Re: Low Bed on the way! The saga continues!/Carol

[Guest guest]

Hi Carol,

I am the one that warned you about weight bearing. It has helped me with my

husband to massage his legs when he is bedridden, even with an electric hand

massager, because it keeps the muscles stimulated. I also have him press his

feet against my hands with resistance. This has kept him able to do weight

bearing, but he has lost the ability to walk. When my husband is able to get out

of bed, I have him stand at the hand railing on the wall at the nh and pull up

from his chair and sit and up again repeating, until he has strengthened his

legs and then he is ready to go on rides and home for weekends again.

At least I can toilet him, when no one else checks his diapers at the nh. I can

get him to stand holding onto the handicap bar and pulling himself up to a

stand, he can pivot around and sit on the toilet. I can also still get him in

and out of a car this way also. When my husband was with Hospice I requested he

come home on weekends from the nh. Hospice stopped giving Jim Morphine on my

request and when he was at home from Friday evening to Monday evening I hired a

caregiver to stay 24/7. Hospice only came once every few weeks to check on him

at the house, they mostly saw him at

the nh when he was there. After awhile, I no longer needed the caregiver,

because my husband and I had our own

routine and it worked out better with just the both of us, so I let the

caregiver go.

My husband has been at the nursing home for 1 year and 11 months and I am there

daily everynight to put him to bed and to be there at his dinner time. On days I

can be there earlier I am, but I always stay until bedtime. I am at the nh daily

for 8 to 10 hours. I have my bag of tricks and it works for Jim. I am using many

of my remedies now, because Jim has had a Bronchial Cough for weeks and it is

dragging him down, so I pull out my remedies and they seem to help him. I have

not given out yet being with Jim daily for 8 - 10 hours. It was worse 24/7 at

home. I now can go home and sleep and get rest and know that there are others

watching him, maybe not as well as I do, but they are there, so I have some

peace of mind that I can fall asleep and not have to worry that my LO is left

alone somewhere and I am off in Lala land.

By the way, I think that LSD and LBD have the same symptoms. Hallucinations and

Delusions. Lucy in the Sky with Diamonds and all in their heads. Yeah, I think

it is the same. LOL

Jim is restrained in his chair at the nh, because he will try to stand up and he

will fall. I have requested that he be

restrained and it works for us. When I arrive on the scene I take the restraint

off, because I can watch him, but

when I am not there I request that it be put on him. I would rather have him

safe in his chair than with a broken hip and

he has gotten used to the restraint and it doesn't bother him at all. He doesn't

even have to have an alarm on him.

I see no problem with the restraining bit. The low bed is a good idea. Wherever

the road may take you and Millie

my prayers and thoughts are with you..................Jan

Low Bed on the way! The saga continues!

After almost 30 hours with no sleep I have a little time to write as

Millie is finally sleeping a little.

We saw the third doctor in 8 days. I was a little aggressive with

this doctor, but, I liked him, even if he was a little defensive. We

understood one another.

He got her chart and read me her meds. We discussed options so

whomever had to spend the night might be able to get some sleep.

We are getting a low bed, and that will allow Millie to scoot

wherever her mule-headed butt wants to without fear of injury, or

alarms.

Millie has slipped back into unintelligible language and sleeps with

her mouth wide open.

This makes it crazy again, and changes the whole dynamic.

Yesterday, and even earlier this a.m. she was clear as a bell.

I was very suspicious that they had slipped Millie some ativan and

that we were having a contest to see who would back down first.

I am sure I am not a favorite advocate around here, but let's go down

in a blaze of glory.

By the by, if it is the patient's right not to be restrained and the

family does it anyway, who is going to press charges? Millie is

mentally incompetent. Who are ya gonna call?

Once we get this low bed, I am thinking that Millie won't want to

venture off her mattress. Isn't that always the way?

Whomever mentioned the part about losing weight-bearing capability, I

thank you! Once I get the why to something, I can start to

understand what the real problems are. Millie can still walk with

assistance, or could as of 10:30 this a.m. The last trip to the potty

she buckled and so now they are saying she cannot be assisted to the

commode anymore. If she took another dive because of the lack of

sleep, then that might be the case, but we know the ups and downs of

the disease dictate nothing be cast in stone.

I still feel like I am the only one in a 50 mile radius who knows LBD

from LSD (stolen quote). I think if Millie were addicted to LSD we

would have had an easier time getting proper treatment. Now that

begs another question-----What would LSD do to an LBD?

Which begs another question----Would prescribed marijuana ease the

symptoms and pain, and boost the appetite? I have never had pot, but

this disease is too stupid not to have some stupid solutions.

I am so thankful there are folks here who can sense frustration and

take the time to explain reasons for things.

If Millie isn't alarmed and in a fortress bed, then we can walk her

if she is up to it so she will not lose weight-bearing capability if

she doesn't have to.

This is such a rock and a hard place. We can let Millie starve and

dehydrate to death, or we can try to rehabilitate to the promise of

no quality of life. She has lost the ability to know what silverware

is for, and she cannot suck through a straw, and even if she still

knows when she needs to potty, no one here is willing to put her on a

commode and sit with her. I may be willing to do that, but I

cannot be her 24 hour caregiver.

Today's doctor did say that the caregiver could pump every ounce of

everyday to the care of a LO but in the end, the caregiver will give

out.

Is there an advantage to having Millie at Hospice where I feel like I

am fighting city hall at every turn?

Having Hospice at the house would still mean morphine.

How long can Millie last without food/

I am questions again.

I feel like I am the one who investigated the disease and I should be

the one to guide her off her coaster. I feel like a criminal just

trying to give Millie the quality of life that I would like to be

afforded in the same situation.

Then I look at her and think she may die in the next 24 hours.

She's not my mother! She was a mean and spiteful mother-in-law.

She's stirring, post later!

Welcome to LBDcaregivers.

[Guest guest]

i did think it was you, but i didn't want to run the risk of

offending someone. i am so glad you shared why it was so important.

i wish doctor's and nurses would routinely give me the why, and then

I know i would be much better at adhering to the demands.

Group, if you have specialized info, don't hold back.

it is too important to our coaster crew to let things slide.

we may as well all benefit from wisdom, just like we warn each other

of potential potholes!

There has got to be one heck of a book lurking in the archives of

this group.

Still on the lookout for my sense o' humor! I may find it under my

pillow tonight!

Cheers!

Carol

-- In LBDcaregivers , Janet Colello

wrote:

>

> Hi Carol,

> I am the one that warned you about weight bearing. It has helped me

with my husband to massage his legs when he is bedridden, even with

an electric hand massager, because it keeps the muscles stimulated. I

also have him press his feet against my hands with resistance. This

has kept him able to do weight bearing, but he has lost the ability

to walk. When my husband is able to get out of bed, I have him stand

at the hand railing on the wall at the nh and pull up from his chair

and sit and up again repeating, until he has strengthened his legs

and then he is ready to go on rides and home for weekends again.

> At least I can toilet him, when no one else checks his diapers at

the nh. I can get him to stand holding onto the handicap bar and

pulling himself up to a stand, he can pivot around and sit on the

toilet. I can also still get him in and out of a car this way also.

When my husband was with Hospice I requested he come home on weekends

from the nh. Hospice stopped giving Jim Morphine on my request and

when he was at home from Friday evening to Monday evening I hired a

caregiver to stay 24/7. Hospice only came once every few weeks to

check on him at the house, they mostly saw him at

> the nh when he was there. After awhile, I no longer needed the

caregiver, because my husband and I had our own

> routine and it worked out better with just the both of us, so I let

the caregiver go.

> My husband has been at the nursing home for 1 year and 11 months

and I am there daily everynight to put him to bed and to be there at

his dinner time. On days I can be there earlier I am, but I always

stay until bedtime. I am at the nh daily for 8 to 10 hours. I have my

bag of tricks and it works for Jim. I am using many of my remedies

now, because Jim has had a Bronchial Cough for weeks and it is

dragging him down, so I pull out my remedies and they seem to help

him. I have not given out yet being with Jim daily for 8 - 10 hours.

It was worse 24/7 at home. I now can go home and sleep and get rest

and know that there are others watching him, maybe not as well as I

do, but they are there, so I have some

> peace of mind that I can fall asleep and not have to worry that my

LO is left alone somewhere and I am off in Lala land.

> By the way, I think that LSD and LBD have the same symptoms.

Hallucinations and Delusions. Lucy in the Sky with Diamonds and all

in their heads. Yeah, I think it is the same. LOL

> Jim is restrained in his chair at the nh, because he will try to

stand up and he will fall. I have requested that he be

> restrained and it works for us. When I arrive on the scene I take

the restraint off, because I can watch him, but

> when I am not there I request that it be put on him. I would rather

have him safe in his chair than with a broken hip and

> he has gotten used to the restraint and it doesn't bother him at

all. He doesn't even have to have an alarm on him.

> I see no problem with the restraining bit. The low bed is a good

idea. Wherever the road may take you and Millie

> my prayers and thoughts are with you..................Jan

>

>

>

>

> Low Bed on the way! The saga continues!

>

> After almost 30 hours with no sleep I have a little time to write

as

> Millie is finally sleeping a little.

>

> We saw the third doctor in 8 days. I was a little aggressive with

> this doctor, but, I liked him, even if he was a little defensive.

We

> understood one another.

>

> He got her chart and read me her meds. We discussed options so

> whomever had to spend the night might be able to get some sleep.

>

> We are getting a low bed, and that will allow Millie to scoot

> wherever her mule-headed butt wants to without fear of injury, or

> alarms.

>

> Millie has slipped back into unintelligible language and sleeps

with

> her mouth wide open.

>

> This makes it crazy again, and changes the whole dynamic.

>

> Yesterday, and even earlier this a.m. she was clear as a bell.

>

> I was very suspicious that they had slipped Millie some ativan and

> that we were having a contest to see who would back down first.

>

> I am sure I am not a favorite advocate around here, but let's go

down

> in a blaze of glory.

>

> By the by, if it is the patient's right not to be restrained and

the

> family does it anyway, who is going to press charges? Millie is

> mentally incompetent. Who are ya gonna call?

>

> Once we get this low bed, I am thinking that Millie won't want to

> venture off her mattress. Isn't that always the way?

>

> Whomever mentioned the part about losing weight-bearing capability,

I

> thank you! Once I get the why to something, I can start to

> understand what the real problems are. Millie can still walk with

> assistance, or could as of 10:30 this a.m. The last trip to the

potty

> she buckled and so now they are saying she cannot be assisted to

the

> commode anymore. If she took another dive because of the lack of

> sleep, then that might be the case, but we know the ups and downs

of

> the disease dictate nothing be cast in stone.

>

> I still feel like I am the only one in a 50 mile radius who knows

LBD

> from LSD (stolen quote). I think if Millie were addicted to LSD we

> would have had an easier time getting proper treatment. Now that

> begs another question-----What would LSD do to an LBD?

>

> Which begs another question----Would prescribed marijuana ease the

> symptoms and pain, and boost the appetite? I have never had pot,

but

> this disease is too stupid not to have some stupid solutions.

>

> I am so thankful there are folks here who can sense frustration

and

> take the time to explain reasons for things.

>

> If Millie isn't alarmed and in a fortress bed, then we can walk her

> if she is up to it so she will not lose weight-bearing capability

if

> she doesn't have to.

>

> This is such a rock and a hard place. We can let Millie starve and

> dehydrate to death, or we can try to rehabilitate to the promise

of

> no quality of life. She has lost the ability to know what

silverware

> is for, and she cannot suck through a straw, and even if she still

> knows when she needs to potty, no one here is willing to put her on

a

> commode and sit with her. I may be willing to do that, but I

> cannot be her 24 hour caregiver.

>

> Today's doctor did say that the caregiver could pump every ounce of

> everyday to the care of a LO but in the end, the caregiver will

give

> out.

>

> Is there an advantage to having Millie at Hospice where I feel like

I

> am fighting city hall at every turn?

>

> Having Hospice at the house would still mean morphine.

>

> How long can Millie last without food/

>

> I am questions again.

>

> I feel like I am the one who investigated the disease and I should

be

> the one to guide her off her coaster. I feel like a criminal just

> trying to give Millie the quality of life that I would like to be

> afforded in the same situation.

>

> Then I look at her and think she may die in the next 24 hours.

>

> She's not my mother! She was a mean and spiteful mother-in-law.

>

> She's stirring, post later!

>

>

>

>

>

>

>

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

[Guest guest]

Carol, one more tip from my experiences is that from medications and sleeping

with their mouth open and some dehydration, lips become very dry and in some

cases start to crack. Hospice may be putting something on Millie's lips, but if

they aren't a medicated lip balm or chap stick helps to keep the lips from

cracking and drying out. Jim is always

thankful when I put lip balm on his lips, because at times they hurt him from

being so dry.

Low Bed on the way! The saga continues!

>

> After almost 30 hours with no sleep I have a little time to write

as

> Millie is finally sleeping a little.

>

> We saw the third doctor in 8 days. I was a little aggressive with

> this doctor, but, I liked him, even if he was a little defensive.

We

> understood one another.

>

> He got her chart and read me her meds. We discussed options so

> whomever had to spend the night might be able to get some sleep.

>

> We are getting a low bed, and that will allow Millie to scoot

> wherever her mule-headed butt wants to without fear of injury, or

> alarms.

>

> Millie has slipped back into unintelligible language and sleeps

with

> her mouth wide open.

>

> This makes it crazy again, and changes the whole dynamic.

>

> Yesterday, and even earlier this a.m. she was clear as a bell.

>

> I was very suspicious that they had slipped Millie some ativan and

> that we were having a contest to see who would back down first.

>

> I am sure I am not a favorite advocate around here, but let's go

down

> in a blaze of glory.

>

> By the by, if it is the patient's right not to be restrained and

the

> family does it anyway, who is going to press charges? Millie is

> mentally incompetent. Who are ya gonna call?

>

> Once we get this low bed, I am thinking that Millie won't want to

> venture off her mattress. Isn't that always the way?

>

> Whomever mentioned the part about losing weight-bearing capability,

I

> thank you! Once I get the why to something, I can start to

> understand what the real problems are. Millie can still walk with

> assistance, or could as of 10:30 this a.m. The last trip to the

potty

> she buckled and so now they are saying she cannot be assisted to

the

> commode anymore. If she took another dive because of the lack of

> sleep, then that might be the case, but we know the ups and downs

of

> the disease dictate nothing be cast in stone.

>

> I still feel like I am the only one in a 50 mile radius who knows

LBD

> from LSD (stolen quote). I think if Millie were addicted to LSD we

> would have had an easier time getting proper treatment. Now that

> begs another question-----What would LSD do to an LBD?

>

> Which begs another question----Would prescribed marijuana ease the

> symptoms and pain, and boost the appetite? I have never had pot,

but

> this disease is too stupid not to have some stupid solutions.

>

> I am so thankful there are folks here who can sense frustration

and

> take the time to explain reasons for things.

>

> If Millie isn't alarmed and in a fortress bed, then we can walk her

> if she is up to it so she will not lose weight-bearing capability

if

> she doesn't have to.

>

> This is such a rock and a hard place. We can let Millie starve and

> dehydrate to death, or we can try to rehabilitate to the promise

of

> no quality of life. She has lost the ability to know what

silverware

> is for, and she cannot suck through a straw, and even if she still

> knows when she needs to potty, no one here is willing to put her on

a

> commode and sit with her. I may be willing to do that, but I

> cannot be her 24 hour caregiver.

>

> Today's doctor did say that the caregiver could pump every ounce of

> everyday to the care of a LO but in the end, the caregiver will

give

> out.

>

> Is there an advantage to having Millie at Hospice where I feel like

I

> am fighting city hall at every turn?

>

> Having Hospice at the house would still mean morphine.

>

> How long can Millie last without food/

>

> I am questions again.

>

> I feel like I am the one who investigated the disease and I should

be

> the one to guide her off her coaster. I feel like a criminal just

> trying to give Millie the quality of life that I would like to be

> afforded in the same situation.

>

> Then I look at her and think she may die in the next 24 hours.

>

> She's not my mother! She was a mean and spiteful mother-in-law.

>

> She's stirring, post later!

>

>

>

>

>

>

>

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

[Guest guest]

<snip> There has got to be one heck of a book lurking in the archives

of this group. <snip>

You're right - I bet there is! Imagine if a frame work of a book was

developed - I bet you could find the contents w/in archives... A whole

Lewy-journey from beginning to end, with lots of advice for different

phases and chapters all w/in this message board... Maybe it's doable

one day w/ the permission of the writers of course...