Re: Unfortunately I'm a new member to this group/

[Guest guest]

,

You asked a lot of very tough questions. Your mom will continue to be a very

special lady and there will be some wondeful moments. My first 50 cent opinion

would be to use vacation time, or family leave time, and spend a week or two of

your time with her in Wisconsin. My brother and sisters did that several times

a year to come back and share some Mom Time.

Perhaps your widely spread out family could also follow suit and give your

brother some- on site- respite in caregiver duties.

The -friends- consideration about her staying in Wisconsin, or moving to

California, I don't see as the big issue. As Lewy takes a bigger toll, friends'

visits become rare.

Part of LBD is that her - cognitive world- tends to shrink. Visits from even

dear friends tend to fall away.

Jumping down to my personal experience: For my mother, visits from the county

nurse, and the home health aid, were the only non family- outside visitors most

weeks. My mother was a much loved community leader. In better days, she

preformed caregiving to a number of others.

When she couldn't drive anylonger, I took her to her weekly quilting sessions

at the Church, until she decided that she couldn't. Then her church lady

friends made a few visits before deciding to just send a group greeting card

when they met.

There are two sides to the coin about a California move. Either you move her

now, while she understands, or wait until she doesn't understand as well, I

couldn't begin to guess what would be best for you and her. I don't think that

Lewy likes change. If, and when you move her to California, the change -of her

patterns- won't be a good factor with Lewy.

At age 77 my mom was driving herself to church and getting her own groceries.

She re-programmed the TV remote when my dad got it messed up. By 79, she had

trouble with The On/ Off and the TV's volume. After a while she mostly

preferred the TV just left on the weather channel.

For my mother, she got to the point of needing 24 hour / day care about a year

and a half before the end. But all along the road, I can remember bright

spots.

Dann

thezapps wrote:

My Mom (81) has been diagnosed with LBD this week. In a way it's a

relief, because now we know why she's having such extreme reactions to

medications and why one hour she seems her old self (Normal Mom) and the next

she is in La La land (Crazy Mom). Fortunately my brother took her to see a

neurologist at Marshfield Clinic in WI and he nailed it. He spent about 1 1/2

hours with my mom and brother. It was one of her Normal Mom periods and she

really seems to have understood what he told her. Currently she lives in senior

apartments and the Dr told them that she needs to get into a different

environment with more support.

I'm taking her this weekend to stay with my other brother in Arkansas for a

month or two. My sister-in-law is an RN but doesn't work, so she will be able to

work with her and a doctor on getting the best meds for her now. She just

started on Paxil and something to get her off of the sleeping meds the previous

Dr gave her. Any suggestions on finding Dr's to work with her? Now that the

diagnosis has been made, does she need to continue to be under the supervison of

a neurologist?

I imagine she will stay there as long as it works for them and then will

probably come live with me (the only daughter) in CA. Unfortunately I work 4

days a week full-time and we will need to have her in assisted living or have a

home care aid. I believe for now once her meds are balanced, she will probably

be able to spend part of the day alone, but I'll also be looking into Adult Day

Care centers and other options.

The problems really showed up about 4 months ago after she had been prescribed

some strong pain meds for arthritis. Currently the physical problems are tremors

and a shuffling gait. The mental are hallucinations, extreme dreams, extreme

anxiety, and fears. She recently looked forward to a Halloween party at her

apartments, but when she got there everyone looked like they were ghouls and she

thought they were dead and so she got scared and went back to her room. The next

day, she was back to normal and realized that her reaction was outrageous. I

think even she welcomes a diagnosis, because now she realizes that it's not

" only " a mental health issue, but has a real physical basis.

I'd really like some recommendations on what time of care worked best. Because

we (my family) is so geographically spread out, we are trying to determine if it

would be better to move her into a facility near her current home in WI, where

she still could be visited by friends, or if it would be better to move her out

to CA where the only people she will know will be my husband and I. My brother

in WI thinks it would be best because I'm her daughter and is closer to her than

anyone else. He is burnt out because he's been the primary one to deal with

things up to now. I'd really like to have her with me, but it's very possible

that in a couple of years from now when we retire that we will want to move out

of the area (Los Angeles). We'd take her with if she's alive, but I don't know

if that would even be an option to move her at that time.

Thanks for being here.

[Guest guest]

Hi ,

Sorry, to hear your mom was diagnosed with LBD and sorry you have to be here,

but this is the place you need to be. You will find a lot of information on LBD

and people that you can identify with in your mom's situations.

It is hard when the family is spread out, but I have read that many have said

here not to worry about the friends, because they will all disappear over time

as the disease progresses and this is so true, so don't depend on them to be

there for your mom.

My suggestion is; if you are going to move her to California, do it now while

she can still travel. It becomes worse as they progress into the disease and

have anxiety about traveling and delusions. They can start stuff on the plane

that you can't even imagine. It is too much for me to go into detail now, but I

have been there in the year 2000 and never brought my husband on a plane trip

again after that one trip. These days one can even be kicked off the plane

before it even takes off for bad behavior.

Many of the LOs (Loved Ones) have trouble with change and crowds of people

too, so before things get too settled for her and while she is still able to

travel get it all in order where she will be, because later is probably too

late. Jan

thezapps wrote:

My Mom (81) has been diagnosed with LBD this week. In a way it's a relief,

because now we know why she's having such extreme reactions to medications and

why one hour she seems her old self (Normal Mom) and the next she is in La La

land (Crazy Mom). Fortunately my brother took her to see a neurologist at

Marshfield Clinic in WI and he nailed it. He spent about 1 1/2 hours with my mom

and brother. It was one of her Normal Mom periods and she really seems to have

understood what he told her. Currently she lives in senior apartments and the Dr

told them that she needs to get into a different environment with more support.

I'm taking her this weekend to stay with my other brother in Arkansas for a

month or two. My sister-in-law is an RN but doesn't work, so she will be able to

work with her and a doctor on getting the best meds for her now. She just

started on Paxil and something to get her off of the sleeping meds the previous

Dr gave her. Any suggestions on finding Dr's to work with her? Now that the

diagnosis has been made, does she need to continue to be under the supervison of

a neurologist?

I imagine she will stay there as long as it works for them and then will

probably come live with me (the only daughter) in CA. Unfortunately I work 4

days a week full-time and we will need to have her in assisted living or have a

home care aid. I believe for now once her meds are balanced, she will probably

be able to spend part of the day alone, but I'll also be looking into Adult Day

Care centers and other options.

The problems really showed up about 4 months ago after she had been prescribed

some strong pain meds for arthritis. Currently the physical problems are tremors

and a shuffling gait. The mental are hallucinations, extreme dreams, extreme

anxiety, and fears. She recently looked forward to a Halloween party at her

apartments, but when she got there everyone looked like they were ghouls and she

thought they were dead and so she got scared and went back to her room. The next

day, she was back to normal and realized that her reaction was outrageous. I

think even she welcomes a diagnosis, because now she realizes that it's not

" only " a mental health issue, but has a real physical basis.

I'd really like some recommendations on what time of care worked best. Because

we (my family) is so geographically spread out, we are trying to determine if it

would be better to move her into a facility near her current home in WI, where

she still could be visited by friends, or if it would be better to move her out

to CA where the only people she will know will be my husband and I. My brother

in WI thinks it would be best because I'm her daughter and is closer to her than

anyone else. He is burnt out because he's been the primary one to deal with

things up to now. I'd really like to have her with me, but it's very possible

that in a couple of years from now when we retire that we will want to move out

of the area (Los Angeles). We'd take her with if she's alive, but I don't know

if that would even be an option to move her at that time.

Thanks for being here.

[Guest guest]

It seems like my Mom is really going down hill fast. Is this typical?

She's been living in a senior apartment for the last few years after

selling her house. In June, she flew down to join a group of family

that came in from around the country for our niece's graduation. She

seemed basically normal then. Maybe forgetting she already told you

something, but then who doesn't.

2 to 3 months ago, after taking some pain medicine for a month for her

arthritis, it started to hit the fan. The first symptoms were tremors.

She was given Zanax to take for the tremors and the increasing anxiety.

She seemed to get things under control and stopped the zanax. She then

had a treatment for her macular degeneration. The tremors and anxiety

started again. This was about 3 weeks ago. She has gotten to the point

now that she can't be alone, she has a lot of hallucinations / very

vivid dreams, she has extreme shaking, and lot's of anxiety. Based on

her neurologist's recommendation and her refusal to fly with me to AR,

we've decided that she will not be going to my brother's in AR, but

that I will be finding a nursing home for her when I get there Friday.

Yikes. From basically ok to a nursing home in two months. Is that

normal?

[Guest guest]

Hi ,

Not all (Loved Ones) LOs follow the downhill path that quickly and others do.

Many times it's the medications that they are given that help accelerate the

progression of LBD, if they are not given the proper meds. for LBD. Many doctors

do not understand the sensitivities of LBD to many medications. My husband was

given the pain pill, Perkoset, (Not sure of the spelling) after back surgery

when he was in the beginning phase of LBD, which I didn't know at the time and

it progressed his hallucinations, delusions, dementia into another phase level

of the disease. My husband now is on the pain medication, Vicadin, which he has

been on for years at a low dose and it has not caused him to have any reactions.

Also, anesthetics will accelerate the progression of the disease. What was the

treatment for the Macular Degeneration? There are only two anesthetics known to

be safe with LBD and they are: Versed and Propofal.

Lewy Body Dementia, which is the Lewy Body Disease that starts with dementia

and parkinsonism follows in a year or less is a faster progressing Lewy Body

Disease than PDD, which starts with Parkinsonism and slowly progresses in

several years to dementia and maybe several more years to death. They both have

similar symptoms as with all LBD, some have a few of the symptoms and some have

more symptoms. No two LBD people are exactly alike in all the symptoms and their

progression into the disease. There are no patterns of stages, as in Alzheimers

to follow.

I'm glad that you are putting your mother in a nh now, instead of moving her

all around.

Who will be near her to advocate for her and make sure that she is getting all

the right care? Once in a nh, you need to really keep an eye on that they are

not being sedated or overly medicated or sitting in wet diapers all day and

other things; like overlooked bed sores and UTIs (Urinary Tract Infections) or

Pneumonia. Sometimes the staff don't catch these things soon enough. Your mother

will really need someone that is able to advocate and keep a close eye on her

care. Also, is she eating and getting enough liquids. These things all need to

be watched for in a nh. I have my husband in a nh. The staff and people are

wonderful, but there is always something that they are not doing or doing that

is not acceptable or they are overlooking, so I have to always keep a close eye

out on my husband's proper care and well -being.

I am glad that you came to a decison. That is excellent! You did not

procrastinate. Your mother needs routine care and you did the right thing. There

really is no wrong or right, but you did the right thing for your situation.

Take care and stay strong............Jan

wrote:

It seems like my Mom is really going down hill fast. Is this typical?

She's been living in a senior apartment for the last few years after

selling her house. In June, she flew down to join a group of family

that came in from around the country for our niece's graduation. She

seemed basically normal then. Maybe forgetting she already told you

something, but then who doesn't.

2 to 3 months ago, after taking some pain medicine for a month for her

arthritis, it started to hit the fan. The first symptoms were tremors.

She was given Zanax to take for the tremors and the increasing anxiety.

She seemed to get things under control and stopped the zanax. She then

had a treatment for her macular degeneration. The tremors and anxiety

started again. This was about 3 weeks ago. She has gotten to the point

now that she can't be alone, she has a lot of hallucinations / very

vivid dreams, she has extreme shaking, and lot's of anxiety. Based on

her neurologist's recommendation and her refusal to fly with me to AR,

we've decided that she will not be going to my brother's in AR, but

that I will be finding a nursing home for her when I get there Friday.

Yikes. From basically ok to a nursing home in two months. Is that

normal?

Welcome to LBDcaregivers.

[Guest guest]

,

You do need to find out what other meds she is on. It sounds like your MDs don't

know she can't do meds.

The second thing you might check immediately is if she has a UTI. All that

takes is getting a urine sample. And they should be able to check it within 12

hours.

The other possibility is that she was worse off than you knew for a longer

period of time. They are good at covering it up. And yes, I know she sounded

fine,so did my Mom and when I hung around her I found out she wasn't all that

good.

Hope Jan infor and more encouragement will be helpful.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: Re: Unfortunately I'm a new member to this

group/

Hi ,

Not all (Loved Ones) LOs follow the downhill path that quickly and others do.

Many times it's the medications that they are given that help accelerate the

progression of LBD, if they are not given the proper meds. for LBD. Many doctors

do not understand the sensitivities of LBD to many medications. My husband was

given the pain pill, Perkoset, (Not sure of the spelling) after back surgery

when he was in the beginning phase of LBD, which I didn't know at the time and

it progressed his hallucinations, delusions, dementia into another phase level

of the disease. My husband now is on the pain medication, Vicadin, which he has

been on for years at a low dose and it has not caused him to have any reactions.

Also, anesthetics will accelerate the progression of the disease. What was the

treatment for the Macular Degeneration? There are only two anesthetics known to

be safe with LBD and they are: Versed and Propofal.

Lewy Body Dementia, which is the Lewy Body Disease that starts with dementia

and parkinsonism follows in a year or less is a faster progressing Lewy Body

Disease than PDD, which starts with Parkinsonism and slowly progresses in

several years to dementia and maybe several more years to death. They both have

similar symptoms as with all LBD, some have a few of the symptoms and some have

more symptoms. No two LBD people are exactly alike in all the symptoms and their

progression into the disease. There are no patterns of stages, as in Alzheimers

to follow.

I'm glad that you are putting your mother in a nh now, instead of moving her

all around.

Who will be near her to advocate for her and make sure that she is getting all

the right care? Once in a nh, you need to really keep an eye on that they are

not being sedated or overly medicated or sitting in wet diapers all day and

other things; like overlooked bed sores and UTIs (Urinary Tract Infections) or

Pneumonia. Sometimes the staff don't catch these things soon enough. Your mother

will really need someone that is able to advocate and keep a close eye on her

care. Also, is she eating and getting enough liquids. These things all need to

be watched for in a nh. I have my husband in a nh. The staff and people are

wonderful, but there is always something that they are not doing or doing that

is not acceptable or they are overlooking, so I have to always keep a close eye

out on my husband's proper care and well -being.

I am glad that you came to a decison. That is excellent! You did not

procrastinate. Your mother needs routine care and you did the right thing. There

really is no wrong or right, but you did the right thing for your situation.

Take care and stay strong............Jan

wrote:

It seems like my Mom is really going down hill fast. Is this typical?

She's been living in a senior apartment for the last few years after

selling her house. In June, she flew down to join a group of family

that came in from around the country for our niece's graduation. She

seemed basically normal then. Maybe forgetting she already told you

something, but then who doesn't.

2 to 3 months ago, after taking some pain medicine for a month for her

arthritis, it started to hit the fan. The first symptoms were tremors.

She was given Zanax to take for the tremors and the increasing anxiety.

She seemed to get things under control and stopped the zanax. She then

had a treatment for her macular degeneration. The tremors and anxiety

started again. This was about 3 weeks ago. She has gotten to the point

now that she can't be alone, she has a lot of hallucinations / very

vivid dreams, she has extreme shaking, and lot's of anxiety. Based on

her neurologist's recommendation and her refusal to fly with me to AR,

we've decided that she will not be going to my brother's in AR, but

that I will be finding a nursing home for her when I get there Friday.

Yikes. From basically ok to a nursing home in two months. Is that

normal?

Welcome to LBDcaregivers.

[Guest guest]

,

Your mention of Arthritis meds for Pain, raised a flag for me. Celebrex was

a medicine that appeared to cause lots of LEWY problems for my mom. She didn't

tollerate Celebrex, and it quickly seemed to make things worse. We discontinued

it after a few days. I think that there are lots of drugs that don't work well

with LBD: seem to make LEWY -worse- , including some that make the parkinsons'

symptoms -better-. When we figured this out, we limited the parkinson's drugs

and tried the lewy meds.

For me red flag went up, if the new medicine was NOT being tollerated, and the

doctor had to prescribe anti-nausia pills so that Mom could take the other new

pills. There will be a lot of pills, but this can become antagonistic: one

pill fighting the effects of other pills. In my opinion, less is better.

My aunt is big fan of alternative suppliments, foods and medicines. Mom

didn't believe in them, but was polite and considerate with her sister. I

loved my aunt because she would come and sit with my mom several hours a week,

so I could get some work done outside . One thing that my Aunt made that did

seem to work was the rheubarb sauce. It helped as a laxative.

Dann

wrote:

It seems like my Mom is really going down hill fast. Is this typical?

She's been living in a senior apartment for the last few years after

selling her house. In June, she flew down to join a group of family

that came in from around the country for our niece's graduation. She

seemed basically normal then. Maybe forgetting she already told you

something, but then who doesn't.

2 to 3 months ago, after taking some pain medicine for a month for her

arthritis, it started to hit the fan. The first symptoms were tremors.

She was given Zanax to take for the tremors and the increasing anxiety.

She seemed to get things under control and stopped the zanax. She then

had a treatment for her macular degeneration. The tremors and anxiety

started again. This was about 3 weeks ago. She has gotten to the point

now that she can't be alone, she has a lot of hallucinations / very

vivid dreams, she has extreme shaking, and lot's of anxiety. Based on

her neurologist's recommendation and her refusal to fly with me to AR,

we've decided that she will not be going to my brother's in AR, but

that I will be finding a nursing home for her when I get there Friday.

Yikes. From basically ok to a nursing home in two months. Is that

normal?

[Guest guest]

,

My Mother went from being fully functional with just a little memory loss to a

nursing

home in 2 months. It's like she dropped off the edge of a cliff. That was when

LBD was

diagnosed. She truly changed overnight. My Father and I could only handle her at

home for

2 months. She was so agitated and not sleeping at night that we had to put her

into a

nursing home and she went into the high care floor. In my Mother case there was

no

surgery, changed in medication, or anything other than maybe a little extra

stress that

could be said to cause her rapid change. I think she held it together as long as

she could.

After she was in the nursing home, the doctor referred us to a Geriatric

Psychiatrist. He

worked on her medication and she actually improved. She became much calmer and

due

to the Exelon and Namenda, her cognitive abilities improved. She has been fairly

stable for

the last 3 years. In the last few months, I have noticed a physical decline. We

now have her

in a Geri Chair (rolling recliner). We did have her in a Merry , but she

had stopped

walking and those are very uncomfortable for sitting. Since she has the Lewy

Lean many

days, a wheelchair just wasn't enough. Fortunately, we are still able to bring

her home for

the afternoon on weekends. She really enjoys taking a nap with my Father.

in Dallas

>

> It seems like my Mom is really going down hill fast. Is this typical?

> She's been living in a senior apartment for the last few years after

> selling her house. In June, she flew down to join a group of family

> that came in from around the country for our niece's graduation. She

> seemed basically normal then. Maybe forgetting she already told you

> something, but then who doesn't.

>

> 2 to 3 months ago, after taking some pain medicine for a month for her

> arthritis, it started to hit the fan. The first symptoms were tremors.

> She was given Zanax to take for the tremors and the increasing anxiety.

> She seemed to get things under control and stopped the zanax. She then

> had a treatment for her macular degeneration. The tremors and anxiety

> started again. This was about 3 weeks ago. She has gotten to the point

> now that she can't be alone, she has a lot of hallucinations / very

> vivid dreams, she has extreme shaking, and lot's of anxiety. Based on

> her neurologist's recommendation and her refusal to fly with me to AR,

> we've decided that she will not be going to my brother's in AR, but

> that I will be finding a nursing home for her when I get there Friday.

> Yikes. From basically ok to a nursing home in two months. Is that

> normal?

>

[Guest guest]

Downhill slides caused by other physical ailments/medication are very

normal. Dad's started about a year ago with a fall - no serious

injuries, but it was like a switch was thrown in his brain. Since we

thought it was Alzheimer's he was put on things like Ativan to curb

his agitation - which, with LBD, can have the opposite effect. It

wasn't until about 2 months ago that we got the new diagnosis of LBD

and they put him on Seroquel which seems to help when he'll agree to

take it.

Moves are difficult as well, and since we had to move him to a NH, the

downhill slide picked up speed. I'll send you an email about our

experience with NHs in the area.

Good luck!

Diane

>

> It seems like my Mom is really going down hill fast. Is this typical?

> She's been living in a senior apartment for the last few years after

> selling her house. In June, she flew down to join a group of family

> that came in from around the country for our niece's graduation. She

> seemed basically normal then. Maybe forgetting she already told you

> something, but then who doesn't.

>

> 2 to 3 months ago, after taking some pain medicine for a month for her

> arthritis, it started to hit the fan. The first symptoms were tremors.

> She was given Zanax to take for the tremors and the increasing anxiety.

> She seemed to get things under control and stopped the zanax. She then

> had a treatment for her macular degeneration. The tremors and anxiety

> started again. This was about 3 weeks ago. She has gotten to the point

> now that she can't be alone, she has a lot of hallucinations / very

> vivid dreams, she has extreme shaking, and lot's of anxiety. Based on

> her neurologist's recommendation and her refusal to fly with me to AR,

> we've decided that she will not be going to my brother's in AR, but

> that I will be finding a nursing home for her when I get there Friday.

> Yikes. From basically ok to a nursing home in two months. Is that

> normal?

>

[Guest guest]

,

I would hate to see your mother put into a nursing home before meds to deal with

her

symptoms are introduced. They can make a big difference in bringing her around

to a

more functional level, and to reach that level in a nh environment could be very

difficult, if,

in fact, she does not need nh care once they are introduced. Can you change the

scenario

somehow to keep her out of a nh until a doctor is found to meet her needs?

Family may

well have to pull together here and be creative in designing a management plan

that

involves all. Could the SIL you spoke of stay with her until her needs are

identified and

met? Just a thought.

, Oakville Ont.

Mother, age 92, died Aug. 12/06 after 13 year decline from PDD

>

> It seems like my Mom is really going down hill fast. Is this typical?

> She's been living in a senior apartment for the last few years after

> selling her house. In June, she flew down to join a group of family

> that came in from around the country for our niece's graduation. She

> seemed basically normal then. Maybe forgetting she already told you

> something, but then who doesn't.

>

> 2 to 3 months ago, after taking some pain medicine for a month for her

> arthritis, it started to hit the fan. The first symptoms were tremors.

> She was given Zanax to take for the tremors and the increasing anxiety.

> She seemed to get things under control and stopped the zanax. She then

> had a treatment for her macular degeneration. The tremors and anxiety

> started again. This was about 3 weeks ago. She has gotten to the point

> now that she can't be alone, she has a lot of hallucinations / very

> vivid dreams, she has extreme shaking, and lot's of anxiety. Based on

> her neurologist's recommendation and her refusal to fly with me to AR,

> we've decided that she will not be going to my brother's in AR, but

> that I will be finding a nursing home for her when I get there Friday.

> Yikes. From basically ok to a nursing home in two months. Is that

> normal?

>

[Guest guest]

Dear , Cyber hugs and many warm thoughts coming your way as you move

into the LBD journey with your mom. Donna and others who respond giving good

ideas, and please know you can always come here for suggestions, comfort and

caring. I've been needing a lot of that myself in the six months since my Mom's

dementia progressed quickly. She'd been extremely stable for 3 years, but after

a number of infections this summer and lots of medications, she has become so

sick.

My own suggestions about nursing homes (NHs) are based on my working for a

non-profit health organization which manages several of them, along with a

hospital. Research them. Stop by at different times of the day and night

unannounced. Most good ones will have a receptionist to ask who you are and if

they can help you. See what the place looks like, smells like and how the

residents appear. Ask family members coming in their impressions. In addition to

meeting with the marketing/admissions person, ask to meet the Nursing Director

and the person who would be in charge of staff working with your mom. If they

offer such services as therapy, activities or spiritual care, meet with those

staff people too. Find out how they work with doctors. If they have staff docs,

what are the specialties? Is there a gerontologist on staff? (And not just

someone they bring in once a month to see 30 people in 4 hours - warning!) What

is the NH's policy on hospitalizations: what prompts them,

what is the turnaround time, what hospital do they use, etc? If a NH is

unwilling to address every issue you raise, be wary. Good ones want you to be

satisfied, to know about their operation, and to feel comfortable with the care

they offer. We would do these things if moving into a new neighborhood or

deciding on a school for a child.

When you choose the place, ask to spend time with the charge nurse and lead

CNA; the activities folks; and social service people. Give them more than just

the 1-page history they want on your mom - tell them your expectations for her

care, and let them know you are always availaable for phone calls, etc. The

point is two-fold: you really do want them on your side, and appreciating their

professionalism and helping them understand your mom addresses that. You also

are signaling that you'll be watching carefully and expect quality service.

Knowing many staff means there's always someone you can call - on any shift -

to check on your mom informally as well as formally. If there are specifics

about her care, such as she must have meds at a certain time, make sure her MD

advises the DON/charge nurse directly. Whenever you want something even mildly

important done, have the MD order it by phone, follow-up to see that the order

was received, and ask for confirmation it's been

handled.

Even the best NH will fail some times. Becoming your mom's advocate is

vital. Donna's so right! Learn as much as you can about this disease and any

other health issues she has. Study her meds, what they do, their side effects

and how they interact. Get her the best MDs you can find - and make sure they

have privileges at the NH and will go there when needed. Make friends with

her/his nurse or whoever is the gatekeeper: you'll want to know someone who'll

give you access to the doc as needed. LBD can bring with it not just the

dementia, but other problems as well. Your choice of MD is truly key to the best

care possible for your mom. Someone experienced with all kinds of dementia, not

just Alzheimer's (because LBD is generally treated very differently than AD)

plus who knows the other health problems of older adults.

And if you are the key caregiver and advocate - even from a distance - make

sure everyone involved knows you are going to be monitoring and advocating.

We will all be thinking of you Friday and always. Please let us know how you -

and your mom - are doing. Come back whenever you can. Peace, Lin

Donna Mido wrote:

,

You do need to find out what other meds she is on. It sounds like your MDs don't

know she can't do meds.

The second thing you might check immediately is if she has a UTI. All that takes

is getting a urine sample. And they should be able to check it within 12 hours.

The other possibility is that she was worse off than you knew for a longer

period of time. They are good at covering it up. And yes, I know she sounded

fine,so did my Mom and when I hung around her I found out she wasn't all that

good.

Hope Jan infor and more encouragement will be helpful.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: Re: Unfortunately I'm a new member to this

group/

Hi ,

Not all (Loved Ones) LOs follow the downhill path that quickly and others do.

Many times it's the medications that they are given that help accelerate the

progression of LBD, if they are not given the proper meds. for LBD. Many doctors

do not understand the sensitivities of LBD to many medications. My husband was

given the pain pill, Perkoset, (Not sure of the spelling) after back surgery

when he was in the beginning phase of LBD, which I didn't know at the time and

it progressed his hallucinations, delusions, dementia into another phase level

of the disease. My husband now is on the pain medication, Vicadin, which he has

been on for years at a low dose and it has not caused him to have any reactions.

Also, anesthetics will accelerate the progression of the disease. What was the

treatment for the Macular Degeneration? There are only two anesthetics known to

be safe with LBD and they are: Versed and Propofal.

Lewy Body Dementia, which is the Lewy Body Disease that starts with dementia and

parkinsonism follows in a year or less is a faster progressing Lewy Body Disease

than PDD, which starts with Parkinsonism and slowly progresses in several years

to dementia and maybe several more years to death. They both have similar

symptoms as with all LBD, some have a few of the symptoms and some have more

symptoms. No two LBD people are exactly alike in all the symptoms and their

progression into the disease. There are no patterns of stages, as in Alzheimers

to follow.

I'm glad that you are putting your mother in a nh now, instead of moving her all

around.

Who will be near her to advocate for her and make sure that she is getting all

the right care? Once in a nh, you need to really keep an eye on that they are

not being sedated or overly medicated or sitting in wet diapers all day and

other things; like overlooked bed sores and UTIs (Urinary Tract Infections) or

Pneumonia. Sometimes the staff don't catch these things soon enough. Your mother

will really need someone that is able to advocate and keep a close eye on her

care. Also, is she eating and getting enough liquids. These things all need to

be watched for in a nh. I have my husband in a nh. The staff and people are

wonderful, but there is always something that they are not doing or doing that

is not acceptable or they are overlooking, so I have to always keep a close eye

out on my husband's proper care and well -being.

I am glad that you came to a decison. That is excellent! You did not

procrastinate. Your mother needs routine care and you did the right thing. There

really is no wrong or right, but you did the right thing for your situation.

Take care and stay strong............Jan

wrote:

It seems like my Mom is really going down hill fast. Is this typical?

She's been living in a senior apartment for the last few years after

selling her house. In June, she flew down to join a group of family

that came in from around the country for our niece's graduation. She

seemed basically normal then. Maybe forgetting she already told you

something, but then who doesn't.

2 to 3 months ago, after taking some pain medicine for a month for her

arthritis, it started to hit the fan. The first symptoms were tremors.

She was given Zanax to take for the tremors and the increasing anxiety.

She seemed to get things under control and stopped the zanax. She then

had a treatment for her macular degeneration. The tremors and anxiety

started again. This was about 3 weeks ago. She has gotten to the point

now that she can't be alone, she has a lot of hallucinations / very

vivid dreams, she has extreme shaking, and lot's of anxiety. Based on

her neurologist's recommendation and her refusal to fly with me to AR,

we've decided that she will not be going to my brother's in AR, but

that I will be finding a nursing home for her when I get there Friday.

Yikes. From basically ok to a nursing home in two months. Is that

normal?

Welcome to LBDcaregivers.

[Guest guest]

Lin,

What an awesome email. You are so informed and so great at listing what everyone

should know about NH. I am keeping this for further reference.

Thanks

Vallerie

[Guest guest]

Dear Vallerie, Thanks so much for your kind words. Now if I could just take

better care of my mom! Have been thinking of you and wondering how yours is

doing . . . how are the possible plans for respite care, home help, etc. coming?

Have a peace-filled Turkey Day.

Lin

Vallerie Edmonds wrote:

Lin,

What an awesome email. You are so informed and so great at listing what everyone

should know about NH. I am keeping this for further reference.

Thanks

Vallerie

[Guest guest]

-

Did she go again to see the neurologist in WI?

I completely agree with what has said. I think your mom needs

to see a geriatric psychiatrist or someone who is familiar with LBD

(or at least dementia) and has worked with different meds, so that

your mom can be given a good shot at stabilizing. Maybe she'll only

need to move into assisted living if you can get her on a

plateau. Where does she live? You said that she had seen a

neurologist at the Marshfield Clinic in WI. Can this neurologist

recommend a geriatric psychiatrist? Can your brother take her

regularly to see a doctor until her meds get straightened out?

I think you should look into nursing homes when you are in town. But

you should also look at assisted living centers.

How about driving her to Arkansas? How about driving her to Los

Angeles? Can family help with that?

Robin

>_______________________________________________________________________

>

>11b. Re: Unfortunately I'm a new member to this group/

> Posted by: " stimtimminss " stim@... stimtimminss

> Date: Tue Nov 21, 2006 3:35 pm ((PST))

> Digest Number 3369

>

>,

>I would hate to see your mother put into a nursing home before meds

>to deal with her

>symptoms are introduced. They can make a big difference in bringing

>her around to a

>more functional level, and to reach that level in a nh environment

>could be very difficult, if,

>in fact, she does not need nh care once they are introduced. Can

>you change the scenario

>somehow to keep her out of a nh until a doctor is found to meet her

>needs? Family may

>well have to pull together here and be creative in designing a

>management plan that

>involves all. Could the SIL you spoke of stay with her until her

>needs are identified and

>met? Just a thought.

>

>, Oakville Ont.

>

>Mother, age 92, died Aug. 12/06 after 13 year decline from PDD

>

>

> >

> > It seems like my Mom is really going down hill fast. Is this typical?

> > She's been living in a senior apartment for the last few years after

> > selling her house. In June, she flew down to join a group of family

> > that came in from around the country for our niece's graduation. She

> > seemed basically normal then. Maybe forgetting she already told you

> > something, but then who doesn't.

> >

> > 2 to 3 months ago, after taking some pain medicine for a month for her

> > arthritis, it started to hit the fan. The first symptoms were tremors.

> > She was given Zanax to take for the tremors and the increasing anxiety.

> > She seemed to get things under control and stopped the zanax. She then

> > had a treatment for her macular degeneration. The tremors and anxiety

> > started again. This was about 3 weeks ago. She has gotten to the point

> > now that she can't be alone, she has a lot of hallucinations / very

> > vivid dreams, she has extreme shaking, and lot's of anxiety. Based on

> > her neurologist's recommendation and her refusal to fly with me to AR,

> > we've decided that she will not be going to my brother's in AR, but

> > that I will be finding a nursing home for her when I get there Friday.

> > Yikes. From basically ok to a nursing home in two months. Is that

> > normal?

> >