Very new to this

[Guest guest]

Hello All,

I will try to keep this as short as possible, although I could go on

for pages! My 81 year-old MIL was diagnosed just yesterday by her

neuro with LBD. We hired a live-in caregiver at the end of August,

after she spent several weeks in the hospital/rehab. She fell in

early August, and sat on the kitchen floor for several hours until my

husband, concerned because he couldn't get in touch with her, left

our vacation and went home to check on her. Before that, we had been

concerned that she was getting progressively more feeble. She has

lived alone for 19 years, since FIL died, and as she's not a sociable

person even with family, we saw her once a week or less. So my

thought is that we've missed a lot of symptoms that could have led to

a much earlier diagnosis. In the hospital and then rehab, she was

very disoriented, and my husband was told many times that she could

no longer live alone. Up until this time she seemed to be able to

take care of herself and her home, if not as meticulously as in the

past, and was always aware of her appointments and ready for me when

I picked her up to take her out.

Since coming home from rehab, she has declined at an alarming rate.

She has become incontinent, confused to the point of incoherence at

times, has trouble sleeping, is so weak that she can barely do the

simplest things, and seems to have no will to live. She has been

hallucinating. Yesterday the neuro took her off Aricept, which she

had been on since the hospital, because he believes it was

contributing to her confusion/hallucinations. As I said, I could go

on and on, but these are the basics, or at least what I can come up

with in my current sleep-deprived, emotionally exhausted state. Her

live-in is a wonderful, caring woman who is doing all she can for

her. Without her, MIL would not be able to stay in her own home. Our

house is not big enough to take her in, and even if we could, I'm

ashamed to say I do not have it in me to take full-time care of her.

I don't know exactly what I'm looking for from all of you, but I'd

appreciate some kind of feedback. We had never heard of LBD before

yesterday, and although we knew MIL had some form of dementia and

possibly Parkinson's, this is very overwhelming. I also feel her

disease is in the advanced stages and don't know what to expect in

the future.I've read some of the posts here, and it appears you are

all a caring, empathetic group.

Thank you,

Aberdeen NJ

[Guest guest]

>

> Hi ,

>

> There's a lot of information you need. Welcome. First off, it

> probably isn't the Aricept that made her hallucinate (although

> there's a possibility). Please tell us what other medications she is

> on. THIS IS VERY IMPORTANT. People with LBD are extremely sensitive

> to certain meds. One of our members, our wonderful , usually

> sends out a whole bunch of information to newcomers. As I don't see

> her email as yet, I'm taking the liberty to post it here. There is a

> lot of information. Please don't hesitate to ask any and all

> questions.

>

>

Thank you all for your kind words and warm welcome. I think an

important piece of information I left out of my first post is that MIL

is on no other prescription medications. I always told her she was the

only 80-year-old in the world who wasn't on any medications! The only

thing they gave her in the hospital was B-12 supplements, because

bloodwork indicated that she was deficient. The neuro prescribed it

again last week. Other than that, she takes Centrum Silver and Tylenol.

That's it. The neuro told my husband he does not want to put her on

anything right now because of the extreme sensitivity LBD patients have

to meds. I did read someone's post about melatonin for sleep. Has

anyone else has any experience with this? I'm also seriously

considering it for myself! She had new bloodwork done last week to

check for infection, among other things. No results yet.

We were planning to add a small apartment onto our house for MIL and a

caregiver, but with the developments of the past week or so, we're

wondering if we could have it completed in time. We're afraid she'll

either need to be in a nursing home or even be dead by the time we

could have it built. I find myself wondering if she'll even make it

until Christmas. As I said before, I suspect her condition is

considerably advanced.

One more thing (for now!). Her skin is frighteningly fragile. Last

week, she fell trying to get out of bed because she doesn't want

to " bother " her caregiver. She tore a four-inch gash in her arm when

she fell against her night table. Her skin reminds me of an overripe

peach: it seems to just pull away at the slightest touch, and she

bruises so easily. Has anyone else had this experience?

I'll stop now! I apologize for my overly long posts. There's just so

much to think about. Is there a stronger word than overwhelmed?

Thanks again for your concern,

Aberdeen, NJ

[Guest guest]

>

> Hi ,

>

> There's a lot of information you need. Welcome. First off, it

> probably isn't the Aricept that made her hallucinate (although

> there's a possibility). Please tell us what other medications she is

> on. THIS IS VERY IMPORTANT. People with LBD are extremely sensitive

> to certain meds. One of our members, our wonderful , usually

> sends out a whole bunch of information to newcomers. As I don't see

> her email as yet, I'm taking the liberty to post it here. There is a

> lot of information. Please don't hesitate to ask any and all

> questions.

>

>

Thank you all for your kind words and warm welcome. I think an

important piece of information I left out of my first post is that MIL

is on no other prescription medications. I always told her she was the

only 80-year-old in the world who wasn't on any medications! The only

thing they gave her in the hospital was B-12 supplements, because

bloodwork indicated that she was deficient. The neuro prescribed it

again last week. Other than that, she takes Centrum Silver and Tylenol.

That's it. The neuro told my husband he does not want to put her on

anything right now because of the extreme sensitivity LBD patients have

to meds. I did read someone's post about melatonin for sleep. Has

anyone else has any experience with this? I'm also seriously

considering it for myself! She had new bloodwork done last week to

check for infection, among other things. No results yet.

We were planning to add a small apartment onto our house for MIL and a

caregiver, but with the developments of the past week or so, we're

wondering if we could have it completed in time. We're afraid she'll

either need to be in a nursing home or even be dead by the time we

could have it built. I find myself wondering if she'll even make it

until Christmas. As I said before, I suspect her condition is

considerably advanced.

One more thing (for now!). Her skin is frighteningly fragile. Last

week, she fell trying to get out of bed because she doesn't want

to " bother " her caregiver. She tore a four-inch gash in her arm when

she fell against her night table. Her skin reminds me of an overripe

peach: it seems to just pull away at the slightest touch, and she

bruises so easily. Has anyone else had this experience?

I'll stop now! I apologize for my overly long posts. There's just so

much to think about. Is there a stronger word than overwhelmed?

Thanks again for your concern,

Aberdeen, NJ

[Guest guest]

Hi ,

I am the one who mentioned Melatonin. I used it with Mom. And now that she is

gone, I use it myself to try and get some rest. After 3 years of being up all

night, it is hard to get back to a regular routine.

What I like about it that it just helps me get to sleep, like a warm glass of

milk. It doesn't keep me asleep. And if I wake up to go to the bathroom, I am

not groggy or dizzy at all.

And I can take it some nights and not worry if I don't always take it.

Sometimes I just fall asleep and that is fine also.

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: Very new to this

>

> Hi ,

>

> There's a lot of information you need. Welcome. First off, it

> probably isn't the Aricept that made her hallucinate (although

> there's a possibility). Please tell us what other medications she is

> on. THIS IS VERY IMPORTANT. People with LBD are extremely sensitive

> to certain meds. One of our members, our wonderful , usually

> sends out a whole bunch of information to newcomers. As I don't see

> her email as yet, I'm taking the liberty to post it here. There is a

> lot of information. Please don't hesitate to ask any and all

> questions.

>

>

Thank you all for your kind words and warm welcome. I think an

important piece of information I left out of my first post is that MIL

is on no other prescription medications. I always told her she was the

only 80-year-old in the world who wasn't on any medications! The only

thing they gave her in the hospital was B-12 supplements, because

bloodwork indicated that she was deficient. The neuro prescribed it

again last week. Other than that, she takes Centrum Silver and Tylenol.

That's it. The neuro told my husband he does not want to put her on

anything right now because of the extreme sensitivity LBD patients have

to meds. I did read someone's post about melatonin for sleep. Has

anyone else has any experience with this? I'm also seriously

considering it for myself! She had new bloodwork done last week to

check for infection, among other things. No results yet.

We were planning to add a small apartment onto our house for MIL and a

caregiver, but with the developments of the past week or so, we're

wondering if we could have it completed in time. We're afraid she'll

either need to be in a nursing home or even be dead by the time we

could have it built. I find myself wondering if she'll even make it

until Christmas. As I said before, I suspect her condition is

considerably advanced.

One more thing (for now!). Her skin is frighteningly fragile. Last

week, she fell trying to get out of bed because she doesn't want

to " bother " her caregiver. She tore a four-inch gash in her arm when

she fell against her night table. Her skin reminds me of an overripe

peach: it seems to just pull away at the slightest touch, and she

bruises so easily. Has anyone else had this experience?

I'll stop now! I apologize for my overly long posts. There's just so

much to think about. Is there a stronger word than overwhelmed?

Thanks again for your concern,

Aberdeen, NJ

[Guest guest]

The skin does get very fragile in many of the elderly. You might

consider fish oil - my Mother is on that it helps the brain plus the

heart -also good for skin and hair. I give Mother 1 capsule a day. It

helps to take it with some food.

Sharon T

> >

> > Hi ,

> >

> > There's a lot of information you need. Welcome. First off, it

> > probably isn't the Aricept that made her hallucinate (although

> > there's a possibility). Please tell us what other medications

she is

> > on. THIS IS VERY IMPORTANT. People with LBD are extremely

sensitive

> > to certain meds. One of our members, our wonderful ,

usually

> > sends out a whole bunch of information to newcomers. As I don't

see

> > her email as yet, I'm taking the liberty to post it here. There

is a

> > lot of information. Please don't hesitate to ask any and all

> > questions.

> >

> >

>

> Thank you all for your kind words and warm welcome. I think an

> important piece of information I left out of my first post is that

MIL

> is on no other prescription medications. I always told her she was

the

> only 80-year-old in the world who wasn't on any medications! The

only

> thing they gave her in the hospital was B-12 supplements, because

> bloodwork indicated that she was deficient. The neuro prescribed it

> again last week. Other than that, she takes Centrum Silver and

Tylenol.

> That's it. The neuro told my husband he does not want to put her on

> anything right now because of the extreme sensitivity LBD patients

have

> to meds. I did read someone's post about melatonin for sleep. Has

> anyone else has any experience with this? I'm also seriously

> considering it for myself! She had new bloodwork done last week to

> check for infection, among other things. No results yet.

> We were planning to add a small apartment onto our house for MIL

and a

> caregiver, but with the developments of the past week or so, we're

> wondering if we could have it completed in time. We're afraid

she'll

> either need to be in a nursing home or even be dead by the time we

> could have it built. I find myself wondering if she'll even make it

> until Christmas. As I said before, I suspect her condition is

> considerably advanced.

> One more thing (for now!). Her skin is frighteningly fragile. Last

> week, she fell trying to get out of bed because she doesn't want

> to " bother " her caregiver. She tore a four-inch gash in her arm

when

> she fell against her night table. Her skin reminds me of an

overripe

> peach: it seems to just pull away at the slightest touch, and she

> bruises so easily. Has anyone else had this experience?

> I'll stop now! I apologize for my overly long posts. There's just

so

> much to think about. Is there a stronger word than overwhelmed?

> Thanks again for your concern,

>

> Aberdeen, NJ

>

>

>

>

>

[Guest guest]

>

> Hi ,

> I am the one who mentioned Melatonin. I used it with Mom. And now

that she is gone, I use it myself to try and get some rest. After 3

years of being up all night, it is hard to get back to a regular

routine.

>

> What I like about it that it just helps me get to sleep, like a

warm glass of milk. It doesn't keep me asleep. And if I wake up to

go to the bathroom, I am not groggy or dizzy at all.

>

> And I can take it some nights and not worry if I don't always take

it. Sometimes I just fall asleep and that is fine also.

>

> 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.

>

>

>

Donna,

Thanks for the info. I believe I may give it a try. Part of my

problem is I read the posts and explore the LBD info last thing at

night. Then all these thoughts are running through my head and I

can't get to sleep. I don't want to take anything that I may come to

depend on, so the melatonin sounds perfect.

Thanks again,

[Guest guest]

,

Thank you for the welcome and for all the information. I've been

touched by the concern complete strangers have shown for our family.

The first time I read your info, I just skimmed over the medication

warnings because MIL is not on any prescription meds. I just now

happened to look more closely and something caught my eye. MIL's live-

in has been giving her Tylenol PM to ease pain and help her sleep at

night (not that it seems to help). What symptoms can this cause if

she is taking it? She was hallucinating and not sleeping most of the

weekend. We'll take her off it, but what effects should we be looking

for?

Thanks for everything.

> >

> > Hello All,

> > I will try to keep this as short as possible, although I could go

> on

> > for pages! My 81 year-old MIL was diagnosed just yesterday by her

> > neuro with LBD. We hired a live-in caregiver at the end of

August,

> > after she spent several weeks in the hospital/rehab. She fell in

> > early August, and sat on the kitchen floor for several hours

until

> my

> > husband, concerned because he couldn't get in touch with her,

left

> > our vacation and went home to check on her. Before that, we had

> been

> > concerned that she was getting progressively more feeble. She has

> > lived alone for 19 years, since FIL died, and as she's not a

> sociable

> > person even with family, we saw her once a week or less. So my

> > thought is that we've missed a lot of symptoms that could have

led

> to

> > a much earlier diagnosis. In the hospital and then rehab, she was

> > very disoriented, and my husband was told many times that she

could

> > no longer live alone. Up until this time she seemed to be able to

> > take care of herself and her home, if not as meticulously as in

the

> > past, and was always aware of her appointments and ready for me

> when

> > I picked her up to take her out.

> > Since coming home from rehab, she has declined at an alarming

rate.

> > She has become incontinent, confused to the point of incoherence

at

> > times, has trouble sleeping, is so weak that she can barely do

the

> > simplest things, and seems to have no will to live. She has been

> > hallucinating. Yesterday the neuro took her off Aricept, which

she

> > had been on since the hospital, because he believes it was

> > contributing to her confusion/hallucinations. As I said, I could

go

> > on and on, but these are the basics, or at least what I can come

up

> > with in my current sleep-deprived, emotionally exhausted state.

Her

> > live-in is a wonderful, caring woman who is doing all she can for

> > her. Without her, MIL would not be able to stay in her own home.

> Our

> > house is not big enough to take her in, and even if we could, I'm

> > ashamed to say I do not have it in me to take full-time care of

her.

> > I don't know exactly what I'm looking for from all of you, but

I'd

> > appreciate some kind of feedback. We had never heard of LBD

before

> > yesterday, and although we knew MIL had some form of dementia and

> > possibly Parkinson's, this is very overwhelming. I also feel her

> > disease is in the advanced stages and don't know what to expect

in

> > the future.I've read some of the posts here, and it appears you

are

> > all a caring, empathetic group.

> > Thank you,

> >

> > Aberdeen NJ

> >

>

[Guest guest]

Hi ,

Sorry for the delay in posting but just wanted to say welcome to the

group. This is a wonderful forum with heaps of information and very

supportive people.

I'm sorry your Mom has LBD but it's great you're trying to educating

yourself. My Dad was diagnosed in April so this is still very new to

me but I have found a wealth of information on here.

Take care,

Holly

> >

> >

> > >

> > > Hello All,

> > > I will try to keep this as short as possible, although I could

go

> > on

> > > for pages! My 81 year-old MIL was diagnosed just yesterday by

her

> > > neuro with LBD. We hired a live-in caregiver at the end of

> August,

> > > after she spent several weeks in the hospital/rehab. She fell

in

> > > early August, and sat on the kitchen floor for several hours

> until

> > my

> > > husband, concerned because he couldn't get in touch with her,

> left

> > > our vacation and went home to check on her. Before that, we had

> > been

> > > concerned that she was getting progressively more feeble. She

has

> > > lived alone for 19 years, since FIL died, and as she's not a

> > sociable

> > > person even with family, we saw her once a week or less. So my

> > > thought is that we've missed a lot of symptoms that could have

> led

> > to

> > > a much earlier diagnosis. In the hospital and then rehab, she

was

> > > very disoriented, and my husband was told many times that she

> could

> > > no longer live alone. Up until this time she seemed to be able

to

> > > take care of herself and her home, if not as meticulously as in

> the

> > > past, and was always aware of her appointments and ready for me

> > when

> > > I picked her up to take her out.

> > > Since coming home from rehab, she has declined at an alarming

> rate.

> > > She has become incontinent, confused to the point of

incoherence

> at

> > > times, has trouble sleeping, is so weak that she can barely do

> the

> > > simplest things, and seems to have no will to live. She has

been

> > > hallucinating. Yesterday the neuro took her off Aricept, which

> she

> > > had been on since the hospital, because he believes it was

> > > contributing to her confusion/hallucinations. As I said, I

could

> go

> > > on and on, but these are the basics, or at least what I can

come

> up

> > > with in my current sleep-deprived, emotionally exhausted state.

> Her

> > > live-in is a wonderful, caring woman who is doing all she can

for

> > > her. Without her, MIL would not be able to stay in her own

home.

> > Our

> > > house is not big enough to take her in, and even if we could,

I'm

> > > ashamed to say I do not have it in me to take full-time care of

> her.

> > > I don't know exactly what I'm looking for from all of you, but

> I'd

> > > appreciate some kind of feedback. We had never heard of LBD

> before

> > > yesterday, and although we knew MIL had some form of dementia

and

> > > possibly Parkinson's, this is very overwhelming. I also feel

her

> > > disease is in the advanced stages and don't know what to expect

> in

> > > the future.I've read some of the posts here, and it appears you

> are

> > > all a caring, empathetic group.

> > > Thank you,

> > >

> > > Aberdeen NJ

> > >

> >

>

[Guest guest]

Hello ,

 

Welcome to the group. There is alot of good ppl here. I am sure that you will be

getting many reponses, so hold on. There is alot of information that this group

can give you. My mother was diagnosed in June/July. My mother had early signs of

ALZ. So I knew what to expect. I knew that I could handle all that my mother

could give me and had a plan. Then there is Lewy. Completely different beast. My

mother is in a NH and I did not want to place her there. The NH staff really do

not know how to handle her or her symptoms. Very hard for me and for her.

Although I did not want to place my moms in a NH I think that she is better

there than at home with just one caretaker. In a NH there are many people around

so that there is some sort of interaction. And if something does go wrong they

will take care of her. She is only 66. Do not feel ashamed if you feel that you

cannot take care of you MIL. Read as much as you can about the medication.

Medication can be

more damaging than you would think. Hope that helps you.

R

[Guest guest]

Rena,

It must be hard with your Mom as young as she is. This could be a long ride for

you. They are physically healthier at that age, and it sure makes it harder.

Have you been able to get anyone to listen to any of the information about LBD.?

When I put Mom in a nh, they didn't want to think I knew anything. Or else they

didn't want me to interrupt their schedules.

And you have that right Rena, meds are the biggest issue with our LOs.

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: Very new to this

Hello ,

�

Welcome to the group. There is alot of good ppl here. I am sure that you will be

getting many reponses, so hold on. There is alot of information that this group

can give you. My mother was diagnosed in June/July. My mother had early signs of

ALZ. So I knew what to expect. I knew that I could handle all that my mother

could give me and had a plan. Then there is Lewy. Completely different beast. My

mother is in a NH and I did not want to place her there.�The NH staff�really

do not know how to handle her or her symptoms. Very hard for me and for her.

Although I did not want to place my moms in a NH I think that she is better

there than at home with just one caretaker. In a NH there are many people around

so that there is some sort of interaction. And if something does go wrong they

will take care of her. She is only 66. Do not feel ashamed if you feel that you

cannot take care of you MIL. Read as much as you can about the medication.

Medication can be

more damaging than you would think. Hope that helps you.

R