnosedwith LBD, but Mom had Risperadol and also

Aricept for most of the first month or so, and that did

Hospice is not like most people would assume not having used them. It was

like Mom had visitors a few times a week adn they also had another person

that would come and talk to me and my borther ans sister if we were there,

because you need to have some guidance too, you are going through a lot and

they understand and can talk to you about it and help you also.

The good thing is that once you sign onto hospice you need to do

everything the way that they say...they know when to start/stop/change meds;

they

provide the diapers if needed, mouth swabs, etc. The medicines are all

delivered by them, and because of that it is hospice services and most

insurances

pay 100%. Hospice is not the 'end of the world' last couple weeks thing

that it was in teh past, but something that helps people with terminal

illnesses...The good thing is that once you sign onto hospice you need to do ev

One day Mom asked one of the nurses where she was from, or read hospice on

her name tag or something...One day Mom asked one of the nurses where she

was from, or read hospice on her name tag or something...<WBR>I was across

the room talking to the social worker...and so then she said

hospice....does that mean that I am going to die. T

Keep us posted, OK?

>

> Hi Joan, I am seriously thinking of getting my Mom hospice care. I take

> her to her neurologist Wed. and will ask her about that. My Mom is in

deep

> deep hallucinations and doesn't want to be bothered by caregivers

though.

> She is getting married, or married, or her husband's are getting

murdered,

> or she's inheriting millions or trillions of dollars or she someone is

> going to kill her every day or every other day. This is what comes out

of her

> mind and mouth every minute she's awake. She goes on the couch and

kisses

> the pillows, talks love to these men constantly, and its like so sad,

> seeing an 86 yr. old woman do and say these things. I know this isn't

her at

> all. She even looks totally a different person out of her eyes.

Sometimes

> her eyes are so wild looking, big and wild looking, scary. Last night

she

> got up and woke everyone up in the house around 11:30 saying someone was

in

> her bed trying to kill her, I finally had to give her a Xanax pill to

get

> her to sleep! Sometimes I try not to let these crazy things affect me,

> and try to block it all out, but some days it puts so much stress on me

> that I feel like I'm shaking all over or a nervous wreck!!!

>

> This neurologist has hopefully GOT TO HELP ME!!!! I'm desperate and the

> low dose of Seroquel 25 mg. AM and 25 mg. PM (its only been 2 weeks

since

> she's been on this), is NOT WORKING!!

>

> So if I were to get Hospice out here, it would be like a caregiver or

> nurse doing things for her, like taking BP, temperature, those type

things a

> regular nurse does???? Right Joan? If this is what they do, then she

will

> not allow them to see her. I already know that from the last home health

> care nurse that came a month ago when she refused to see her for 2 weeks

in

> a row.

>

> Thanks for any input ya'll might have about this.

> God bless,

>

>

>

> In a message dated 4/19/2010 12:04:55 A.M. Central Daylight Time,

> joan_croft@. joan_

>

>

>

>

> He is under the care of hospice, correct?

> Then they should be making sure that he isn't in any discomfort.

> Please keep us informed what you find out tomorrow.

>

> --- In _LBDcaregivers@ --- In _LBDcaregiver

> (mailto:_LBDcaregivers@LBDcaregiverLBD_

(mailto:LBDcaregivers ) ) , Iward27663@, Iwa

> >

> >

> > I don't know what is causing the pain. If we touch him, he acts in

pain.

> He

> > frowns, and pulls back, or even groans a bit. It does seem to be

> arthritic

> > type pain, and from being curled I think.

> >

> > This is why I need to talk to the staff tomorrow.

> >

> > Love a lot,

> > Imogene

> >

> >

> > In a message dated 4/18/2010 11:48:32 P.M. Central Daylight Time,

> > joan_croft@ joan_crof

> >

> > Forgive me for even having to ask...Mom never got to even the mid

> stages.

> >

> > I think that the curling into fetal position is due to the

> > Parkinsonism. Parkinsonism.<WBR>..is the pain from being drawn into

that

> position or is the

> > facet of this disease?

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

We were in California and the hospice that we had was great. The girls

(ususally) were wonderful...they came in wearing regular clothes and would

usually do little chit chat before taking blood pressure or anything. She was

more on show time when they were there.

However, your neurologist has to give your Mom something for the

hallucinations...I know that it wasn't one of the preferred meds and she was on

it before she was diagnosedwith LBD, but Mom had Risperadol and also Aricept for

most of the first month or so, and that did take away her scary hallucinations

and also some of the other visual hallucinations.

Hospice is not like most people would assume not having used them. It was like

Mom had visitors a few times a week adn they also had another person that would

come and talk to me and my borther ans sister if we were there, because you need

to have some guidance too, you are going through a lot and they understand and

can talk to you about it and help you also.

The good thing is that once you sign onto hospice you need to do everything the

way that they say...they know when to start/stop/change meds; they provide the

diapers if needed, mouth swabs, etc. The medicines are all delivered by them,

and because of that it is hospice services and most insurances pay 100%.

Hospice is not the 'end of the world' last couple weeks thing that it was in teh

past, but something that helps people with terminal illnesses...an illness that

will be there and eventually get worse until death.

One day Mom asked one of the nurses where she was from, or read hospice on her

name tag or something...I was across the room talking to the social worker...and

so then she said hospice....does that mean that I am going to die. The hospice

nurse told her very sweetly, oh,honey we are all going to die one day...Mom was

OK with that.

Keep us posted, OK?

>

> Hi Joan, I am seriously thinking of getting my Mom hospice care. I take

> her to her neurologist Wed. and will ask her about that. My Mom is in deep

> deep hallucinations and doesn't want to be bothered by caregivers though.

> She is getting married, or married, or her husband's are getting murdered,

> or she's inheriting millions or trillions of dollars or she someone is

> going to kill her every day or every other day. This is what comes out of

her

> mind and mouth every minute she's awake. She goes on the couch and kisses

> the pillows, talks love to these men constantly, and its like so sad,

> seeing an 86 yr. old woman do and say these things. I know this isn't her at

> all. She even looks totally a different person out of her eyes. Sometimes

> her eyes are so wild looking, big and wild looking, scary. Last night she

> got up and woke everyone up in the house around 11:30 saying someone was in

> her bed trying to kill her, I finally had to give her a Xanax pill to get

> her to sleep! Sometimes I try not to let these crazy things affect me,

> and try to block it all out, but some days it puts so much stress on me

> that I feel like I'm shaking all over or a nervous wreck!!!

>

> This neurologist has hopefully GOT TO HELP ME!!!! I'm desperate and the

> low dose of Seroquel 25 mg. AM and 25 mg. PM (its only been 2 weeks since

> she's been on this), is NOT WORKING!!

>

> So if I were to get Hospice out here, it would be like a caregiver or

> nurse doing things for her, like taking BP, temperature, those type things a

> regular nurse does???? Right Joan? If this is what they do, then she will

> not allow them to see her. I already know that from the last home health

> care nurse that came a month ago when she refused to see her for 2 weeks in

> a row.

>

> Thanks for any input ya'll might have about this.

> God bless,

>

>

>

> In a message dated 4/19/2010 12:04:55 A.M. Central Daylight Time,

> joan_croft@... writes:

>

>

>

>

> He is under the care of hospice, correct?

> Then they should be making sure that he isn't in any discomfort.

> Please keep us informed what you find out tomorrow.

>

> --- In _LBDcaregivers@LBDcaregiverLBD_

> (mailto:LBDcaregivers ) , Iward27663@, Iwa

> >

> >

> > I don't know what is causing the pain. If we touch him, he acts in pain.

> He

> > frowns, and pulls back, or even groans a bit. It does seem to be

> arthritic

> > type pain, and from being curled I think.

> >

> > This is why I need to talk to the staff tomorrow.

> >

> > Love a lot,

> > Imogene

> >

> >

> > In a message dated 4/18/2010 11:48:32 P.M. Central Daylight Time,

> > joan_croft@ joan_crof

> >

> > Forgive me for even having to ask...Mom never got to even the mid

> stages.

> >

> > I think that the curling into fetal position is due to the

> > Parkinsonism. Parkinsonism.<WBR>..is the pain from being drawn into that

> position or is the

> > facet of this disease?

> >

> >

> >

> >

> >

> >

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

> >

>

>

>

>

>

>

[Guest guest]

linda,

daddy had hospice for about 8 months befre he fell and then had to go to nursing

home. 

 

first they came 2-3 times a week for giving him a bath, they also were supposed

to do his laundry adn change his bedding but i found it was much better for all

involved esp daddy if we changed his beddng while he was showering. as daddy was

so diffucutl to get out of chairs and he was not ablew to stand for any length

of time so it just workedout better, and as for laundry i did it myself,  but

if i was overwhelmed when donnie was working and daddy has extra loads do to

potty issues the nurse would throw a load in the washer before she left and if

laod iwas in dryier she would bring it to me to flod. but that was an exception

like when i was sick and donnie was at work.

as daddy got worse, hospice came 5 days a week, bathedhim, cut his hair, trimmed

and shaved him, cut his toenails, ugh i ciouodnt do that, i hate toe nail

tirmming.  lol. i can clean a dirty butt but cant cut toenails wierd huh/???

when daddy found out that it was hospice, the aide said, you know mr andersen, i

only help special people and you and your daughter and son in law are special

poeple so i want to help you all, and daddy was fine afte rthat and when ever

she came , daddy said  our wonderful hleper is here, i am going to be clean

again. but before hospice daddy had reverted to when he was a kid and you only

bathed on satureday so we were so grateful for  hospice and almsot daily

baths. 

i highly recommned hospice. 

 

oh one quick story,  one day daddy has a very bad bowel day, i no sooner got

him cleaned up and he would mess again, and he would play in it if i didnt catch

it right away, and for the third time that day he got messy and this time i was

in the bathroom my self when he did it, and i wasnt there quick enough and he

was covered in it from head to toe,  ears were full of it, i mean you get the

picture, it was all over the walls, the bed the floor him, his clothes and i

broke down, donnie was out of town working and he couldnt come home and i just

lost it, i otld daddy i would be right back afetr i washed his face and hands

and stepped outside to catch my breath and shed a few tears. it wasnt our day

for the nurse to come see us but hse happened to be nearby adn deicded to stop

by and hceck on us, as she came closer to the house she saw me outside bawling

my eyes out, she jumped out of her car and said sharon honey what is wrong is

your daddy ok, , i broek

down said yess but.  and between sobs she got the story, she said, take your

dogs for a walk to the water (we have an inlet from the lagoon down teh street

from us) take a breather come backn in 45 minutes or so. and she shooed me out

of the house/yard, so while me and the dogs had walked down to teh water and sat

tehre and meditated, she sat daddy on the toilet and told him to hold on to the

bars and sit there for a little while, meanwhile she washed the walls, the bed,

the ceilng, the floors, and put fresh linens on his bed and she made the bed the

way i do, in multiple layers for easy emergency stirpping of bed at ntie. then

she let daddy sit on the toilet while she patiently cleaned him from the top of

his head to the bottom of his feet. she had him siton teh toilet to clean teh

worst of it and then put him in the shower and scrubbed him clean, and then he

did it in the tub but she  cleaned it up and then recleaned him and dried him

off and

tuckedhim back in bed. she hten started a load fo laundry adn sorted the rest

so i could do it quickly and easily. then she called the doctor to find out what

to do for dady adn had the rx delivered to us, and insturcted me out oto give it

to him. after all that she had to clean herself up too, so she cleaner herself

up and then seh gave daddy a big hug adn me too and she said mr andersen i will

call about you later, if you need me you and miss sharon call me right away. 

and i will see you later you handsome man you.  well daddy grinned from ear to

ear at being called handsome and said oh i iwll call you i promise. then she

asked me to walk her to her car, so i did and she said, if it happensa gain and

you are stressing i dont care hwat time call me i will come back out  *she

lived 30 mnutes away * and she gave me a hug,  i said ohhh thank yuou for

helping me this afternoon i know you are the nurse not an aide, and she looked

at me, adn said my job

is to help yuou with yuor dad, i had a feeling something was up i cuoldnt get

you two off my mind, she knew donnie was out of town. i couldnt beleive what she

did for me and i promptly wrote a very long 'attagirl' letter to her boss

commending her for going 100% out of her way to help me and daddy. i so admire

and respect thsoe people who work there, i could do it for daddy but could i do

it for a non family member, no i couldnt gotta love those hospice people  hgus.

sharon

 

Daughter of Leonard whom was diagnosed in May 2004 and died of complicatons

*blood pressure started dropping and wouldn't recover* on Sept 25, 2005. He had

bad case of Dr Jekyl/Mr Hyde scenarios. He was showing hallucinations and

falling issues since prior to 1994. We moved in to take care of him Jan 19, 2003

and still live in his house. And in feb 2009, i have been diagonosed with 99%

probability of lbd.

Subject: Fw: Re: Re: Don

To: LBDcaregivers

Date: Monday, April 19, 2010, 12:45 PM

 

We were in California and the hospice that we had was great. The girls

(ususally) were wonderful... they came in wearing regular clothes and would

usually do little chit chat before taking blood pressure or anything. She was

more on show time when they were there.

However, your neurologist has to give your Mom something for the hallucinations.

...I know that it wasn't one of the preferred meds and she was on it before she

was diagnosedwith LBD, but Mom had Risperadol and also Aricept for most of the

first month or so, and that did take away her scary hallucinations and also some

of the other visual hallucinations.

Hospice is not like most people would assume not having used them. It was like

Mom had visitors a few times a week adn they also had another person that would

come and talk to me and my borther ans sister if we were there, because you need

to have some guidance too, you are going through a lot and they understand and

can talk to you about it and help you also.

The good thing is that once you sign onto hospice you need to do everything the

way that they say...they know when to start/stop/change meds; they provide the

diapers if needed, mouth swabs, etc. The medicines are all delivered by them,

and because of that it is hospice services and most insurances pay 100%. Hospice

is not the 'end of the world' last couple weeks thing that it was in teh past,

but something that helps people with terminal illnesses... an illness that will

be there and eventually get worse until death.

One day Mom asked one of the nurses where she was from, or read hospice on her

name tag or something... I was across the room talking to the social

worker...and so then she said hospice....does that mean that I am going to die.

The hospice nurse told her very sweetly, oh,honey we are all going to die one

day...Mom was OK with that.

Keep us posted, OK?

>

> Hi Joan, I am seriously thinking of getting my Mom hospice care. I take

> her to her neurologist Wed. and will ask her about that. My Mom is in deep

> deep hallucinations and doesn't want to be bothered by caregivers though.

> She is getting married, or married, or her husband's are getting murdered,

> or she's inheriting millions or trillions of dollars or she someone is

> going to kill her every day or every other day. This is what comes out of her

> mind and mouth every minute she's awake. She goes on the couch and kisses

> the pillows, talks love to these men constantly, and its like so sad,

> seeing an 86 yr. old woman do and say these things. I know this isn't her at

> all. She even looks totally a different person out of her eyes. Sometimes

> her eyes are so wild looking, big and wild looking, scary. Last night she

> got up and woke everyone up in the house around 11:30 saying someone was in

> her bed trying to kill her, I finally had to give her a Xanax pill to get

> her to sleep! Sometimes I try not to let these crazy things affect me,

> and try to block it all out, but some days it puts so much stress on me

> that I feel like I'm shaking all over or a nervous wreck!!!

>

> This neurologist has hopefully GOT TO HELP ME!!!! I'm desperate and the

> low dose of Seroquel 25 mg. AM and 25 mg. PM (its only been 2 weeks since

> she's been on this), is NOT WORKING!!

>

> So if I were to get Hospice out here, it would be like a caregiver or

> nurse doing things for her, like taking BP, temperature, those type things a

> regular nurse does???? Right Joan? If this is what they do, then she will

> not allow them to see her. I already know that from the last home health

> care nurse that came a month ago when she refused to see her for 2 weeks in

> a row.

>

> Thanks for any input ya'll might have about this.

> God bless,

>

>

>

> In a message dated 4/19/2010 12:04:55 A.M. Central Daylight Time,

> joan_croft@. .. writes:

>

>

>

>

> He is under the care of hospice, correct?

> Then they should be making sure that he isn't in any discomfort.

> Please keep us informed what you find out tomorrow.

>

> --- In _LBDcaregivers@ LBDcaregiverLBD_

> (mailto:LBDcaregivers@ yahoogroups. com) , Iward27663@, Iwa

> >

> >

> > I don't know what is causing the pain. If we touch him, he acts in pain.

> He

> > frowns, and pulls back, or even groans a bit. It does seem to be

> arthritic

> > type pain, and from being curled I think.

> >

> > This is why I need to talk to the staff tomorrow.

> >

> > Love a lot,

> > Imogene

> >

> >

> > In a message dated 4/18/2010 11:48:32 P.M. Central Daylight Time,

> > joan_croft@ joan_crof

> >

> > Forgive me for even having to ask...Mom never got to even the mid

> stages.

> >

> > I think that the curling into fetal position is due to the

> > Parkinsonism. Parkinsonism. <WBR>..is the pain from being drawn into that

> position or is the

> > facet of this disease?

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Thanks you so much Imogene! It may even be healing as fast as the other and I

just don't remember? It is enough already. A few more months and I will be out

in the sun. Biking and hiking!

Hope you a feeling a bit better and a bit more rested. Hugs to Don.

Hugs to you!

Donna R

Re: Re: Don

Second leg is healing. Not the same as the first one, but I think God

knew I wouldn't go back if I had this much trouble with the first one.

It is coming. Only 2 weeks out of surgery and things are getting better.

I seem much more impatient this time. (With my other doing so well now.)

It is hard to remember what I went through 4 and a half months ago. That

sentence is hard for me to believe.

Thanks for asking. You aren't as far out of it as you think. I am so

glad you are getting some rest. That does make all the difference in the

world. And you do deserve your health. Don is very aware you love him, even

if all this stuff is happening.

My hugs and prayers are with you both.

Donna R

[Guest guest]

Mom was put on Aricept and Risperadol after going through evaluations due to her

visual hallucinations that people were going to break in and they were leaving

notes in the mailbox that they were going to break into the house, and even

while driving she called my brother and told him to hav ethe police at our house

when we got home because she was afraid of me and told him if he didn't call the

police that the next time he's see her she would be a pile of bloody bones.

That is the night that I took her straight to the hospital emergency room

instead of going home.

It was another week before we could get her (due to social workers giving

incorrect information) admitted to a neighboring hospital's geriatric-psych unit

for evaluation. They put her on Aricept and Risperadol but they could tell that

there was something else going on and they referred me to the wonderful Center

for Memory and Aging where the doctors were aprised of LBD and they did the

total evaluation in 3 visits...result LBD.

My mom always told me that she didn't want to live if she ever got dementia...it

wasn't even two months from when she was diagnosed that she passed away..form

hyperparathryroidism. I think she had a borderline problem with that a few

years before and I think after hearing and remembering what she heard even if

she was in a confused state at the time, I think she just lost her will to live

and that took over. The neurologist told me that she was in the mild/mid stages

of LBD. She was admitted to the hospital twice in her last month with urinary

problems and the last time the doctor on call told us that her body had already

started to shut down and she was in the dying process. She appeared to be

asleep when he told us, and once in the hospital she asked me when I came back

to her room if she was dying, and I just told her that she had this

hyperparathyroidsism that was taking the calcium out of her bones and putting it

into her bloodstream so that is why she was there getting the meds via IV (which

was technically true, but the doctor also told us not to tell her that she was

dying because it would make her heart heavy). She was totally out of it when

the hospice intake person came to the house, and then about 20 minutes later,

just like a light switch had been turned on, there she was - MOM again. I am

reasonably sure now, that she had heard the doctor talking to us, that she had

heard us talking to the hospice nurses when she appeared to be sleeping. But, I

think she didn't want to believe it and maybe didn't have the heart to talk

about it. I thank God that on her last day, when she was in a coma, I did talk

to her and tell her all the important stuff that I needed to. Two days before

that she went itno a coma and when my brother shook her out of it, later that

evening she told me that she was 'different now' after I questioned her because

I was very confused abotu what she was saying, she told me 'I saw the angels,

I'm different now. I have to say after that time, I never saw her in the LBD

confusion, and I think that was wiped away by the angels and that is why she was

'different now'.

I loved my mom dearly, and still do, but I do feel that she was blessed to not

have made it to the later stages of LBD. It's true, that I could still have her

physical presence with me, but to still want her to be here knowing that, would

be very selfish.

My Mom was always very easy going...and perhaps because she was already in the

dying process that it was easier for her to ask the questions so sweetly and

accept the answers - although true - with no more questions asked.

Let me just add about the Risperadol...it is not one of the preferred LBD drugs.

Mom was put on that before the LBD diagnosis. I can remember less than two

months of taking it she began to complain about her neck hurting her and then

she was having a hard time holding her head up. She would moan in pain if I

tried to help her put her head up. I bought a throw pillow to put behind her

head in the car so that it would cushion it and not hurt so bad. Our primary

care doctor said that the risperadol was over-relaxing her and causing that. I

knwo that the geriatric psychiatrist gave us samples of a different medication

for her, but that was the day that she went to the hospital less than a month

before she died...sorry I don't remember what it was or if it helped.

> >

> > Hi Joan, I am seriously thinking of getting my Mom hospice care. I take

> > her to her neurologist Wed. and will ask her about that. My Mom is in

> deep

> > deep hallucinations and doesn't want to be bothered by caregivers

> though.

> > She is getting married, or married, or her husband's are getting

> murdered,

> > or she's inheriting millions or trillions of dollars or she someone is

> > going to kill her every day or every other day. This is what comes out

> of her

> > mind and mouth every minute she's awake. She goes on the couch and

> kisses

> > the pillows, talks love to these men constantly, and its like so sad,

> > seeing an 86 yr. old woman do and say these things. I know this isn't

> her at

> > all. She even looks totally a different person out of her eyes.

> Sometimes

> > her eyes are so wild looking, big and wild looking, scary. Last night

> she

> > got up and woke everyone up in the house around 11:30 saying someone was

> in

> > her bed trying to kill her, I finally had to give her a Xanax pill to

> get

> > her to sleep! Sometimes I try not to let these crazy things affect me,

> > and try to block it all out, but some days it puts so much stress on me

> > that I feel like I'm shaking all over or a nervous wreck!!!

> >

> > This neurologist has hopefully GOT TO HELP ME!!!! I'm desperate and the

> > low dose of Seroquel 25 mg. AM and 25 mg. PM (its only been 2 weeks

> since

> > she's been on this), is NOT WORKING!!

> >

> > So if I were to get Hospice out here, it would be like a caregiver or

> > nurse doing things for her, like taking BP, temperature, those type

> things a

> > regular nurse does???? Right Joan? If this is what they do, then she

> will

> > not allow them to see her. I already know that from the last home health

> > care nurse that came a month ago when she refused to see her for 2 weeks

> in

> > a row.

> >

> > Thanks for any input ya'll might have about this.

> > God bless,

> >

> >

> >

> > In a message dated 4/19/2010 12:04:55 A.M. Central Daylight Time,

> > joan_croft@ joan_

> >

> >

> >

> >

> > He is under the care of hospice, correct?

> > Then they should be making sure that he isn't in any discomfort.

> > Please keep us informed what you find out tomorrow.

> >

> > --- In _LBDcaregivers@ --- In _LBDcaregiver

> > (mailto:_LBDcaregivers@LBDcaregiverLBD_

> (mailto:LBDcaregivers ) ) , Iward27663@, Iwa

> > >

> > >

> > > I don't know what is causing the pain. If we touch him, he acts in

> pain.

> > He

> > > frowns, and pulls back, or even groans a bit. It does seem to be

> > arthritic

> > > type pain, and from being curled I think.

> > >

> > > This is why I need to talk to the staff tomorrow.

> > >

> > > Love a lot,

> > > Imogene

> > >

> > >

> > > In a message dated 4/18/2010 11:48:32 P.M. Central Daylight Time,

> > > joan_croft@ joan_crof

> > >

> > > Forgive me for even having to ask...Mom never got to even the mid

> > stages.

> > >

> > > I think that the curling into fetal position is due to the

> > > Parkinsonism. Parkinsonism.<WBR>..is the pain from being drawn into

> that

> > position or is the

> > > facet of this disease?

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Donna, glad to hear your positive attitude for the summer. You'll get

there.

And, thanks for the hugs,

Hugs to you, too,

Imogene

In a message dated 4/19/2010 4:09:27 P.M. Central Daylight Time,

twomido@... writes:

Thanks you so much Imogene! It may even be healing as fast as the other

and I just don't remember? It is enough already. A few more months and I

will be out in the sun. Biking and hiking!

Hope you a feeling a bit better and a bit more rested. Hugs to Don.

Hugs to you!

Donna R

[Guest guest]

Some go through and some don't!

Donna R

Re: Re: Don

> >

> > Second leg is healing. Not the same as the first one, but I think God

> > knew I wouldn't go back if I had this much trouble with the first one.

> >

> > It is coming. Only 2 weeks out of surgery and things are getting better.

> > I seem much more impatient this time. (With my other doing so well now.)

> > It is hard to remember what I went through 4 and a half months ago. That

> > sentence is hard for me to believe.

> >

> > Thanks for asking. You aren't as far out of it as you think. I am so

> > glad you are getting some rest. That does make all the difference in the

> > world. And you do deserve your health. Don is very aware you love him,

even

> > if all this stuff is happening.

> >

> > My hugs and prayers are with you both.

> >

> > Donna R

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi and that's what I thought they might can do that. By listening to

others how they started out and now on higher doses. Thanks, Love and prayers,

In a message dated 4/20/2010 8:39:05 A.M. Central Daylight Time,

dkaratoprak@... writes:

Hi ,

<Maybe someone else has already suggested this, but they can increase

the Seroquel. I would look into that for sure.

Doris in Canada, Daughter of Ramona in Nursing home. Dx'd in 2005.

81yrs. old. Meds: Reminyl, Seroquel,Wellbutrin81yrs. old. Meds: Rem

NO other health concerns beside osteoporosis and LBD.

>

> Hi Joan, I am seriously thinking of getting my Mom hospice care. I

take

> her to her neurologist Wed. and will ask her about that. My Mom is

in deep

> deep hallucinations and doesn't want to be bothered by caregivers

though.

> She is getting married, or married, or her husband's are getting

murdered,

> or she's inheriting millions or trillions of dollars or she someone

is

> going to kill her every day or every other day. This is what comes

out of her

> mind and mouth every minute she's awake. She goes on the couch and

kisses

> the pillows, talks love to these men constantly, and its like so sad,

> seeing an 86 yr. old woman do and say these things. I know this

isn't her at

> all. She even looks totally a different person out of her eyes.

Sometimes

> her eyes are so wild looking, big and wild looking, scary. Last

night she

> got up and woke everyone up in the house around 11:30 saying someone

was in

> her bed trying to kill her, I finally had to give her a Xanax pill

to get

> her to sleep! Sometimes I try not to let these crazy things affect

me,

> and try to block it all out, but some days it puts so much stress on

me

> that I feel like I'm shaking all over or a nervous wreck!!!

>

> This neurologist has hopefully GOT TO HELP ME!!!! I'm desperate and

the

> low dose of Seroquel 25 mg. AM and 25 mg. PM (its only been 2 weeks

since

> she's been on this), is NOT WORKING!!

>

> So if I were to get Hospice out here, it would be like a caregiver or

> nurse doing things for her, like taking BP, temperature, those type

things a

> regular nurse does???? Right Joan? If this is what they do, then

she will

> not allow them to see her. I already know that from the last home

health

> care nurse that came a month ago when she refused to see her for 2

weeks in

> a row.

>

> Thanks for any input ya'll might have about this.

> God bless,

>

>

>

> In a message dated 4/19/2010 12:04:55 A.M. Central Daylight Time,

> joan_croft@. joan_croft@.

>

>

>

>

> He is under the care of hospice, correct?

> Then they should be making sure that he isn't in any discomfort.

> Please keep us informed what you find out tomorrow.

>

> --- In _LBDcaregivers@ --- In _LBDcare

> (mailto:_LBDcaregivers@LBDcaregiverLBD_

(mailto:LBDcaregivers ) ) , Iward27663@, Iwa

> >

> >

> > I don't know what is causing the pain. If we touch him, he acts in

pain.

> He

> > frowns, and pulls back, or even groans a bit. It does seem to be

> arthritic

> > type pain, and from being curled I think.

> >

> > This is why I need to talk to the staff tomorrow.

> >

> > Love a lot,

> > Imogene

> >

> >

> > In a message dated 4/18/2010 11:48:32 P.M. Central Daylight Time,

> > joan_croft@ joan_crof

> >

> > Forgive me for even having to ask...Mom never got to even the mid

> stages.

> >

> > I think that the curling into fetal position is due to the

> > Parkinsonism. Parkinsonism.<WBR>..is the pain from being drawn into

that

> position or is the

> > facet of this disease?

> >

> >

> >

> >

> >

> >

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

> >

>

>

>

>

>

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

>

[Guest guest]

Hi ,

<Maybe someone else has already suggested this, but they can increase

the Seroquel. I would look into that for sure.

Doris in Canada, Daughter of Ramona in Nursing home. Dx'd in 2005.

81yrs. old. Meds: Reminyl, Seroquel,Wellbutrin, Fosovance and calcium.

NO other health concerns beside osteoporosis and LBD.

>

> Hi Joan, I am seriously thinking of getting my Mom hospice care. I

take

> her to her neurologist Wed. and will ask her about that. My Mom is

in deep

> deep hallucinations and doesn't want to be bothered by caregivers

though.

> She is getting married, or married, or her husband's are getting

murdered,

> or she's inheriting millions or trillions of dollars or she someone

is

> going to kill her every day or every other day. This is what comes

out of her

> mind and mouth every minute she's awake. She goes on the couch and

kisses

> the pillows, talks love to these men constantly, and its like so sad,

> seeing an 86 yr. old woman do and say these things. I know this

isn't her at

> all. She even looks totally a different person out of her eyes.

Sometimes

> her eyes are so wild looking, big and wild looking, scary. Last

night she

> got up and woke everyone up in the house around 11:30 saying someone

was in

> her bed trying to kill her, I finally had to give her a Xanax pill

to get

> her to sleep! Sometimes I try not to let these crazy things affect

me,

> and try to block it all out, but some days it puts so much stress on

me

> that I feel like I'm shaking all over or a nervous wreck!!!

>

> This neurologist has hopefully GOT TO HELP ME!!!! I'm desperate and

the

> low dose of Seroquel 25 mg. AM and 25 mg. PM (its only been 2 weeks

since

> she's been on this), is NOT WORKING!!

>

> So if I were to get Hospice out here, it would be like a caregiver or

> nurse doing things for her, like taking BP, temperature, those type

things a

> regular nurse does???? Right Joan? If this is what they do, then

she will

> not allow them to see her. I already know that from the last home

health

> care nurse that came a month ago when she refused to see her for 2

weeks in

> a row.

>

> Thanks for any input ya'll might have about this.

> God bless,

>

>

>

> In a message dated 4/19/2010 12:04:55 A.M. Central Daylight Time,

> joan_croft@... writes:

>

>

>

>

> He is under the care of hospice, correct?

> Then they should be making sure that he isn't in any discomfort.

> Please keep us informed what you find out tomorrow.

>

> --- In _LBDcaregivers@LBDcaregiverLBD_

> (mailto:LBDcaregivers ) , Iward27663@, Iwa

> >

> >

> > I don't know what is causing the pain. If we touch him, he acts in

pain.

> He

> > frowns, and pulls back, or even groans a bit. It does seem to be

> arthritic

> > type pain, and from being curled I think.

> >

> > This is why I need to talk to the staff tomorrow.

> >

> > Love a lot,

> > Imogene

> >

> >

> > In a message dated 4/18/2010 11:48:32 P.M. Central Daylight Time,

> > joan_croft@ joan_crof

> >

> > Forgive me for even having to ask...Mom never got to even the mid

> stages.

> >

> > I think that the curling into fetal position is due to the

> > Parkinsonism. Parkinsonism.<WBR>..is the pain from being drawn into

that

> position or is the

> > facet of this disease?

> >

> >

> >

> >

> >

> >

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

> >

>

>

>

>

>

>