RE: My Sister

[Guest guest]

HI ,

Here are my thoughts, hope they will help. I'm glad to elaborate if

necessary. Thanks for watching over your sister and being here trying to

figure this out. It's really wonderful that you are willing to do this. So

many will or cannot. It's not a cakewalk to be sure and yes every day

different things will come up. I've been going through some of these

things with my mother in law. This is from experience with caregiving for

her and what I've learned in the process. I ask a lot of questions J

Infection is responsible for a lot of strange behavior and this is where

efforts should be put first to see if there is anything going on. Urinary

tract infections are so very common and go undetected because often our

loved ones don't know they have it. The tell tale signs we know they don't

always experience. My mother in law used to get a back ache when she had

one. Then she just got crabby and agitated (really agitated) and never

slept. And all the time there's an infection going on. A Urinalysis

should be obtained and sent to a good lab, hospital labs are best in my

experience. Someone should be with her to make sure a sample is obtained

properly , and It should go directly to a lab with an order to culture

everything as indicated. A culture means whatever bug is causing trouble

is cultured to see what antibiotic will work treating it effectively. Some

antibiotics are known to cause behavior trouble - Cipro, Leviquin and Avalox

all have warnings about confusion & agitation in elderly and unless there is

nothing else that would be effective it might be good to avoid if possible.

Otherwise it might be adding to the problem. Often our loved ones have many

bacteria with UTIs and labs will disregard samples as " contaminated " if they

see many bacteria. If this happens but there are White blood cells present

ask to have it repeated. Any other place there could be an infection is

lungs. Is she coughing or congested? That she is not eating well is a bit

of a red flag that she is probably aspirating and if so that will put her at

risk for aspiration pneumonia. This will also cause bizarre behavior.

She definitely should be seeing a speech therapist/pathologist to evaluate

things.

What is the assisted living facility doing for her and how are they

adjusting to her disease process? What is their level of care? To be

frank, many will adjust some and then they will start talking about moving

to a nursing home. If she is awake at night, if she calls out " help me " at

night it's disruptive to others and they will want to quiet her down. That

might not be the best thing for her. You might have to really push to get

them to rule out infections. But if so do it because your sister cannot.

I'm curious what sort of care does this place offer and it may indeed be a

good thing to know how they intend to adjust as her disease progresses?

Do you know what medications your sister has now and who is managing the

medications and dispensing them? Do you know what the other medications

were she had trouble with including dosage and problems she had with them?

Did they titrate the medicines at all or did they just bombard her with a

whole initial dose? I'm very concerned that she was given Ativan but that

is the most common " keep them quiet " medication used in facilities. Ativan

has a reputation of bringing on hallucinations, paranoia and even violence

in some dementia patients. It can also make tremors worse and walking ,

moving and swallowing difficult. If she has LBD she has to be very careful

with medications like this they can make it worse and she may not recover

from their serious side effects. Ativan has made some people decline very

severely. If it were my sister and I was medical power of attorney I

would insist I know all of this information and that medications are checked

out thoroughly and those that are anticholergenetic or neuroleptic are

avoided or used with extreme caution, trying very small doses and titrating

up only after tolerance is shown. Who is her neurologist and do they have

experience with LBD and do you have a pharmacist you can run these medicines

by and learn how they might help or not? If she isn't seeing an

experienced neurologist do you have access to one to consult? They can

work on conjunction with her primary care doctor. It is common that

people with this have a hard time sleeping at night. Whoever is there

overnight needs to be experienced with this stuff if at all possible. It

really makes a huge difference and if they have someone with little

experience or who doesn't speak good English or expects to sleep at night

and just be there in case of emergency this may not be the best situation

for her.

Is she getting physical therapy regularly and daily exercises to keep her

body strong and her coordination and is she doing any kind of activities at

all during the day? Or is she left on her own? A physical therapist can

work with this disease well and keep a person mobile to an extent which is

going to help in the long run. There are simple exercises that can be done

while sitting. Tricks like lifting toes and then legs up a few times before

trying to get up to stand go a long way to keeping the " free stuck to the

floor " problem from happening or happening so often or severely. A lot of

tricks that can be used there. It is a lot of effort but it can pay off

well.

What are your plans with this - keep her there as long as possible? Is

there anyone trusted in her family that can take her in and utilize home

health and a good caregiver or two? Are there resources available to have a

live in caregiver if she did live independently (with family)? With a

good caregiver it is feasible she could be out of a nursing home a long

time, if not to the end, even into hospice. If not, do you have a good

skilled nursing facility identified for dementia care? It would be really

helpful for you to find a local support group who can help you identify

these things locally. Glad to talk if you need.

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of j.hibbitts

Sent: Wednesday, January 26, 2011 5:00 PM

To: LBDcaregivers

Subject: My Sister

My sister, 74 years of age, was diagnosed w/parkinson's severals ago and put

on meds for parkinson. A couple of years ago she started seeing people in

her house, seeing black lace around things especially curtains. She was

never afraid of these people but couldn't understand why they were in her

house. In November early one morning she left her home barefooted and walked

down the road about 1/2 mile before someone got to her. She was in the

hospital for approximately three weeks and was diagnosed with LBD. They have

taken her off all parkinson's meds because of the possibility of increasing

the hallucinations. She is now living in a very nice assisted living

facility. They have tried Seroquil, Risperdal, Ativan,Paxil and everything

works against her. They are now going to try Abilify. I see her going down

every day. She was a very independent woman who lived by herself for close

to 20 years. Now she is terrified to be alone, very parnoid. She thinks they

! are making movies about her, bugging her room, monitoring her phone calls,

etc. She was able to get up and down from the chair and coach by herself,

but these last few days she has to have assistance. Her feet seem to

" freeze " when she tries to walk. We ask her to move her feet, but she says

she can't.

It is so troubling to see her go through this and not know what to do and

knowing the doctors know little as to what to do. The doctors thinks she is

probably mid-sage. I go see her most days twice a day and we have sitters

during the night. Every day there is something new going on. Today she was

complaining of legs and neck pain. She has just about quit eating. We have

to sit and encourage her to eat what she does. She has lost 18 pounds in

about three months.

Can anyone help us know where were are with this awlful disease or any

medication that seems to work. I know everyone is different. We want to keep

her out of the nursing home as long as possible, but I'm not sure how long

she will be able to stay at the assisted living.

Any help would be greatly appreciated.

Thanks

[Guest guest]

Dorothy:

Thank you for your response. I try to stay up on her medications. She is on

medication for high blood pressure, cholesterol, perminin (sp?, horomone),

nitrofurtin to prevent UTIs, and a anti-inflammatory for arthritics. As of

right now she isn't on any antiphyosic meds. She does have frequent UTIs and

they check her often. She has physical therapy 3 days a week, but the last few

days she has been refusing it. She has never liked exercise even when she was

healthy.

Right now she cannot stand on her own. We are having to lift her to the wheel

chair to take her to the bathroom. The staff at the assisted living seem to be

very caring. As with any nursing facility, you have some that are more patient

and tolerant with patients that require more care. The director is an RN and

they also have an RN who is head of nursing. They have been working with us

very well to help make suggestions to the doctors. We are there several times a

day, so they know we keep close check on her. She only has one son and all of

us work. We thought about bringing her home and tyring to take care of her, but

the doctors advised against it. We live in a rural area and it is very

difficult to find people who will stay/sit will someone and someone you can

trust and depend on. We have people staying with her at night and that has been

an ordeal just to find people for that.

We don't know if what she is doing now is medication or part of the LBD. Her

neuro doctor said there are very few meds that work without side effects and he

just has to try to see what will help her. He and her primary doctor do

communicate about her condition. The next medicine they are going to try is

Abilify. One of the nurses said this worked on a patient in a nursing home that

had very similar symptoms. They didn't think it would, but it did.

She says she is in in constant pain with her legs and now complaining about her

tale bone. Does this type of pain go along with LBD?

I know God can work a miracle in her body and that is what I'm praying.

However, and I hate to use this term, but her mind has her in hell. She sees

very little relief other than maybe the short naps she takes. When she is awake

,she is constantly wanting to know what time it is, who will be staying with

her, " what was that noise " , etc., then the same questions all over again.

Thanks

My Sister

My sister, 74 years of age, was diagnosed w/parkinson's severals ago and put

on meds for parkinson. A couple of years ago she started seeing people in

her house, seeing black lace around things especially curtains. She was

never afraid of these people but couldn't understand why they were in her

house. In November early one morning she left her home barefooted and walked

down the road about 1/2 mile before someone got to her. She was in the

hospital for approximately three weeks and was diagnosed with LBD. They have

taken her off all parkinson's meds because of the possibility of increasing

the hallucinations. She is now living in a very nice assisted living

facility. They have tried Seroquil, Risperdal, Ativan,Paxil and everything

works against her. They are now going to try Abilify. I see her going down

every day. She was a very independent woman who lived by herself for close

to 20 years. Now she is terrified to be alone, very parnoid. She thinks they

! are making movies about her, bugging her room, monitoring her phone calls,

etc. She was able to get up and down from the chair and coach by herself,

but these last few days she has to have assistance. Her feet seem to

" freeze " when she tries to walk. We ask her to move her feet, but she says

she can't.

It is so troubling to see her go through this and not know what to do and

knowing the doctors know little as to what to do. The doctors thinks she is

probably mid-sage. I go see her most days twice a day and we have sitters

during the night. Every day there is something new going on. Today she was

complaining of legs and neck pain. She has just about quit eating. We have

to sit and encourage her to eat what she does. She has lost 18 pounds in

about three months.

Can anyone help us know where were are with this awlful disease or any

medication that seems to work. I know everyone is different. We want to keep

her out of the nursing home as long as possible, but I'm not sure how long

she will be able to stay at the assisted living.

Any help would be greatly appreciated.

Thanks

[Guest guest]

jennifer,

 

i am sorry you are having to deal with lbd, my daddy had it adn i also have it

now  

 

you said someithng about youmom's tial bone hurting,  when she is in wheel

chair does she had a pressure cushoin to sit on,  often when someone is in one

position the bone that is hodling the weight of the body will get sore  in this

case her tail bone.  see about getting her  anice big cushion for her chair

and maybe even put an eggcrate type pad on top fo that,  that may help

alleviate some of that pain.

 

also lbd is awful on he mind   it is soo awful for me when i know waht word i

want to say and i canno come out iwht it,  and yet i cannot get  donnie*my

hubby * to understand waht i am trying to say.  for me this doesn t happen

often,  donnie will elt me struggle to find the word and then i can usually

define the wrod adn he most of the time can help em figure it out.  and

sometiems it is really wrid, i may think of somehting like 'trombone'  and i

may thing of it at nite especially when my mind seems to be most active and

thinking.  and it aggravates the daylights out of me becaue i cannot think of

trombone.  and i try to describe it to donnie,  if he can figure it out i am

happy if not it will lietrally eat at me until i figure it out, even days later,

in this particular situation i woke donnie up 2 nites latera nd said the word i

was looking for was trombone.  iw as so proud i figured it out,  now there was

no special reason taht i had to

think of thi s word, it just came to mind,  i am lucky as i am in early stages

so i can still communicate what i want to say. but my daddy in his finaly weeks

couldnt and i new it frstrated him when he cuoldnt make me undersatnd.  so her

anger adn modd could be that she is 'stuck ' on thinking of somehting and until

she figures it out, or you do,  she wont settle down,  i have been there adn

done that.  sigh.

 

good luck and hug.s sharon

Subject: Re: My Sister

To: LBDcaregivers

Date: Friday, January 28, 2011, 9:27 AM

 

Dorothy:

Thank you for your response. I try to stay up on her medications. She is on

medication for high blood pressure, cholesterol, perminin (sp?, horomone),

nitrofurtin to prevent UTIs, and a anti-inflammatory for arthritics. As of right

now she isn't on any antiphyosic meds. She does have frequent UTIs and they

check her often. She has physical therapy 3 days a week, but the last few days

she has been refusing it. She has never liked exercise even when she was

healthy.

Right now she cannot stand on her own. We are having to lift her to the wheel

chair to take her to the bathroom. The staff at the assisted living seem to be

very caring. As with any nursing facility, you have some that are more patient

and tolerant with patients that require more care. The director is an RN and

they also have an RN who is head of nursing. They have been working with us very

well to help make suggestions to the doctors. We are there several times a day,

so they know we keep close check on her. She only has one son and all of us

work. We thought about bringing her home and tyring to take care of her, but the

doctors advised against it. We live in a rural area and it is very difficult to

find people who will stay/sit will someone and someone you can trust and depend

on. We have people staying with her at night and that has been an ordeal just to

find people for that.

We don't know if what she is doing now is medication or part of the LBD. Her

neuro doctor said there are very few meds that work without side effects and he

just has to try to see what will help her. He and her primary doctor do

communicate about her condition. The next medicine they are going to try is

Abilify. One of the nurses said this worked on a patient in a nursing home that

had very similar symptoms. They didn't think it would, but it did.

She says she is in in constant pain with her legs and now complaining about her

tale bone. Does this type of pain go along with LBD?

I know God can work a miracle in her body and that is what I'm praying. However,

and I hate to use this term, but her mind has her in hell. She sees very little

relief other than maybe the short naps she takes. When she is awake ,she is

constantly wanting to know what time it is, who will be staying with her, " what

was that noise " , etc., then the same questions all over again.

Thanks

My Sister

My sister, 74 years of age, was diagnosed w/parkinson's severals ago and put

on meds for parkinson. A couple of years ago she started seeing people in

her house, seeing black lace around things especially curtains. She was

never afraid of these people but couldn't understand why they were in her

house. In November early one morning she left her home barefooted and walked

down the road about 1/2 mile before someone got to her. She was in the

hospital for approximately three weeks and was diagnosed with LBD. They have

taken her off all parkinson's meds because of the possibility of increasing

the hallucinations. She is now living in a very nice assisted living

facility. They have tried Seroquil, Risperdal, Ativan,Paxil and everything

works against her. They are now going to try Abilify. I see her going down

every day. She was a very independent woman who lived by herself for close

to 20 years. Now she is terrified to be alone, very parnoid. She thinks they

! are making movies about her, bugging her room, monitoring her phone calls,

etc. She was able to get up and down from the chair and coach by herself,

but these last few days she has to have assistance. Her feet seem to

" freeze " when she tries to walk. We ask her to move her feet, but she says

she can't.

It is so troubling to see her go through this and not know what to do and

knowing the doctors know little as to what to do. The doctors thinks she is

probably mid-sage. I go see her most days twice a day and we have sitters

during the night. Every day there is something new going on. Today she was

complaining of legs and neck pain. She has just about quit eating. We have

to sit and encourage her to eat what she does. She has lost 18 pounds in

about three months.

Can anyone help us know where were are with this awlful disease or any

medication that seems to work. I know everyone is different. We want to keep

her out of the nursing home as long as possible, but I'm not sure how long

she will be able to stay at the assisted living.

Any help would be greatly appreciated.

Thanks

[Guest guest]

Sharron,

Thank you for your response. I know we serve a great big God and I know He can

do all things. Sometimes His purpose for our lives is hard to understand. But

the Bible says His ways are not our ways and I know He'll help me/us through

anything that life may throw at us. I will be praying for you and put you on

our Church prayer chain.

My Sister

My sister, 74 years of age, was diagnosed w/parkinson's severals ago and put

on meds for parkinson. A couple of years ago she started seeing people in

her house, seeing black lace around things especially curtains. She was

never afraid of these people but couldn't understand why they were in her

house. In November early one morning she left her home barefooted and walked

down the road about 1/2 mile before someone got to her. She was in the

hospital for approximately three weeks and was diagnosed with LBD. They have

taken her off all parkinson's meds because of the possibility of increasing

the hallucinations. She is now living in a very nice assisted living

facility. They have tried Seroquil, Risperdal, Ativan,Paxil and everything

works against her. They are now going to try Abilify. I see her going down

every day. She was a very independent woman who lived by herself for close

to 20 years. Now she is terrified to be alone, very parnoid. She thinks they

! are making movies about her, bugging her room, monitoring her phone calls,

etc. She was able to get up and down from the chair and coach by herself,

but these last few days she has to have assistance. Her feet seem to

" freeze " when she tries to walk. We ask her to move her feet, but she says

she can't.

It is so troubling to see her go through this and not know what to do and

knowing the doctors know little as to what to do. The doctors thinks she is

probably mid-sage. I go see her most days twice a day and we have sitters

during the night. Every day there is something new going on. Today she was

complaining of legs and neck pain. She has just about quit eating. We have

to sit and encourage her to eat what she does. She has lost 18 pounds in

about three months.

Can anyone help us know where were are with this awlful disease or any

medication that seems to work. I know everyone is different. We want to keep

her out of the nursing home as long as possible, but I'm not sure how long

she will be able to stay at the assisted living.

Any help would be greatly appreciated.

Thanks

[Guest guest]

Hi ,

I don't know if this was responded to yet, but regarding the tailbone, you might

want to check and see if there are any visible sores. If she is sitting a lot,

the tailbone often gets the most pressure, or whatever area the weight goes on

that the patient finds the most comfortable for them. These can easily turn

into bedsores. As to her pain in her legs, is it pain, or something more akin

to restless leg syndrome? The tingly sensation can sometimes be described as

pain due to even the inability to find the right word. I would make sure on

that score too.

Absolute best of luck to you!!

Lori

My Sister

My sister, 74 years of age, was diagnosed w/parkinson's severals ago and put

on meds for parkinson. A couple of years ago she started seeing people in

her house, seeing black lace around things especially curtains. She was

never afraid of these people but couldn't understand why they were in her

house. In November early one morning she left her home barefooted and walked

down the road about 1/2 mile before someone got to her. She was in the

hospital for approximately three weeks and was diagnosed with LBD. They have

taken her off all parkinson's meds because of the possibility of increasing

the hallucinations. She is now living in a very nice assisted living

facility. They have tried Seroquil, Risperdal, Ativan,Paxil and everything

works against her. They are now going to try Abilify. I see her going down

every day. She was a very independent woman who lived by herself for close

to 20 years. Now she is terrified to be alone, very parnoid. She thinks they

! are making movies about her, bugging her room, monitoring her phone calls,

etc. She was able to get up and down from the chair and coach by herself,

but these last few days she has to have assistance. Her feet seem to

" freeze " when she tries to walk. We ask her to move her feet, but she says

she can't.

It is so troubling to see her go through this and not know what to do and

knowing the doctors know little as to what to do. The doctors thinks she is

probably mid-sage. I go see her most days twice a day and we have sitters

during the night. Every day there is something new going on. Today she was

complaining of legs and neck pain. She has just about quit eating. We have

to sit and encourage her to eat what she does. She has lost 18 pounds in

about three months.

Can anyone help us know where were are with this awlful disease or any

medication that seems to work. I know everyone is different. We want to keep

her out of the nursing home as long as possible, but I'm not sure how long

she will be able to stay at the assisted living.

Any help would be greatly appreciated.

Thanks

[Guest guest]

Hi ,

You’re doing a great job of this!

I know that pain is a big part of this stuff – many people experience leg pain

and pain in other places. Treating it effectively without too much damage to

abilities to walk/eat/talk is the challenge, but pain management is something

that should be addressed and reassessed routinely. My mother in law complains

of leg pain, especially at night. There are also other areas she complains of

pain and it’s real hard to figure out. Compounding it is small pains can be

very big pains to her so I’ve been using a pain scale to help gauge if it’s

critical or not. A pain scale like 1-10, 10 being the worse pain ever

experienced, usually helps her rethink it and helps me know how to prioritize

it. Another helpful tool is a pain scale with faces – and many think this is

more effective for elderly. The faces go from happy to frowning to very unhappy

crying. It can be found online and printed out – maybe you could try and see

if this helps. My mil had multiple compression fractures in her spine from

osteoporosis and that might have changed where she feels pain in some cases.

Bladder infections she used to feel in her back but now in her upper leg – she

does not feel the pain like you and I would. Some days she is really fixated

on pain and hurting and everything hurts – if she drops something she yells

“ouchâ€! I’ve asked her if that hurt and sometimes she tells me it did

hurt (about a 4-5 on the pain scale) and sometimes she smiles and says “I

guess notâ€.

Medicines you list there are two with side effects that could be causing

trouble. I’m assuming the premarin is the vaginal ring form meant to help

keep things balanced and thus keep uti’s away? If it’s pill form there are

definite side effects to be considered. But you might also want to look at

these two pages from National Institute of Health on premarin (estrogen ring)

and also nitrofurantoin. You can also look up the anti-inflammatory and see

if there’s anything it could be contributing to as well. The nirtofurantoin

is concerning if she is not drinking enough fluids and that could lead to

decreased appetite, etc. <http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000640>

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000640

<http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000333>

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000333

Currently what we are using for my mil, on the advice of her neurologist and

blessing of the clinical pharmacist: 1 gram (2 extra strength) Tylenol every 6

hours and at night 1/5 to 1 hydrocodone at bedtime and if pain wakes her up

after 4 hours another dose. She was hollering about everything hurting for

weeks on end and finally we have a place where she is not, for now. She just

hollers that she wants to get up now J So the pain is managed for the time

being. I think the gram of Tylenol is a good place to start. I put it in

her pill pack and she gets it regardless so we avoid the peaks and valleys of

pain management. To be sure this stuff does come with a great amount of pain.

My mil does not like exercise or drinking her water etc. either. It can be a

real battle sometimes, even more so when she is sick. Having a new face do the

exercises with her helps when she is too familiar with me or the caregiver and

wants to push the issue. Like a two or three year old testing the limits

sometimes. One night recently when she wanted to get up I finally did get her

up and out of desperation we went to the kitchen and did ALL of her exercises

and walked around the house a lot – and she did them all with NO complaint,

not a hitch! Then she started to look sleepy so I put her back to bed and she

slept until morning. I do not want to make that a regular thing though! She

has been much more agreeable to exercise if her pain is well managed and I

don’t blame her. I hate exercising when I hurt too.

It sounds like you have a good place for her and what a relief that must be for

you all. We are rural as well, out in the woods of west county here where there

are few services. I have not found a place near us that I consider safe to

place her which is a big reason she’s here with us. You can tell you’re

rural when the RN for home care comes with her muck boots on and most of the

home health folks have 4wd. I was working out of the home here but my studio

was turned into my mil’s room and moved to a corner off the living room –

and now we have caregivers sleeping in there so my studio is on boxes stacked

against the wall. My husband and mil have a very close relationship and he’s

been caring for her since he was in his early 20’s – about 30 years!

Looking back we can both see signs of parkinson’s even way back then as she

was very unsteady on her feet, having many falls over the years. Also very

anxious all the time. I understand it’s really hard to do, to take someone

in especially if working and it is not for everyone. But the nice thing is it

does sound like your sister is in a good place and they are really putting in

effort to keep her there.

I would suggest running the tylenol by her doctor. Some neurologists are using

that as a pain management protocol. Another thing that has made a big

difference for my mil is vit d capsules. She was really deficient, as many

elderly are, so now is taking 4000 iu a day and they are little tiny capsules,

easy to swallow. What I noticed immediately is her mood changed, no more gloom

and doom and also she had more spunk. What a nice thing it was to see her

laugh and smile! Be sure to check with her doctor before trying it. She gets

a multivitamin (centrum silver) and calcium tablet, sinament 3x daily, crestor

for cholestoral, prilosec for acid refux and seraquel and melatonin at night.

Sometimes she gets tolerant of melatonin so we take a few days off then start

again. Sometimes I have to give her some trazadone if she is edgy and can’t

sleep, rough average every two nights.

The one thing I’ve come to know is true is it will always be different,

nothing stays the same for long, though we do go back to some “places†for

repeat visits. When we first tried seroquel she had such a hard time on it we

all decided (her doctor included) she should not have it. A year later in

desperation I asked to try it agan but this time titrating the dose upward which

means starting out at a very small amount and building up to a whole low dose.

This worked! The clinical pharmacist is who told me about titrating medicines

upward. Even the lowest starting dose can cause trouble but if it’s cut into

1/4s or 1/2s and then work up from there it often goes better. What she did

not tolerate before is now working and tolerated well. I’m told this

extreme sensitivity is also part of the deal with LBD.

The best caregivers I’ve found to date are women from Fiji who come here to

work doing caregiving. Some are just in it for the money and not really that

experienced however so there is still some screening and weeding out. I’ve

now two wonderful women part time who have been doing this late to end stage

dementia care for 15 and 20+ years. One has a tax id and the other an ssn

number and green card so taxes are on the up and up and also she can (and is)

signed up for In Home Support Services (IHSS) which comes through

Medical/Medicaid. They give us 290 hours a month, the highest for a patient who

needs “constant custodial careâ€. That’s enough that we can manage the

rest of it, either paying out of pocket or doing the work ourselves. We had to

wade through a more than a few caregivers before we found these two. I am now

looking at the possibility of renting a studio away from home and actually going

to work part time, we’ll see.

Hope I haven’t rambled on too much! Hope you find some solutions,

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of hibbittsjenn@...

Sent: Friday, January 28, 2011 7:28 AM

To: LBDcaregivers

Subject: Re: My Sister

Dorothy:

Thank you for your response. I try to stay up on her medications. She is on

medication for high blood pressure, cholesterol, perminin (sp?, horomone),

nitrofurtin to prevent UTIs, and a anti-inflammatory for arthritics. As of right

now she isn't on any antiphyosic meds. She does have frequent UTIs and they

check her often. She has physical therapy 3 days a week, but the last few days

she has been refusing it. She has never liked exercise even when she was

healthy.

Right now she cannot stand on her own. We are having to lift her to the wheel

chair to take her to the bathroom. The staff at the assisted living seem to be

very caring. As with any nursing facility, you have some that are more patient

and tolerant with patients that require more care. The director is an RN and

they also have an RN who is head of nursing. They have been working with us very

well to help make suggestions to the doctors. We are there several times a day,

so they know we keep close check on her. She only has one son and all of us

work. We thought about bringing her home and tyring to take care of her, but the

doctors advised against it. We live in a rural area and it is very difficult to

find people who will stay/sit will someone and someone you can trust and depend

on. We have people staying with her at night and that has been an ordeal just to

find people for that.

We don't know if what she is doing now is medication or part of the LBD. Her

neuro doctor said there are very few meds that work without side effects and he

just has to try to see what will help her. He and her primary doctor do

communicate about her condition. The next medicine they are going to try is

Abilify. One of the nurses said this worked on a patient in a nursing home that

had very similar symptoms. They didn't think it would, but it did.

She says she is in in constant pain with her legs and now complaining about her

tale bone. Does this type of pain go along with LBD?

I know God can work a miracle in her body and that is what I'm praying. However,

and I hate to use this term, but her mind has her in hell. She sees very little

relief other than maybe the short naps she takes. When she is awake ,she is

constantly wanting to know what time it is, who will be staying with her, " what

was that noise " , etc., then the same questions all over again.

Thanks

My Sister

My sister, 74 years of age, was diagnosed w/parkinson's severals ago and put

on meds for parkinson. A couple of years ago she started seeing people in

her house, seeing black lace around things especially curtains. She was

never afraid of these people but couldn't understand why they were in her

house. In November early one morning she left her home barefooted and walked

down the road about 1/2 mile before someone got to her. She was in the

hospital for approximately three weeks and was diagnosed with LBD. They have

taken her off all parkinson's meds because of the possibility of increasing

the hallucinations. She is now living in a very nice assisted living

facility. They have tried Seroquil, Risperdal, Ativan,Paxil and everything

works against her. They are now going to try Abilify. I see her going down

every day. She was a very independent woman who lived by herself for close

to 20 years. Now she is terrified to be alone, very parnoid. She thinks they

! are making movies about her, bugging her room, monitoring her phone calls,

etc. She was able to get up and down from the chair and coach by herself,

but these last few days she has to have assistance. Her feet seem to

" freeze " when she tries to walk. We ask her to move her feet, but she says

she can't.

It is so troubling to see her go through this and not know what to do and

knowing the doctors know little as to what to do. The doctors thinks she is

probably mid-sage. I go see her most days twice a day and we have sitters

during the night. Every day there is something new going on. Today she was

complaining of legs and neck pain. She has just about quit eating. We have

to sit and encourage her to eat what she does. She has lost 18 pounds in

about three months.

Can anyone help us know where were are with this awlful disease or any

medication that seems to work. I know everyone is different. We want to keep

her out of the nursing home as long as possible, but I'm not sure how long

she will be able to stay at the assisted living.

Any help would be greatly appreciated.

Thanks

[

[Guest guest]

jennifer,

 

orthostatic blood pressure is extremely common in lbd'ers.  this when the bp

drops when postions are changed,  for ex  from isitting to standing  to

walking  back to standing to sitting to laying. the bp drop suddenly and takes

a few minutes sto adjust itself correctily. the nurses yused to tell daddy to

take 3 ddp breaths,  smell the osres then blow out hte cndles 3 times before he

continuted.  these good breaths helps his body have time to adjust to teh

changes.  i tinkn thaththis is lbd related, i have the same issues. 

 

potassium can be related to a UTI, you siad she is abmomrlaly aggressive so that

could be causing that. i have to take a lot of extra potassium daily to keep my

level up i have chronic bladder/kidney issues. 

 

hope this info helps hugs. sharon

n Mon, 1/31/11, hibbittsjenn@... wrote:

Subject: Re: My Sister

To: LBDcaregivers

Date: Monday, January 31, 2011, 9:35 AM

 

It's me again with another question. This past week the nurses at the assisted

living thought my sister was having mini seizures. When they would stand her up,

she would stiffen, lock her jaws, look with a blank stare and when she would

speak it would be all mumbled. We took her to the ER and the Doctor said he

thought it was a drop in blood pressure rather than seizures. Because when they

laid her down she would be better. She was a little dehydrated and her potassium

was a little low. They stopped the Zocar med. for a while, decreased her Laxis

and increased her potassium. . She is in constant pain and has now become a

little aggressive with us. This is totally out of character for her. I don't

know if it is the pain; a stage in the disease or a combination. Has anyone else

experienced this? In the ER the doctor gave her a low dose of Loretab for pain

and I was concerned what it may do to her, but it didn't phase her!!

My Sister

My sister, 74 years of age, was diagnosed w/parkinson's severals ago and put

on meds for parkinson. A couple of years ago she started seeing people in

her house, seeing black lace around things especially curtains. She was

never afraid of these people but couldn't understand why they were in her

house. In November early one morning she left her home barefooted and walked

down the road about 1/2 mile before someone got to her. She was in the

hospital for approximately three weeks and was diagnosed with LBD. They have

taken her off all parkinson's meds because of the possibility of increasing

the hallucinations. She is now living in a very nice assisted living

facility. They have tried Seroquil, Risperdal, Ativan,Paxil and everything

works against her. They are now going to try Abilify. I see her going down

every day. She was a very independent woman who lived by herself for close

to 20 years. Now she is terrified to be alone, very parnoid. She thinks they

! are making movies about her, bugging her room, monitoring her phone calls,

etc. She was able to get up and down from the chair and coach by herself,

but these last few days she has to have assistance. Her feet seem to

" freeze " when she tries to walk. We ask her to move her feet, but she says

she can't.

It is so troubling to see her go through this and not know what to do and

knowing the doctors know little as to what to do. The doctors thinks she is

probably mid-sage. I go see her most days twice a day and we have sitters

during the night. Every day there is something new going on. Today she was

complaining of legs and neck pain. She has just about quit eating. We have

to sit and encourage her to eat what she does. She has lost 18 pounds in

about three months.

Can anyone help us know where were are with this awlful disease or any

medication that seems to work. I know everyone is different. We want to keep

her out of the nursing home as long as possible, but I'm not sure how long

she will be able to stay at the assisted living.

Any help would be greatly appreciated.

Thanks

[Guest guest]

Hi ...that could all be the LBD. Sometimes the LBD tightens the muscles

and then your sister would not be able to make her muscles work. It sounds like

something about getting her up might be stressful for her...do you think that

perhaps she would rather stay in bed?

The agression can also be part of the LBD...it is quite common.

>

>

> Subject: Re: My Sister

> To: LBDcaregivers

> Date: Friday, January 28, 2011, 9:27 AM

>

> Dorothy:

>

> Thank you for your response. I try to stay up on her medications. She is on

medication for high blood pressure, cholesterol, perminin (sp?, horomone),

nitrofurtin to prevent UTIs, and a anti-inflammatory for arthritics. As of right

now she isn't on any antiphyosic meds. She does have frequent UTIs and they

check her often. She has physical therapy 3 days a week, but the last few days

she has been refusing it. She has never liked exercise even when she was

healthy.

>

> Right now she cannot stand on her own. We are having to lift her to the wheel

chair to take her to the bathroom. The staff at the assisted living seem to be

very caring. As with any nursing facility, you have some that are more patient

and tolerant with patients that require more care. The director is an RN and

they also have an RN who is head of nursing. They have been working with us very

well to help make suggestions to the doctors. We are there several times a day,

so they know we keep close check on her. She only has one son and all of us

work. We thought about bringing her home and tyring to take care of her, but the

doctors advised against it. We live in a rural area and it is very difficult to

find people who will stay/sit will someone and someone you can trust and depend

on. We have people staying with her at night and that has been an ordeal just to

find people for that.

>

> We don't know if what she is doing now is medication or part of the LBD. Her

neuro doctor said there are very few meds that work without side effects and he

just has to try to see what will help her. He and her primary doctor do

communicate about her condition. The next medicine they are going to try is

Abilify. One of the nurses said this worked on a patient in a nursing home that

had very similar symptoms. They didn't think it would, but it did.

>

> She says she is in in constant pain with her legs and now complaining about

her tale bone. Does this type of pain go along with LBD?

>

> I know God can work a miracle in her body and that is what I'm praying.

However, and I hate to use this term, but her mind has her in hell. She sees

very little relief other than maybe the short naps she takes. When she is awake

,she is constantly wanting to know what time it is, who will be staying with

her, " what was that noise " , etc., then the same questions all over again.

>

> Thanks

>

>

>

> My Sister

>

> My sister, 74 years of age, was diagnosed w/parkinson's severals ago and put

> on meds for parkinson. A couple of years ago she started seeing people in

> her house, seeing black lace around things especially curtains. She was

> never afraid of these people but couldn't understand why they were in her

> house. In November early one morning she left her home barefooted and walked

> down the road about 1/2 mile before someone got to her. She was in the

> hospital for approximately three weeks and was diagnosed with LBD. They have

> taken her off all parkinson's meds because of the possibility of increasing

> the hallucinations. She is now living in a very nice assisted living

> facility. They have tried Seroquil, Risperdal, Ativan,Paxil and everything

> works against her. They are now going to try Abilify. I see her going down

> every day. She was a very independent woman who lived by herself for close

> to 20 years. Now she is terrified to be alone, very parnoid. She thinks they

> ! are making movies about her, bugging her room, monitoring her phone calls,

> etc. She was able to get up and down from the chair and coach by herself,

> but these last few days she has to have assistance. Her feet seem to

> " freeze " when she tries to walk. We ask her to move her feet, but she says

> she can't.

>

> It is so troubling to see her go through this and not know what to do and

> knowing the doctors know little as to what to do. The doctors thinks she is

> probably mid-sage. I go see her most days twice a day and we have sitters

> during the night. Every day there is something new going on. Today she was

> complaining of legs and neck pain. She has just about quit eating. We have

> to sit and encourage her to eat what she does. She has lost 18 pounds in

> about three months.

>

> Can anyone help us know where were are with this awlful disease or any

> medication that seems to work. I know everyone is different. We want to keep

> her out of the nursing home as long as possible, but I'm not sure how long

> she will be able to stay at the assisted living.

>

> Any help would be greatly appreciated.

>

> Thanks

>

>

>

>

[Guest guest]

,

The only thing that I can think to add to the other suggestions is the use of a

Lidocaine patch to her tail bone - it may help. And the use of ab abdominal

binder may when they get her up may have a

two fold benefit- one to support her back as well as help with the postural

hypotension.

Diane Carbo

www.aginghomehealthcare.com

www.dementiacaresecrets.com

> >

> > From: hibbittsjenn@ <hibbittsjenn@>

> > Subject: Re: My Sister

> > To: LBDcaregivers

> > Date: Friday, January 28, 2011, 9:27 AM

> >

> > Dorothy:

> >

> > Thank you for your response. I try to stay up on her medications. She is on

medication for high blood pressure, cholesterol, perminin (sp?, horomone),

nitrofurtin to prevent UTIs, and a anti-inflammatory for arthritics. As of right

now she isn't on any antiphyosic meds. She does have frequent UTIs and they

check her often. She has physical therapy 3 days a week, but the last few days

she has been refusing it. She has never liked exercise even when she was

healthy.

> >

> > Right now she cannot stand on her own. We are having to lift her to the

wheel chair to take her to the bathroom. The staff at the assisted living seem

to be very caring. As with any nursing facility, you have some that are more

patient and tolerant with patients that require more care. The director is an RN

and they also have an RN who is head of nursing. They have been working with us

very well to help make suggestions to the doctors. We are there several times a

day, so they know we keep close check on her. She only has one son and all of us

work. We thought about bringing her home and tyring to take care of her, but the

doctors advised against it. We live in a rural area and it is very difficult to

find people who will stay/sit will someone and someone you can trust and depend

on. We have people staying with her at night and that has been an ordeal just to

find people for that.

> >

> > We don't know if what she is doing now is medication or part of the LBD. Her

neuro doctor said there are very few meds that work without side effects and he

just has to try to see what will help her. He and her primary doctor do

communicate about her condition. The next medicine they are going to try is

Abilify. One of the nurses said this worked on a patient in a nursing home that

had very similar symptoms. They didn't think it would, but it did.

> >

> > She says she is in in constant pain with her legs and now complaining about

her tale bone. Does this type of pain go along with LBD?

> >

> > I know God can work a miracle in her body and that is what I'm praying.

However, and I hate to use this term, but her mind has her in hell. She sees

very little relief other than maybe the short naps she takes. When she is awake

,she is constantly wanting to know what time it is, who will be staying with

her, " what was that noise " , etc., then the same questions all over again.

> >

> > Thanks

> >

> >

> >

> > My Sister

> >

> > My sister, 74 years of age, was diagnosed w/parkinson's severals ago and put

> > on meds for parkinson. A couple of years ago she started seeing people in

> > her house, seeing black lace around things especially curtains. She was

> > never afraid of these people but couldn't understand why they were in her

> > house. In November early one morning she left her home barefooted and walked

> > down the road about 1/2 mile before someone got to her. She was in the

> > hospital for approximately three weeks and was diagnosed with LBD. They have

> > taken her off all parkinson's meds because of the possibility of increasing

> > the hallucinations. She is now living in a very nice assisted living

> > facility. They have tried Seroquil, Risperdal, Ativan,Paxil and everything

> > works against her. They are now going to try Abilify. I see her going down

> > every day. She was a very independent woman who lived by herself for close

> > to 20 years. Now she is terrified to be alone, very parnoid. She thinks they

> > ! are making movies about her, bugging her room, monitoring her phone calls,

> > etc. She was able to get up and down from the chair and coach by herself,

> > but these last few days she has to have assistance. Her feet seem to

> > " freeze " when she tries to walk. We ask her to move her feet, but she says

> > she can't.

> >

> > It is so troubling to see her go through this and not know what to do and

> > knowing the doctors know little as to what to do. The doctors thinks she is

> > probably mid-sage. I go see her most days twice a day and we have sitters

> > during the night. Every day there is something new going on. Today she was

> > complaining of legs and neck pain. She has just about quit eating. We have

> > to sit and encourage her to eat what she does. She has lost 18 pounds in

> > about three months.

> >

> > Can anyone help us know where were are with this awlful disease or any

> > medication that seems to work. I know everyone is different. We want to keep

> > her out of the nursing home as long as possible, but I'm not sure how long

> > she will be able to stay at the assisted living.

> >

> > Any help would be greatly appreciated.

> >

> > Thanks

> >

> >

> >

> >

[Guest guest]

In a message dated 2/1/2011 12:38:12 PM Eastern Standard Time,

dianecarbo@... writes:

This past week the nurses at the assisted living thought my sister was

having mini seizures. When they would stand her up, she would stiffen, lock

her jaws, look with a blank stare and when she would speak it would be all

mumbled. We took her to the ER

Sounds like dystonia ... which is a common reaction to neuroleptic

(antipsychotic) meds. The most successful tx for this is d/c of the offending

med

... and also PRN use of a common anticolinegic, ie cogentin or even

benedryl ... good luck, I think you'll see a a quick turn around