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" We ruled out everything under the sun. "

I assume you checked her medications as well then, but just in case, some

patients report things such as the sensation of bugs crawling under their skin

when on certain drugs. The reason this came to mind is that you said it happens

at bedtime when she might be recieving medications to help her sleep.Just a

thought.

>

> For over a year at bedtime my mother in law gets itchy. Usually her head and

back and sometimes arms. Lately I am having to make sock mits and secure those

over her hands at night lest she tear her skin. She calls out constantly for

help while trying to scratch. There are no bumps, no rash no sign of anything

except where she manages to scratch. We ruled out everything under the sun.

Finally it appears it’s the lbd or parkinsons or whichever… and it’s a

neurological maybe psychological thing †" nothing stops the itching except for

sleep but when she itches she won’t sleep. It is very real to her however so

I can explain it’s parkinson’s playing a trick on her mind and she gets it -

for about 5 seconds. I have gotten absolutely no help anywhere with this †"

not her doctor or neurologist or the home health rns experienced with lbd and

parkinsons (supposedly). Any ideas or suggestions are welcome. This is just

one other thing that is costing us all precious sleep.

>

>

>

> Oh, also I finally got her MediCal application through and while she has a

share of cost, they will help some with in home support services. Today a

social worker calls and starts telling the share of costs is high blah blah

blah. I keep saying I know it is, however any little bit will help. Finally I

ask her if she’s trying to persuade us to not try and get any hours for her to

have assistance? The social worker tells me yes. I asked her to kindly get

over here and complete the intake and decide how many hours and depending on

that decision we’ll know if we need to appeal or not. She is coming out on

Wednesday. She sounds young and snippy and I had to ask her if she had any

knowledge of LBD and Parkinson’s †" she said she did. I told her well then

I’m surprised because you might have understood how much help she needs.

>

>

>

> As my sleep is shortened my patience with these sorts is also shortened. I

wish they would just do their job correctly and stop making it so hard to get

any kind of help.

>

>

>

> Thank you

>

>

>

> Dorothy

>

>

>

>

>

>

>

>

>

>

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Posted
Posted

If it isn't the meds as someone suggested, you might try increasing her

hydration. More liquid during the day. And I would get some real good cream

for her skin and maybe if you do a massage with it prior to her bed time, she

may just be able to enjoy it enough and it may keep her skin moist.

Of course this won't work with her hair. Just some thoughts I had.

Hugs,

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away

from LBD in 2002.

itching and social workers

For over a year at bedtime my mother in law gets itchy. Usually her head and

back and sometimes arms. Lately I am having to make sock mits and secure those

over her hands at night lest she tear her skin. She calls out constantly for

help while trying to scratch. There are no bumps, no rash no sign of anything

except where she manages to scratch. We ruled out everything under the sun.

Finally it appears it’s the lbd or parkinsons or whichever… and it’s a

neurological maybe psychological thing – nothing stops the itching except for

sleep but when she itches she won’t sleep. It is very real to her however so

I can explain it’s parkinson’s playing a trick on her mind and she gets it -

for about 5 seconds. I have gotten absolutely no help anywhere with this –

not her doctor or neurologist or the home health rns experienced with lbd and

parkinsons (supposedly). Any ideas or suggestions are welcome. This is just

one other thing that is costing us all precious sleep.

Oh, also I finally got her MediCal application through and while she has a share

of cost, they will help some with in home support services. Today a social

worker calls and starts telling the share of costs is high blah blah blah. I

keep saying I know it is, however any little bit will help. Finally I ask her

if she’s trying to persuade us to not try and get any hours for her to have

assistance? The social worker tells me yes. I asked her to kindly get over

here and complete the intake and decide how many hours and depending on that

decision we’ll know if we need to appeal or not. She is coming out on

Wednesday. She sounds young and snippy and I had to ask her if she had any

knowledge of LBD and Parkinson’s – she said she did. I told her well then

I’m surprised because you might have understood how much help she needs.

As my sleep is shortened my patience with these sorts is also shortened. I wish

they would just do their job correctly and stop making it so hard to get any

kind of help.

Thank you

Dorothy

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Posted

Hi

My mum had very itchy legs and it was our pharmicist who recommended E45 cream

especially for itchy skin.  This has worked and mum no longer scratches. We

are

very lucky - mum's social worker is actually begging us to claim services!!! 

We

have a wheelchair and hospital bed on order.  These will make life so much

easier for her and us.  The social worker also did a carer's assessment on me

and my 2 sisters.  This now entitles us, as carers, to 6 alternative therapies

and also a very small allowance to use for respite breaks.  It may not sound a

lot but it helps.

Sheila

________________________________

To: LBDcaregivers

Sent: Sunday, 8 May, 2011 8:17:12

Subject: Re: itching and social workers

 

If it isn't the meds as someone suggested, you might try increasing her

hydration. More liquid during the day. And I would get some real good cream for

her skin and maybe if you do a massage with it prior to her bed time, she may

just be able to enjoy it enough and it may keep her skin moist.

Of course this won't work with her hair. Just some thoughts I had.

Hugs,

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away from

LBD in 2002.

itching and social workers

For over a year at bedtime my mother in law gets itchy. Usually her head and

back and sometimes arms. Lately I am having to make sock mits and secure those

over her hands at night lest she tear her skin. She calls out constantly for

help while trying to scratch. There are no bumps, no rash no sign of anything

except where she manages to scratch. We ruled out everything under the sun.

Finally it appears it’s the lbd or parkinsons or whichever… and it’s a

neurological maybe psychological thing – nothing stops the itching except for

sleep but when she itches she won’t sleep. It is very real to her however so I

can explain it’s parkinson’s playing a trick on her mind and she gets it -

for

about 5 seconds. I have gotten absolutely no help anywhere with this – not her

doctor or neurologist or the home health rns experienced with lbd and parkinsons

(supposedly). Any ideas or suggestions are welcome. This is just one other thing

that is costing us all precious sleep.

Oh, also I finally got her MediCal application through and while she has a share

of cost, they will help some with in home support services. Today a social

worker calls and starts telling the share of costs is high blah blah blah. I

keep saying I know it is, however any little bit will help. Finally I ask her if

she’s trying to persuade us to not try and get any hours for her to have

assistance? The social worker tells me yes. I asked her to kindly get over here

and complete the intake and decide how many hours and depending on that decision

we’ll know if we need to appeal or not. She is coming out on Wednesday. She

sounds young and snippy and I had to ask her if she had any knowledge of LBD and

Parkinson’s – she said she did. I told her well then I’m surprised because

you

might have understood how much help she needs.

As my sleep is shortened my patience with these sorts is also shortened. I wish

they would just do their job correctly and stop making it so hard to get any

kind of help.

Thank you

Dorothy

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Posted
Posted

What we have ruled out:

every medicine and vitamin she takes

every food and drink and thickener

Laundry soap, sheet material, pillows, blankets, all clothing, oxygen canula,

socks, air in room, temperature, soap, shampoo, conditioner, skin lotions used,

depends, poise pads, cats, television (on or off), lights (on or off),

nightlights (on or off), music (no difference and sometimes irritating to her)

and a whole lot more things I’m to tired to think of at the moment.

She manages to drink between 3 and 5 12oz glasses of water a day usually and her

doctor says she I generally well hydrated. We slather lotion on her skin (after

making sure it wasn’t causing the problem) and also use aloe vera gel (have

tried two different kinds, again after ruling out they weren’t causing or

contributing to the problem). Her skin is far from dry. Her diaper is not wet

or soiled I always check when I go back in and if it is soiled I change her

right away in a very calm way, speaking quietly.

It happens almost always when she goes to bed. I get her ready, put her in bed,

keeping everything light and positive and calm and happy, adjust pillows to get

her comfortable and we all say good night. As soon as everyone is out of the

room, almost immediately, she starts calling, “Help me somebody please help

meâ€. I give it 15 minutes and if she continues and doesn’t fall asleep I

know it’s not going to be easy. I go back into her room and ask her what’s

the matter and she – usually – tells me she’s itchy. We have tried:

applying aloe, lotion, scratching, cold damp compresses which do something

temporary but as soon as I’m out the door she starts up again itching. She

will carry on for hours, with or without someone trying to help. After the

second visit I leave, she starts calling and I wait 30 minutes hoping she will

sleep. Occasionally she does but mostly not so I go in for a third visit… and

the night proceeds like that.

What helps sometimes, but maybe a fluke – placebo “itchy†medicines.

There is a liquid medicine she takes that is “as needed†and I have diluted

it with some water and given it to her as “itchy medicineâ€. It tastes

terrible she tells me. I tell her it’s going to help her and take the itching

away but it will take a few minutes to work – but if after 30 minutes it

doesn’t work I can give her more. 80% of the time with this she goes to sleep

and manages to sleep a few hours before waking up calling for help again. The

placebo worked frequently but not always.

Sometimes cold damp compresses work. One time I explained it was Parkinson’s

playing a trick on her mind and that the sooner she could try to relax and

sleep the sooner she would stop itching. She seemed to understand and she

actually went to sleep and slept for almost 5 hours. Sometimes I think it

could be something that goes with agitation or some other emotion or state of

being because I notice when she says she’s itchy she is chewing up a storm

(she “chews†when her false teeth aren’t in). She chews a lot at night

lately when at first trying to get to sleep and it makes the canula move around

on her face and she starts picking and clawing at it trying to get it off.

There are times that she has scratched her face enough to leave scabs from

itching. Also a few months ago she gouged the corner of her eyelid from

scratching. I put fluffy socks on her hands at night so she can’t scratch

herself. I put her teeth back in after cleaning everything well so she

doesn’t chew all night.

I have no idea but I keep trying things and keep notes and maybe at some point

I’ll figure it out.

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of Donna Mido

Sent: Sunday, May 08, 2011 12:17 AM

To: LBDcaregivers

Subject: Re: itching and social workers

If it isn't the meds as someone suggested, you might try increasing her

hydration. More liquid during the day. And I would get some real good cream for

her skin and maybe if you do a massage with it prior to her bed time, she may

just be able to enjoy it enough and it may keep her skin moist.

Of course this won't work with her hair. Just some thoughts I had.

Hugs,

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away from

LBD in 2002.

itching and social workers

For over a year at bedtime my mother in law gets itchy. Usually her head and

back and sometimes arms. Lately I am having to make sock mits and secure those

over her hands at night lest she tear her skin. She calls out constantly for

help while trying to scratch. There are no bumps, no rash no sign of anything

except where she manages to scratch. We ruled out everything under the sun.

Finally it appears it’s the lbd or parkinsons or whichever… and it’s a

neurological maybe psychological thing – nothing stops the itching except for

sleep but when she itches she won’t sleep. It is very real to her however so I

can explain it’s parkinson’s playing a trick on her mind and she gets it -

for about 5 seconds. I have gotten absolutely no help anywhere with this – not

her doctor or neurologist or the home health rns experienced with lbd and

parkinsons (supposedly). Any ideas or suggestions are welcome. This is just one

other thing that is costing us all precious sleep.

Oh, also I finally got her MediCal application through and while she has a share

of cost, they will help some with in home support services. Today a social

worker calls and starts telling the share of costs is high blah blah blah. I

keep saying I know it is, however any little bit will help. Finally I ask her if

she’s trying to persuade us to not try and get any hours for her to have

assistance? The social worker tells me yes. I asked her to kindly get over here

and complete the intake and decide how many hours and depending on that decision

we’ll know if we need to appeal or not. She is coming out on Wednesday. She

sounds young and snippy and I had to ask her if she had any knowledge of LBD and

Parkinson’s – she said she did. I told her well then I’m surprised because

you might have understood how much help she needs.

As my sleep is shortened my patience with these sorts is also shortened. I wish

they would just do their job correctly and stop making it so hard to get any

kind of help.

Thank you

Dorothy

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Posted
Posted

OH Dorothy, my heart goes out to you; I simply can't imagine how Awful this

whole production must be for you!  Would it be alright with you if I shared

this email and your predicament with a Doctor I know, try and see if he might

have an idea or two which might help?

 

Please know that we all care and sympathize with this horror show you and your

mother in law are living in.

Hoping somehow answers will be found this nightmare will end for you both, AND

SOON!

Jo 

Subject: RE: itching and social workers

To: LBDcaregivers

Date: Sunday, May 8, 2011, 3:51 AM

 

What we have ruled out:

every medicine and vitamin she takes

every food and drink and thickener

Laundry soap, sheet material, pillows, blankets, all clothing, oxygen canula,

socks, air in room, temperature, soap, shampoo, conditioner, skin lotions used,

depends, poise pads, cats, television (on or off), lights (on or off),

nightlights (on or off), music (no difference and sometimes irritating to her)

and a whole lot more things I’m to tired to think of at the moment.

She manages to drink between 3 and 5 12oz glasses of water a day usually and her

doctor says she I generally well hydrated. We slather lotion on her skin (after

making sure it wasn’t causing the problem) and also use aloe vera gel (have

tried two different kinds, again after ruling out they weren’t causing or

contributing to the problem). Her skin is far from dry. Her diaper is not wet or

soiled I always check when I go back in and if it is soiled I change her right

away in a very calm way, speaking quietly.

It happens almost always when she goes to bed. I get her ready, put her in bed,

keeping everything light and positive and calm and happy, adjust pillows to get

her comfortable and we all say good night. As soon as everyone is out of the

room, almost immediately, she starts calling, “Help me somebody please help

meâ€. I give it 15 minutes and if she continues and doesn’t fall asleep I

know it’s not going to be easy. I go back into her room and ask her what’s

the matter and she – usually – tells me she’s itchy. We have tried:

applying aloe, lotion, scratching, cold damp compresses which do something

temporary but as soon as I’m out the door she starts up again itching. She

will carry on for hours, with or without someone trying to help. After the

second visit I leave, she starts calling and I wait 30 minutes hoping she will

sleep. Occasionally she does but mostly not so I go in for a third visit… and

the night proceeds like that.

What helps sometimes, but maybe a fluke – placebo “itchy†medicines. There

is a liquid medicine she takes that is “as needed†and I have diluted it

with some water and given it to her as “itchy medicineâ€. It tastes terrible

she tells me. I tell her it’s going to help her and take the itching away but

it will take a few minutes to work – but if after 30 minutes it doesn’t work

I can give her more. 80% of the time with this she goes to sleep and manages to

sleep a few hours before waking up calling for help again. The placebo worked

frequently but not always.

Sometimes cold damp compresses work. One time I explained it was Parkinson’s

playing a trick on her mind and that the sooner she could try to relax and sleep

the sooner she would stop itching. She seemed to understand and she actually

went to sleep and slept for almost 5 hours. Sometimes I think it could be

something that goes with agitation or some other emotion or state of being

because I notice when she says she’s itchy she is chewing up a storm (she

“chews†when her false teeth aren’t in). She chews a lot at night lately

when at first trying to get to sleep and it makes the canula move around on her

face and she starts picking and clawing at it trying to get it off. There are

times that she has scratched her face enough to leave scabs from itching. Also a

few months ago she gouged the corner of her eyelid from scratching. I put fluffy

socks on her hands at night so she can’t scratch herself. I put her teeth back

in after cleaning

everything well so she doesn’t chew all night.

I have no idea but I keep trying things and keep notes and maybe at some point

I’ll figure it out.

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of Donna Mido

Sent: Sunday, May 08, 2011 12:17 AM

To: LBDcaregivers

Subject: Re: itching and social workers

If it isn't the meds as someone suggested, you might try increasing her

hydration. More liquid during the day. And I would get some real good cream for

her skin and maybe if you do a massage with it prior to her bed time, she may

just be able to enjoy it enough and it may keep her skin moist.

Of course this won't work with her hair. Just some thoughts I had.

Hugs,

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away from

LBD in 2002.

itching and social workers

For over a year at bedtime my mother in law gets itchy. Usually her head and

back and sometimes arms. Lately I am having to make sock mits and secure those

over her hands at night lest she tear her skin. She calls out constantly for

help while trying to scratch. There are no bumps, no rash no sign of anything

except where she manages to scratch. We ruled out everything under the sun.

Finally it appears it’s the lbd or parkinsons or whichever… and it’s a

neurological maybe psychological thing – nothing stops the itching except for

sleep but when she itches she won’t sleep. It is very real to her however so I

can explain it’s parkinson’s playing a trick on her mind and she gets it -

for about 5 seconds. I have gotten absolutely no help anywhere with this – not

her doctor or neurologist or the home health rns experienced with lbd and

parkinsons (supposedly). Any ideas or suggestions are welcome. This is just one

other thing that is costing

us all precious sleep.

Oh, also I finally got her MediCal application through and while she has a share

of cost, they will help some with in home support services. Today a social

worker calls and starts telling the share of costs is high blah blah blah. I

keep saying I know it is, however any little bit will help. Finally I ask her if

she’s trying to persuade us to not try and get any hours for her to have

assistance? The social worker tells me yes. I asked her to kindly get over here

and complete the intake and decide how many hours and depending on that decision

we’ll know if we need to appeal or not. She is coming out on Wednesday. She

sounds young and snippy and I had to ask her if she had any knowledge of LBD and

Parkinson’s – she said she did. I told her well then I’m surprised because

you might have understood how much help she needs.

As my sleep is shortened my patience with these sorts is also shortened. I wish

they would just do their job correctly and stop making it so hard to get any

kind of help.

Thank you

Dorothy

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Posted
Posted

Is it possible for someone to move into her room with her? Or move her into

someone elses room? would call out in the night if I wasn't there and he

awoke in a darkened room. I moved into his room and learned to sleep with the

lights on and the tv playing softly. He would still get up but I was there to

comfort and assure him things were okay. At least we both got some sleep each

night. And if I caught it early enough I could even keep him in bed by

addressing his concerns before he was fully awake.

>

> For over a year at bedtime my mother in law gets itchy. Usually her head and

back and sometimes arms. Lately I am having to make sock mits and secure those

over her hands at night lest she tear her skin. She calls out constantly for

help while trying to scratch. There are no bumps, no rash no sign of anything

except where she manages to scratch. We ruled out everything under the sun.

Finally it appears it’s the lbd or parkinsons or whichever… and it’s a

neurological maybe psychological thing †" nothing stops the itching except for

sleep but when she itches she won’t sleep. It is very real to her however so

I can explain it’s parkinson’s playing a trick on her mind and she gets it -

for about 5 seconds. I have gotten absolutely no help anywhere with this †"

not her doctor or neurologist or the home health rns experienced with lbd and

parkinsons (supposedly). Any ideas or suggestions are welcome. This is just

one other thing that is costing us all precious sleep.

>

>

>

> Oh, also I finally got her MediCal application through and while she has a

share of cost, they will help some with in home support services. Today a

social worker calls and starts telling the share of costs is high blah blah

blah. I keep saying I know it is, however any little bit will help. Finally I

ask her if she’s trying to persuade us to not try and get any hours for her to

have assistance? The social worker tells me yes. I asked her to kindly get

over here and complete the intake and decide how many hours and depending on

that decision we’ll know if we need to appeal or not. She is coming out on

Wednesday. She sounds young and snippy and I had to ask her if she had any

knowledge of LBD and Parkinson’s †" she said she did. I told her well then

I’m surprised because you might have understood how much help she needs.

>

>

>

> As my sleep is shortened my patience with these sorts is also shortened. I

wish they would just do their job correctly and stop making it so hard to get

any kind of help.

>

>

>

> Thank you

>

>

>

> Dorothy

>

>

>

>

>

>

>

>

>

>

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Posted
Posted

Hi Dorothy and all,

How is her kidney function? Have some blood and urine tests done to find out if

there is any kidney impairment. My Mom had kidney failure and developed very

itchy skin from it.  Sometimes a certain lotion called Sarna lotion would help

with the itching for a while.  We got it at Walgreens. Good  Luck and I hope

something will help with the situation soon!

Pat Mayhew

Subject: RE: itching and social workers

To: LBDcaregivers

Date: Sunday, May 8, 2011, 3:51 AM

 

What we have ruled out:

every medicine and vitamin she takes

every food and drink and thickener

Laundry soap, sheet material, pillows, blankets, all clothing, oxygen canula,

socks, air in room, temperature, soap, shampoo, conditioner, skin lotions used,

depends, poise pads, cats, television (on or off), lights (on or off),

nightlights (on or off), music (no difference and sometimes irritating to her)

and a whole lot more things I’m to tired to think of at the moment.

She manages to drink between 3 and 5 12oz glasses of water a day usually and her

doctor says she I generally well hydrated. We slather lotion on her skin (after

making sure it wasn’t causing the problem) and also use aloe vera gel (have

tried two different kinds, again after ruling out they weren’t causing or

contributing to the problem). Her skin is far from dry. Her diaper is not wet or

soiled I always check when I go back in and if it is soiled I change her right

away in a very calm way, speaking quietly.

It happens almost always when she goes to bed. I get her ready, put her in bed,

keeping everything light and positive and calm and happy, adjust pillows to get

her comfortable and we all say good night. As soon as everyone is out of the

room, almost immediately, she starts calling, “Help me somebody please help

meâ€. I give it 15 minutes and if she continues and doesn’t fall asleep I

know it’s not going to be easy. I go back into her room and ask her what’s

the matter and she – usually – tells me she’s itchy. We have tried:

applying aloe, lotion, scratching, cold damp compresses which do something

temporary but as soon as I’m out the door she starts up again itching. She

will carry on for hours, with or without someone trying to help. After the

second visit I leave, she starts calling and I wait 30 minutes hoping she will

sleep. Occasionally she does but mostly not so I go in for a third visit… and

the night proceeds like that.

What helps sometimes, but maybe a fluke – placebo “itchy†medicines. There

is a liquid medicine she takes that is “as needed†and I have diluted it

with some water and given it to her as “itchy medicineâ€. It tastes terrible

she tells me. I tell her it’s going to help her and take the itching away but

it will take a few minutes to work – but if after 30 minutes it doesn’t work

I can give her more. 80% of the time with this she goes to sleep and manages to

sleep a few hours before waking up calling for help again. The placebo worked

frequently but not always.

Sometimes cold damp compresses work. One time I explained it was Parkinson’s

playing a trick on her mind and that the sooner she could try to relax and sleep

the sooner she would stop itching. She seemed to understand and she actually

went to sleep and slept for almost 5 hours. Sometimes I think it could be

something that goes with agitation or some other emotion or state of being

because I notice when she says she’s itchy she is chewing up a storm (she

“chews†when her false teeth aren’t in). She chews a lot at night lately

when at first trying to get to sleep and it makes the canula move around on her

face and she starts picking and clawing at it trying to get it off. There are

times that she has scratched her face enough to leave scabs from itching. Also a

few months ago she gouged the corner of her eyelid from scratching. I put fluffy

socks on her hands at night so she can’t scratch herself. I put her teeth back

in after cleaning

everything well so she doesn’t chew all night.

I have no idea but I keep trying things and keep notes and maybe at some point

I’ll figure it out.

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of Donna Mido

Sent: Sunday, May 08, 2011 12:17 AM

To: LBDcaregivers

Subject: Re: itching and social workers

If it isn't the meds as someone suggested, you might try increasing her

hydration. More liquid during the day. And I would get some real good cream for

her skin and maybe if you do a massage with it prior to her bed time, she may

just be able to enjoy it enough and it may keep her skin moist.

Of course this won't work with her hair. Just some thoughts I had.

Hugs,

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away from

LBD in 2002.

itching and social workers

For over a year at bedtime my mother in law gets itchy. Usually her head and

back and sometimes arms. Lately I am having to make sock mits and secure those

over her hands at night lest she tear her skin. She calls out constantly for

help while trying to scratch. There are no bumps, no rash no sign of anything

except where she manages to scratch. We ruled out everything under the sun.

Finally it appears it’s the lbd or parkinsons or whichever… and it’s a

neurological maybe psychological thing – nothing stops the itching except for

sleep but when she itches she won’t sleep. It is very real to her however so I

can explain it’s parkinson’s playing a trick on her mind and she gets it -

for about 5 seconds. I have gotten absolutely no help anywhere with this – not

her doctor or neurologist or the home health rns experienced with lbd and

parkinsons (supposedly). Any ideas or suggestions are welcome. This is just one

other thing that is costing

us all precious sleep.

Oh, also I finally got her MediCal application through and while she has a share

of cost, they will help some with in home support services. Today a social

worker calls and starts telling the share of costs is high blah blah blah. I

keep saying I know it is, however any little bit will help. Finally I ask her if

she’s trying to persuade us to not try and get any hours for her to have

assistance? The social worker tells me yes. I asked her to kindly get over here

and complete the intake and decide how many hours and depending on that decision

we’ll know if we need to appeal or not. She is coming out on Wednesday. She

sounds young and snippy and I had to ask her if she had any knowledge of LBD and

Parkinson’s – she said she did. I told her well then I’m surprised because

you might have understood how much help she needs.

As my sleep is shortened my patience with these sorts is also shortened. I wish

they would just do their job correctly and stop making it so hard to get any

kind of help.

Thank you

Dorothy

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Posted
Posted

Thank you jo, I would appreciate input from people familiar with this and

thank you for your kind offer. Funny though I don’t feel like I’m living

in hell anymore lately. It’s just part of this disease process and we’re

going through it. If I can figure this out it will give me more insight into

the whole thing and maybe it will help another who has a similar problem. Thank

you so much for caring and Happy mother’s day J

-Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of Jo Blume

Sent: Sunday, May 08, 2011 3:36 AM

To: LBDcaregivers

Subject: RE: itching and social workers

OH Dorothy, my heart goes out to you; I simply can't imagine how Awful this

whole production must be for you! Would it be alright with you if I shared this

email and your predicament with a Doctor I know, try and see if he might have an

idea or two which might help?

Please know that we all care and sympathize with this horror show you and your

mother in law are living in.

Hoping somehow answers will be found this nightmare will end for you both, AND

SOON!

Jo

From: dsinouye <fullcircle@... <mailto:fullcircle%40sonic.net> >

Subject: RE: itching and social workers

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

Date: Sunday, May 8, 2011, 3:51 AM

What we have ruled out:

every medicine and vitamin she takes

every food and drink and thickener

Laundry soap, sheet material, pillows, blankets, all clothing, oxygen canula,

socks, air in room, temperature, soap, shampoo, conditioner, skin lotions used,

depends, poise pads, cats, television (on or off), lights (on or off),

nightlights (on or off), music (no difference and sometimes irritating to her)

and a whole lot more things I’m to tired to think of at the moment.

She manages to drink between 3 and 5 12oz glasses of water a day usually and her

doctor says she I generally well hydrated. We slather lotion on her skin (after

making sure it wasn’t causing the problem) and also use aloe vera gel (have

tried two different kinds, again after ruling out they weren’t causing or

contributing to the problem). Her skin is far from dry. Her diaper is not wet or

soiled I always check when I go back in and if it is soiled I change her right

away in a very calm way, speaking quietly.

It happens almost always when she goes to bed. I get her ready, put her in bed,

keeping everything light and positive and calm and happy, adjust pillows to get

her comfortable and we all say good night. As soon as everyone is out of the

room, almost immediately, she starts calling, “Help me somebody please help

meâ€. I give it 15 minutes and if she continues and doesn’t fall asleep I

know it’s not going to be easy. I go back into her room and ask her what’s

the matter and she – usually – tells me she’s itchy. We have tried:

applying aloe, lotion, scratching, cold damp compresses which do something

temporary but as soon as I’m out the door she starts up again itching. She

will carry on for hours, with or without someone trying to help. After the

second visit I leave, she starts calling and I wait 30 minutes hoping she will

sleep. Occasionally she does but mostly not so I go in for a third visit… and

the night proceeds like that.

What helps sometimes, but maybe a fluke – placebo “itchy†medicines. There

is a liquid medicine she takes that is “as needed†and I have diluted it

with some water and given it to her as “itchy medicineâ€. It tastes terrible

she tells me. I tell her it’s going to help her and take the itching away but

it will take a few minutes to work – but if after 30 minutes it doesn’t work

I can give her more. 80% of the time with this she goes to sleep and manages to

sleep a few hours before waking up calling for help again. The placebo worked

frequently but not always.

Sometimes cold damp compresses work. One time I explained it was Parkinson’s

playing a trick on her mind and that the sooner she could try to relax and sleep

the sooner she would stop itching. She seemed to understand and she actually

went to sleep and slept for almost 5 hours. Sometimes I think it could be

something that goes with agitation or some other emotion or state of being

because I notice when she says she’s itchy she is chewing up a storm (she

“chews†when her false teeth aren’t in). She chews a lot at night lately

when at first trying to get to sleep and it makes the canula move around on her

face and she starts picking and clawing at it trying to get it off. There are

times that she has scratched her face enough to leave scabs from itching. Also a

few months ago she gouged the corner of her eyelid from scratching. I put fluffy

socks on her hands at night so she can’t scratch herself. I put her teeth back

in after cleaning

everything well so she doesn’t chew all night.

I have no idea but I keep trying things and keep notes and maybe at some point

I’ll figure it out.

Dorothy

From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

[mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> ]

On Behalf Of Donna Mido

Sent: Sunday, May 08, 2011 12:17 AM

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

Subject: Re: itching and social workers

If it isn't the meds as someone suggested, you might try increasing her

hydration. More liquid during the day. And I would get some real good cream for

her skin and maybe if you do a massage with it prior to her bed time, she may

just be able to enjoy it enough and it may keep her skin moist.

Of course this won't work with her hair. Just some thoughts I had.

Hugs,

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away from

LBD in 2002.

itching and social workers

For over a year at bedtime my mother in law gets itchy. Usually her head and

back and sometimes arms. Lately I am having to make sock mits and secure those

over her hands at night lest she tear her skin. She calls out constantly for

help while trying to scratch. There are no bumps, no rash no sign of anything

except where she manages to scratch. We ruled out everything under the sun.

Finally it appears it’s the lbd or parkinsons or whichever… and it’s a

neurological maybe psychological thing – nothing stops the itching except for

sleep but when she itches she won’t sleep. It is very real to her however so I

can explain it’s parkinson’s playing a trick on her mind and she gets it -

for about 5 seconds. I have gotten absolutely no help anywhere with this – not

her doctor or neurologist or the home health rns experienced with lbd and

parkinsons (supposedly). Any ideas or suggestions are welcome. This is just one

other thing that is costing

us all precious sleep.

Oh, also I finally got her MediCal application through and while she has a share

of cost, they will help some with in home support services. Today a social

worker calls and starts telling the share of costs is high blah blah blah. I

keep saying I know it is, however any little bit will help. Finally I ask her if

she’s trying to persuade us to not try and get any hours for her to have

assistance? The social worker tells me yes. I asked her to kindly get over here

and complete the intake and decide how many hours and depending on that decision

we’ll know if we need to appeal or not. She is coming out on Wednesday. She

sounds young and snippy and I had to ask her if she had any knowledge of LBD and

Parkinson’s – she said she did. I told her well then I’m surprised because

you might have understood how much help she needs.

As my sleep is shortened my patience with these sorts is also shortened. I wish

they would just do their job correctly and stop making it so hard to get any

kind of help.

Thank you

Dorothy

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Posted
Posted

HI Pat,

Another great idea – her kidney function is very good. And Sarna is great for

itching skin - alas not for my mother in law’s itching. We are getting quite

a collection of lotions J

-Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of Pat Machkovich

Sent: Sunday, May 08, 2011 5:47 AM

To: LBDcaregivers

Subject: RE: itching and social workers

Hi Dorothy and all,

How is her kidney function? Have some blood and urine tests done to find out if

there is any kidney impairment. My Mom had kidney failure and developed very

itchy skin from it. Sometimes a certain lotion called Sarna lotion would help

with the itching for a while. We got it at Walgreens. Good Luck and I hope

something will help with the situation soon!

Pat Mayhew

From: dsinouye <fullcircle@... <mailto:fullcircle%40sonic.net> >

Subject: RE: itching and social workers

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

Date: Sunday, May 8, 2011, 3:51 AM

What we have ruled out:

every medicine and vitamin she takes

every food and drink and thickener

Laundry soap, sheet material, pillows, blankets, all clothing, oxygen canula,

socks, air in room, temperature, soap, shampoo, conditioner, skin lotions used,

depends, poise pads, cats, television (on or off), lights (on or off),

nightlights (on or off), music (no difference and sometimes irritating to her)

and a whole lot more things I’m to tired to think of at the moment.

She manages to drink between 3 and 5 12oz glasses of water a day usually and her

doctor says she I generally well hydrated. We slather lotion on her skin (after

making sure it wasn’t causing the problem) and also use aloe vera gel (have

tried two different kinds, again after ruling out they weren’t causing or

contributing to the problem). Her skin is far from dry. Her diaper is not wet or

soiled I always check when I go back in and if it is soiled I change her right

away in a very calm way, speaking quietly.

It happens almost always when she goes to bed. I get her ready, put her in bed,

keeping everything light and positive and calm and happy, adjust pillows to get

her comfortable and we all say good night. As soon as everyone is out of the

room, almost immediately, she starts calling, “Help me somebody please help

meâ€. I give it 15 minutes and if she continues and doesn’t fall asleep I

know it’s not going to be easy. I go back into her room and ask her what’s

the matter and she – usually – tells me she’s itchy. We have tried:

applying aloe, lotion, scratching, cold damp compresses which do something

temporary but as soon as I’m out the door she starts up again itching. She

will carry on for hours, with or without someone trying to help. After the

second visit I leave, she starts calling and I wait 30 minutes hoping she will

sleep. Occasionally she does but mostly not so I go in for a third visit… and

the night proceeds like that.

What helps sometimes, but maybe a fluke – placebo “itchy†medicines. There

is a liquid medicine she takes that is “as needed†and I have diluted it

with some water and given it to her as “itchy medicineâ€. It tastes terrible

she tells me. I tell her it’s going to help her and take the itching away but

it will take a few minutes to work – but if after 30 minutes it doesn’t work

I can give her more. 80% of the time with this she goes to sleep and manages to

sleep a few hours before waking up calling for help again. The placebo worked

frequently but not always.

Sometimes cold damp compresses work. One time I explained it was Parkinson’s

playing a trick on her mind and that the sooner she could try to relax and sleep

the sooner she would stop itching. She seemed to understand and she actually

went to sleep and slept for almost 5 hours. Sometimes I think it could be

something that goes with agitation or some other emotion or state of being

because I notice when she says she’s itchy she is chewing up a storm (she

“chews†when her false teeth aren’t in). She chews a lot at night lately

when at first trying to get to sleep and it makes the canula move around on her

face and she starts picking and clawing at it trying to get it off. There are

times that she has scratched her face enough to leave scabs from itching. Also a

few months ago she gouged the corner of her eyelid from scratching. I put fluffy

socks on her hands at night so she can’t scratch herself. I put her teeth back

in after cleaning

everything well so she doesn’t chew all night.

I have no idea but I keep trying things and keep notes and maybe at some point

I’ll figure it out.

Dorothy

From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

[mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> ]

On Behalf Of Donna Mido

Sent: Sunday, May 08, 2011 12:17 AM

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

Subject: Re: itching and social workers

If it isn't the meds as someone suggested, you might try increasing her

hydration. More liquid during the day. And I would get some real good cream for

her skin and maybe if you do a massage with it prior to her bed time, she may

just be able to enjoy it enough and it may keep her skin moist.

Of course this won't work with her hair. Just some thoughts I had.

Hugs,

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away from

LBD in 2002.

itching and social workers

For over a year at bedtime my mother in law gets itchy. Usually her head and

back and sometimes arms. Lately I am having to make sock mits and secure those

over her hands at night lest she tear her skin. She calls out constantly for

help while trying to scratch. There are no bumps, no rash no sign of anything

except where she manages to scratch. We ruled out everything under the sun.

Finally it appears it’s the lbd or parkinsons or whichever… and it’s a

neurological maybe psychological thing – nothing stops the itching except for

sleep but when she itches she won’t sleep. It is very real to her however so I

can explain it’s parkinson’s playing a trick on her mind and she gets it -

for about 5 seconds. I have gotten absolutely no help anywhere with this – not

her doctor or neurologist or the home health rns experienced with lbd and

parkinsons (supposedly). Any ideas or suggestions are welcome. This is just one

other thing that is costing

us all precious sleep.

Oh, also I finally got her MediCal application through and while she has a share

of cost, they will help some with in home support services. Today a social

worker calls and starts telling the share of costs is high blah blah blah. I

keep saying I know it is, however any little bit will help. Finally I ask her if

she’s trying to persuade us to not try and get any hours for her to have

assistance? The social worker tells me yes. I asked her to kindly get over here

and complete the intake and decide how many hours and depending on that decision

we’ll know if we need to appeal or not. She is coming out on Wednesday. She

sounds young and snippy and I had to ask her if she had any knowledge of LBD and

Parkinson’s – she said she did. I told her well then I’m surprised because

you might have understood how much help she needs.

As my sleep is shortened my patience with these sorts is also shortened. I wish

they would just do their job correctly and stop making it so hard to get any

kind of help.

Thank you

Dorothy

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Posted
Posted

Hi Sheila,

I’ve not heard of that cream but I will look for it – thank you. I’m glad

you found something that helps! Also glad you are getting some help for

yourselves as well. They don’t offer anything like that here. There is

very little to support family caregiving here and I have come to the sad

conclusion that the nursing home lobby is responsible for it. So thank goodness

you have some respite and some help on order.

It sounds like you have a great social worker and are in good hands!

-Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of S BUTLER

Sent: Sunday, May 08, 2011 12:55 AM

To: LBDcaregivers

Subject: Re: itching and social workers

Hi

My mum had very itchy legs and it was our pharmicist who recommended E45 cream

especially for itchy skin. This has worked and mum no longer scratches. We are

very lucky - mum's social worker is actually begging us to claim services!!! We

have a wheelchair and hospital bed on order. These will make life so much

easier for her and us. The social worker also did a carer's assessment on me

and my 2 sisters. This now entitles us, as carers, to 6 alternative therapies

and also a very small allowance to use for respite breaks. It may not sound a

lot but it helps.

Sheila

________________________________

From: Donna Mido <twomido@... <mailto:twomido%40webtv.net> >

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

Sent: Sunday, 8 May, 2011 8:17:12

Subject: Re: itching and social workers

If it isn't the meds as someone suggested, you might try increasing her

hydration. More liquid during the day. And I would get some real good cream for

her skin and maybe if you do a massage with it prior to her bed time, she may

just be able to enjoy it enough and it may keep her skin moist.

Of course this won't work with her hair. Just some thoughts I had.

Hugs,

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away from

LBD in 2002.

itching and social workers

For over a year at bedtime my mother in law gets itchy. Usually her head and

back and sometimes arms. Lately I am having to make sock mits and secure those

over her hands at night lest she tear her skin. She calls out constantly for

help while trying to scratch. There are no bumps, no rash no sign of anything

except where she manages to scratch. We ruled out everything under the sun.

Finally it appears it’s the lbd or parkinsons or whichever… and it’s a

neurological maybe psychological thing – nothing stops the itching except for

sleep but when she itches she won’t sleep. It is very real to her however so I

can explain it’s parkinson’s playing a trick on her mind and she gets it -

for

about 5 seconds. I have gotten absolutely no help anywhere with this – not her

doctor or neurologist or the home health rns experienced with lbd and parkinsons

(supposedly). Any ideas or suggestions are welcome. This is just one other thing

that is costing us all precious sleep.

Oh, also I finally got her MediCal application through and while she has a share

of cost, they will help some with in home support services. Today a social

worker calls and starts telling the share of costs is high blah blah blah. I

keep saying I know it is, however any little bit will help. Finally I ask her if

she’s trying to persuade us to not try and get any hours for her to have

assistance? The social worker tells me yes. I asked her to kindly get over here

and complete the intake and decide how many hours and depending on that decision

we’ll know if we need to appeal or not. She is coming out on Wednesday. She

sounds young and snippy and I had to ask her if she had any knowledge of LBD and

Parkinson’s – she said she did. I told her well then I’m surprised because

you

might have understood how much help she needs.

As my sleep is shortened my patience with these sorts is also shortened. I wish

they would just do their job correctly and stop making it so hard to get any

kind of help.

Thank you

Dorothy

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Share on other sites
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Guest guest

Posted
Posted

Thank you, also a great suggestion.

A little while ago you shared about sleeping in your husband’s room and we

have been trying this also from time to time but without a change in this

itching behavior. If she can sleep a few hours it usually subsides and is

replaced with either “my leg hurts†or “is it time to get up†I keep

thinking it is some kind of “sensation†that makes her feel like she’s

itchy – maybe agitation sometimes, or fatigue maybe or perhaps some kind of

pain. I try to be sure she has adequate pain medication and that I don’t miss

anything because she does have a hard time expressing/realizing when she hurts

(and other times it’s magnified x100!). Also make sure she isn’t too hot

because she sleeps hot.

But the other thing that’s been in the back of my mind – and was pointed out

to me off list – is the possibility this itching is some kind of

hallucination. If so it would explain a lot but then how to manage it better?

Maybe that’s why the placebo anti itching medicine works – as long as she

can remember she had it?

-Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of railfan2001@...

Sent: Sunday, May 08, 2011 5:41 AM

To: LBDcaregivers

Subject: Re: itching and social workers

Is it possible for someone to move into her room with her? Or move her into

someone elses room? would call out in the night if I wasn't there and he

awoke in a darkened room. I moved into his room and learned to sleep with the

lights on and the tv playing softly. He would still get up but I was there to

comfort and assure him things were okay. At least we both got some sleep each

night. And if I caught it early enough I could even keep him in bed by

addressing his concerns before he was fully awake.

>

> For over a year at bedtime my mother in law gets itchy. Usually her head and

back and sometimes arms. Lately I am having to make sock mits and secure those

over her hands at night lest she tear her skin. She calls out constantly for

help while trying to scratch. There are no bumps, no rash no sign of anything

except where she manages to scratch. We ruled out everything under the sun.

Finally it appears it’s the lbd or parkinsons or whichever… and

it’s a neurological maybe psychological thing †" nothing stops the

itching except for sleep but when she itches she won’t sleep. It is very

real to her however so I can explain it’s parkinson’s playing a

trick on her mind and she gets it - for about 5 seconds. I have gotten

absolutely no help anywhere with this †" not her doctor or neurologist or

the home health rns experienced with lbd and parkinsons (supposedly). Any ideas

or suggestions are welcome. This is just one other thing that is costing us all

precious sleep.

>

>

>

> Oh, also I finally got her MediCal application through and while she has a

share of cost, they will help some with in home support services. Today a social

worker calls and starts telling the share of costs is high blah blah blah. I

keep saying I know it is, however any little bit will help. Finally I ask her if

she’s trying to persuade us to not try and get any hours for her to have

assistance? The social worker tells me yes. I asked her to kindly get over here

and complete the intake and decide how many hours and depending on that decision

we’ll know if we need to appeal or not. She is coming out on Wednesday.

She sounds young and snippy and I had to ask her if she had any knowledge of LBD

and Parkinson’s †" she said she did. I told her well then I’m

surprised because you might have understood how much help she needs.

>

>

>

> As my sleep is shortened my patience with these sorts is also shortened. I

wish they would just do their job correctly and stop making it so hard to get

any kind of help.

>

>

>

> Thank you

>

>

>

> Dorothy

>

>

>

>

>

>

>

>

>

>

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Share on other sites
Guest guest

Guest guest

Posted
Posted

Hi Dorothy,

I'm sorry, I have no experience to pass on to you

but I can say that my husband, though he is early

on in this dilemma, has food tasting

variations. He tells me food is way too hot when

it is not overly spiced. He is also eating his

food quite cool rather than up to the temperature

it should be. He is reheating leftovers when he does this.

You might try vitamine E oil. It isn't easy to

find just the oil, but break open a capsule and

try it. If she is truly itchy, vitamine E should

help and it sure won't hurt anything. Vitamine E

is very good for the skin and does help with normal itching and scratching.

Bonnie

At 07:19 AM 5/8/2011, you wrote:

>

>

>Thank you jo, I would appreciate input from

>people familiar with this and thank you for your

>kind offer. Funny though I don’t feel like

>I’m living in hell anymore lately. It’s just

>part of this disease process and we’re going

>through it. If I can figure this out it will

>give me more insight into the whole thing and

>maybe it will help another who has a similar

>problem. Thank you so much for caring and Happy mother’s day J

>

>-Dorothy

>

>From:

><mailto:LBDcaregivers%40yahoogroups.com>LBDcaregivers

>[mailto:LBDcaregivers ] On Behalf Of Jo Blume

>Sent: Sunday, May 08, 2011 3:36 AM

>To: <mailto:LBDcaregivers%40yahoogroups.com>LBDcaregivers

>Subject: RE: itching and social workers

>

>OH Dorothy, my heart goes out to you; I simply

>can't imagine how Awful this whole production

>must be for you! Would it be alright with you if

>I shared this email and your predicament with a

>Doctor I know, try and see if he might have an idea or two which might help?

>

>Please know that we all care and sympathize with

>this horror show you and your mother in law are living in.

>Hoping somehow answers will be found this

>nightmare will end for you both, AND SOON!

>Jo

>

>

>

>From: dsinouye

><<mailto:fullcircle%40sonic.net>fullcircle@...

><mailto:fullcircle%40sonic.net> >

>Subject: RE: itching and social workers

>To:

><mailto:LBDcaregivers%40yahoogroups.com>LBDcaregivers

><mailto:LBDcaregivers%40yahoogroups.com>

>Date: Sunday, May 8, 2011, 3:51 AM

>

>What we have ruled out:

>

>every medicine and vitamin she takes

>

>every food and drink and thickener

>

>Laundry soap, sheet material, pillows, blankets,

>all clothing, oxygen canula, socks, air in room,

>temperature, soap, shampoo, conditioner, skin

>lotions used, depends, poise pads, cats,

>television (on or off), lights (on or off),

>nightlights (on or off), music (no difference

>and sometimes irritating to her) and a whole lot

>more things I’m to tired to think of at the moment.

>

>She manages to drink between 3 and 5 12oz

>glasses of water a day usually and her doctor

>says she I generally well hydrated. We slather

>lotion on her skin (after making sure it

>wasn’t causing the problem) and also use aloe

>vera gel (have tried two different kinds, again

>after ruling out they weren’t causing or

>contributing to the problem). Her skin is far

>from dry. Her diaper is not wet or soiled I

>always check when I go back in and if it is

>soiled I change her right away in a very calm way, speaking quietly.

>

>It happens almost always when she goes to bed. I

>get her ready, put her in bed, keeping

>everything light and positive and calm and

>happy, adjust pillows to get her comfortable and

>we all say good night. As soon as everyone is

>out of the room, almost immediately, she starts

>calling, “Help me somebody please help meâ€.

>I give it 15 minutes and if she continues and

>doesn’t fall asleep I know it’s not going to

>be easy. I go back into her room and ask her

>what’s the matter and she – usually – tells

>me she’s itchy. We have tried: applyying aloe,

>lotion, scratching, cold damp compresses which

>do something temporary but as soon as I’m out

>the door she starts up again itching. She will

>carry on for hours, with or without someone

>trying to help. After the second visit I leave,

>she starts calling and I wait 30 minutes hoping

>she will sleep. Occasionally she does but mostly

>not so I go in for a third visit… and the night proceeds like that.

>

>What helps sometimes, but maybe a fluke –

>placebo “itchyâ†medicines. There is a

>liquid medicine she takes that is “as

>needed†and I have diluted it with some water

>and given it to her as “itchy medicineâ€. It

>tastes terrible she tells me. I tell her it’s

>going to help her and take the itching away but

>it will take a few minutes to work – but if

>after 30 minutes it doesn ™t work I can give

>her more. 80% of the time with this she goes to

>sleep and manages to sleep a few hours before

>waking up calling for help again. The placebo worked frequently but not always.

>

>Sometimes cold damp compresses work. One time I

>explained it was Parkinson’s playing a trick

>on her mind and that the sooner she could try to

>relax and sleep the sooner she would stop

>itching. She seemed to understand and she

>actually went to sleep and slept for almost 5

>hours. Sometimes I think it could be something

>that goes with agitation or some other emotion

>or state of being because I notice when she says

>she’s itchy she is chewing up a storm (she

>“chews†when her false teeth aren’t in).

>She chews a lot at night lately when at first

>trying to get to sleep and it makes the canula

>move around on her face and she starts picking

>and clawing at it trying to get it off. There

>are times that she has scratched her face enough

>to leave scabs from itching. Also a few months

>ago she gouged the corner of her eyelid from

>scratching. I put fluffy socks on her hands at

>night so she can’t scratch herself. I put her teeth back in after cleaning

>everything well so she doesn’t chew all night.

>

>I have no idea but I keep trying things and keep

>notes and maybe at some point I’ll figure it out.

>

>Dorothy

>

>From:

><mailto:LBDcaregivers%40yahoogroups.com>LBDcaregivers

><mailto:LBDcaregivers%40yahoogroups.com>

>[mailto:LBDcaregivers

><mailto:LBDcaregivers%40yahoogroups.com> ] On Behalf Of Donna Mido

>Sent: Sunday, May 08, 2011 12:17 AM

>To:

><mailto:LBDcaregivers%40yahoogroups.com>LBDcaregivers

><mailto:LBDcaregivers%40yahoogroups.com>

>Subject: Re: itching and social workers

>

>If it isn't the meds as someone suggested, you

>might try increasing her hydration. More liquid

>during the day. And I would get some real good

>cream for her skin and maybe if you do a massage

>with it prior to her bed time, she may just be

>able to enjoy it enough and it may keep her skin moist.

>

>Of course this won't work with her hair. Just some thoughts I had.

>

>Hugs,

>

>Donna R

>

>Cared for Mom 3 years in my home and the last

>year at a nh. She passed away from LBD in 2002.

>

> itching and social workers

>

>For over a year at bedtime my mother in law gets

>itchy. Usually her head and back and sometimes

>arms. Lately I am having to make sock mits and

>secure those over her hands at night lest she

>tear her skin. She calls out constantly for help

>while trying to scratch. There are no bumps, no

>rash no sign of anything except where she

>manages to scratch. We ruled out everything

>under the sun. Finally it appears it’s the lbd

>or parkinsons or whichever… and it’s a

>neurological maybe psychological thing â–

>nothing stops the itching except for sleep but

>when she itches she won’t sleep. It is very

>real to her however so I can explain it’s

>parkinson’s playing a trick on her mind and

>she gets it - for about 5 seconds. I have gotten

>absolutely no help anywhere with this – not

>her doctor or neurologist or the home health rns

>experienced with lbd and parkinsons

>(supposedly). Any ideas or suggestions are

>welcome. This is just one other thing that is costing

>us all precious sleep.

>

>Oh, also I finally got her MediCal application

>through and while she has a share of cost, they

>will help some with in home support services.

>Today a social worker calls and starts telling

>the share of costs is high blah blah blah. I

>keep saying I know it is, however any little bit

>will help. Finally I ask her if she’s trying

>to persuade us to not try and get any hours for

>her to have assistance? The social worker tells

>me yes. I asked her to kindly get over here and

>complete the intake and decide how many hours

>and depending on that decision we’ll know if

>we need to appeal or not. She is coming out on

>Wednesday. She sounds young and snippy and I had

>to ask her if she had any knowledge of LBD and

>Parkinson’s –“ she said she did. I told her

>well then I’m surprised because you might have

>understood how much help she needs.

>

>As my sleep is shortened my patience with these

>sorts is also shortened. I wish they would just

>do their job correctly and stop making it so hard to get any kind of help.

>

>Thank you

>

>Dorothy

>

>

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Posted
Posted

Hi My Mum has been saying for the past week or two that her back is itchy and we

too have found nothing to show why. Yesterday she said her back was itchy and so

I was gently scratching her back but she said this made it more itchy. The girls

at the NH say they give her gentle massages and sometimes it helps but not all

the time.

cheers

Cheryl

Daughter of diagnosed with PD 11 years ago, re diagnosed with LBD March

2010.

>

> For over a year at bedtime my mother in law gets itchy. Usually her head and

back and sometimes arms. Lately I am having to make sock mits and secure those

over her hands at night lest she tear her skin. She calls out constantly for

help while trying to scratch. There are no bumps, no rash no sign of anything

except where she manages to scratch. We ruled out everything under the sun.

Finally it appears it’s the lbd or parkinsons or whichever… and it’s a

neurological maybe psychological thing †" nothing stops the itching except for

sleep but when she itches she won’t sleep. It is very real to her however so

I can explain it’s parkinson’s playing a trick on her mind and she gets it -

for about 5 seconds. I have gotten absolutely no help anywhere with this †"

not her doctor or neurologist or the home health rns experienced with lbd and

parkinsons (supposedly). Any ideas or suggestions are welcome. This is just

one other thing that is costing us all precious sleep.

>

>

>

> Oh, also I finally got her MediCal application through and while she has a

share of cost, they will help some with in home support services. Today a

social worker calls and starts telling the share of costs is high blah blah

blah. I keep saying I know it is, however any little bit will help. Finally I

ask her if she’s trying to persuade us to not try and get any hours for her to

have assistance? The social worker tells me yes. I asked her to kindly get

over here and complete the intake and decide how many hours and depending on

that decision we’ll know if we need to appeal or not. She is coming out on

Wednesday. She sounds young and snippy and I had to ask her if she had any

knowledge of LBD and Parkinson’s †" she said she did. I told her well then

I’m surprised because you might have understood how much help she needs.

>

>

>

> As my sleep is shortened my patience with these sorts is also shortened. I

wish they would just do their job correctly and stop making it so hard to get

any kind of help.

>

>

>

> Thank you

>

>

>

> Dorothy

>

>

>

>

>

>

>

>

>

>

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Posted
Posted

Dear Dorothy,

I've been catching up on the posts, and think you may have hit on something -

what if she feels stressed out about being left alone to sleep, and has these

hallucinations that she is itchy? My heart breaks reading your emails. I wish

I had some answers for you, but I think you may be on the right path.

Sending you strength from NY,

Helene

(Mom 77, 11 years into the disease)

> >

> > For over a year at bedtime my mother in law gets itchy. Usually her head and

back and sometimes arms. Lately I am having to make sock mits and secure those

over her hands at night lest she tear her skin. She calls out constantly for

help while trying to scratch. There are no bumps, no rash no sign of anything

except where she manages to scratch. We ruled out everything under the sun.

Finally it appears it’s the lbd or parkinsons or whichever… and

it’s a neurological maybe psychological thing †" nothing stops the

itching except for sleep but when she itches she won’t sleep. It is very

real to her however so I can explain it’s parkinson’s playing a

trick on her mind and she gets it - for about 5 seconds. I have gotten

absolutely no help anywhere with this †" not her doctor or neurologist or

the home health rns experienced with lbd and parkinsons (supposedly). Any ideas

or suggestions are welcome. This is just one other thing that is costing us all

precious sleep.

> >

> >

> >

> > Oh, also I finally got her MediCal application through and while she has a

share of cost, they will help some with in home support services. Today a social

worker calls and starts telling the share of costs is high blah blah blah. I

keep saying I know it is, however any little bit will help. Finally I ask her if

she’s trying to persuade us to not try and get any hours for her to have

assistance? The social worker tells me yes. I asked her to kindly get over here

and complete the intake and decide how many hours and depending on that decision

we’ll know if we need to appeal or not. She is coming out on Wednesday.

She sounds young and snippy and I had to ask her if she had any knowledge of LBD

and Parkinson’s †" she said she did. I told her well then I’m

surprised because you might have understood how much help she needs.

> >

> >

> >

> > As my sleep is shortened my patience with these sorts is also shortened. I

wish they would just do their job correctly and stop making it so hard to get

any kind of help.

> >

> >

> >

> > Thank you

> >

> >

> >

> > Dorothy

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

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Posted
Posted

Maybe! she has restless leg syndrome - and she's saying 'itchy' b/c she doesn't

know how to explain the sensation... Restless leg syndrome is common for those

w/ LBD

>

> What we have ruled out:

>

> every medicine and vitamin she takes

>

> every food and drink and thickener

>

> Laundry soap, sheet material, pillows, blankets, all clothing, oxygen canula,

socks, air in room, temperature, soap, shampoo, conditioner, skin lotions used,

depends, poise pads, cats, television (on or off), lights (on or off),

nightlights (on or off), music (no difference and sometimes irritating to her)

and a whole lot more things I’m to tired to think of at the moment.

>

>

>

> She manages to drink between 3 and 5 12oz glasses of water a day usually and

her doctor says she I generally well hydrated. We slather lotion on her skin

(after making sure it wasn’t causing the problem) and also use aloe vera gel

(have tried two different kinds, again after ruling out they weren’t causing

or contributing to the problem). Her skin is far from dry. Her diaper is not

wet or soiled I always check when I go back in and if it is soiled I change her

right away in a very calm way, speaking quietly.

>

>

>

> It happens almost always when she goes to bed. I get her ready, put her in

bed, keeping everything light and positive and calm and happy, adjust pillows to

get her comfortable and we all say good night. As soon as everyone is out of

the room, almost immediately, she starts calling, “Help me somebody please

help meâ€. I give it 15 minutes and if she continues and doesn’t fall asleep

I know it’s not going to be easy. I go back into her room and ask her

what’s the matter and she †" usually †" tells me she’s itchy. We have

tried: applying aloe, lotion, scratching, cold damp compresses which do

something temporary but as soon as I’m out the door she starts up again

itching. She will carry on for hours, with or without someone trying to help.

After the second visit I leave, she starts calling and I wait 30 minutes hoping

she will sleep. Occasionally she does but mostly not so I go in for a third

visit… and the night proceeds like that.

>

>

>

> What helps sometimes, but maybe a fluke †" placebo “itchy†medicines.

There is a liquid medicine she takes that is “as needed†and I have diluted

it with some water and given it to her as “itchy medicineâ€. It tastes

terrible she tells me. I tell her it’s going to help her and take the itching

away but it will take a few minutes to work †" but if after 30 minutes it

doesn’t work I can give her more. 80% of the time with this she goes to sleep

and manages to sleep a few hours before waking up calling for help again. The

placebo worked frequently but not always.

>

>

>

> Sometimes cold damp compresses work. One time I explained it was

Parkinson’s playing a trick on her mind and that the sooner she could try to

relax and sleep the sooner she would stop itching. She seemed to understand and

she actually went to sleep and slept for almost 5 hours. Sometimes I think it

could be something that goes with agitation or some other emotion or state of

being because I notice when she says she’s itchy she is chewing up a storm

(she “chews†when her false teeth aren’t in). She chews a lot at night

lately when at first trying to get to sleep and it makes the canula move around

on her face and she starts picking and clawing at it trying to get it off.

There are times that she has scratched her face enough to leave scabs from

itching. Also a few months ago she gouged the corner of her eyelid from

scratching. I put fluffy socks on her hands at night so she can’t scratch

herself. I put her teeth back in after cleaning everything well so she

doesn’t chew all night.

>

>

>

> I have no idea but I keep trying things and keep notes and maybe at some point

I’ll figure it out.

>

>

>

> Dorothy

>

>

>

>

>

> From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of Donna Mido

> Sent: Sunday, May 08, 2011 12:17 AM

> To: LBDcaregivers

> Subject: Re: itching and social workers

>

>

>

>

>

> If it isn't the meds as someone suggested, you might try increasing her

hydration. More liquid during the day. And I would get some real good cream for

her skin and maybe if you do a massage with it prior to her bed time, she may

just be able to enjoy it enough and it may keep her skin moist.

>

> Of course this won't work with her hair. Just some thoughts I had.

>

> Hugs,

>

> Donna R

>

> Cared for Mom 3 years in my home and the last year at a nh. She passed away

from LBD in 2002.

>

> itching and social workers

>

> For over a year at bedtime my mother in law gets itchy. Usually her head and

back and sometimes arms. Lately I am having to make sock mits and secure those

over her hands at night lest she tear her skin. She calls out constantly for

help while trying to scratch. There are no bumps, no rash no sign of anything

except where she manages to scratch. We ruled out everything under the sun.

Finally it appears it’s the lbd or parkinsons or whichever… and it’s a

neurological maybe psychological thing †" nothing stops the itching except for

sleep but when she itches she won’t sleep. It is very real to her however so I

can explain it’s parkinson’s playing a trick on her mind and she gets it -

for about 5 seconds. I have gotten absolutely no help anywhere with this †" not

her doctor or neurologist or the home health rns experienced with lbd and

parkinsons (supposedly). Any ideas or suggestions are welcome. This is just one

other thing that is costing us all precious sleep.

>

> Oh, also I finally got her MediCal application through and while she has a

share of cost, they will help some with in home support services. Today a social

worker calls and starts telling the share of costs is high blah blah blah. I

keep saying I know it is, however any little bit will help. Finally I ask her if

she’s trying to persuade us to not try and get any hours for her to have

assistance? The social worker tells me yes. I asked her to kindly get over here

and complete the intake and decide how many hours and depending on that decision

we’ll know if we need to appeal or not. She is coming out on Wednesday. She

sounds young and snippy and I had to ask her if she had any knowledge of LBD and

Parkinson’s †" she said she did. I told her well then I’m surprised because

you might have understood how much help she needs.

>

> As my sleep is shortened my patience with these sorts is also shortened. I

wish they would just do their job correctly and stop making it so hard to get

any kind of help.

>

> Thank you

>

> Dorothy

>

>

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Posted
Posted

Hello Dorothy, I went

through a similiar situation with a woman I cared for, that had LBD. She was

experiencing a burning pain,under her chin and atop her chest for which she had

every neurological test done to rule out anything physical. To make a long

search for answers short, Turns out it was a tactile hallucination exasperated

by the amt. of sinemet she was taking. Since the geriatric psychiatrist wouldn't

change the neurologists prescribed dose of sinemet, he did put her on seroquel

and celexa and in one week she never burned again. We did have to adjust amts.

and times given to balance the sinemet but she lived with no more burning for 4

more years in peace. God Bless your caring heart. Cammy

>

> For over a year at bedtime my mother in law gets itchy. Usually her head and

back and sometimes arms. Lately I am having to make sock mits and secure those

over her hands at night lest she tear her skin. She calls out constantly for

help while trying to scratch. There are no bumps, no rash no sign of anything

except where she manages to scratch. We ruled out everything under the sun.

Finally it appears it’s the lbd or parkinsons or whichever… and it’s a

neurological maybe psychological thing †" nothing stops the itching except for

sleep but when she itches she won’t sleep. It is very real to her however so

I can explain it’s parkinson’s playing a trick on her mind and she gets it -

for about 5 seconds. I have gotten absolutely no help anywhere with this †"

not her doctor or neurologist or the home health rns experienced with lbd and

parkinsons (supposedly). Any ideas or suggestions are welcome. This is just

one other thing that is costing us all precious sleep.

>

>

>

> Oh, also I finally got her MediCal application through and while she has a

share of cost, they will help some with in home support services. Today a

social worker calls and starts telling the share of costs is high blah blah

blah. I keep saying I know it is, however any little bit will help. Finally I

ask her if she’s trying to persuade us to not try and get any hours for her to

have assistance? The social worker tells me yes. I asked her to kindly get

over here and complete the intake and decide how many hours and depending on

that decision we’ll know if we need to appeal or not. She is coming out on

Wednesday. She sounds young and snippy and I had to ask her if she had any

knowledge of LBD and Parkinson’s †" she said she did. I told her well then

I’m surprised because you might have understood how much help she needs.

>

>

>

> As my sleep is shortened my patience with these sorts is also shortened. I

wish they would just do their job correctly and stop making it so hard to get

any kind of help.

>

>

>

> Thank you

>

>

>

> Dorothy

>

>

>

>

>

>

>

>

>

>

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Posted
Posted

Has she been taking Vicodin for awhile? Many different types of medication

(including Vicodin) can cause the person to feel itching all over. She would

not be able to sleep at all due to the itching. But usually the itching

continues some during the daytime.

>

> For over a year at bedtime my mother in law gets itchy. Usually her head and

back and sometimes arms. Lately I am having to make sock mits and secure those

over her hands at night lest she tear her skin. She calls out constantly for

help while trying to scratch. There are no bumps, no rash no sign of anything

except where she manages to scratch. We ruled out everything under the sun.

....

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Posted
Posted

Dorothy,

If it's a hallucination perhaps you could take some lotion and tell her that

it's a prescription from the doctor to cure the itch and put that on every night

at bedtime. If it doesn't work immediately tell her that it takes a day or two

to work. Maybe you can convince her brain that the itching should go away.

in Dallas

>

> For over a year at bedtime my mother in law gets itchy. Usually her head and

back and sometimes arms. Lately I am having to make sock mits and secure those

over her hands at night lest she tear her skin. She calls out constantly for

help while trying to scratch. There are no bumps, no rash no sign of anything

except where she manages to scratch. We ruled out everything under the sun.

Finally it appears it’s the lbd or parkinsons or whichever… and it’s a

neurological maybe psychological thing †" nothing stops the itching except for

sleep but when she itches she won’t sleep. It is very real to her however so

I can explain it’s parkinson’s playing a trick on her mind and she gets it -

for about 5 seconds. I have gotten absolutely no help anywhere with this †"

not her doctor or neurologist or the home health rns experienced with lbd and

parkinsons (supposedly). Any ideas or suggestions are welcome. This is just

one other thing that is costing us all precious sleep.

>

>

>

> Oh, also I finally got her MediCal application through and while she has a

share of cost, they will help some with in home support services. Today a

social worker calls and starts telling the share of costs is high blah blah

blah. I keep saying I know it is, however any little bit will help. Finally I

ask her if she’s trying to persuade us to not try and get any hours for her to

have assistance? The social worker tells me yes. I asked her to kindly get

over here and complete the intake and decide how many hours and depending on

that decision we’ll know if we need to appeal or not. She is coming out on

Wednesday. She sounds young and snippy and I had to ask her if she had any

knowledge of LBD and Parkinson’s †" she said she did. I told her well then

I’m surprised because you might have understood how much help she needs.

>

>

>

> As my sleep is shortened my patience with these sorts is also shortened. I

wish they would just do their job correctly and stop making it so hard to get

any kind of help.

>

>

>

> Thank you

>

>

>

> Dorothy

>

>

>

>

>

>

>

>

>

>

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Posted
Posted

I've wondered if the itching might be an hallucination and if Seroquel would

help. Please let us know if you find a cure from all the suggestions here or

elsewhere!

Wishing you success as you move along with this.

> >

> > For over a year at bedtime my mother in law gets itchy. Usually her head

and back and sometimes arms. Lately I am having to make sock mits and secure

those over her hands at night lest she tear her skin. She calls out constantly

for help while trying to scratch. There are no bumps, no rash no sign of

anything except where she manages to scratch. We ruled out everything under the

sun. Finally it appears it’s the lbd or parkinsons or whichever… and it’s

a neurological maybe psychological thing †" nothing stops the itching except

for sleep but when she itches she won’t sleep. It is very real to her

however so I can explain it’s parkinson’s playing a trick on her mind and

she gets it - for about 5 seconds. I have gotten absolutely no help anywhere

with this †" not her doctor or neurologist or the home health rns experienced

with lbd and parkinsons (supposedly). Any ideas or suggestions are welcome.

This is just one other thing that is costing us all precious sleep.

> >

> >

> >

> > Oh, also I finally got her MediCal application through and while she has a

share of cost, they will help some with in home support services. Today a

social worker calls and starts telling the share of costs is high blah blah

blah. I keep saying I know it is, however any little bit will help. Finally I

ask her if she’s trying to persuade us to not try and get any hours for her to

have assistance? The social worker tells me yes. I asked her to kindly get

over here and complete the intake and decide how many hours and depending on

that decision we’ll know if we need to appeal or not. She is coming out on

Wednesday. She sounds young and snippy and I had to ask her if she had any

knowledge of LBD and Parkinson’s †" she said she did. I told her well then

I’m surprised because you might have understood how much help she needs.

> >

> >

> >

> > As my sleep is shortened my patience with these sorts is also shortened. I

wish they would just do their job correctly and stop making it so hard to get

any kind of help.

> >

> >

> >

> > Thank you

> >

> >

> >

> > Dorothy

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

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