Another Lewy Roller Coaster Ride

May 4, 2006

Last night I went to visit mom after work. I found that her sister

was there visiting too. Everyone on the floor was in high spirits now

that they have moved to the renovated dementia floor since Tuesday.

Mom was having a great night. I brought my latest project - a 3-ring

binder with these awesome 8x10 and 4x6 photos. Mom's sister and her

were reminiscing with the photos and mom was actually giggling!! Also

my sister arrived too - so the 4 of us had fun together. Many laughs.

Then, 10 minutes of getting in my front door - my Aunt (she's the

health care proxy - so she got the call) called to say that my mother

tried to get up and walk from her wheelchair and fell and cut her

head and she was sent to the emergency room. So...... took a cab to

the hospital she was to go to, then found out that she ended up

somewhere else so went to the 2nd hospital. Mom needed 7 staples -

very close to where her biopsy was. We were in that hospital until

2:30 AM. Almost the whole time that I was there, from 9'something to

2:30 mom was mostly awake. Most of this time she had that neck thing

on - even after the cat scan came back normal, they were hesitant to

take it off b/c they weren't sure if ligaments were damaged... And

mom wanted that thing off yesterday! Isn't it funny how close mom

gets herself back during a crisis. So many lucid moments - we prayed

the Our Father and Hail to get her mind off that neck brace -

and mom said those prayers word for word, without hesitation... They

wanted to give mom 1000mg of Tylenol - but b/c she's so sensitive I

requested a smaller amount and they gave her 500mg (keeping my

fingers crossed that that was OK). They had to give her a pain med on

the head before the staple gun - don't know what - but hopefully mom

won't react too badly... Mom's blood pressure was 200+ - extremely

high - they were going to give her a blood pressure med, but I don't

think they did. Makes me wonder again - why she doesn't get her blood

pressure med... They stood her up to make sure her legs were OK.

At 2:30 mom took another ambulance ride back to the NH and I went

home too. Will have to call the NH this AM to see how mom is doing...

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid decline from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

as weepy) and as of 4/21 on Exelon.

May 4, 2006

,

You may find your mom worse in the days to come with whatever swelling and

systemic

reaction to the stress take their toll. Hoping it's not too severe and she

rallies quickly!

You and Jan both had a very stressful night! How difficult for you.

>

> Last night I went to visit mom after work. I found that her sister

> was there visiting too. Everyone on the floor was in high spirits now

> that they have moved to the renovated dementia floor since Tuesday.

> Mom was having a great night. I brought my latest project - a 3-ring

> binder with these awesome 8x10 and 4x6 photos. Mom's sister and her

> were reminiscing with the photos and mom was actually giggling!! Also

> my sister arrived too - so the 4 of us had fun together. Many laughs.

>

> Then, 10 minutes of getting in my front door - my Aunt (she's the

> health care proxy - so she got the call) called to say that my mother

> tried to get up and walk from her wheelchair and fell and cut her

> head and she was sent to the emergency room. So...... took a cab to

> the hospital she was to go to, then found out that she ended up

> somewhere else so went to the 2nd hospital. Mom needed 7 staples -

> very close to where her biopsy was. We were in that hospital until

> 2:30 AM. Almost the whole time that I was there, from 9'something to

> 2:30 mom was mostly awake. Most of this time she had that neck thing

> on - even after the cat scan came back normal, they were hesitant to

> take it off b/c they weren't sure if ligaments were damaged... And

> mom wanted that thing off yesterday! Isn't it funny how close mom

> gets herself back during a crisis. So many lucid moments - we prayed

> the Our Father and Hail to get her mind off that neck brace -

> and mom said those prayers word for word, without hesitation... They

> wanted to give mom 1000mg of Tylenol - but b/c she's so sensitive I

> requested a smaller amount and they gave her 500mg (keeping my

> fingers crossed that that was OK). They had to give her a pain med on

> the head before the staple gun - don't know what - but hopefully mom

> won't react too badly... Mom's blood pressure was 200+ - extremely

> high - they were going to give her a blood pressure med, but I don't

> think they did. Makes me wonder again - why she doesn't get her blood

> pressure med... They stood her up to make sure her legs were OK.

>

> At 2:30 mom took another ambulance ride back to the NH and I went

> home too. Will have to call the NH this AM to see how mom is doing...

>

> ; loving daughter of Maureen of Boston, MA; finally diagnosed

> with LBD on 2/06 after also being diagnosed with everything from AD

> to Vascular Dementia caused by mini strokes to Binswengers...; was

> victim to rapid decline from Risperidone (or combination of

> Risperidone with other drugs OR possibly received another " bad drug "

> when she was observed/tested in a hospital in 10/05); in a NH since

> 11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

> as weepy) and as of 4/21 on Exelon.

>

May 4, 2006

HI ,

I hope your mom heals quickly and can be back to giggling soon. This

disease sure likes to keep us on our toes.

Courage

May 4, 2006

Hi

How sad that your wonderful evening turned out to be

yet, another roller coaster ride. I hope she is doing

better today. She will probably be exhausted from her

long night. I will keep you in my prayers. Dena

--- wrote:

> Last night I went to visit mom after work. I found

> that her sister

> was there visiting too. Everyone on the floor was in

> high spirits now

> that they have moved to the renovated dementia floor

> since Tuesday.

> Mom was having a great night. I brought my latest

> project - a 3-ring

> binder with these awesome 8x10 and 4x6 photos. Mom's

> sister and her

> were reminiscing with the photos and mom was

> actually giggling!! Also

> my sister arrived too - so the 4 of us had fun

> together. Many laughs.

>

> Then, 10 minutes of getting in my front door - my

> Aunt (she's the

> health care proxy - so she got the call) called to

> say that my mother

> tried to get up and walk from her wheelchair and

> fell and cut her

> head and she was sent to the emergency room.

> So...... took a cab to

> the hospital she was to go to, then found out that

> she ended up

> somewhere else so went to the 2nd hospital. Mom

> needed 7 staples -

> very close to where her biopsy was. We were in that

> hospital until

> 2:30 AM. Almost the whole time that I was there,

> from 9'something to

> 2:30 mom was mostly awake. Most of this time she had

> that neck thing

> on - even after the cat scan came back normal, they

> were hesitant to

> take it off b/c they weren't sure if ligaments were

> damaged... And

> mom wanted that thing off yesterday! Isn't it funny

> how close mom

> gets herself back during a crisis. So many lucid

> moments - we prayed

> the Our Father and Hail to get her mind off

> that neck brace -

> and mom said those prayers word for word, without

> hesitation... They

> wanted to give mom 1000mg of Tylenol - but b/c she's

> so sensitive I

> requested a smaller amount and they gave her 500mg

> (keeping my

> fingers crossed that that was OK). They had to give

> her a pain med on

> the head before the staple gun - don't know what -

> but hopefully mom

> won't react too badly... Mom's blood pressure was

> 200+ - extremely

> high - they were going to give her a blood pressure

> med, but I don't

> think they did. Makes me wonder again - why she

> doesn't get her blood

> pressure med... They stood her up to make sure her

> legs were OK.

>

> At 2:30 mom took another ambulance ride back to the

> NH and I went

> home too. Will have to call the NH this AM to see

> how mom is doing...

>

> ; loving daughter of Maureen of Boston, MA;

> finally diagnosed

> with LBD on 2/06 after also being diagnosed with

> everything from AD

> to Vascular Dementia caused by mini strokes to

> Binswengers...; was

> victim to rapid decline from Risperidone (or

> combination of

> Risperidone with other drugs OR possibly received

> another " bad drug "

> when she was observed/tested in a hospital in

> 10/05); in a NH since

> 11/05. Update: on antidepressant Celexa, 20mg (still

> teary, but not

> as weepy) and as of 4/21 on Exelon.

>

__________________________________________________

May 4, 2006

Hi

It's wonderful that the photos were such a success. You put so much

work into things that will help your mum. I'm so sorry that the

evening took such a turn for the worse later on. How is she today?

hugs

Áine

>

> > Last night I went to visit mom after work. I found

> > that her sister

> > was there visiting too. Everyone on the floor was in

> > high spirits now

> > that they have moved to the renovated dementia floor

> > since Tuesday.

> > Mom was having a great night. I brought my latest

> > project - a 3-ring

> > binder with these awesome 8x10 and 4x6 photos. Mom's

> > sister and her

> > were reminiscing with the photos and mom was

> > actually giggling!! Also

> > my sister arrived too - so the 4 of us had fun

> > together. Many laughs.

> >

> > Then, 10 minutes of getting in my front door - my

> > Aunt (she's the

> > health care proxy - so she got the call) called to

> > say that my mother

> > tried to get up and walk from her wheelchair and

> > fell and cut her

> > head and she was sent to the emergency room.

> > So...... took a cab to

> > the hospital she was to go to, then found out that

> > she ended up

> > somewhere else so went to the 2nd hospital. Mom

> > needed 7 staples -

> > very close to where her biopsy was. We were in that

> > hospital until

> > 2:30 AM. Almost the whole time that I was there,

> > from 9'something to

> > 2:30 mom was mostly awake. Most of this time she had

> > that neck thing

> > on - even after the cat scan came back normal, they

> > were hesitant to

> > take it off b/c they weren't sure if ligaments were

> > damaged... And

> > mom wanted that thing off yesterday! Isn't it funny

> > how close mom

> > gets herself back during a crisis. So many lucid

> > moments - we prayed

> > the Our Father and Hail to get her mind off

> > that neck brace -

> > and mom said those prayers word for word, without

> > hesitation... They

> > wanted to give mom 1000mg of Tylenol - but b/c she's

> > so sensitive I

> > requested a smaller amount and they gave her 500mg

> > (keeping my

> > fingers crossed that that was OK). They had to give

> > her a pain med on

> > the head before the staple gun - don't know what -

> > but hopefully mom

> > won't react too badly... Mom's blood pressure was

> > 200+ - extremely

> > high - they were going to give her a blood pressure

> > med, but I don't

> > think they did. Makes me wonder again - why she

> > doesn't get her blood

> > pressure med... They stood her up to make sure her

> > legs were OK.

> >

> > At 2:30 mom took another ambulance ride back to the

> > NH and I went

> > home too. Will have to call the NH this AM to see

> > how mom is doing...

> >

> > ; loving daughter of Maureen of Boston, MA;

> > finally diagnosed

> > with LBD on 2/06 after also being diagnosed with

> > everything from AD

> > to Vascular Dementia caused by mini strokes to

> > Binswengers...; was

> > victim to rapid decline from Risperidone (or

> > combination of

> > Risperidone with other drugs OR possibly received

> > another " bad drug "

> > when she was observed/tested in a hospital in

> > 10/05); in a NH since

> > 11/05. Update: on antidepressant Celexa, 20mg (still

> > teary, but not

> > as weepy) and as of 4/21 on Exelon.

> >

>

> __________________________________________________

>

May 7, 2006

,

How is your Mom's head doing? and how is she doing? and how are you doing? Lots

of questions but I lost how it was going with all the missed messages.

Hope it has calmed down a bit and she is resting well.

Hugs

Donna R

Do you want to read more about Lewy Body? You can also read the Thistle, the

LBD Newsletter. Just click on:

http://www.lewybodydementia.org

Another Lewy Roller Coaster Ride

May 7, 2006

Yeah - that was the message that got lost in cyberspace - the update -

I'll go ahead and copy/paste the email I sent to the family for THIS

family (LOL)

Brad (NH social worker) called me (Thursday AM) with a status updated:

* The accident happened in the Dining Room at 7:45 PM (about 20-25

minutes after my sister & I left). (NH resident) had went

over to mom to talk/visit (?) and mom was trying to get up, the two

collided heads and both fell down. Mom, of course, got the worst with

the cut to her head. The clip alarm was on mom. tends to be

a little intrusive at times.

* Brad is looking into that seat that was/is on mom's wheelchair to

see if it's still there (on it) - if not, will put back on, b/c it

makes it more difficult to get out of the wheelchair. This seat thing

was put on by PT for the purpose to keep mom safe in the wheelchair -

and I want to make sure that it's there. (it kind of blends into the

chair - so difficult to say if it was there or not myself)

* Brad is also looking into what mom was wearing - I'm thinking, with

that time frame, that it happened while mom was still in her regular

clothes (mom had a johnny on in the hospital) and if so, mom's chair

wasn't pushed up to the table upon our leaving - so that could have

been part of the cause. Not making excuses just trying to figure out

what can be done so that this doesn't happen again - and if it's

pushing the chair up to the table than that's a simple solution.

* Regarding my question about sending dementia patients alone to the

hospital. He did say that if it's an emergency they can't wait for

family to arrive so they get the resident to the hospital ASAP. If

it's not too much of an emergency, they wait for family members to

arrive to go with the patient. He did say if there's sufficient staff

on hand, that they do send a staff member with the patient - but at

times they cannot do this.

* Brad will talk with (Nurse Practioner) to get Haldol & Ativan

put onto mom's paperwork as a med. that she's allergic to.

* Brad talked with mom prior to the call and she said she's tired,

but OK.

And as of Thursday PM - mom was still doing OK. The nurse practioner

went in to check on mom and her cut. She updated mom's files to

include Haldol & Ativan as allergic meds.

I guess that's it...

---------------

Mom is doing OK - visited Friday and she was her usual self... When I

first saw her I asked how she was doing and she said she was scared -

I affirmed that the two of us had a scary night on Wednesday.

(thinking she was still feeling scared from her ordeal)

------

PS I also commented in the lost message that my sister is furious

this accident happened. I was upset too - but my sister is blaming

the NH staff for not doing their job. I on the other hand feel these

types of accidents can happen pretty darn fast with dementia

patients... It puts things on a damper when we don't see eye to eye

on situations. I feel mom gets great care at this NH; right now, my

sister does not feel the same way. Who knows who is right/wrong...

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid decline from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

as weepy) and as of 4/21 on Exelon.

>

> ,

>

> How is your Mom's head doing? and how is she doing? and how are you

doing? Lots of questions but I lost how it was going with all the

missed messages.

>

> Hope it has calmed down a bit and she is resting well.

>

> Hugs

>

> Donna R

>

> Do you want to read more about Lewy Body? You can also read the

Thistle, the LBD Newsletter. Just click on:

>

> http://www.lewybodydementia.org

>

> Another Lewy Roller Coaster Ride

>

May 7, 2006

BTW - today I'm going in with a Reminiscence Box - will let you know

how it goes. For this box I went to a sewing store and filled it with

crafts & sewing supplies. Found these great things called " Connect-It

Squares " Look here: http://www.sewbizfabrics.com/BN-8.shtml

(They also have " Button-It " and " Lace-It " - but didn't find those

myself) http://www.sewbizfabrics.com/BN-6.shtml

So, anyway, have two packets of " Connect-It Squares " , lace, cord,

ribbon, multi-color yarn, zippers, tassels, plastic knitting needles,

etc. in a photo box. I'm sure mom will enjoy just looking, touching and

feeling these items.

May 9, 2006

So... during my visit on Sunday I witnessed a delayed reaction by the

staff to a resident who stood up from his wheelchair and his clip-

alarm going off. It was very troubling to witness - it's as though

the staff no longer hears the alarm - they're so used to the sound.

There were about 9 staff members a short distance from the resident -

but none responded immediately when the alarm went off...

I went ahead and emailed the social worker my observations and wrote

that I hope the same thing didn't happen to my mother when she fell

and cut her head. Although I always fear retaliation towards my

mother when I say something negative - my mother is paying over

$11,000 a month and it bothers me that I'm put in a spot to have to

say something. (also had to complain about missing items of my

mother's (shoes, slippers, socks, dentures, comforter).

Here's hoping my email will be a wake up call the staff needed vs. a

cause of retaliation...

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid decline from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

as weepy) and as of 4/21 on Exelon.

>

> Yeah - that was the message that got lost in cyberspace - the

update -

> I'll go ahead and copy/paste the email I sent to the family for

THIS

> family (LOL)

>

> Brad (NH social worker) called me (Thursday AM) with a status

updated:

>

> * The accident happened in the Dining Room at 7:45 PM (about 20-25

> minutes after my sister & I left). (NH resident) had went

> over to mom to talk/visit (?) and mom was trying to get up, the two

> collided heads and both fell down. Mom, of course, got the worst

with

> the cut to her head. The clip alarm was on mom. tends to

be

> a little intrusive at times.

>

> * Brad is looking into that seat that was/is on mom's wheelchair to

> see if it's still there (on it) - if not, will put back on, b/c it

> makes it more difficult to get out of the wheelchair. This seat

thing

> was put on by PT for the purpose to keep mom safe in the

wheelchair -

> and I want to make sure that it's there. (it kind of blends into

the

> chair - so difficult to say if it was there or not myself)

>

> * Brad is also looking into what mom was wearing - I'm thinking,

with

> that time frame, that it happened while mom was still in her

regular

> clothes (mom had a johnny on in the hospital) and if so, mom's

chair

> wasn't pushed up to the table upon our leaving - so that could have

> been part of the cause. Not making excuses just trying to figure

out

> what can be done so that this doesn't happen again - and if it's

> pushing the chair up to the table than that's a simple solution.

>

> * Regarding my question about sending dementia patients alone to

the

> hospital. He did say that if it's an emergency they can't wait for

> family to arrive so they get the resident to the hospital ASAP. If

> it's not too much of an emergency, they wait for family members to

> arrive to go with the patient. He did say if there's sufficient

staff

> on hand, that they do send a staff member with the patient - but at

> times they cannot do this.

>

> * Brad will talk with (Nurse Practioner) to get Haldol &

Ativan

> put onto mom's paperwork as a med. that she's allergic to.

>

> * Brad talked with mom prior to the call and she said she's tired,

> but OK.

>

> And as of Thursday PM - mom was still doing OK. The nurse

practioner

> went in to check on mom and her cut. She updated mom's files to

> include Haldol & Ativan as allergic meds.

>

> I guess that's it...

>

> ---------------

>

> Mom is doing OK - visited Friday and she was her usual self... When

I

> first saw her I asked how she was doing and she said she was

scared -

> I affirmed that the two of us had a scary night on Wednesday.

> (thinking she was still feeling scared from her ordeal)

>

> ------

>

> PS I also commented in the lost message that my sister is furious

> this accident happened. I was upset too - but my sister is blaming

> the NH staff for not doing their job. I on the other hand feel

these

> types of accidents can happen pretty darn fast with dementia

> patients... It puts things on a damper when we don't see eye to eye

> on situations. I feel mom gets great care at this NH; right now, my

> sister does not feel the same way. Who knows who is right/wrong...

>

> ; loving daughter of Maureen of Boston, MA; finally

diagnosed

> with LBD on 2/06 after also being diagnosed with everything from AD

> to Vascular Dementia caused by mini strokes to Binswengers...; was

> victim to rapid decline from Risperidone (or combination of

> Risperidone with other drugs OR possibly received another " bad

drug "

> when she was observed/tested in a hospital in 10/05); in a NH since

> 11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

> as weepy) and as of 4/21 on Exelon.

>

May 9, 2006

, with your mother paying that kind of money every month, she should

have a whole private suite, with locked doors, and only staff should be

allowed in her room. All items should be accounted for, as in a hotel room.

There

is no excuse for what has happened.

(dream on Imogene, wake up to the real world)

Really though, I understand everyone using everyone else's clothes, and open

room policies, and semi room, if not whole wards, if the patients are on

Medicaid. Simply to save on money where possible. But, heavens alive, when

someone is paying the kind of outlay your mother has, she should at least have

a

private room, and lock on the door. And, her belongings should be respected

and accounted for. I do believe that! After all at over 360 a day, she is

paying a heap for very poor oversight of a facility. Especially when you had to

complain about a neglected patient.

Not good at all, I would say! My two cents worth.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism, and Frontal Lobe Disease with Apathy

In a message dated 5/9/2006 6:42:22 AM Central Daylight Time,

octoryrose@... writes:

So... during my visit on Sunday I witnessed a delayed reaction by the

staff to a resident who stood up from his wheelchair and his clip-

alarm going off. It was very troubling to witness - it's as though

the staff no longer hears the alarm - they're so used to the sound.

There were about 9 staff members a short distance from the resident -

but none responded immediately when the alarm went off...

I went ahead and emailed the social worker my observations and wrote

that I hope the same thing didn't happen to my mother when she fell

and cut her head. Although I always fear retaliation towards my

mother when I say something negative - my mother is paying over

$11,000 a month and it bothers me that I'm put in a spot to have to

say something. (also had to complain about missing items of my

mother's (shoes, slippers, socks, dentures, comforter).

Here's hoping my email will be a wake up call the staff needed vs. a

cause of retaliation...

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid decline from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

as weepy) and as of 4/21 on Exelon.

>

> Yeah - that was the message that got lost in cyberspace - the

update -

> I'll go ahead and copy/paste the email I sent to the family for

THIS

> family (LOL)

>

> Brad (NH social worker) called me (Thursday AM) with a status

updated:

>

> * The accident happened in the Dining Room at 7:45 PM (about 20-25

> minutes after my sister & I left). (NH resident) had went

> over to mom to talk/visit (?) and mom was trying to get up, the two

> collided heads and both fell down. Mom, of course, got the worst

with

> the cut to her head. The clip alarm was on mom. tends to

be

> a little intrusive at times.

>

> * Brad is looking into that seat that was/is on mom's wheelchair to

> see if it's still there (on it) - if not, will put back on, b/c it

> makes it more difficult to get out of the wheelchair. This seat

thing

> was put on by PT for the purpose to keep mom safe in the

wheelchair -

> and I want to make sure that it's there. (it kind of blends into

the

> chair - so difficult to say if it was there or not myself)

>

> * Brad is also looking into what mom was wearing - I'm thinking,

with

> that time frame, that it happened while mom was still in her

regular

> clothes (mom had a johnny on in the hospital) and if so, mom's

chair

> wasn't pushed up to the table upon our leaving - so that could have

> been part of the cause. Not making excuses just trying to figure

out

> what can be done so that this doesn't happen again - and if it's

> pushing the chair up to the table than that's a simple solution.

>

> * Regarding my question about sending dementia patients alone to

the

> hospital. He did say that if it's an emergency they can't wait for

> family to arrive so they get the resident to the hospital ASAP. If

> it's not too much of an emergency, they wait for family members to

> arrive to go with the patient. He did say if there's sufficient

staff

> on hand, that they do send a staff member with the patient - but at

> times they cannot do this.

>

> * Brad will talk with (Nurse Practioner) to get Haldol &

Ativan

> put onto mom's paperwork as a med. that she's allergic to.

>

> * Brad talked with mom prior to the call and she said she's tired,

> but OK.

>

> And as of Thursday PM - mom was still doing OK. The nurse

practioner

> went in to check on mom and her cut. She updated mom's files to

> include Haldol & Ativan as allergic meds.

>

> I guess that's it...

>

> ---------------

>

> Mom is doing OK - visited Friday and she was her usual self... When

I

> first saw her I asked how she was doing and she said she was

scared -

> I affirmed that the two of us had a scary night on Wednesday.

> (thinking she was still feeling scared from her ordeal)

>

> ------

>

> PS I also commented in the lost message that my sister is furious

> this accident happened. I was upset too - but my sister is blaming

> the NH staff for not doing their job. I on the other hand feel

these

> types of accidents can happen pretty darn fast with dementia

> patients... It puts things on a damper when we don't see eye to eye

> on situations. I feel mom gets great care at this NH; right now, my

> sister does not feel the same way. Who knows who is right/wrong...

>

> ; loving daughter of Maureen of Boston, MA; finally

diagnosed

> with LBD on 2/06 after also being diagnosed with everything from AD

> to Vascular Dementia caused by mini strokes to Binswengers...; was

> victim to rapid decline from Risperidone (or combination of

> Risperidone with other drugs OR possibly received another " bad

drug "

> when she was observed/tested in a hospital in 10/05); in a NH since

> 11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

> as weepy) and as of 4/21 on Exelon.

>

May 9, 2006

11,000 a month omg how outrageous. is this the ritz carlton or the biltmore

or something. i would definitely complain about and make waves, missing items,

unattended alarms, thats not good signs. i think you did right hon, hugs

sharon

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall

7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

---- wrote:

So... during my visit on Sunday I witnessed a delayed reaction by the

staff to a resident who stood up from his wheelchair and his clip-

alarm going off. It was very troubling to witness - it's as though

the staff no longer hears the alarm - they're so used to the sound.

There were about 9 staff members a short distance from the resident -

but none responded immediately when the alarm went off...

I went ahead and emailed the social worker my observations and wrote

that I hope the same thing didn't happen to my mother when she fell

and cut her head. Although I always fear retaliation towards my

mother when I say something negative - my mother is paying over

$11,000 a month and it bothers me that I'm put in a spot to have to

say something. (also had to complain about missing items of my

mother's (shoes, slippers, socks, dentures, comforter).

Here's hoping my email will be a wake up call the staff needed vs. a

cause of retaliation...

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid decline from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

as weepy) and as of 4/21 on Exelon.

>

> Yeah - that was the message that got lost in cyberspace - the

update -

> I'll go ahead and copy/paste the email I sent to the family for

THIS

> family (LOL)

>

> Brad (NH social worker) called me (Thursday AM) with a status

updated:

>

> * The accident happened in the Dining Room at 7:45 PM (about 20-25

> minutes after my sister & I left). (NH resident) had went

> over to mom to talk/visit (?) and mom was trying to get up, the two

> collided heads and both fell down. Mom, of course, got the worst

with

> the cut to her head. The clip alarm was on mom. tends to

be

> a little intrusive at times.

>

> * Brad is looking into that seat that was/is on mom's wheelchair to

> see if it's still there (on it) - if not, will put back on, b/c it

> makes it more difficult to get out of the wheelchair. This seat

thing

> was put on by PT for the purpose to keep mom safe in the

wheelchair -

> and I want to make sure that it's there. (it kind of blends into

the

> chair - so difficult to say if it was there or not myself)

>

> * Brad is also looking into what mom was wearing - I'm thinking,

with

> that time frame, that it happened while mom was still in her

regular

> clothes (mom had a johnny on in the hospital) and if so, mom's

chair

> wasn't pushed up to the table upon our leaving - so that could have

> been part of the cause. Not making excuses just trying to figure

out

> what can be done so that this doesn't happen again - and if it's

> pushing the chair up to the table than that's a simple solution.

>

> * Regarding my question about sending dementia patients alone to

the

> hospital. He did say that if it's an emergency they can't wait for

> family to arrive so they get the resident to the hospital ASAP. If

> it's not too much of an emergency, they wait for family members to

> arrive to go with the patient. He did say if there's sufficient

staff

> on hand, that they do send a staff member with the patient - but at

> times they cannot do this.

>

> * Brad will talk with (Nurse Practioner) to get Haldol &

Ativan

> put onto mom's paperwork as a med. that she's allergic to.

>

> * Brad talked with mom prior to the call and she said she's tired,

> but OK.

>

> And as of Thursday PM - mom was still doing OK. The nurse

practioner

> went in to check on mom and her cut. She updated mom's files to

> include Haldol & Ativan as allergic meds.

>

> I guess that's it...

>

> ---------------

>

> Mom is doing OK - visited Friday and she was her usual self... When

I

> first saw her I asked how she was doing and she said she was

scared -

> I affirmed that the two of us had a scary night on Wednesday.

> (thinking she was still feeling scared from her ordeal)

>

> ------

>

> PS I also commented in the lost message that my sister is furious

> this accident happened. I was upset too - but my sister is blaming

> the NH staff for not doing their job. I on the other hand feel

these

> types of accidents can happen pretty darn fast with dementia

> patients... It puts things on a damper when we don't see eye to eye

> on situations. I feel mom gets great care at this NH; right now, my

> sister does not feel the same way. Who knows who is right/wrong...

>

> ; loving daughter of Maureen of Boston, MA; finally

diagnosed

> with LBD on 2/06 after also being diagnosed with everything from AD

> to Vascular Dementia caused by mini strokes to Binswengers...; was

> victim to rapid decline from Risperidone (or combination of

> Risperidone with other drugs OR possibly received another " bad

drug "

> when she was observed/tested in a hospital in 10/05); in a NH since

> 11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

> as weepy) and as of 4/21 on Exelon.

>

Welcome to LBDcaregivers.

May 11, 2006

Feeling a little bit better after last night's visit:

* Mom's staples were removed yesterday, her cut is healing well.

* Mom's nurse approached me last night prior to my leaving to tell me

that she will be giving mom a shower (last night) now that her wound

is healing well (and wash her hair? - still lots of dried blood up

there). But she told me she was the one who was there with her in the

dining room. She expressed how " horrible " she felt that the accident

happened. How it happened so fast. She explained what happened -

which was pretty much what the social worker told me - but hearing it

from her mouth made me feel better. I sensed how much she cares about

my mom. She told me how much she missed my mother when mom had to go

down to the skilled-nursing floor right after the biopsy. She had

called in the evening from home to find out the status of my mom.

Also learned that mom's wheelchair was moved to the table - so now I

don't have to feel guilty for leaving mom's chair in the middle of

the room - which I kept thinking was one of the causes. I left

thinking that it was just a terrible accident that couldn't be

avoided and not neglect.

* Mom said to me: " You are a very sweet girl. And I love your hair

that way. " (just had my hair done a week ago) Always gives me a

rush when I hear something new, something special.

* Oh! And mom's comforter was found - my Aunt had brought it home to

clean. (she never brought anything home to clean before, so hadn't

thought of that situation... )

* During last night's dinner, mom asked for pizza. LOL. That'll be

her Mother's Day celebration lunch. Will bring in pepperoni pizza and

maybe an ice cream shake. If it's nice out we can eat outdoors on the

patio.

* Mom's Mother's Day gift arrived yesterday - it was a gift tower

from Harry & . It included a box of chocolate (always a hit), a

couple of pears (mom really enjoyed that treat) and a corsage (which

was kind of wasteful since she received it last night and not the

intended weekend - maybe her aide will notice it this AM and have her

wear it today...)

That's all. Just wanted to give you another update.

>

> So... during my visit on Sunday I witnessed a delayed reaction by

the

> staff to a resident who stood up from his wheelchair and his clip-

> alarm going off. It was very troubling to witness - it's as though

> the staff no longer hears the alarm - they're so used to the sound.

> There were about 9 staff members a short distance from the

resident -

> but none responded immediately when the alarm went off...

>

> I went ahead and emailed the social worker my observations and

wrote

> that I hope the same thing didn't happen to my mother when she fell

> and cut her head. Although I always fear retaliation towards my

> mother when I say something negative - my mother is paying over

> $11,000 a month and it bothers me that I'm put in a spot to have to

> say something. (also had to complain about missing items of my

> mother's (shoes, slippers, socks, dentures, comforter).

>

> Here's hoping my email will be a wake up call the staff needed vs.

a

> cause of retaliation...

>

> ; loving daughter of Maureen of Boston, MA; finally

diagnosed

> with LBD on 2/06 after also being diagnosed with everything from AD

> to Vascular Dementia caused by mini strokes to Binswengers...; was

> victim to rapid decline from Risperidone (or combination of

> Risperidone with other drugs OR possibly received another " bad

drug "

> when she was observed/tested in a hospital in 10/05); in a NH since

> 11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

> as weepy) and as of 4/21 on Exelon.

May 11, 2006

Hi ,

I was shocked when I read that your mom is paying 11,000 per month in a

nursing home. Even a private room here would not be anywhere near that much.

We even looked at a privately run NH and we were appalled that it would cost

4000. a month. Is this a normal rate for NH in Boston? Wow. Doris in Canada

Iward27663@... wrote:

, with your mother paying that kind of money every month, she should

have a whole private suite, with locked doors, and only staff should be

allowed in her room. All items should be accounted for, as in a hotel room.

There

is no excuse for what has happened.

(dream on Imogene, wake up to the real world)

Really though, I understand everyone using everyone else's clothes, and open

room policies, and semi room, if not whole wards, if the patients are on

Medicaid. Simply to save on money where possible. But, heavens alive, when

someone is paying the kind of outlay your mother has, she should at least have

a

private room, and lock on the door. And, her belongings should be respected

and accounted for. I do believe that! After all at over 360 a day, she is

paying a heap for very poor oversight of a facility. Especially when you had to

complain about a neglected patient.

Not good at all, I would say! My two cents worth.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism, and Frontal Lobe Disease with Apathy

In a message dated 5/9/2006 6:42:22 AM Central Daylight Time,

octoryrose@... writes:

So... during my visit on Sunday I witnessed a delayed reaction by the

staff to a resident who stood up from his wheelchair and his clip-

alarm going off. It was very troubling to witness - it's as though

the staff no longer hears the alarm - they're so used to the sound.

There were about 9 staff members a short distance from the resident -

but none responded immediately when the alarm went off...

I went ahead and emailed the social worker my observations and wrote

that I hope the same thing didn't happen to my mother when she fell

and cut her head. Although I always fear retaliation towards my

mother when I say something negative - my mother is paying over

$11,000 a month and it bothers me that I'm put in a spot to have to

say something. (also had to complain about missing items of my

mother's (shoes, slippers, socks, dentures, comforter).

Here's hoping my email will be a wake up call the staff needed vs. a

cause of retaliation...

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid decline from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

as weepy) and as of 4/21 on Exelon.

>

> Yeah - that was the message that got lost in cyberspace - the

update -

> I'll go ahead and copy/paste the email I sent to the family for

THIS

> family (LOL)

>

> Brad (NH social worker) called me (Thursday AM) with a status

updated:

>

> * The accident happened in the Dining Room at 7:45 PM (about 20-25

> minutes after my sister & I left). (NH resident) had went

> over to mom to talk/visit (?) and mom was trying to get up, the two

> collided heads and both fell down. Mom, of course, got the worst

with

> the cut to her head. The clip alarm was on mom. tends to

be

> a little intrusive at times.

>

> * Brad is looking into that seat that was/is on mom's wheelchair to

> see if it's still there (on it) - if not, will put back on, b/c it

> makes it more difficult to get out of the wheelchair. This seat

thing

> was put on by PT for the purpose to keep mom safe in the

wheelchair -

> and I want to make sure that it's there. (it kind of blends into

the

> chair - so difficult to say if it was there or not myself)

>

> * Brad is also looking into what mom was wearing - I'm thinking,

with

> that time frame, that it happened while mom was still in her

regular

> clothes (mom had a johnny on in the hospital) and if so, mom's

chair

> wasn't pushed up to the table upon our leaving - so that could have

> been part of the cause. Not making excuses just trying to figure

out

> what can be done so that this doesn't happen again - and if it's

> pushing the chair up to the table than that's a simple solution.

>

> * Regarding my question about sending dementia patients alone to

the

> hospital. He did say that if it's an emergency they can't wait for

> family to arrive so they get the resident to the hospital ASAP. If

> it's not too much of an emergency, they wait for family members to

> arrive to go with the patient. He did say if there's sufficient

staff

> on hand, that they do send a staff member with the patient - but at

> times they cannot do this.

>

> * Brad will talk with (Nurse Practioner) to get Haldol &

Ativan

> put onto mom's paperwork as a med. that she's allergic to.

>

> * Brad talked with mom prior to the call and she said she's tired,

> but OK.

>

> And as of Thursday PM - mom was still doing OK. The nurse

practioner

> went in to check on mom and her cut. She updated mom's files to

> include Haldol & Ativan as allergic meds.

>

> I guess that's it...

>

> ---------------

>

> Mom is doing OK - visited Friday and she was her usual self... When

I

> first saw her I asked how she was doing and she said she was

scared -

> I affirmed that the two of us had a scary night on Wednesday.

> (thinking she was still feeling scared from her ordeal)

>

> ------

>

> PS I also commented in the lost message that my sister is furious

> this accident happened. I was upset too - but my sister is blaming

> the NH staff for not doing their job. I on the other hand feel

these

> types of accidents can happen pretty darn fast with dementia

> patients... It puts things on a damper when we don't see eye to eye

> on situations. I feel mom gets great care at this NH; right now, my

> sister does not feel the same way. Who knows who is right/wrong...

>

> ; loving daughter of Maureen of Boston, MA; finally

diagnosed

> with LBD on 2/06 after also being diagnosed with everything from AD

> to Vascular Dementia caused by mini strokes to Binswengers...; was

> victim to rapid decline from Risperidone (or combination of

> Risperidone with other drugs OR possibly received another " bad

drug "

> when she was observed/tested in a hospital in 10/05); in a NH since

> 11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

> as weepy) and as of 4/21 on Exelon.

>

May 12, 2006

According to The MetLife Market Survey (2005) - Boston's nursing

home's average cost is $253 a day, low cost is $185 a day (wonder

where they are?), and high cost is $330. Mom pays $365 a day. When

mom went to this NH from the hospital we were thinking of sending her

to a different NH when it became evident that she would have to stay

in a NH. The other option was $279 a day. (We didn't look into ALL

the rates out there - now you have me curious.) We figured a savings

of $3000 a month going that route - but didn't move mom for a couple

of reasons: #1 we didn't want any more moves! Mom had moved 6x within

5 months, we felt we were making her confusion worse with all these

moves. #2 the 2nd choice was where my grandmother went - and mom was

her primary caregiver at the time and we felt that she would sense it

was the end vs. thinking that she is in a rehab spot. #3 I don't

drive, nor does my sister, so we need someplace that is available by

public transportation - this NH is perfect for that - it's directly

across the street from the subway station.

So, yes, it is higher than other NHs and it kills me to write that

check once a month, and we already know that this NH situation is

going to suck mom's savings dry, but overall she is getting wonderful

care. The patient/nurse ratio is higher than most other NHs (we were

certainly witness to that when she was at the dementia ALF where

there was far fewer staff and it led to mom not receiving the care

she needed and she was sent to the hospital). (yes... mom had to go

to the hospital from this NH too... but at least they got her to the

hospital, while the other place just left her in a wheelchair all

crimpled up not realizing that mom's situation was serious - I'm a

firm believer that mom would not be here today, had I not got her out

of there and into a hospital for the removal of all those bad meds

for mom)

Anyway - it's tough. And it's why I'm making sure that mom is treated

as a VIP while she's there! As all of them should be! Someone's

paying that enourmous rate, whether it's out of pocket or by the

state. This NH is jam packed full - I found out that they are no

longer in a position to accept new residents the regular route, only

those sent from hospitals.

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid decline from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

as weepy) and as of 4/21 on Exelon.

> >

> > Yeah - that was the message that got lost in cyberspace - the

> update -

> > I'll go ahead and copy/paste the email I sent to the family for

> THIS

> > family (LOL)

> >

> > Brad (NH social worker) called me (Thursday AM) with a status

> updated:

> >

> > * The accident happened in the Dining Room at 7:45 PM (about 20-

25

> > minutes after my sister & I left). (NH resident) had

went

> > over to mom to talk/visit (?) and mom was trying to get up, the

two

> > collided heads and both fell down. Mom, of course, got the worst

> with

> > the cut to her head. The clip alarm was on mom. tends

to

> be

> > a little intrusive at times.

> >

> > * Brad is looking into that seat that was/is on mom's wheelchair

to

> > see if it's still there (on it) - if not, will put back on, b/c

it

> > makes it more difficult to get out of the wheelchair. This seat

> thing

> > was put on by PT for the purpose to keep mom safe in the

> wheelchair -

> > and I want to make sure that it's there. (it kind of blends into

> the

> > chair - so difficult to say if it was there or not myself)

> >

> > * Brad is also looking into what mom was wearing - I'm thinking,

> with

> > that time frame, that it happened while mom was still in her

> regular

> > clothes (mom had a johnny on in the hospital) and if so, mom's

> chair

> > wasn't pushed up to the table upon our leaving - so that could

have

> > been part of the cause. Not making excuses just trying to figure

> out

> > what can be done so that this doesn't happen again - and if it's

> > pushing the chair up to the table than that's a simple solution.

> >

> > * Regarding my question about sending dementia patients alone to

> the

> > hospital. He did say that if it's an emergency they can't wait

for

> > family to arrive so they get the resident to the hospital ASAP.

If

> > it's not too much of an emergency, they wait for family members

to

> > arrive to go with the patient. He did say if there's sufficient

> staff

> > on hand, that they do send a staff member with the patient - but

at

> > times they cannot do this.

> >

> > * Brad will talk with (Nurse Practioner) to get Haldol &

> Ativan

> > put onto mom's paperwork as a med. that she's allergic to.

> >

> > * Brad talked with mom prior to the call and she said she's

tired,

> > but OK.

> >

> > And as of Thursday PM - mom was still doing OK. The nurse

> practioner

> > went in to check on mom and her cut. She updated mom's files to

> > include Haldol & Ativan as allergic meds.

> >

> > I guess that's it...

> >

> > ---------------

> >

> > Mom is doing OK - visited Friday and she was her usual self...

When

> I

> > first saw her I asked how she was doing and she said she was

> scared -

> > I affirmed that the two of us had a scary night on Wednesday.

> > (thinking she was still feeling scared from her ordeal)

> >

> > ------

> >

> > PS I also commented in the lost message that my sister is

furious

> > this accident happened. I was upset too - but my sister is

blaming

> > the NH staff for not doing their job. I on the other hand feel

> these

> > types of accidents can happen pretty darn fast with dementia

> > patients... It puts things on a damper when we don't see eye to

eye

> > on situations. I feel mom gets great care at this NH; right now,

my

> > sister does not feel the same way. Who knows who is

right/wrong...

> >

> > ; loving daughter of Maureen of Boston, MA; finally

> diagnosed

> > with LBD on 2/06 after also being diagnosed with everything from

AD

> > to Vascular Dementia caused by mini strokes to Binswengers...;

was

> > victim to rapid decline from Risperidone (or combination of

> > Risperidone with other drugs OR possibly received another " bad

> drug "

> > when she was observed/tested in a hospital in 10/05); in a NH

since

> > 11/05. Update: on antidepressant Celexa, 20mg (still teary, but

not

> > as weepy) and as of 4/21 on Exelon.

> >

>

May 19, 2006

Guess what I also found during my search? Consumer Reports

(consumerreports.org) has a nursing home watch list - and mom's current

nursing home is on this list! Gotta find out why... Do any of you

subscribe already to consumer reports and can get me a print out of the

list in Massachusetts?

Visiting today - and the report is suppose to be displayed - will see

if it is...

>

> So far, it looks like we unintentionally chose the most expensive NH

> on Earth... Thanks for the advice - it may come to this and doing so

> sooner rather than later is the best plan...

>

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