Re: Cognition vs. Movement problems

September 11, 2008

Hello Donna,

Thanks for the support and for your input regarding Sinemet. This is

also my concern: that Sinemet can cause cognitive decline. The doses

are being titrated up (start with small dose and if tolerated, work

up to 3 tabs a day). As of September 9th, he had reached his max dose

and my sister who visits him regularly has reported that so far she

has not seen any cognitive decline, no delusions or hallucinations

and the movements are slightly better.

It is too early to tell, but she is watching for warning signs and

symptoms.

Let's keep our fingers crossed.

Big hug,

Shomy.

>

> Shomy,

>

> Sounds you really got a handle on things while you were in Canada

with your Dad.

>

> You talked about Sinamet and I think that is a PD drug. The only

thing I have heard repeatedly is that the dementia and Parkinson

drugs can fight each other. So there may need to be a careful watch

on his reaction to that drug. You seem to have gotten a balance on

his present drugs and the new one might cause problems if to much is

given.

>

> That is all I know that has been talked about.

>

> 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.

>

> Cognition vs. Movement problems

>

> Hello to all my dear friends at LBD Caregivers,

>

> As you may recall, I was in Toronto for a whole month and am now

back

> in Italy. I'm sorry I couldn't write much from Toronto for a

variety

> of reasons (moving to a new house, changed our internet server,

very

> busy with Dad and other errands, etc...) But now, I can make a full

> report of the situation and hopefully get some feedback and advice

> from you.

>

> COGNITION: I noticed right away a great improvement in Dad's mental

> abilities and cognition. We think this is due to Exelon. He is

always

> coherent in his thoughts, never manifested any inappropriate

emotions

> or behaviour, etc. He still is very sleepy during the day and does

> not sleep at all during most of the nights. His speech is always

> coherent, however, his words get slurred sometimes and there have

> been episodes where he keeps saying that he has something to tell

me

> but cannot grasp at the idea that he wants to convey.

>

> His living conditions: as you recall, we were very concerned about

> him being on the locked dementia floor (in a private retirement

> home). In fact, he has become more withdrawn and uninterested in

his

> surroundings. He definitely suffers emtionally by being surrounded

> with severely impaired residents and the very fact that he is

> restricted to that floor. However, I found the staff on the

dementia

> floor to be much more caring and attentive than on other floors and

> there are also a much larger ratio of care-givers per resident on

> this floor. The hygiene issues were not as bad as I had thought

> however, on some days the smell of urine on that floor is

> perceptible.

>

> MOVEMENT PROBLEMS: Dad's movements have hugely deteriorated. This

was

> quite terrible to see: he still walks with his walker, but due to

his

> visuo-spatial dysfunctions, he goes off the paths or comes very

close

> to and bumps against objects, etc... His balance when sitting down

or

> getting up from chairs or his bed is terrible. Often when he has to

> move his feet to get close to a chair to sit down, you can actually

> see that he tries to move his feet but it's as if they are glued to

> the floor. On several occasions I have had to lift his foot off the

> ground and initiate the movement for him and then he is able to

> continue. In fact he has had several falls during August, one of

> which necessitated an ambulance trip to the ER and several X-rays:

> fortunately nothing was broken or fractured, but there was a huge

> bruise and a very large hematoma which is still being re-absorbed.

>

> DEPRESSION: We took Dad for his regular appointment with his

> cognitive neurologist (the one who had diagnosed LBD from the very

> first visit). They found that he was depressed and prescribed

Celexa

> (Citalopram) to be given to him with gradually increasing doses to

a

> maximum of 20mg per day. We have already seen an improvement in his

> mood and awareness since he has been on Celexa.

>

> SINEMET: The doctors also decided that due to his increasing

> incidents of falls, it was now time to address the movement

problems:

> they prescribed Sinement 100/25 tablets. These tabs were to start

two

> weeks after the start of Celexa and the dose is as follows: 1 tab a

> day for 3 days and if tolerated, 2 tabs a day for the next 3 days

and

> if still well-tolerated, 3 tabs a day and maintain at 3 tabs a day.

> He is still taking 4.5mg of Exelon twice a day (9 mg total daily).

We

> hope to see an improvement in his movement problems but worry that

> the Sinement might trigger hallucinations and delusions and erratic

> behaviour. Although Dad had only two episodes of hallucinations

(more

> like vivid dreams) only in the beginning of his illness and never

> again, so maybe he's not prone to hallucinations. However, I am

> keeping my fingers crossed and hope that Sinemet will not worsen

his

> cognitive functioning.

>

> OTHER RESIDENCES: I had also compiled a list of other possible

> retirement homes and looked them up. They were all very good but

only

> one of them seemed to have the facilities to provide increasing

care

> suitable for Dad's increasing needs in the future. However we

> realized that Dad's current retirement home was still the best one

> around (and unfortunately the most expensive one too!) which could

> provide all levels of care. So we decided to bite the bullet and

keep

> Dad at his current facility, and try to reason with the directors

to

> give him more personlized care suitable for his particular

condition.

>

> MEETING WITH RETIREMENT HOME DIRECTORS AND STAFF: After several

> meetings with individual directors and staff, we had a meeting with

> the general manager of the retirement home and the director of care

> of his floor, during which we discussed the letter written by his

> cognitive neurologist who emphasized the fact that Dad's stay on a

> locked floor would damage him both emotionally and cognitively. We

> also discussed all other issues involved in his care and brought up

> all our concerns and complaints. We all agreed that due to his

recent

> falls and increasing disability, he does need the extra care given

on

> that floor, but they promised to take him down to the other floors

> and especially to the common areas indoors and outdoors so that he

> can benefit from mingling with more highly functioning residents

and

> participate in the planned activities. We also asked for the staff

to

> watch him when he tries to get up from a sitting position and make

> sure he doesn't fall. In general, we also feel that Dad can use the

> extra care given on the dementia floor, but he should not be

treated

> the same as residents who are totally cognitively impaired. Even

the

> directors agreed that Dad is definitely more mentally stable

> and " normal " than the other residents on that floor and his plan of

> care and activities should reflect this difference. We got their

> agreement and promise that they would organize Dad's days and

> evenings in such way as to allow him to move around the entire

> facility and participate in as many programs as possible, while

safe-

> guarding his physical safety and watching out for falls.

>

> New Problem: I noticed that on two occasions when I was with Dad,

he

> said that he wanted to go to the bathroom and got up to go. But in

> front of the toilet, he must have locked up and had great

difficulty

> pulling down his pants, etc... and unfortunately he lost bladder

> control and wet his pants. This happened only in the bathroom and

in

> my opinion it was mostly due to his movement difficulties

preventing

> him from getting to the toilet and taking down his pants fast

enough.

> He has not been incontinent on any other occasion and still goes to

> the bathroom by himself. However, I am already starting to look at

> adult diapers and incontinence products as a back-up plan,

especially

> for the times when he is outside the retirement home (either on

> outings, or when we take him out for lunch or to visit relatives

and

> friends). Our goal is to preserve his dignity as much as possible,

> especially avoiding situation in which he might feel embarassed in

> front of others.

>

> As usual, I count on my friends at this forum to provide me with

> further insight, advice and maybe words of encouragement on any of

> these issues. Your input and presence means the world to me and I

> thank each and everyone of you for your continuing help and

support.

>

> With much love,

> Shomy.

>

September 15, 2008

Dear Shomy -

Welcome back home and home here with us. I am so impressed with all you

accomplished during your visit to see your father. Hurrah - you got the MD's

letter. As I wrote at the time, these " doctor's orders " can be VERY helpful when

NH staff balk. You did eveything imaginable, addressed all the issues and got

cooperation on the key points you were concerned about. What a

terrific daughter!

Having the incontinence briefs on hand is wise - I'd bet you're right about your

dad's PD-type symptoms contributing to his accidents. My mom, too, " froze " and

we'd have to give verbal cues, even lift her feet, to get her moving. This kind

of cuing can be easily handled by staff at your dad's residence. If and when one

would be useful, there's a great walker available for folks with PD: it gives a

light-beam cue that prompts the brain to tell the feet to move. It's called the

In Step. " We got one for Mom and it helped a great deal while she was still

walking.

Good luck with the Sinemet. You're right, it can cause increased confusion,

hallucinations scary and mild, and agitation. But not for everyone, and dosages

can be adjusted in many ways.

Please keep us posted. Your dad and you are in my thoughts.

Lin

Subject: Re: Cognition vs. Movement problems

To: LBDcaregivers

Date: Thursday, September 11, 2008, 3:31 AM

Thank you for your warm words of encouragement. They mean a

lot to me because my sister and I always wonder if we are doing

everything right and if we have all the bases covered. We try to be

proactive and prepare for the future.

So your opinion as an experienced caregiver means a lot to me

With much love,

Shomy.

> >

> > Hello to all my dear friends at LBD Caregivers,

> >

> > As you may recall, I was in Toronto for a whole month and am now

back

> > in Italy. I'm sorry I couldn't write much from Toronto for a

variety

> > of reasons (moving to a new house, changed our internet server,

very

> > busy with Dad and other errands, etc...) But now, I can make a

full

> > report of the situation and hopefully get some feedback and

advice

> > from you.

> >

> > COGNITION: I noticed right away a great improvement in Dad's

mental

> > abilities and cognition. We think this is due to Exelon. He is

always

> > coherent in his thoughts, never manifested any inappropriate

emotions

> > or behaviour, etc. He still is very sleepy during the day and

does

> > not sleep at all during most of the nights. His speech is always

> > coherent, however, his words get slurred sometimes and there have

> > been episodes where he keeps saying that he has something to tell

me

> > but cannot grasp at the idea that he wants to convey.

> >

> > His living conditions: as you recall, we were very concerned

about

> > him being on the locked dementia floor (in a private retirement

> > home). In fact, he has become more withdrawn and uninterested in

his

> > surroundings. He definitely suffers emtionally by being

surrounded

> > with severely impaired residents and the very fact that he is

> > restricted to that floor. However, I found the staff on the

dementia

> > floor to be much more caring and attentive than on other floors

and

> > there are also a much larger ratio of care-givers per resident on

> > this floor. The hygiene issues were not as bad as I had thought

> > however, on some days the smell of urine on that floor is

> > perceptible.

> >

> > MOVEMENT PROBLEMS: Dad's movements have hugely deteriorated. This

was

> > quite terrible to see: he still walks with his walker, but due to

his

> > visuo-spatial dysfunctions, he goes off the paths or comes very

close

> > to and bumps against objects, etc... His balance when sitting

down or

> > getting up from chairs or his bed is terrible. Often when he has

to

> > move his feet to get close to a chair to sit down, you can

actually

> > see that he tries to move his feet but it's as if they are glued

to

> > the floor. On several occasions I have had to lift his foot off

the

> > ground and initiate the movement for him and then he is able to

> > continue. In fact he has had several falls during August, one of

> > which necessitated an ambulance trip to the ER and several X-

rays:

> > fortunately nothing was broken or fractured, but there was a huge

> > bruise and a very large hematoma which is still being re-

absorbed.

> >

> > DEPRESSION: We took Dad for his regular appointment with his

> > cognitive neurologist (the one who had diagnosed LBD from the

very

> > first visit). They found that he was depressed and prescribed

Celexa

> > (Citalopram) to be given to him with gradually increasing doses

to a

> > maximum of 20mg per day. We have already seen an improvement in

his

> > mood and awareness since he has been on Celexa.

> >

> > SINEMET: The doctors also decided that due to his increasing

> > incidents of falls, it was now time to address the movement

problems:

> > they prescribed Sinement 100/25 tablets. These tabs were to start

two

> > weeks after the start of Celexa and the dose is as follows: 1 tab

a

> > day for 3 days and if tolerated, 2 tabs a day for the next 3 days

and

> > if still well-tolerated, 3 tabs a day and maintain at 3 tabs a

day.

> > He is still taking 4.5mg of Exelon twice a day (9 mg total

daily). We

> > hope to see an improvement in his movement problems but worry

that

> > the Sinement might trigger hallucinations and delusions and

erratic

> > behaviour. Although Dad had only two episodes of hallucinations

(more

> > like vivid dreams) only in the beginning of his illness and never

> > again, so maybe he's not prone to hallucinations. However, I am

> > keeping my fingers crossed and hope that Sinemet will not worsen

his

> > cognitive functioning.

> >

> > OTHER RESIDENCES: I had also compiled a list of other possible

> > retirement homes and looked them up. They were all very good but

only

> > one of them seemed to have the facilities to provide increasing

care

> > suitable for Dad's increasing needs in the future. However we

> > realized that Dad's current retirement home was still the best

one

> > around (and unfortunately the most expensive one too!) which

could

> > provide all levels of care. So we decided to bite the bullet and

keep

> > Dad at his current facility, and try to reason with the directors

to

> > give him more personlized care suitable for his particular

condition.

> >

> > MEETING WITH RETIREMENT HOME DIRECTORS AND STAFF: After several

> > meetings with individual directors and staff, we had a meeting

with

> > the general manager of the retirement home and the director of

care

> > of his floor, during which we discussed the letter written by his

> > cognitive neurologist who emphasized the fact that Dad's stay on

a

> > locked floor would damage him both emotionally and cognitively.

We

> > also discussed all other issues involved in his care and brought

up

> > all our concerns and complaints. We all agreed that due to his

recent

> > falls and increasing disability, he does need the extra care

given on

> > that floor, but they promised to take him down to the other

floors

> > and especially to the common areas indoors and outdoors so that

he

> > can benefit from mingling with more highly functioning residents

and

> > participate in the planned activities. We also asked for the

staff to

> > watch him when he tries to get up from a sitting position and

make

> > sure he doesn't fall. In general, we also feel that Dad can use

the

> > extra care given on the dementia floor, but he should not be

treated

> > the same as residents who are totally cognitively impaired. Even

the

> > directors agreed that Dad is definitely more mentally stable

> > and " normal " than the other residents on that floor and his

plan

of

> > care and activities should reflect this difference. We got their

> > agreement and promise that they would organize Dad's days and

> > evenings in such way as to allow him to move around the entire

> > facility and participate in as many programs as possible, while

safe-

> > guarding his physical safety and watching out for falls.

> >

> > New Problem: I noticed that on two occasions when I was with Dad,

he

> > said that he wanted to go to the bathroom and got up to go. But

in

> > front of the toilet, he must have locked up and had great

difficulty

> > pulling down his pants, etc... and unfortunately he lost bladder

> > control and wet his pants. This happened only in the bathroom and

in

> > my opinion it was mostly due to his movement difficulties

preventing

> > him from getting to the toilet and taking down his pants fast

enough.

> > He has not been incontinent on any other occasion and still goes

to

> > the bathroom by himself. However, I am already starting to look

at

> > adult diapers and incontinence products as a back-up plan,

especially

> > for the times when he is outside the retirement home (either on

> > outings, or when we take him out for lunch or to visit relatives

and

> > friends). Our goal is to preserve his dignity as much as

possible,

> > especially avoiding situation in which he might feel embarassed

in

> > front of others.

> >

> > As usual, I count on my friends at this forum to provide me with

> > further insight, advice and maybe words of encouragement on any

of

> > these issues. Your input and presence means the world to me and I

> > thank each and everyone of you for your continuing help and

support.

> >

> > With much love,

> > Shomy.

> >

>

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

Welcome to LBDcaregivers.

September 15, 2008

Lin, your mention of cueing when a LO has a frozen episode when walking reminded

me

that if I tapped Mom's thigh, on the side that needed to go forward, it helped.

> > >

> > > Hello to all my dear friends at LBD Caregivers,

> > >

> > > As you may recall, I was in Toronto for a whole month and am now

> back

> > > in Italy. I'm sorry I couldn't write much from Toronto for a

> variety

> > > of reasons (moving to a new house, changed our internet server,

> very

> > > busy with Dad and other errands, etc...) But now, I can make a

> full

> > > report of the situation and hopefully get some feedback and

> advice

> > > from you.

> > >

> > > COGNITION: I noticed right away a great improvement in Dad's

> mental

> > > abilities and cognition. We think this is due to Exelon. He is

> always

> > > coherent in his thoughts, never manifested any inappropriate

> emotions

> > > or behaviour, etc. He still is very sleepy during the day and

> does

> > > not sleep at all during most of the nights. His speech is always

> > > coherent, however, his words get slurred sometimes and there have

> > > been episodes where he keeps saying that he has something to tell

> me

> > > but cannot grasp at the idea that he wants to convey.

> > >

> > > His living conditions: as you recall, we were very concerned

> about

> > > him being on the locked dementia floor (in a private retirement

> > > home). In fact, he has become more withdrawn and uninterested in

> his

> > > surroundings. He definitely suffers emtionally by being

> surrounded

> > > with severely impaired residents and the very fact that he is

> > > restricted to that floor. However, I found the staff on the

> dementia

> > > floor to be much more caring and attentive than on other floors

> and

> > > there are also a much larger ratio of care-givers per resident on

> > > this floor. The hygiene issues were not as bad as I had thought

> > > however, on some days the smell of urine on that floor is

> > > perceptible.

> > >

> > > MOVEMENT PROBLEMS: Dad's movements have hugely deteriorated. This

>

> was

> > > quite terrible to see: he still walks with his walker, but due to

> his

> > > visuo-spatial dysfunctions, he goes off the paths or comes very

> close

> > > to and bumps against objects, etc... His balance when sitting

> down or

> > > getting up from chairs or his bed is terrible. Often when he has

> to

> > > move his feet to get close to a chair to sit down, you can

> actually

> > > see that he tries to move his feet but it's as if they are glued

> to

> > > the floor. On several occasions I have had to lift his foot off

> the

> > > ground and initiate the movement for him and then he is able to

> > > continue. In fact he has had several falls during August, one of

> > > which necessitated an ambulance trip to the ER and several X-

> rays:

> > > fortunately nothing was broken or fractured, but there was a huge

> > > bruise and a very large hematoma which is still being re-

> absorbed.

> > >

> > > DEPRESSION: We took Dad for his regular appointment with his

> > > cognitive neurologist (the one who had diagnosed LBD from the

> very

> > > first visit). They found that he was depressed and prescribed

> Celexa

> > > (Citalopram) to be given to him with gradually increasing doses

> to a

> > > maximum of 20mg per day. We have already seen an improvement in

> his

> > > mood and awareness since he has been on Celexa.

> > >

> > > SINEMET: The doctors also decided that due to his increasing

> > > incidents of falls, it was now time to address the movement

> problems:

> > > they prescribed Sinement 100/25 tablets. These tabs were to start

> two

> > > weeks after the start of Celexa and the dose is as follows: 1 tab

> a

> > > day for 3 days and if tolerated, 2 tabs a day for the next 3 days

> and

> > > if still well-tolerated, 3 tabs a day and maintain at 3 tabs a

> day.

> > > He is still taking 4.5mg of Exelon twice a day (9 mg total

> daily). We

> > > hope to see an improvement in his movement problems but worry

> that

> > > the Sinement might trigger hallucinations and delusions and

> erratic

> > > behaviour. Although Dad had only two episodes of hallucinations

> (more

> > > like vivid dreams) only in the beginning of his illness and never

> > > again, so maybe he's not prone to hallucinations. However, I am

> > > keeping my fingers crossed and hope that Sinemet will not worsen

> his

> > > cognitive functioning.

> > >

> > > OTHER RESIDENCES: I had also compiled a list of other possible

> > > retirement homes and looked them up. They were all very good but

> only

> > > one of them seemed to have the facilities to provide increasing

> care

> > > suitable for Dad's increasing needs in the future. However we

> > > realized that Dad's current retirement home was still the best

> one

> > > around (and unfortunately the most expensive one too!) which

> could

> > > provide all levels of care. So we decided to bite the bullet and

> keep

> > > Dad at his current facility, and try to reason with the directors

> to

> > > give him more personlized care suitable for his particular

> condition.

> > >

> > > MEETING WITH RETIREMENT HOME DIRECTORS AND STAFF: After several

> > > meetings with individual directors and staff, we had a meeting

> with

> > > the general manager of the retirement home and the director of

> care

> > > of his floor, during which we discussed the letter written by his

> > > cognitive neurologist who emphasized the fact that Dad's stay on

> a

> > > locked floor would damage him both emotionally and cognitively.

> We

> > > also discussed all other issues involved in his care and brought

> up

> > > all our concerns and complaints. We all agreed that due to his

> recent

> > > falls and increasing disability, he does need the extra care

> given on

> > > that floor, but they promised to take him down to the other

> floors

> > > and especially to the common areas indoors and outdoors so that

> he

> > > can benefit from mingling with more highly functioning residents

> and

> > > participate in the planned activities. We also asked for the

> staff to

> > > watch him when he tries to get up from a sitting position and

> make

> > > sure he doesn't fall. In general, we also feel that Dad can use

> the

> > > extra care given on the dementia floor, but he should not be

> treated

> > > the same as residents who are totally cognitively impaired. Even

> the

> > > directors agreed that Dad is definitely more mentally stable

> > > and " normal " than the other residents on that floor and his

> plan

> of

> > > care and activities should reflect this difference. We got their

> > > agreement and promise that they would organize Dad's days and

> > > evenings in such way as to allow him to move around the entire

> > > facility and participate in as many programs as possible, while

> safe-

> > > guarding his physical safety and watching out for falls.

> > >

> > > New Problem: I noticed that on two occasions when I was with Dad,

> he

> > > said that he wanted to go to the bathroom and got up to go. But

> in

> > > front of the toilet, he must have locked up and had great

> difficulty

> > > pulling down his pants, etc... and unfortunately he lost bladder

> > > control and wet his pants. This happened only in the bathroom and

> in

> > > my opinion it was mostly due to his movement difficulties

> preventing

> > > him from getting to the toilet and taking down his pants fast

> enough.

> > > He has not been incontinent on any other occasion and still goes

> to

> > > the bathroom by himself. However, I am already starting to look

> at

> > > adult diapers and incontinence products as a back-up plan,

> especially

> > > for the times when he is outside the retirement home (either on

> > > outings, or when we take him out for lunch or to visit relatives

> and

> > > friends). Our goal is to preserve his dignity as much as

> possible,

> > > especially avoiding situation in which he might feel embarassed

> in

> > > front of others.

> > >

> > > As usual, I count on my friends at this forum to provide me with

> > > further insight, advice and maybe words of encouragement on any

> of

> > > these issues. Your input and presence means the world to me and I

> > > thank each and everyone of you for your continuing help and

> support.

> > >

> > > With much love,

> > > Shomy.

> > >

> >

>

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

>

> Welcome to LBDcaregivers.

>

September 15, 2008

sandra, that worked for daddy too, hugs. sharon

Subject: Re: Cognition vs. Movement problems

To: LBDcaregivers

Date: Monday, September 15, 2008, 5:23 PM

Lin, your mention of cueing when a LO has a frozen episode when walking reminded

me

that if I tapped Mom's thigh, on the side that needed to go forward, it helped.

> > >

> > > Hello to all my dear friends at LBD Caregivers,

> > >

> > > As you may recall, I was in Toronto for a whole month and am now

> back

> > > in Italy. I'm sorry I couldn't write much from Toronto for a

> variety

> > > of reasons (moving to a new house, changed our internet server,

> very

> > > busy with Dad and other errands, etc...) But now, I can make a

> full

> > > report of the situation and hopefully get some feedback and

> advice

> > > from you.

> > >

> > > COGNITION: I noticed right away a great improvement in Dad's

> mental

> > > abilities and cognition. We think this is due to Exelon. He is

> always

> > > coherent in his thoughts, never manifested any inappropriate

> emotions

> > > or behaviour, etc. He still is very sleepy during the day and

> does

> > > not sleep at all during most of the nights. His speech is always

> > > coherent, however, his words get slurred sometimes and there have

> > > been episodes where he keeps saying that he has something to tell

> me

> > > but cannot grasp at the idea that he wants to convey.

> > >

> > > His living conditions: as you recall, we were very concerned

> about

> > > him being on the locked dementia floor (in a private retirement

> > > home). In fact, he has become more withdrawn and uninterested in

> his

> > > surroundings. He definitely suffers emtionally by being

> surrounded

> > > with severely impaired residents and the very fact that he is

> > > restricted to that floor. However, I found the staff on the

> dementia

> > > floor to be much more caring and attentive than on other floors

> and

> > > there are also a much larger ratio of care-givers per resident on

> > > this floor. The hygiene issues were not as bad as I had thought

> > > however, on some days the smell of urine on that floor is

> > > perceptible.

> > >

> > > MOVEMENT PROBLEMS: Dad's movements have hugely deteriorated. This

>

> was

> > > quite terrible to see: he still walks with his walker, but due to

> his

> > > visuo-spatial dysfunctions, he goes off the paths or comes very

> close

> > > to and bumps against objects, etc... His balance when sitting

> down or

> > > getting up from chairs or his bed is terrible. Often when he has

> to

> > > move his feet to get close to a chair to sit down, you can

> actually

> > > see that he tries to move his feet but it's as if they are glued

> to

> > > the floor. On several occasions I have had to lift his foot off

> the

> > > ground and initiate the movement for him and then he is able to

> > > continue. In fact he has had several falls during August, one of

> > > which necessitated an ambulance trip to the ER and several X-

> rays:

> > > fortunately nothing was broken or fractured, but there was a huge

> > > bruise and a very large hematoma which is still being re-

> absorbed.

> > >

> > > DEPRESSION: We took Dad for his regular appointment with his

> > > cognitive neurologist (the one who had diagnosed LBD from the

> very

> > > first visit). They found that he was depressed and prescribed

> Celexa

> > > (Citalopram) to be given to him with gradually increasing doses

> to a

> > > maximum of 20mg per day. We have already seen an improvement in

> his

> > > mood and awareness since he has been on Celexa.

> > >

> > > SINEMET: The doctors also decided that due to his increasing

> > > incidents of falls, it was now time to address the movement

> problems:

> > > they prescribed Sinement 100/25 tablets. These tabs were to start

> two

> > > weeks after the start of Celexa and the dose is as follows: 1 tab

> a

> > > day for 3 days and if tolerated, 2 tabs a day for the next 3 days

> and

> > > if still well-tolerated, 3 tabs a day and maintain at 3 tabs a

> day.

> > > He is still taking 4.5mg of Exelon twice a day (9 mg total

> daily). We

> > > hope to see an improvement in his movement problems but worry

> that

> > > the Sinement might trigger hallucinations and delusions and

> erratic

> > > behaviour. Although Dad had only two episodes of hallucinations

> (more

> > > like vivid dreams) only in the beginning of his illness and never

> > > again, so maybe he's not prone to hallucinations. However, I am

> > > keeping my fingers crossed and hope that Sinemet will not worsen

> his

> > > cognitive functioning.

> > >

> > > OTHER RESIDENCES: I had also compiled a list of other possible

> > > retirement homes and looked them up. They were all very good but

> only

> > > one of them seemed to have the facilities to provide increasing

> care

> > > suitable for Dad's increasing needs in the future. However we

> > > realized that Dad's current retirement home was still the best

> one

> > > around (and unfortunately the most expensive one too!) which

> could

> > > provide all levels of care. So we decided to bite the bullet and

> keep

> > > Dad at his current facility, and try to reason with the directors

> to

> > > give him more personlized care suitable for his particular

> condition.

> > >

> > > MEETING WITH RETIREMENT HOME DIRECTORS AND STAFF: After several

> > > meetings with individual directors and staff, we had a meeting

> with

> > > the general manager of the retirement home and the director of

> care

> > > of his floor, during which we discussed the letter written by his

> > > cognitive neurologist who emphasized the fact that Dad's stay on

> a

> > > locked floor would damage him both emotionally and cognitively.

> We

> > > also discussed all other issues involved in his care and brought

> up

> > > all our concerns and complaints. We all agreed that due to his

> recent

> > > falls and increasing disability, he does need the extra care

> given on

> > > that floor, but they promised to take him down to the other

> floors

> > > and especially to the common areas indoors and outdoors so that

> he

> > > can benefit from mingling with more highly functioning residents

> and

> > > participate in the planned activities. We also asked for the

> staff to

> > > watch him when he tries to get up from a sitting position and

> make

> > > sure he doesn't fall. In general, we also feel that Dad can use

> the

> > > extra care given on the dementia floor, but he should not be

> treated

> > > the same as residents who are totally cognitively impaired. Even

> the

> > > directors agreed that Dad is definitely more mentally stable

> > > and " normal " than the other residents on that floor and his

> plan

> of

> > > care and activities should reflect this difference. We got their

> > > agreement and promise that they would organize Dad's days and

> > > evenings in such way as to allow him to move around the entire

> > > facility and participate in as many programs as possible, while

> safe-

> > > guarding his physical safety and watching out for falls.

> > >

> > > New Problem: I noticed that on two occasions when I was with Dad,

> he

> > > said that he wanted to go to the bathroom and got up to go. But

> in

> > > front of the toilet, he must have locked up and had great

> difficulty

> > > pulling down his pants, etc... and unfortunately he lost bladder

> > > control and wet his pants. This happened only in the bathroom and

> in

> > > my opinion it was mostly due to his movement difficulties

> preventing

> > > him from getting to the toilet and taking down his pants fast

> enough.

> > > He has not been incontinent on any other occasion and still goes

> to

> > > the bathroom by himself. However, I am already starting to look

> at

> > > adult diapers and incontinence products as a back-up plan,

> especially

> > > for the times when he is outside the retirement home (either on

> > > outings, or when we take him out for lunch or to visit relatives

> and

> > > friends). Our goal is to preserve his dignity as much as

> possible,

> > > especially avoiding situation in which he might feel embarassed

> in

> > > front of others.

> > >

> > > As usual, I count on my friends at this forum to provide me with

> > > further insight, advice and maybe words of encouragement on any

> of

> > > these issues. Your input and presence means the world to me and I

> > > thank each and everyone of you for your continuing help and

> support.

> > >

> > > With much love,

> > > Shomy.

> > >

> >

>

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

>

> Welcome to LBDcaregivers.

>

September 15, 2008

Hi ,

That's a good cue, too. Though mom is now in a wheelchair, she can " walk " her

feet forward to move the chair if we cue her to " march with your feet. " The PTs

have told us that the trick is to use the same cues consistently and make them

clear and brief.

Lin

Subject: Re: Cognition vs. Movement problems

To: LBDcaregivers

Date: Monday, September 15, 2008, 7:23 PM

Lin, your mention of cueing when a LO has a frozen episode when walking reminded

me

that if I tapped Mom's thigh, on the side that needed to go forward, it

helped.

> > >

> > > Hello to all my dear friends at LBD Caregivers,

> > >

> > > As you may recall, I was in Toronto for a whole month and am now

> back

> > > in Italy. I'm sorry I couldn't write much from Toronto

for a

> variety

> > > of reasons (moving to a new house, changed our internet server,

> very

> > > busy with Dad and other errands, etc...) But now, I can make a

> full

> > > report of the situation and hopefully get some feedback and

> advice

> > > from you.

> > >

> > > COGNITION: I noticed right away a great improvement in Dad's

> mental

> > > abilities and cognition. We think this is due to Exelon. He is

> always

> > > coherent in his thoughts, never manifested any inappropriate

> emotions

> > > or behaviour, etc. He still is very sleepy during the day and

> does

> > > not sleep at all during most of the nights. His speech is always

> > > coherent, however, his words get slurred sometimes and there

have

> > > been episodes where he keeps saying that he has something to

tell

> me

> > > but cannot grasp at the idea that he wants to convey.

> > >

> > > His living conditions: as you recall, we were very concerned

> about

> > > him being on the locked dementia floor (in a private retirement

> > > home). In fact, he has become more withdrawn and uninterested in

> his

> > > surroundings. He definitely suffers emtionally by being

> surrounded

> > > with severely impaired residents and the very fact that he is

> > > restricted to that floor. However, I found the staff on the

> dementia

> > > floor to be much more caring and attentive than on other floors

> and

> > > there are also a much larger ratio of care-givers per resident

on

> > > this floor. The hygiene issues were not as bad as I had thought

> > > however, on some days the smell of urine on that floor is

> > > perceptible.

> > >

> > > MOVEMENT PROBLEMS: Dad's movements have hugely deteriorated.

This

>

> was

> > > quite terrible to see: he still walks with his walker, but due

to

> his

> > > visuo-spatial dysfunctions, he goes off the paths or comes very

> close

> > > to and bumps against objects, etc... His balance when sitting

> down or

> > > getting up from chairs or his bed is terrible. Often when he has

> to

> > > move his feet to get close to a chair to sit down, you can

> actually

> > > see that he tries to move his feet but it's as if they are

glued

> to

> > > the floor. On several occasions I have had to lift his foot off

> the

> > > ground and initiate the movement for him and then he is able to

> > > continue. In fact he has had several falls during August, one of

> > > which necessitated an ambulance trip to the ER and several X-

> rays:

> > > fortunately nothing was broken or fractured, but there was a

huge

> > > bruise and a very large hematoma which is still being re-

> absorbed.

> > >

> > > DEPRESSION: We took Dad for his regular appointment with his

> > > cognitive neurologist (the one who had diagnosed LBD from the

> very

> > > first visit). They found that he was depressed and prescribed

> Celexa

> > > (Citalopram) to be given to him with gradually increasing doses

> to a

> > > maximum of 20mg per day. We have already seen an improvement in

> his

> > > mood and awareness since he has been on Celexa.

> > >

> > > SINEMET: The doctors also decided that due to his increasing

> > > incidents of falls, it was now time to address the movement

> problems:

> > > they prescribed Sinement 100/25 tablets. These tabs were to

start

> two

> > > weeks after the start of Celexa and the dose is as follows: 1

tab

> a

> > > day for 3 days and if tolerated, 2 tabs a day for the next 3

days

> and

> > > if still well-tolerated, 3 tabs a day and maintain at 3 tabs a

> day.

> > > He is still taking 4.5mg of Exelon twice a day (9 mg total

> daily). We

> > > hope to see an improvement in his movement problems but worry

> that

> > > the Sinement might trigger hallucinations and delusions and

> erratic

> > > behaviour. Although Dad had only two episodes of hallucinations

> (more

> > > like vivid dreams) only in the beginning of his illness and

never

> > > again, so maybe he's not prone to hallucinations. However, I

am

> > > keeping my fingers crossed and hope that Sinemet will not worsen

> his

> > > cognitive functioning.

> > >

> > > OTHER RESIDENCES: I had also compiled a list of other possible

> > > retirement homes and looked them up. They were all very good but

> only

> > > one of them seemed to have the facilities to provide increasing

> care

> > > suitable for Dad's increasing needs in the future. However

we

> > > realized that Dad's current retirement home was still the

best

> one

> > > around (and unfortunately the most expensive one too!) which

> could

> > > provide all levels of care. So we decided to bite the bullet and

> keep

> > > Dad at his current facility, and try to reason with the

directors

> to

> > > give him more personlized care suitable for his particular

> condition.

> > >

> > > MEETING WITH RETIREMENT HOME DIRECTORS AND STAFF: After several

> > > meetings with individual directors and staff, we had a meeting

> with

> > > the general manager of the retirement home and the director of

> care

> > > of his floor, during which we discussed the letter written by

his

> > > cognitive neurologist who emphasized the fact that Dad's

stay on

> a

> > > locked floor would damage him both emotionally and cognitively.

> We

> > > also discussed all other issues involved in his care and brought

> up

> > > all our concerns and complaints. We all agreed that due to his

> recent

> > > falls and increasing disability, he does need the extra care

> given on

> > > that floor, but they promised to take him down to the other

> floors

> > > and especially to the common areas indoors and outdoors so that

> he

> > > can benefit from mingling with more highly functioning residents

> and

> > > participate in the planned activities. We also asked for the

> staff to

> > > watch him when he tries to get up from a sitting position and

> make

> > > sure he doesn't fall. In general, we also feel that Dad can

use

> the

> > > extra care given on the dementia floor, but he should not be

> treated

> > > the same as residents who are totally cognitively impaired. Even

> the

> > > directors agreed that Dad is definitely more mentally stable

> > > and " normal " than the other residents on that floor

and his

> plan

> of

> > > care and activities should reflect this difference. We got their

> > > agreement and promise that they would organize Dad's days

and

> > > evenings in such way as to allow him to move around the entire

> > > facility and participate in as many programs as possible, while

> safe-

> > > guarding his physical safety and watching out for falls.

> > >

> > > New Problem: I noticed that on two occasions when I was with

Dad,

> he

> > > said that he wanted to go to the bathroom and got up to go. But

> in

> > > front of the toilet, he must have locked up and had great

> difficulty

> > > pulling down his pants, etc... and unfortunately he lost bladder

> > > control and wet his pants. This happened only in the bathroom

and

> in

> > > my opinion it was mostly due to his movement difficulties

> preventing

> > > him from getting to the toilet and taking down his pants fast

> enough.

> > > He has not been incontinent on any other occasion and still goes

> to

> > > the bathroom by himself. However, I am already starting to look

> at

> > > adult diapers and incontinence products as a back-up plan,

> especially

> > > for the times when he is outside the retirement home (either on

> > > outings, or when we take him out for lunch or to visit relatives

> and

> > > friends). Our goal is to preserve his dignity as much as

> possible,

> > > especially avoiding situation in which he might feel embarassed

> in

> > > front of others.

> > >

> > > As usual, I count on my friends at this forum to provide me with

> > > further insight, advice and maybe words of encouragement on any

> of

> > > these issues. Your input and presence means the world to me and

I

> > > thank each and everyone of you for your continuing help and

> support.

> > >

> > > With much love,

> > > Shomy.

> > >

> >

>

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

>

> Welcome to LBDcaregivers.

>

September 23, 2008

Shomy,

He doesn't lower the bed. Who ever puts him in bed lowers the bed and it stays

that way until someone else raises it. So even if he got out, he would have to

crawl out and I know they always had big mats that lay beside the bed.

Mom had a half rail on her bed. They couldn't use full rails but the foot of

the bed was open. It was one of the problems Mom didn't have. She never fell

out of bed. And I had her in a wheel chair all the time so they wouldn't let

her fall. She wheeled herself around the nh and I helped her stand in the

bathroom.

I wonder what would happen if you insisted on a half rail?? There is also a

thing that fits under the mattress that is like a support if he just needs it

hold on it. I will see if I can find it. I insisted that Mom have a " Lap

Buddie " and they considered it a " restraint " and weren't suppose to use it, but

they did because I insisted.

I hope this is a better picture.

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: Cognition vs. Movement problems

Dear Donna,

When Dad was living at home, the occupational therapist asked us to

buy a moveable bed-rail which would attach under a mattress and it

would prevent him from rolling off the bed, and also it also worked

as a support/grab bar to help him lift himself from the bed and hold

on to it to stablize himself. It was great. But apparently the

nursing homes or retirement homes will not allow it because there has

been on case of an elderly woman who somehow got her head through the

bars and unfortunately got strangled.

But eversince they've banned this equipment, they have not come up

with an alternative. Placing the mats on the floor seems to be a

workable idea.

The other suggestion of getting beds that can be lowered is also

good, but my Dad would never remember how to work it. Our biggest

problem is that he keeps getting up from bed all the time: all day

and all night. If he would just go to bed only 2 to 3 times a day,

then it would be easy. But with him, it's a constant cycle of getting

up, getting dressed, going out of the room, coming back, getting

undressed, going to bed, over and over again.

Shomy.

> > > > >

> > > > > Hello to all my dear friends at LBD Caregivers,

> > > > >

> > > > > As you may recall, I was in Toronto for a whole month and

am

> now

> >

> > > back

> > > > > in Italy. I'm sorry I couldn't write much from Toronto

> > for a

> > > variety

> > > > > of reasons (moving to a new house, changed our internet

> server,

> > > very

> > > > > busy with Dad and other errands, etc...) But now, I can

make

> a

> > > full

> > > > > report of the situation and hopefully get some feedback and

> > > advice

> > > > > from you.

> > > > >

> > > > > COGNITION: I noticed right away a great improvement in Dad's

> >

> > > mental

> > > > > abilities and cognition. We think this is due to Exelon. He

> is

> > > always

> > > > > coherent in his thoughts, never manifested any

inappropriate

> > > emotions

> > > > > or behaviour, etc. He still is very sleepy during the day

and

> > > does

> > > > > not sleep at all during most of the nights. His speech is

> always

> >

> > > > > coherent, however, his words get slurred sometimes and there

> > have

> > > > > been episodes where he keeps saying that he has something to

> > tell

> > > me

> > > > > but cannot grasp at the idea that he wants to convey.

> > > > >

> > > > > His living conditions: as you recall, we were very

concerned

> > > about

> > > > > him being on the locked dementia floor (in a private

> retirement

> > > > > home). In fact, he has become more withdrawn and

uninterested

> in

> >

> > > his

> > > > > surroundings. He definitely suffers emtionally by being

> > > surrounded

> > > > > with severely impaired residents and the very fact that he

is

> > > > > restricted to that floor. However, I found the staff on the

> > > dementia

> > > > > floor to be much more caring and attentive than on other

> floors

> > > and

> > > > > there are also a much larger ratio of care-givers per

resident

> > on

> > > > > this floor. The hygiene issues were not as bad as I had

> thought

> > > > > however, on some days the smell of urine on that floor is

> > > > > perceptible.

> > > > >

> > > > > MOVEMENT PROBLEMS: Dad's movements have hugely deteriorated.

> > This

> > >

> > > was

> > > > > quite terrible to see: he still walks with his walker, but

due

> > to

> > > his

> > > > > visuo-spatial dysfunctions, he goes off the paths or comes

> very

> > > close

> > > > > to and bumps against objects, etc... His balance when

sitting

> > > down or

> > > > > getting up from chairs or his bed is terrible. Often when

he

> has

> >

> > > to

> > > > > move his feet to get close to a chair to sit down, you can

> > > actually

> > > > > see that he tries to move his feet but it's as if they are

> > glued

> > > to

> > > > > the floor. On several occasions I have had to lift his foot

> off

> > > the

> > > > > ground and initiate the movement for him and then he is

able

> to

> > > > > continue. In fact he has had several falls during August,

one

> of

> >

> > > > > which necessitated an ambulance trip to the ER and several

X-

> > > rays:

> > > > > fortunately nothing was broken or fractured, but there was a

> > huge

> > > > > bruise and a very large hematoma which is still being re-

> > > absorbed.

> > > > >

> > > > > DEPRESSION: We took Dad for his regular appointment with

his

> > > > > cognitive neurologist (the one who had diagnosed LBD from

the

> > > very

> > > > > first visit). They found that he was depressed and

prescribed

> > > Celexa

> > > > > (Citalopram) to be given to him with gradually increasing

> doses

> > > to a

> > > > > maximum of 20mg per day. We have already seen an

improvement

> in

> > > his

> > > > > mood and awareness since he has been on Celexa.

> > > > >

> > > > > SINEMET: The doctors also decided that due to his

increasing

> > > > > incidents of falls, it was now time to address the movement

> > > problems:

> > > > > they prescribed Sinement 100/25 tablets. These tabs were to

> > start

> > > two

> > > > > weeks after the start of Celexa and the dose is as follows:

1

> > tab

> > > a

> > > > > day for 3 days and if tolerated, 2 tabs a day for the next 3

> > days

> > > and

> > > > > if still well-tolerated, 3 tabs a day and maintain at 3

tabs

> a

> > > day.

> > > > > He is still taking 4.5mg of Exelon twice a day (9 mg total

> > > daily). We

> > > > > hope to see an improvement in his movement problems but

worry

> > > that

> > > > > the Sinement might trigger hallucinations and delusions and

> > > erratic

> > > > > behaviour. Although Dad had only two episodes of

> hallucinations

> > > (more

> > > > > like vivid dreams) only in the beginning of his illness and

> > never

> > > > > again, so maybe he's not prone to hallucinations. However, I

> > am

> > > > > keeping my fingers crossed and hope that Sinemet will not

> worsen

> >

> > > his

> > > > > cognitive functioning.

> > > > >

> > > > > OTHER RESIDENCES: I had also compiled a list of other

> possible

> > > > > retirement homes and looked them up. They were all very

good

> but

> >

> > > only

> > > > > one of them seemed to have the facilities to provide

> increasing

> > > care

> > > > > suitable for Dad's increasing needs in the future. However

> > we

> > > > > realized that Dad's current retirement home was still the

> > best

> > > one

> > > > > around (and unfortunately the most expensive one too!)

which

> > > could

> > > > > provide all levels of care. So we decided to bite the

bullet

> and

> >

> > > keep

> > > > > Dad at his current facility, and try to reason with the

> > directors

> > > to

> > > > > give him more personlized care suitable for his particular

> > > condition.

> > > > >

> > > > > MEETING WITH RETIREMENT HOME DIRECTORS AND STAFF: After

> several

> > > > > meetings with individual directors and staff, we had a

> meeting

> > > with

> > > > > the general manager of the retirement home and the director

> of

> > > care

> > > > > of his floor, during which we discussed the letter written

by

> > his

> > > > > cognitive neurologist who emphasized the fact that Dad's

> > stay on

> > > a

> > > > > locked floor would damage him both emotionally and

> cognitively.

> > > We

> > > > > also discussed all other issues involved in his care and

> brought

> >

> > > up

> > > > > all our concerns and complaints. We all agreed that due to

> his

> > > recent

> > > > > falls and increasing disability, he does need the extra

care

> > > given on

> > > > > that floor, but they promised to take him down to the other

> > > floors

> > > > > and especially to the common areas indoors and outdoors so

> that

> > > he

> > > > > can benefit from mingling with more highly functioning

> residents

> >

> > > and

> > > > > participate in the planned activities. We also asked for

the

> > > staff to

> > > > > watch him when he tries to get up from a sitting position

and

> > > make

> > > > > sure he doesn't fall. In general, we also feel that Dad can

> > use

> > > the

> > > > > extra care given on the dementia floor, but he should not

be

> > > treated

> > > > > the same as residents who are totally cognitively impaired.

> Even

> >

> > > the

> > > > > directors agreed that Dad is definitely more mentally

stable

> > > > > and " normal " than the other residents on that floor

> > and his

> > > plan

> > > of

> > > > > care and activities should reflect this difference. We got

> their

> >

> > > > > agreement and promise that they would organize Dad's days

> > and

> > > > > evenings in such way as to allow him to move around the

> entire

> > > > > facility and participate in as many programs as possible,

> while

> > > safe-

> > > > > guarding his physical safety and watching out for falls.

> > > > >

> > > > > New Problem: I noticed that on two occasions when I was with

> > Dad,

> > > he

> > > > > said that he wanted to go to the bathroom and got up to go.

> But

> > > in

> > > > > front of the toilet, he must have locked up and had great

> > > difficulty

> > > > > pulling down his pants, etc... and unfortunately he lost

> bladder

> >

> > > > > control and wet his pants. This happened only in the

bathroom

> > and

> > > in

> > > > > my opinion it was mostly due to his movement difficulties

> > > preventing

> > > > > him from getting to the toilet and taking down his pants

fast

> > > enough.

> > > > > He has not been incontinent on any other occasion and still

> goes

> >

> > > to

> > > > > the bathroom by himself. However, I am already starting to

> look

> > > at

> > > > > adult diapers and incontinence products as a back-up plan,

> > > especially

> > > > > for the times when he is outside the retirement home

(either

> on

> > > > > outings, or when we take him out for lunch or to visit

> relatives

> >

> > > and

> > > > > friends). Our goal is to preserve his dignity as much as

> > > possible,

> > > > > especially avoiding situation in which he might feel

> embarassed

> > > in

> > > > > front of others.

> > > > >

> > > > > As usual, I count on my friends at this forum to provide me

> with

> >

> > > > > further insight, advice and maybe words of encouragement on

> any

> > > of

> > > > > these issues. Your input and presence means the world to me

> and

> > I

> > > > > thank each and everyone of you for your continuing help and

> > > support.

> > > > >

> > > > > With much love,

> > > > > Shomy.

> > > > >

> > > >

> > >

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

> > >

> > > Welcome to LBDcaregivers.

> > >

September 23, 2008

PS..Shomy,

You might want to get him a comfortable chair with an easy moving foot rest so

he can get up and down when ever he wanted. He could sleep in that chair.

I can't imagine the nh would be any happier with him up when ever he wanted if

no one was available.

Ask them what solution they are coming up with, or would they rather pay for a

broken bone. They have solutions we haven't even thought of yet.

I will try and find a Med Supply store that has something you might consider.

and send it private mail.

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: Cognition vs. Movement problems

Dear Donna,

When Dad was living at home, the occupational therapist asked us to

buy a moveable bed-rail which would attach under a mattress and it

would prevent him from rolling off the bed, and also it also worked

as a support/grab bar to help him lift himself from the bed and hold

on to it to stablize himself. It was great. But apparently the

nursing homes or retirement homes will not allow it because there has

been on case of an elderly woman who somehow got her head through the

bars and unfortunately got strangled.

But eversince they've banned this equipment, they have not come up

with an alternative. Placing the mats on the floor seems to be a

workable idea.

The other suggestion of getting beds that can be lowered is also

good, but my Dad would never remember how to work it. Our biggest

problem is that he keeps getting up from bed all the time: all day

and all night. If he would just go to bed only 2 to 3 times a day,

then it would be easy. But with him, it's a constant cycle of getting

up, getting dressed, going out of the room, coming back, getting

undressed, going to bed, over and over again.

Shomy.

> > > > >

> > > > > Hello to all my dear friends at LBD Caregivers,

> > > > >

> > > > > As you may recall, I was in Toronto for a whole month and

am

> now

> >

> > > back

> > > > > in Italy. I'm sorry I couldn't write much from Toronto

> > for a

> > > variety

> > > > > of reasons (moving to a new house, changed our internet

> server,

> > > very

> > > > > busy with Dad and other errands, etc...) But now, I can

make

> a

> > > full

> > > > > report of the situation and hopefully get some feedback and

> > > advice

> > > > > from you.

> > > > >

> > > > > COGNITION: I noticed right away a great improvement in Dad's

> >

> > > mental

> > > > > abilities and cognition. We think this is due to Exelon. He

> is

> > > always

> > > > > coherent in his thoughts, never manifested any

inappropriate

> > > emotions

> > > > > or behaviour, etc. He still is very sleepy during the day

and

> > > does

> > > > > not sleep at all during most of the nights. His speech is

> always

> >

> > > > > coherent, however, his words get slurred sometimes and there

> > have

> > > > > been episodes where he keeps saying that he has something to

> > tell

> > > me

> > > > > but cannot grasp at the idea that he wants to convey.

> > > > >

> > > > > His living conditions: as you recall, we were very

concerned

> > > about

> > > > > him being on the locked dementia floor (in a private

> retirement

> > > > > home). In fact, he has become more withdrawn and

uninterested

> in

> >

> > > his

> > > > > surroundings. He definitely suffers emtionally by being

> > > surrounded

> > > > > with severely impaired residents and the very fact that he

is

> > > > > restricted to that floor. However, I found the staff on the

> > > dementia

> > > > > floor to be much more caring and attentive than on other

> floors

> > > and

> > > > > there are also a much larger ratio of care-givers per

resident

> > on

> > > > > this floor. The hygiene issues were not as bad as I had

> thought

> > > > > however, on some days the smell of urine on that floor is

> > > > > perceptible.

> > > > >

> > > > > MOVEMENT PROBLEMS: Dad's movements have hugely deteriorated.

> > This

> > >

> > > was

> > > > > quite terrible to see: he still walks with his walker, but

due

> > to

> > > his

> > > > > visuo-spatial dysfunctions, he goes off the paths or comes

> very

> > > close

> > > > > to and bumps against objects, etc... His balance when

sitting

> > > down or

> > > > > getting up from chairs or his bed is terrible. Often when

he

> has

> >

> > > to

> > > > > move his feet to get close to a chair to sit down, you can

> > > actually

> > > > > see that he tries to move his feet but it's as if they are

> > glued

> > > to

> > > > > the floor. On several occasions I have had to lift his foot

> off

> > > the

> > > > > ground and initiate the movement for him and then he is

able

> to

> > > > > continue. In fact he has had several falls during August,

one

> of

> >

> > > > > which necessitated an ambulance trip to the ER and several

X-

> > > rays:

> > > > > fortunately nothing was broken or fractured, but there was a

> > huge

> > > > > bruise and a very large hematoma which is still being re-

> > > absorbed.

> > > > >

> > > > > DEPRESSION: We took Dad for his regular appointment with

his

> > > > > cognitive neurologist (the one who had diagnosed LBD from

the

> > > very

> > > > > first visit). They found that he was depressed and

prescribed

> > > Celexa

> > > > > (Citalopram) to be given to him with gradually increasing

> doses

> > > to a

> > > > > maximum of 20mg per day. We have already seen an

improvement

> in

> > > his

> > > > > mood and awareness since he has been on Celexa.

> > > > >

> > > > > SINEMET: The doctors also decided that due to his

increasing

> > > > > incidents of falls, it was now time to address the movement

> > > problems:

> > > > > they prescribed Sinement 100/25 tablets. These tabs were to

> > start

> > > two

> > > > > weeks after the start of Celexa and the dose is as follows:

1

> > tab

> > > a

> > > > > day for 3 days and if tolerated, 2 tabs a day for the next 3

> > days

> > > and

> > > > > if still well-tolerated, 3 tabs a day and maintain at 3

tabs

> a

> > > day.

> > > > > He is still taking 4.5mg of Exelon twice a day (9 mg total

> > > daily). We

> > > > > hope to see an improvement in his movement problems but

worry

> > > that

> > > > > the Sinement might trigger hallucinations and delusions and

> > > erratic

> > > > > behaviour. Although Dad had only two episodes of

> hallucinations

> > > (more

> > > > > like vivid dreams) only in the beginning of his illness and

> > never

> > > > > again, so maybe he's not prone to hallucinations. However, I

> > am

> > > > > keeping my fingers crossed and hope that Sinemet will not

> worsen

> >

> > > his

> > > > > cognitive functioning.

> > > > >

> > > > > OTHER RESIDENCES: I had also compiled a list of other

> possible

> > > > > retirement homes and looked them up. They were all very

good

> but

> >

> > > only

> > > > > one of them seemed to have the facilities to provide

> increasing

> > > care

> > > > > suitable for Dad's increasing needs in the future. However

> > we

> > > > > realized that Dad's current retirement home was still the

> > best

> > > one

> > > > > around (and unfortunately the most expensive one too!)

which

> > > could

> > > > > provide all levels of care. So we decided to bite the

bullet

> and

> >

> > > keep

> > > > > Dad at his current facility, and try to reason with the

> > directors

> > > to

> > > > > give him more personlized care suitable for his particular

> > > condition.

> > > > >

> > > > > MEETING WITH RETIREMENT HOME DIRECTORS AND STAFF: After

> several

> > > > > meetings with individual directors and staff, we had a

> meeting

> > > with

> > > > > the general manager of the retirement home and the director

> of

> > > care

> > > > > of his floor, during which we discussed the letter written

by

> > his

> > > > > cognitive neurologist who emphasized the fact that Dad's

> > stay on

> > > a

> > > > > locked floor would damage him both emotionally and

> cognitively.

> > > We

> > > > > also discussed all other issues involved in his care and

> brought

> >

> > > up

> > > > > all our concerns and complaints. We all agreed that due to

> his

> > > recent

> > > > > falls and increasing disability, he does need the extra

care

> > > given on

> > > > > that floor, but they promised to take him down to the other

> > > floors

> > > > > and especially to the common areas indoors and outdoors so

> that

> > > he

> > > > > can benefit from mingling with more highly functioning

> residents

> >

> > > and

> > > > > participate in the planned activities. We also asked for

the

> > > staff to

> > > > > watch him when he tries to get up from a sitting position

and

> > > make

> > > > > sure he doesn't fall. In general, we also feel that Dad can

> > use

> > > the

> > > > > extra care given on the dementia floor, but he should not

be

> > > treated

> > > > > the same as residents who are totally cognitively impaired.

> Even

> >

> > > the

> > > > > directors agreed that Dad is definitely more mentally

stable

> > > > > and " normal " than the other residents on that floor

> > and his

> > > plan

> > > of

> > > > > care and activities should reflect this difference. We got

> their

> >

> > > > > agreement and promise that they would organize Dad's days

> > and

> > > > > evenings in such way as to allow him to move around the

> entire

> > > > > facility and participate in as many programs as possible,

> while

> > > safe-

> > > > > guarding his physical safety and watching out for falls.

> > > > >

> > > > > New Problem: I noticed that on two occasions when I was with

> > Dad,

> > > he

> > > > > said that he wanted to go to the bathroom and got up to go.

> But

> > > in

> > > > > front of the toilet, he must have locked up and had great

> > > difficulty

> > > > > pulling down his pants, etc... and unfortunately he lost

> bladder

> >

> > > > > control and wet his pants. This happened only in the

bathroom

> > and

> > > in

> > > > > my opinion it was mostly due to his movement difficulties

> > > preventing

> > > > > him from getting to the toilet and taking down his pants

fast

> > > enough.

> > > > > He has not been incontinent on any other occasion and still

> goes

> >

> > > to

> > > > > the bathroom by himself. However, I am already starting to

> look

> > > at

> > > > > adult diapers and incontinence products as a back-up plan,

> > > especially

> > > > > for the times when he is outside the retirement home

(either

> on

> > > > > outings, or when we take him out for lunch or to visit

> relatives

> >

> > > and

> > > > > friends). Our goal is to preserve his dignity as much as

> > > possible,

> > > > > especially avoiding situation in which he might feel

> embarassed

> > > in

> > > > > front of others.

> > > > >

> > > > > As usual, I count on my friends at this forum to provide me

> with

> >

> > > > > further insight, advice and maybe words of encouragement on

> any

> > > of

> > > > > these issues. Your input and presence means the world to me

> and

> > I

> > > > > thank each and everyone of you for your continuing help and

> > > support.

> > > > >

> > > > > With much love,

> > > > > Shomy.

> > > > >

> > > >

> > >

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

> > >

> > > Welcome to LBDcaregivers.

> > >

September 23, 2008

Shomy,

I couldn't find the supply store I was looking for but you can go to " links " at

Yahoo and there is a HOME SAFTY link.

I don't know if it is Jan or who but someone had a real good Med supply link.

And your MD can prescribe that stuff and Medicare will pay for it.

You might want to do a " Search " for Med Supplies and I know someone recently put

in Rite Aid as having lots of those thing.

You can also do a " Search " for Handicap helps and will find some stuff that can

be used.

Hope this helps and maybe someone will have that other link or I will try and

find it later.

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: Cognition vs. Movement problems

Hello everyone!

I'm writing with the latest developments in my Dad's condition. I

desperately need advice and input for how to deal with the continuous

falls. Here's what's going on:

As written earlier, his specialist has put him on Sinemet after the

series of falls he had during August. He seems to tolerate the

Sinemet pretty well and so far we haven't seen or heard any side-

effects. At his retirement home (dementia floor) we had arranged with

the staff and directors to watch out for him when he gets up from

chairs, etc... and also we had all decided together that when he

wants to get up from bed, he should pull the emergency cord next to

his bed and a caregiver will come over and help him out of bed.

Well, he has been complaining that many times when he pulls the cord,

nobody shows up to help him. In fact the other night he waited and

waited and finally he got up by himself and fell again and the side

of his body is all bruised.

I'm still Italy, but my sister sees Dad at least 3 times a week. On

Sunday my sister went to his room and tested the system: she pulled

the cord and waited for half an hour and nobody came. Then finally

she went to the caregivers' station and asked for an explanation.

After a few trials, they just told her that the emergency cord is not

working!!

You can imagine my sister's horror! She called me right away and

yesterday I called the home and naturally the floor manager wasn't

there so I talked to another coordinator and told him about the

faulty cord and Dad's falls caused by lack of response from staff. He

was very shocked and said that he would look into it right away and

let me know. I will call again today and follow up.

But even if they fix the emergency cord, what can we do to make sure

he doesn't fall. My Dad is mobile, uses his walker to move around,

though his movements are slow and his torso is rigid. Sinemet does

not seem to have improved his movements very much, but it might be

too early to tell. And Dad has gotten into the habit of continuously

going to bed and getting up after a short while. He gets undressed,

wears pyjamas, goes to bed and after a short while (maximum 2hours)

he gets up again, gets completely dressed and goes out of the room.

Even the dressing part requires balance and coordination which he is

losing rapidly, but he won't stop. He keeps doing this routine a few

times a day. He doesn't just sit in a chair the whole day. He moves

around a lot. I'm pretty sure at the home, they probably got tired of

his constant ringing the bell and they just decided to ignore it

(even though they've never said as much).

My sister said the entire side of his body was bruised due to another

fall. I don't know what to do. I don't know if we can demand the

staff to come to his side every time he pulls the cord (even though

they had promised to do so). What if he pulls the cord too

frequently? Right now we have no idea how frequently he has done it.

We cannot afford to pay for another caregiver to go to his retirement

home and sit with him the whole day and night to make sure he doesn't

fall. His retirement home is very expensive and the fees are draining

our savings already. I know that if we demand more care from the

retirement home, they will ask for more money again. They had agreed

to respond when he pulls the cord and help him get out of bed.

Obviously we cannot give him any tranquilizers because his specialist

has forbidden them. And as it is, he is very sleepy during the day,

but he keeps moving around. How can we keep someone like this safe

from falls? It is a miracle he hasn't broken any bones yet, because

he has had some pretty bad falls.

What can we do? My sister is bewildered and every time she goes there

and sees new bruises from falls, she pretty much loses her mind. She

was close to moving him out of the retirement home already. But I

know we cannot find a better facility.

Please give me your suggestions. What can you do for a LO with LBD

who moves a lot throughout the day (and night!) but moves really

badly, with little balance and a lot of rigidity?

Please write me soon, I'm going out of my mind!

With much love,

Shomy.

> > > >

> > > > Hello to all my dear friends at LBD Caregivers,

> > > >

> > > > As you may recall, I was in Toronto for a whole month and am

now

>

> > back

> > > > in Italy. I'm sorry I couldn't write much from Toronto

> for a

> > variety

> > > > of reasons (moving to a new house, changed our internet

server,

> > very

> > > > busy with Dad and other errands, etc...) But now, I can make

a

> > full

> > > > report of the situation and hopefully get some feedback and

> > advice

> > > > from you.

> > > >

> > > > COGNITION: I noticed right away a great improvement in Dad's

>

> > mental

> > > > abilities and cognition. We think this is due to Exelon. He

is

> > always

> > > > coherent in his thoughts, never manifested any inappropriate

> > emotions

> > > > or behaviour, etc. He still is very sleepy during the day and

> > does

> > > > not sleep at all during most of the nights. His speech is

always

>

> > > > coherent, however, his words get slurred sometimes and there

> have

> > > > been episodes where he keeps saying that he has something to

> tell

> > me

> > > > but cannot grasp at the idea that he wants to convey.

> > > >

> > > > His living conditions: as you recall, we were very concerned

> > about

> > > > him being on the locked dementia floor (in a private

retirement

> > > > home). In fact, he has become more withdrawn and uninterested

in

>

> > his

> > > > surroundings. He definitely suffers emtionally by being

> > surrounded

> > > > with severely impaired residents and the very fact that he is

> > > > restricted to that floor. However, I found the staff on the

> > dementia

> > > > floor to be much more caring and attentive than on other

floors

> > and

> > > > there are also a much larger ratio of care-givers per resident

> on

> > > > this floor. The hygiene issues were not as bad as I had

thought

> > > > however, on some days the smell of urine on that floor is

> > > > perceptible.

> > > >

> > > > MOVEMENT PROBLEMS: Dad's movements have hugely deteriorated.

> This

> >

> > was

> > > > quite terrible to see: he still walks with his walker, but due

> to

> > his

> > > > visuo-spatial dysfunctions, he goes off the paths or comes

very

> > close

> > > > to and bumps against objects, etc... His balance when sitting

> > down or

> > > > getting up from chairs or his bed is terrible. Often when he

has

>

> > to

> > > > move his feet to get close to a chair to sit down, you can

> > actually

> > > > see that he tries to move his feet but it's as if they are

> glued

> > to

> > > > the floor. On several occasions I have had to lift his foot

off

> > the

> > > > ground and initiate the movement for him and then he is able

to

> > > > continue. In fact he has had several falls during August, one

of

>

> > > > which necessitated an ambulance trip to the ER and several X-

> > rays:

> > > > fortunately nothing was broken or fractured, but there was a

> huge

> > > > bruise and a very large hematoma which is still being re-

> > absorbed.

> > > >

> > > > DEPRESSION: We took Dad for his regular appointment with his

> > > > cognitive neurologist (the one who had diagnosed LBD from the

> > very

> > > > first visit). They found that he was depressed and prescribed

> > Celexa

> > > > (Citalopram) to be given to him with gradually increasing

doses

> > to a

> > > > maximum of 20mg per day. We have already seen an improvement

in

> > his

> > > > mood and awareness since he has been on Celexa.

> > > >

> > > > SINEMET: The doctors also decided that due to his increasing

> > > > incidents of falls, it was now time to address the movement

> > problems:

> > > > they prescribed Sinement 100/25 tablets. These tabs were to

> start

> > two

> > > > weeks after the start of Celexa and the dose is as follows: 1

> tab

> > a

> > > > day for 3 days and if tolerated, 2 tabs a day for the next 3

> days

> > and

> > > > if still well-tolerated, 3 tabs a day and maintain at 3 tabs

a

> > day.

> > > > He is still taking 4.5mg of Exelon twice a day (9 mg total

> > daily). We

> > > > hope to see an improvement in his movement problems but worry

> > that

> > > > the Sinement might trigger hallucinations and delusions and

> > erratic

> > > > behaviour. Although Dad had only two episodes of

hallucinations

> > (more

> > > > like vivid dreams) only in the beginning of his illness and

> never

> > > > again, so maybe he's not prone to hallucinations. However, I

> am

> > > > keeping my fingers crossed and hope that Sinemet will not

worsen

>

> > his

> > > > cognitive functioning.

> > > >

> > > > OTHER RESIDENCES: I had also compiled a list of other

possible

> > > > retirement homes and looked them up. They were all very good

but

>

> > only

> > > > one of them seemed to have the facilities to provide

increasing

> > care

> > > > suitable for Dad's increasing needs in the future. However

> we

> > > > realized that Dad's current retirement home was still the

> best

> > one

> > > > around (and unfortunately the most expensive one too!) which

> > could

> > > > provide all levels of care. So we decided to bite the bullet

and

>

> > keep

> > > > Dad at his current facility, and try to reason with the

> directors

> > to

> > > > give him more personlized care suitable for his particular

> > condition.

> > > >

> > > > MEETING WITH RETIREMENT HOME DIRECTORS AND STAFF: After

several

> > > > meetings with individual directors and staff, we had a

meeting

> > with

> > > > the general manager of the retirement home and the director

of

> > care

> > > > of his floor, during which we discussed the letter written by

> his

> > > > cognitive neurologist who emphasized the fact that Dad's

> stay on

> > a

> > > > locked floor would damage him both emotionally and

cognitively.

> > We

> > > > also discussed all other issues involved in his care and

brought

>

> > up

> > > > all our concerns and complaints. We all agreed that due to

his

> > recent

> > > > falls and increasing disability, he does need the extra care

> > given on

> > > > that floor, but they promised to take him down to the other

> > floors

> > > > and especially to the common areas indoors and outdoors so

that

> > he

> > > > can benefit from mingling with more highly functioning

residents

>

> > and

> > > > participate in the planned activities. We also asked for the

> > staff to

> > > > watch him when he tries to get up from a sitting position and

> > make

> > > > sure he doesn't fall. In general, we also feel that Dad can

> use

> > the

> > > > extra care given on the dementia floor, but he should not be

> > treated

> > > > the same as residents who are totally cognitively impaired.

Even

>

> > the

> > > > directors agreed that Dad is definitely more mentally stable

> > > > and " normal " than the other residents on that floor

> and his

> > plan

> > of

> > > > care and activities should reflect this difference. We got

their

>

> > > > agreement and promise that they would organize Dad's days

> and

> > > > evenings in such way as to allow him to move around the

entire

> > > > facility and participate in as many programs as possible,

while

> > safe-

> > > > guarding his physical safety and watching out for falls.

> > > >

> > > > New Problem: I noticed that on two occasions when I was with

> Dad,

> > he

> > > > said that he wanted to go to the bathroom and got up to go.

But

> > in

> > > > front of the toilet, he must have locked up and had great

> > difficulty

> > > > pulling down his pants, etc... and unfortunately he lost

bladder

>

> > > > control and wet his pants. This happened only in the bathroom

> and

> > in

> > > > my opinion it was mostly due to his movement difficulties

> > preventing

> > > > him from getting to the toilet and taking down his pants fast

> > enough.

> > > > He has not been incontinent on any other occasion and still

goes

>

> > to

> > > > the bathroom by himself. However, I am already starting to

look

> > at

> > > > adult diapers and incontinence products as a back-up plan,

> > especially

> > > > for the times when he is outside the retirement home (either

on

> > > > outings, or when we take him out for lunch or to visit

relatives

>

> > and

> > > > friends). Our goal is to preserve his dignity as much as

> > possible,

> > > > especially avoiding situation in which he might feel

embarassed

> > in

> > > > front of others.

> > > >

> > > > As usual, I count on my friends at this forum to provide me

with

>

> > > > further insight, advice and maybe words of encouragement on

any

> > of

> > > > these issues. Your input and presence means the world to me

and

> I

> > > > thank each and everyone of you for your continuing help and

> > support.

> > > >

> > > > With much love,

> > > > Shomy.

> > > >

> > >

> >

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

> >

> > Welcome to LBDcaregivers.

> >

September 24, 2008

Thank you ,

My Dad would not accept the restraints yet, it's a bit too early for

him. Plus, there is no way he could spend the whole night in bed. He

hasn't slept all the way through a night for the last 3 years. When

he gets sleepless, he needs to get up and go to another area

otherwise he'll get agitated. At night, he sleeps for about 2 hours

and around 1 am he gets up and goes to the common areas. He just

simply won't stay in his room. We just want to make sure that he gets

help each time he gets out of bed.

Shomy

> > > > > >

> > > > > > Hello to all my dear friends at LBD Caregivers,

> > > > > >

> > > > > > As you may recall, I was in Toronto for a whole month and

> am

> > now

> > >

> > > > back

> > > > > > in Italy. I'm sorry I couldn't write much from Toronto

> > > for a

> > > > variety

> > > > > > of reasons (moving to a new house, changed our internet

> > server,

> > > > very

> > > > > > busy with Dad and other errands, etc...) But now, I can

> make

> > a

> > > > full

> > > > > > report of the situation and hopefully get some feedback

and

> > > > advice

> > > > > > from you.

> > > > > >

> > > > > > COGNITION: I noticed right away a great improvement in

Dad's

> > >

> > > > mental

> > > > > > abilities and cognition. We think this is due to Exelon.

He

> > is

> > > > always

> > > > > > coherent in his thoughts, never manifested any

> inappropriate

> > > > emotions

> > > > > > or behaviour, etc. He still is very sleepy during the day

> and

> > > > does

> > > > > > not sleep at all during most of the nights. His speech is

> > always

> > >

> > > > > > coherent, however, his words get slurred sometimes and

there

> > > have

> > > > > > been episodes where he keeps saying that he has something

to

> > > tell

> > > > me

> > > > > > but cannot grasp at the idea that he wants to convey.

> > > > > >

> > > > > > His living conditions: as you recall, we were very

> concerned

> > > > about

> > > > > > him being on the locked dementia floor (in a private

> > retirement

> > > > > > home). In fact, he has become more withdrawn and

> uninterested

> > in

> > >

> > > > his

> > > > > > surroundings. He definitely suffers emtionally by being

> > > > surrounded

> > > > > > with severely impaired residents and the very fact that

he

> is

> > > > > > restricted to that floor. However, I found the staff on

the

> > > > dementia

> > > > > > floor to be much more caring and attentive than on other

> > floors

> > > > and

> > > > > > there are also a much larger ratio of care-givers per

> resident

> > > on

> > > > > > this floor. The hygiene issues were not as bad as I had

> > thought

> > > > > > however, on some days the smell of urine on that floor is

> > > > > > perceptible.

> > > > > >

> > > > > > MOVEMENT PROBLEMS: Dad's movements have hugely

deteriorated.

> > > This

> > > >

> > > > was

> > > > > > quite terrible to see: he still walks with his walker,

but

> due

> > > to

> > > > his

> > > > > > visuo-spatial dysfunctions, he goes off the paths or

comes

> > very

> > > > close

> > > > > > to and bumps against objects, etc... His balance when

> sitting

> > > > down or

> > > > > > getting up from chairs or his bed is terrible. Often when

> he

> > has

> > >

> > > > to

> > > > > > move his feet to get close to a chair to sit down, you

can

> > > > actually

> > > > > > see that he tries to move his feet but it's as if they are

> > > glued

> > > > to

> > > > > > the floor. On several occasions I have had to lift his

foot

> > off

> > > > the

> > > > > > ground and initiate the movement for him and then he is

> able

> > to

> > > > > > continue. In fact he has had several falls during August,

> one

> > of

> > >

> > > > > > which necessitated an ambulance trip to the ER and

several

> X-

> > > > rays:

> > > > > > fortunately nothing was broken or fractured, but there

was a

> > > huge

> > > > > > bruise and a very large hematoma which is still being re-

> > > > absorbed.

> > > > > >

> > > > > > DEPRESSION: We took Dad for his regular appointment with

> his

> > > > > > cognitive neurologist (the one who had diagnosed LBD from

> the

> > > > very

> > > > > > first visit). They found that he was depressed and

> prescribed

> > > > Celexa

> > > > > > (Citalopram) to be given to him with gradually increasing

> > doses

> > > > to a

> > > > > > maximum of 20mg per day. We have already seen an

> improvement

> > in

> > > > his

> > > > > > mood and awareness since he has been on Celexa.

> > > > > >

> > > > > > SINEMET: The doctors also decided that due to his

> increasing

> > > > > > incidents of falls, it was now time to address the

movement

> > > > problems:

> > > > > > they prescribed Sinement 100/25 tablets. These tabs were

to

> > > start

> > > > two

> > > > > > weeks after the start of Celexa and the dose is as

follows:

> 1

> > > tab

> > > > a

> > > > > > day for 3 days and if tolerated, 2 tabs a day for the

next 3

> > > days

> > > > and

> > > > > > if still well-tolerated, 3 tabs a day and maintain at 3

> tabs

> > a

> > > > day.

> > > > > > He is still taking 4.5mg of Exelon twice a day (9 mg

total

> > > > daily). We

> > > > > > hope to see an improvement in his movement problems but

> worry

> > > > that

> > > > > > the Sinement might trigger hallucinations and delusions

and

> > > > erratic

> > > > > > behaviour. Although Dad had only two episodes of

> > hallucinations

> > > > (more

> > > > > > like vivid dreams) only in the beginning of his illness

and

> > > never

> > > > > > again, so maybe he's not prone to hallucinations.

However, I

> > > am

> > > > > > keeping my fingers crossed and hope that Sinemet will not

> > worsen

> > >

> > > > his

> > > > > > cognitive functioning.

> > > > > >

> > > > > > OTHER RESIDENCES: I had also compiled a list of other

> > possible

> > > > > > retirement homes and looked them up. They were all very

> good

> > but

> > >

> > > > only

> > > > > > one of them seemed to have the facilities to provide

> > increasing

> > > > care

> > > > > > suitable for Dad's increasing needs in the future. However

> > > we

> > > > > > realized that Dad's current retirement home was still the

> > > best

> > > > one

> > > > > > around (and unfortunately the most expensive one too!)

> which

> > > > could

> > > > > > provide all levels of care. So we decided to bite the

> bullet

> > and

> > >

> > > > keep

> > > > > > Dad at his current facility, and try to reason with the

> > > directors

> > > > to

> > > > > > give him more personlized care suitable for his

particular

> > > > condition.

> > > > > >

> > > > > > MEETING WITH RETIREMENT HOME DIRECTORS AND STAFF: After

> > several

> > > > > > meetings with individual directors and staff, we had a

> > meeting

> > > > with

> > > > > > the general manager of the retirement home and the

director

> > of

> > > > care

> > > > > > of his floor, during which we discussed the letter

written

> by

> > > his

> > > > > > cognitive neurologist who emphasized the fact that Dad's

> > > stay on

> > > > a

> > > > > > locked floor would damage him both emotionally and

> > cognitively.

> > > > We

> > > > > > also discussed all other issues involved in his care and

> > brought

> > >

> > > > up

> > > > > > all our concerns and complaints. We all agreed that due

to

> > his

> > > > recent

> > > > > > falls and increasing disability, he does need the extra

> care

> > > > given on

> > > > > > that floor, but they promised to take him down to the

other

> > > > floors

> > > > > > and especially to the common areas indoors and outdoors

so

> > that

> > > > he

> > > > > > can benefit from mingling with more highly functioning

> > residents

> > >

> > > > and

> > > > > > participate in the planned activities. We also asked for

> the

> > > > staff to

> > > > > > watch him when he tries to get up from a sitting position

> and

> > > > make

> > > > > > sure he doesn't fall. In general, we also feel that Dad

can

> > > use

> > > > the

> > > > > > extra care given on the dementia floor, but he should not

> be

> > > > treated

> > > > > > the same as residents who are totally cognitively

impaired.

> > Even

> > >

> > > > the

> > > > > > directors agreed that Dad is definitely more mentally

> stable

> > > > > > and " normal " than the other residents on that floor

> > > and his

> > > > plan

> > > > of

> > > > > > care and activities should reflect this difference.. We

got

> > their

> > >

> > > > > > agreement and promise that they would organize Dad's days

> > > and

> > > > > > evenings in such way as to allow him to move around the

> > entire

> > > > > > facility and participate in as many programs as possible,

> > while

> > > > safe-

> > > > > > guarding his physical safety and watching out for falls.

> > > > > >

> > > > > > New Problem: I noticed that on two occasions when I was

with

> > > Dad,

> > > > he

> > > > > > said that he wanted to go to the bathroom and got up to

go.

> > But

> > > > in

> > > > > > front of the toilet, he must have locked up and had great

> > > > difficulty

> > > > > > pulling down his pants, etc... and unfortunately he lost

> > bladder

> > >

> > > > > > control and wet his pants. This happened only in the

> bathroom

> > > and

> > > > in

> > > > > > my opinion it was mostly due to his movement difficulties

> > > > preventing

> > > > > > him from getting to the toilet and taking down his pants

> fast

> > > > enough.

> > > > > > He has not been incontinent on any other occasion and

still

> > goes

> > >

> > > > to

> > > > > > the bathroom by himself. However, I am already starting

to

> > look

> > > > at

> > > > > > adult diapers and incontinence products as a back-up

plan,

> > > > especially

> > > > > > for the times when he is outside the retirement home

> (either

> > on

> > > > > > outings, or when we take him out for lunch or to visit

> > relatives

> > >

> > > > and

> > > > > > friends). Our goal is to preserve his dignity as much as

> > > > possible,

> > > > > > especially avoiding situation in which he might feel

> > embarassed

> > > > in

> > > > > > front of others.

> > > > > >

> > > > > > As usual, I count on my friends at this forum to provide

me

> > with

> > >

> > > > > > further insight, advice and maybe words of encouragement

on

> > any

> > > > of

> > > > > > these issues. Your input and presence means the world to

me

> > and

> > > I

> > > > > > thank each and everyone of you for your continuing help

and

> > > > support.

> > > > > >

> > > > > > With much love,

> > > > > > Shomy.

> > > > > >

> > > > >

> > > >

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

> > > >

> > > > Welcome to LBDcaregivers.

> > > >

September 24, 2008

Donna,

I wish he would sit still in an easy chair and just nap there during

the day. Unfortunately, he won't do that. He will sit in a chair,

fall asleep for a few minutes, then get up and go to his room, get

undressed and go to bed. I couldn't even get him to go to bed with

his clothes on during the day. I told him that his clothes wouldn't

get wrinkled and he could easily just lie in bed with his clothes on.

But he won't do it. He says he's not comfortable sleeping fully

dressed.

It would be so much easier and safer if he would just get up in the

morning, get dressed, go to the common areas and just doze off or nap

in a nice easy chair the whole day. Our problem is that he keeps

getting up once every few hours, all throughout the day.

Shomy.

> > > > > >

> > > > > > Hello to all my dear friends at LBD Caregivers,

> > > > > >

> > > > > > As you may recall, I was in Toronto for a whole month and

> am

> > now

> > >

> > > > back

> > > > > > in Italy. I'm sorry I couldn't write much from Toronto

> > > for a

> > > > variety

> > > > > > of reasons (moving to a new house, changed our internet

> > server,

> > > > very

> > > > > > busy with Dad and other errands, etc...) But now, I can

> make

> > a

> > > > full

> > > > > > report of the situation and hopefully get some feedback

and

> > > > advice

> > > > > > from you.

> > > > > >

> > > > > > COGNITION: I noticed right away a great improvement in

Dad's

> > >

> > > > mental

> > > > > > abilities and cognition. We think this is due to Exelon.

He

> > is

> > > > always

> > > > > > coherent in his thoughts, never manifested any

> inappropriate

> > > > emotions

> > > > > > or behaviour, etc. He still is very sleepy during the day

> and

> > > > does

> > > > > > not sleep at all during most of the nights. His speech is

> > always

> > >

> > > > > > coherent, however, his words get slurred sometimes and

there

> > > have

> > > > > > been episodes where he keeps saying that he has something

to

> > > tell

> > > > me

> > > > > > but cannot grasp at the idea that he wants to convey.

> > > > > >

> > > > > > His living conditions: as you recall, we were very

> concerned

> > > > about

> > > > > > him being on the locked dementia floor (in a private

> > retirement

> > > > > > home). In fact, he has become more withdrawn and

> uninterested

> > in

> > >

> > > > his

> > > > > > surroundings. He definitely suffers emtionally by being

> > > > surrounded

> > > > > > with severely impaired residents and the very fact that

he

> is

> > > > > > restricted to that floor. However, I found the staff on

the

> > > > dementia

> > > > > > floor to be much more caring and attentive than on other

> > floors

> > > > and

> > > > > > there are also a much larger ratio of care-givers per

> resident

> > > on

> > > > > > this floor. The hygiene issues were not as bad as I had

> > thought

> > > > > > however, on some days the smell of urine on that floor is

> > > > > > perceptible.

> > > > > >

> > > > > > MOVEMENT PROBLEMS: Dad's movements have hugely

deteriorated.

> > > This

> > > >

> > > > was

> > > > > > quite terrible to see: he still walks with his walker,

but

> due

> > > to

> > > > his

> > > > > > visuo-spatial dysfunctions, he goes off the paths or

comes

> > very

> > > > close

> > > > > > to and bumps against objects, etc... His balance when

> sitting

> > > > down or

> > > > > > getting up from chairs or his bed is terrible. Often when

> he

> > has

> > >

> > > > to

> > > > > > move his feet to get close to a chair to sit down, you

can

> > > > actually

> > > > > > see that he tries to move his feet but it's as if they are

> > > glued

> > > > to

> > > > > > the floor. On several occasions I have had to lift his

foot

> > off

> > > > the

> > > > > > ground and initiate the movement for him and then he is

> able

> > to

> > > > > > continue. In fact he has had several falls during August,

> one

> > of

> > >

> > > > > > which necessitated an ambulance trip to the ER and

several

> X-

> > > > rays:

> > > > > > fortunately nothing was broken or fractured, but there

was a

> > > huge

> > > > > > bruise and a very large hematoma which is still being re-

> > > > absorbed.

> > > > > >

> > > > > > DEPRESSION: We took Dad for his regular appointment with

> his

> > > > > > cognitive neurologist (the one who had diagnosed LBD from

> the

> > > > very

> > > > > > first visit). They found that he was depressed and

> prescribed

> > > > Celexa

> > > > > > (Citalopram) to be given to him with gradually increasing

> > doses

> > > > to a

> > > > > > maximum of 20mg per day. We have already seen an

> improvement

> > in

> > > > his

> > > > > > mood and awareness since he has been on Celexa.

> > > > > >

> > > > > > SINEMET: The doctors also decided that due to his

> increasing

> > > > > > incidents of falls, it was now time to address the

movement

> > > > problems:

> > > > > > they prescribed Sinement 100/25 tablets. These tabs were

to

> > > start

> > > > two

> > > > > > weeks after the start of Celexa and the dose is as

follows:

> 1

> > > tab

> > > > a

> > > > > > day for 3 days and if tolerated, 2 tabs a day for the

next 3

> > > days

> > > > and

> > > > > > if still well-tolerated, 3 tabs a day and maintain at 3

> tabs

> > a

> > > > day.

> > > > > > He is still taking 4.5mg of Exelon twice a day (9 mg

total

> > > > daily). We

> > > > > > hope to see an improvement in his movement problems but

> worry

> > > > that

> > > > > > the Sinement might trigger hallucinations and delusions

and

> > > > erratic

> > > > > > behaviour. Although Dad had only two episodes of

> > hallucinations

> > > > (more

> > > > > > like vivid dreams) only in the beginning of his illness

and

> > > never

> > > > > > again, so maybe he's not prone to hallucinations.

However, I

> > > am

> > > > > > keeping my fingers crossed and hope that Sinemet will not

> > worsen

> > >

> > > > his

> > > > > > cognitive functioning.

> > > > > >

> > > > > > OTHER RESIDENCES: I had also compiled a list of other

> > possible

> > > > > > retirement homes and looked them up. They were all very

> good

> > but

> > >

> > > > only

> > > > > > one of them seemed to have the facilities to provide

> > increasing

> > > > care

> > > > > > suitable for Dad's increasing needs in the future. However

> > > we

> > > > > > realized that Dad's current retirement home was still the

> > > best

> > > > one

> > > > > > around (and unfortunately the most expensive one too!)

> which

> > > > could

> > > > > > provide all levels of care. So we decided to bite the

> bullet

> > and

> > >

> > > > keep

> > > > > > Dad at his current facility, and try to reason with the

> > > directors

> > > > to

> > > > > > give him more personlized care suitable for his

particular

> > > > condition.

> > > > > >

> > > > > > MEETING WITH RETIREMENT HOME DIRECTORS AND STAFF: After

> > several

> > > > > > meetings with individual directors and staff, we had a

> > meeting

> > > > with

> > > > > > the general manager of the retirement home and the

director

> > of

> > > > care

> > > > > > of his floor, during which we discussed the letter

written

> by

> > > his

> > > > > > cognitive neurologist who emphasized the fact that Dad's

> > > stay on

> > > > a

> > > > > > locked floor would damage him both emotionally and

> > cognitively.

> > > > We

> > > > > > also discussed all other issues involved in his care and

> > brought

> > >

> > > > up

> > > > > > all our concerns and complaints. We all agreed that due

to

> > his

> > > > recent

> > > > > > falls and increasing disability, he does need the extra

> care

> > > > given on

> > > > > > that floor, but they promised to take him down to the

other

> > > > floors

> > > > > > and especially to the common areas indoors and outdoors

so

> > that

> > > > he

> > > > > > can benefit from mingling with more highly functioning

> > residents

> > >

> > > > and

> > > > > > participate in the planned activities. We also asked for

> the

> > > > staff to

> > > > > > watch him when he tries to get up from a sitting position

> and

> > > > make

> > > > > > sure he doesn't fall. In general, we also feel that Dad

can

> > > use

> > > > the

> > > > > > extra care given on the dementia floor, but he should not

> be

> > > > treated

> > > > > > the same as residents who are totally cognitively

impaired.

> > Even

> > >

> > > > the

> > > > > > directors agreed that Dad is definitely more mentally

> stable

> > > > > > and " normal " than the other residents on that floor

> > > and his

> > > > plan

> > > > of

> > > > > > care and activities should reflect this difference. We

got

> > their

> > >

> > > > > > agreement and promise that they would organize Dad's days

> > > and

> > > > > > evenings in such way as to allow him to move around the

> > entire

> > > > > > facility and participate in as many programs as possible,

> > while

> > > > safe-

> > > > > > guarding his physical safety and watching out for falls.

> > > > > >

> > > > > > New Problem: I noticed that on two occasions when I was

with

> > > Dad,

> > > > he

> > > > > > said that he wanted to go to the bathroom and got up to

go.

> > But

> > > > in

> > > > > > front of the toilet, he must have locked up and had great

> > > > difficulty

> > > > > > pulling down his pants, etc... and unfortunately he lost

> > bladder

> > >

> > > > > > control and wet his pants. This happened only in the

> bathroom

> > > and

> > > > in

> > > > > > my opinion it was mostly due to his movement difficulties

> > > > preventing

> > > > > > him from getting to the toilet and taking down his pants

> fast

> > > > enough.

> > > > > > He has not been incontinent on any other occasion and

still

> > goes

> > >

> > > > to

> > > > > > the bathroom by himself. However, I am already starting

to

> > look

> > > > at

> > > > > > adult diapers and incontinence products as a back-up

plan,

> > > > especially

> > > > > > for the times when he is outside the retirement home

> (either

> > on

> > > > > > outings, or when we take him out for lunch or to visit

> > relatives

> > >

> > > > and

> > > > > > friends). Our goal is to preserve his dignity as much as

> > > > possible,

> > > > > > especially avoiding situation in which he might feel

> > embarassed

> > > > in

> > > > > > front of others.

> > > > > >

> > > > > > As usual, I count on my friends at this forum to provide

me

> > with

> > >

> > > > > > further insight, advice and maybe words of encouragement

on

> > any

> > > > of

> > > > > > these issues. Your input and presence means the world to

me

> > and

> > > I

> > > > > > thank each and everyone of you for your continuing help

and

> > > > support.

> > > > > >

> > > > > > With much love,

> > > > > > Shomy.

> > > > > >

> > > > >

> > > >

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

> > > >

> > > > Welcome to LBDcaregivers.

> > > >

September 24, 2008

Hi Shomy,

In the states, a therapist or nurse comes to check out the house also. I have

actually had a couple people look at the living situation.. Medicare pays for

some equipment but there are limits like only one device for walking in 5yrs or

something like that. Our local suppliers are expensive so I have purchased most

of the equipment, which is the same or better than the local supplier, on-line

at a lower price. One of her therapists remarked at the quality of her

hemi-walker as being better than any she had seen and was amazed at how

inexpensive it was. (Invacare is the brand) I don't think being out of the

country is an issue for shipment.

www.carepathways.com

If you look around this site, you will find many useful items to include

personal alarms that can be attached to a bed or chair. One of the ideas given

to me when my Mom was more mobile: to put up railings along the walls that she

could hold on to while walking and use motion detected lights in the hallways.

If your Dad can feel himself getting tired/falling maybe one of the rolling

walkers w/ a seat so he can rest. Just brainstorming...

Best of luck on your journey,

Kat in IL

Re: Cognition vs. Movement problems

Thanks Donna,

Actually Dad is in Toronto, Canada and our health care system is

quite different from the States. Also, the companies who supply

health care equipment are different. I'm gonna have to look around

for myself to find local suppliers.

Another thing that we do in Canada, is that we get an occupational

therapist come in and suggest a list of equipment we should get for

Dad and she will also give us names of suppliers. I think I'm gonna

take this route.

Shomy.

> > > > >

> > > > > Hello to all my dear friends at LBD Caregivers,

> > > > >

> > > > > As you may recall, I was in Toronto for a whole month and

am

> now

> >

> > > back

> > > > > in Italy. I'm sorry I couldn't write much from Toronto

> > for a

> > > variety

> > > > > of reasons (moving to a new house, changed our internet

> server,

> > > very

> > > > > busy with Dad and other errands, etc...) But now, I can

make

> a

> > > full

> > > > > report of the situation and hopefully get some feedback and

> > > advice

> > > > > from you..

> > > > >

> > > > > COGNITION: I noticed right away a great improvement in Dad's

> >

> > > mental

> > > > > abilities and cognition. We think this is due to Exelon. He

> is

> > > always

> > > > > coherent in his thoughts, never manifested any

inappropriate

> > > emotions

> > > > > or behaviour, etc. He still is very sleepy during the day

and

> > > does

> > > > > not sleep at all during most of the nights. His speech is

> always

> >

> > > > > coherent, however, his words get slurred sometimes and there

> > have

> > > > > been episodes where he keeps saying that he has something to

> > tell

> > > me

> > > > > but cannot grasp at the idea that he wants to convey.

> > > > >

> > > > > His living conditions: as you recall, we were very

concerned

> > > about

> > > > > him being on the locked dementia floor (in a private

> retirement

> > > > > home). In fact, he has become more withdrawn and

uninterested

> in

> >

> > > his

> > > > > surroundings. He definitely suffers emtionally by being

> > > surrounded

> > > > > with severely impaired residents and the very fact that he

is

> > > > > restricted to that floor. However, I found the staff on the

> > > dementia

> > > > > floor to be much more caring and attentive than on other

> floors

> > > and

> > > > > there are also a much larger ratio of care-givers per

resident

> > on

> > > > > this floor. The hygiene issues were not as bad as I had

> thought

> > > > > however, on some days the smell of urine on that floor is

> > > > > perceptible.

> > > > >

> > > > > MOVEMENT PROBLEMS: Dad's movements have hugely deteriorated.

> > This

> > >

> > > was

> > > > > quite terrible to see: he still walks with his walker, but

due

> > to

> > > his

> > > > > visuo-spatial dysfunctions, he goes off the paths or comes

> very

> > > close

> > > > > to and bumps against objects, etc... His balance when

sitting

> > > down or

> > > > > getting up from chairs or his bed is terrible. Often when

he

> has

> >

> > > to

> > > > > move his feet to get close to a chair to sit down, you can

> > > actually

> > > > > see that he tries to move his feet but it's as if they are

> > glued

> > > to

> > > > > the floor. On several occasions I have had to lift his foot

> off

> > > the

> > > > > ground and initiate the movement for him and then he is

able

> to

> > > > > continue. In fact he has had several falls during August,

one

> of

> >

> > > > > which necessitated an ambulance trip to the ER and several

X-

> > > rays:

> > > > > fortunately nothing was broken or fractured, but there was a

> > huge

> > > > > bruise and a very large hematoma which is still being re-

> > > absorbed.

> > > > >

> > > > > DEPRESSION: We took Dad for his regular appointment with

his

> > > > > cognitive neurologist (the one who had diagnosed LBD from

the

> > > very

> > > > > first visit). They found that he was depressed and

prescribed

> > > Celexa

> > > > > (Citalopram) to be given to him with gradually increasing

> doses

> > > to a

> > > > > maximum of 20mg per day. We have already seen an

improvement

> in

> > > his

> > > > > mood and awareness since he has been on Celexa.

> > > > >

> > > > > SINEMET: The doctors also decided that due to his

increasing

> > > > > incidents of falls, it was now time to address the movement

> > > problems:

> > > > > they prescribed Sinement 100/25 tablets. These tabs were to

> > start

> > > two

> > > > > weeks after the start of Celexa and the dose is as follows:

1

> > tab

> > > a

> > > > > day for 3 days and if tolerated, 2 tabs a day for the next 3

> > days

> > > and

> > > > > if still well-tolerated, 3 tabs a day and maintain at 3

tabs

> a

> > > day.

> > > > > He is still taking 4.5mg of Exelon twice a day (9 mg total

> > > daily). We

> > > > > hope to see an improvement in his movement problems but

worry

> > > that

> > > > > the Sinement might trigger hallucinations and delusions and

> > > erratic

> > > > > behaviour. Although Dad had only two episodes of

> hallucinations

> > > (more

> > > > > like vivid dreams) only in the beginning of his illness and

> > never

> > > > > again, so maybe he's not prone to hallucinations. However, I

> > am

> > > > > keeping my fingers crossed and hope that Sinemet will not

> worsen

> >

> > > his

> > > > > cognitive functioning.

> > > > >

> > > > > OTHER RESIDENCES: I had also compiled a list of other

> possible

> > > > > retirement homes and looked them up. They were all very

good

> but

> >

> > > only

> > > > > one of them seemed to have the facilities to provide

> increasing

> > > care

> > > > > suitable for Dad's increasing needs in the future. However

> > we

> > > > > realized that Dad's current retirement home was still the

> > best

> > > one

> > > > > around (and unfortunately the most expensive one too!)

which

> > > could

> > > > > provide all levels of care. So we decided to bite the

bullet

> and

> >

> > > keep

> > > > > Dad at his current facility, and try to reason with the

> > directors

> > > to

> > > > > give him more personlized care suitable for his particular

> > > condition.

> > > > >

> > > > > MEETING WITH RETIREMENT HOME DIRECTORS AND STAFF: After

> several

> > > > > meetings with individual directors and staff, we had a

> meeting

> > > with

> > > > > the general manager of the retirement home and the director

> of

> > > care

> > > > > of his floor, during which we discussed the letter written

by

> > his

> > > > > cognitive neurologist who emphasized the fact that Dad's

> > stay on

> > > a

> > > > > locked floor would damage him both emotionally and

> cognitively.

> > > We

> > > > > also discussed all other issues involved in his care and

> brought

> >

> > > up

> > > > > all our concerns and complaints. We all agreed that due to

> his

> > > recent

> > > > > falls and increasing disability, he does need the extra

care

> > > given on

> > > > > that floor, but they promised to take him down to the other

> > > floors

> > > > > and especially to the common areas indoors and outdoors so

> that

> > > he

> > > > > can benefit from mingling with more highly functioning

> residents

> >

> > > and

> > > > > participate in the planned activities. We also asked for

the

> > > staff to

> > > > > watch him when he tries to get up from a sitting position

and

> > > make

> > > > > sure he doesn't fall.. In general, we also feel that Dad can

> > use

> > > the

> > > > > extra care given on the dementia floor, but he should not

be

> > > treated

> > > > > the same as residents who are totally cognitively impaired.

> Even

> >

> > > the

> > > > > directors agreed that Dad is definitely more mentally

stable

> > > > > and " normal " than the other residents on that floor

> > and his

> > > plan

> > > of

> > > > > care and activities should reflect this difference. We got

> their

> >

> > > > > agreement and promise that they would organize Dad's days

> > and

> > > > > evenings in such way as to allow him to move around the

> entire

> > > > > facility and participate in as many programs as possible,

> while

> > > safe-

> > > > > guarding his physical safety and watching out for falls.

> > > > >

> > > > > New Problem: I noticed that on two occasions when I was with

> > Dad,

> > > he

> > > > > said that he wanted to go to the bathroom and got up to go.

> But

> > > in

> > > > > front of the toilet, he must have locked up and had great

> > > difficulty

> > > > > pulling down his pants, etc... and unfortunately he lost

> bladder

> >

> > > > > control and wet his pants. This happened only in the

bathroom

> > and

> > > in

> > > > > my opinion it was mostly due to his movement difficulties

> > > preventing

> > > > > him from getting to the toilet and taking down his pants

fast

> > > enough.

> > > > > He has not been incontinent on any other occasion and still

> goes

> >

> > > to

> > > > > the bathroom by himself. However, I am already starting to

> look

> > > at

> > > > > adult diapers and incontinence products as a back-up plan,

> > > especially

> > > > > for the times when he is outside the retirement home

(either

> on

> > > > > outings, or when we take him out for lunch or to visit

> relatives

> >

> > > and

> > > > > friends).. Our goal is to preserve his dignity as much as

> > > possible,

> > > > > especially avoiding situation in which he might feel

> embarassed

> > > in

> > > > > front of others.

> > > > >

> > > > > As usual, I count on my friends at this forum to provide me

> with

> >

> > > > > further insight, advice and maybe words of encouragement on

> any

> > > of

> > > > > these issues. Your input and presence means the world to me

> and

> > I

> > > > > thank each and everyone of you for your continuing help and

> > > support.

> > > > >

> > > > > With much love,

> > > > > Shomy.

> > > > >

> > > >

> > >

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

> > >

> > > Welcome to LBDcaregivers.

> > >

September 25, 2008

Hi ,

Thank you for the care pathways website. I will definitely look into

it.

Dad already has a really good walker with a rest seat and very good

brakes. He doesn't take a step without it. His problem is getting out

of bed: he can't always position himself properly to use the walker

even if it's right next to his bed, and then he falls. What is really

amazing is that once he gets in the right position with the walker,

he walks (or rather shuffles) pretty good. He can go surprisingly

fast too. It's just his balance and the fine-tuned movements that are

not good. I have seen so many times get up from a chair and his

walker is right beside the chair, but he just can't get his feet to

position themselves in a way to be able to use the walker to get up.

It is so frustrating to see, and it must be a lot more frustrating

for him to go thru this. He is a very patient man and never complains.

Shomy.

> > > > > >

> > > > > > Hello to all my dear friends at LBD Caregivers,

> > > > > >

> > > > > > As you may recall, I was in Toronto for a whole month and

> am

> > now

> > >

> > > > back

> > > > > > in Italy. I'm sorry I couldn't write much from Toronto

> > > for a

> > > > variety

> > > > > > of reasons (moving to a new house, changed our internet

> > server,

> > > > very

> > > > > > busy with Dad and other errands, etc...) But now, I can

> make

> > a

> > > > full

> > > > > > report of the situation and hopefully get some feedback

and

> > > > advice

> > > > > > from you..

> > > > > >

> > > > > > COGNITION: I noticed right away a great improvement in

Dad's

> > >

> > > > mental

> > > > > > abilities and cognition. We think this is due to Exelon.

He

> > is

> > > > always

> > > > > > coherent in his thoughts, never manifested any

> inappropriate

> > > > emotions

> > > > > > or behaviour, etc. He still is very sleepy during the day

> and

> > > > does

> > > > > > not sleep at all during most of the nights. His speech is

> > always

> > >

> > > > > > coherent, however, his words get slurred sometimes and

there

> > > have

> > > > > > been episodes where he keeps saying that he has something

to

> > > tell

> > > > me

> > > > > > but cannot grasp at the idea that he wants to convey.

> > > > > >

> > > > > > His living conditions: as you recall, we were very

> concerned

> > > > about

> > > > > > him being on the locked dementia floor (in a private

> > retirement

> > > > > > home). In fact, he has become more withdrawn and

> uninterested

> > in

> > >

> > > > his

> > > > > > surroundings. He definitely suffers emtionally by being

> > > > surrounded

> > > > > > with severely impaired residents and the very fact that

he

> is

> > > > > > restricted to that floor. However, I found the staff on

the

> > > > dementia

> > > > > > floor to be much more caring and attentive than on other

> > floors

> > > > and

> > > > > > there are also a much larger ratio of care-givers per

> resident

> > > on

> > > > > > this floor. The hygiene issues were not as bad as I had

> > thought

> > > > > > however, on some days the smell of urine on that floor is

> > > > > > perceptible.

> > > > > >

> > > > > > MOVEMENT PROBLEMS: Dad's movements have hugely

deteriorated.

> > > This

> > > >

> > > > was

> > > > > > quite terrible to see: he still walks with his walker,

but

> due

> > > to

> > > > his

> > > > > > visuo-spatial dysfunctions, he goes off the paths or

comes

> > very

> > > > close

> > > > > > to and bumps against objects, etc... His balance when

> sitting

> > > > down or

> > > > > > getting up from chairs or his bed is terrible. Often when

> he

> > has

> > >

> > > > to

> > > > > > move his feet to get close to a chair to sit down, you

can

> > > > actually

> > > > > > see that he tries to move his feet but it's as if they are

> > > glued

> > > > to

> > > > > > the floor. On several occasions I have had to lift his

foot

> > off

> > > > the

> > > > > > ground and initiate the movement for him and then he is

> able

> > to

> > > > > > continue. In fact he has had several falls during August,

> one

> > of

> > >

> > > > > > which necessitated an ambulance trip to the ER and

several

> X-

> > > > rays:

> > > > > > fortunately nothing was broken or fractured, but there

was a

> > > huge

> > > > > > bruise and a very large hematoma which is still being re-

> > > > absorbed.

> > > > > >

> > > > > > DEPRESSION: We took Dad for his regular appointment with

> his

> > > > > > cognitive neurologist (the one who had diagnosed LBD from

> the

> > > > very

> > > > > > first visit). They found that he was depressed and

> prescribed

> > > > Celexa

> > > > > > (Citalopram) to be given to him with gradually increasing

> > doses

> > > > to a

> > > > > > maximum of 20mg per day. We have already seen an

> improvement

> > in

> > > > his

> > > > > > mood and awareness since he has been on Celexa.

> > > > > >

> > > > > > SINEMET: The doctors also decided that due to his

> increasing

> > > > > > incidents of falls, it was now time to address the

movement

> > > > problems:

> > > > > > they prescribed Sinement 100/25 tablets. These tabs were

to

> > > start

> > > > two

> > > > > > weeks after the start of Celexa and the dose is as

follows:

> 1

> > > tab

> > > > a

> > > > > > day for 3 days and if tolerated, 2 tabs a day for the

next 3

> > > days

> > > > and

> > > > > > if still well-tolerated, 3 tabs a day and maintain at 3

> tabs

> > a

> > > > day.

> > > > > > He is still taking 4.5mg of Exelon twice a day (9 mg

total

> > > > daily). We

> > > > > > hope to see an improvement in his movement problems but

> worry

> > > > that

> > > > > > the Sinement might trigger hallucinations and delusions

and

> > > > erratic

> > > > > > behaviour. Although Dad had only two episodes of

> > hallucinations

> > > > (more

> > > > > > like vivid dreams) only in the beginning of his illness

and

> > > never

> > > > > > again, so maybe he's not prone to hallucinations.

However, I

> > > am

> > > > > > keeping my fingers crossed and hope that Sinemet will not

> > worsen

> > >

> > > > his

> > > > > > cognitive functioning.

> > > > > >

> > > > > > OTHER RESIDENCES: I had also compiled a list of other

> > possible

> > > > > > retirement homes and looked them up. They were all very

> good

> > but

> > >

> > > > only

> > > > > > one of them seemed to have the facilities to provide

> > increasing

> > > > care

> > > > > > suitable for Dad's increasing needs in the future. However

> > > we

> > > > > > realized that Dad's current retirement home was still the

> > > best

> > > > one

> > > > > > around (and unfortunately the most expensive one too!)

> which

> > > > could

> > > > > > provide all levels of care. So we decided to bite the

> bullet

> > and

> > >

> > > > keep

> > > > > > Dad at his current facility, and try to reason with the

> > > directors

> > > > to

> > > > > > give him more personlized care suitable for his

particular

> > > > condition.

> > > > > >

> > > > > > MEETING WITH RETIREMENT HOME DIRECTORS AND STAFF: After

> > several

> > > > > > meetings with individual directors and staff, we had a

> > meeting

> > > > with

> > > > > > the general manager of the retirement home and the

director

> > of

> > > > care

> > > > > > of his floor, during which we discussed the letter

written

> by

> > > his

> > > > > > cognitive neurologist who emphasized the fact that Dad's

> > > stay on

> > > > a

> > > > > > locked floor would damage him both emotionally and

> > cognitively.

> > > > We

> > > > > > also discussed all other issues involved in his care and

> > brought

> > >

> > > > up

> > > > > > all our concerns and complaints. We all agreed that due

to

> > his

> > > > recent

> > > > > > falls and increasing disability, he does need the extra

> care

> > > > given on

> > > > > > that floor, but they promised to take him down to the

other

> > > > floors

> > > > > > and especially to the common areas indoors and outdoors

so

> > that

> > > > he

> > > > > > can benefit from mingling with more highly functioning

> > residents

> > >

> > > > and

> > > > > > participate in the planned activities. We also asked for

> the

> > > > staff to

> > > > > > watch him when he tries to get up from a sitting position

> and

> > > > make

> > > > > > sure he doesn't fall.. In general, we also feel that Dad

can

> > > use

> > > > the

> > > > > > extra care given on the dementia floor, but he should not

> be

> > > > treated

> > > > > > the same as residents who are totally cognitively

impaired.

> > Even

> > >

> > > > the

> > > > > > directors agreed that Dad is definitely more mentally

> stable

> > > > > > and " normal " than the other residents on that floor

> > > and his

> > > > plan

> > > > of

> > > > > > care and activities should reflect this difference. We

got

> > their

> > >

> > > > > > agreement and promise that they would organize Dad's days

> > > and

> > > > > > evenings in such way as to allow him to move around the

> > entire

> > > > > > facility and participate in as many programs as possible,

> > while

> > > > safe-

> > > > > > guarding his physical safety and watching out for falls.

> > > > > >

> > > > > > New Problem: I noticed that on two occasions when I was

with

> > > Dad,

> > > > he

> > > > > > said that he wanted to go to the bathroom and got up to

go.

> > But

> > > > in

> > > > > > front of the toilet, he must have locked up and had great

> > > > difficulty

> > > > > > pulling down his pants, etc... and unfortunately he lost

> > bladder

> > >

> > > > > > control and wet his pants. This happened only in the

> bathroom

> > > and

> > > > in

> > > > > > my opinion it was mostly due to his movement difficulties

> > > > preventing

> > > > > > him from getting to the toilet and taking down his pants

> fast

> > > > enough.

> > > > > > He has not been incontinent on any other occasion and

still

> > goes

> > >

> > > > to

> > > > > > the bathroom by himself. However, I am already starting

to

> > look

> > > > at

> > > > > > adult diapers and incontinence products as a back-up

plan,

> > > > especially

> > > > > > for the times when he is outside the retirement home

> (either

> > on

> > > > > > outings, or when we take him out for lunch or to visit

> > relatives

> > >

> > > > and

> > > > > > friends).. Our goal is to preserve his dignity as much as

> > > > possible,

> > > > > > especially avoiding situation in which he might feel

> > embarassed

> > > > in

> > > > > > front of others.

> > > > > >

> > > > > > As usual, I count on my friends at this forum to provide

me

> > with

> > >

> > > > > > further insight, advice and maybe words of encouragement

on

> > any

> > > > of

> > > > > > these issues. Your input and presence means the world to

me

> > and

> > > I

> > > > > > thank each and everyone of you for your continuing help

and

> > > > support.

> > > > > >

> > > > > > With much love,

> > > > > > Shomy.

> > > > > >

> > > > >

> > > >

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

> > > >

> > > > Welcome to LBDcaregivers.

> > > >

September 25, 2008

Shomy, what if staff were to position his walker appropriately to assist him

getting up

from bed or a chair whenever they see him lying or sitting down? Would that

help?

> > > > > > >

> > > > > > > Hello to all my dear friends at LBD Caregivers,

> > > > > > >

> > > > > > > As you may recall, I was in Toronto for a whole month and

> > am

> > > now

> > > >

> > > > > back

> > > > > > > in Italy. I'm sorry I couldn't write much from Toronto

> > > > for a

> > > > > variety

> > > > > > > of reasons (moving to a new house, changed our internet

> > > server,

> > > > > very

> > > > > > > busy with Dad and other errands, etc...) But now, I can

> > make

> > > a

> > > > > full

> > > > > > > report of the situation and hopefully get some feedback

> and

> > > > > advice

> > > > > > > from you..

> > > > > > >

> > > > > > > COGNITION: I noticed right away a great improvement in

> Dad's

> > > >

> > > > > mental

> > > > > > > abilities and cognition. We think this is due to Exelon.

> He

> > > is

> > > > > always

> > > > > > > coherent in his thoughts, never manifested any

> > inappropriate

> > > > > emotions

> > > > > > > or behaviour, etc. He still is very sleepy during the day

> > and

> > > > > does

> > > > > > > not sleep at all during most of the nights. His speech is

> > > always

> > > >

> > > > > > > coherent, however, his words get slurred sometimes and

> there

> > > > have

> > > > > > > been episodes where he keeps saying that he has something

> to

> > > > tell

> > > > > me

> > > > > > > but cannot grasp at the idea that he wants to convey.

> > > > > > >

> > > > > > > His living conditions: as you recall, we were very

> > concerned

> > > > > about

> > > > > > > him being on the locked dementia floor (in a private

> > > retirement

> > > > > > > home). In fact, he has become more withdrawn and

> > uninterested

> > > in

> > > >

> > > > > his

> > > > > > > surroundings. He definitely suffers emtionally by being

> > > > > surrounded

> > > > > > > with severely impaired residents and the very fact that

> he

> > is

> > > > > > > restricted to that floor. However, I found the staff on

> the

> > > > > dementia

> > > > > > > floor to be much more caring and attentive than on other

> > > floors

> > > > > and

> > > > > > > there are also a much larger ratio of care-givers per

> > resident

> > > > on

> > > > > > > this floor. The hygiene issues were not as bad as I had

> > > thought

> > > > > > > however, on some days the smell of urine on that floor is

> > > > > > > perceptible.

> > > > > > >

> > > > > > > MOVEMENT PROBLEMS: Dad's movements have hugely

> deteriorated.

> > > > This

> > > > >

> > > > > was

> > > > > > > quite terrible to see: he still walks with his walker,

> but

> > due

> > > > to

> > > > > his

> > > > > > > visuo-spatial dysfunctions, he goes off the paths or

> comes

> > > very

> > > > > close

> > > > > > > to and bumps against objects, etc... His balance when

> > sitting

> > > > > down or

> > > > > > > getting up from chairs or his bed is terrible. Often when

> > he

> > > has

> > > >

> > > > > to

> > > > > > > move his feet to get close to a chair to sit down, you

> can

> > > > > actually

> > > > > > > see that he tries to move his feet but it's as if they are

> > > > glued

> > > > > to

> > > > > > > the floor. On several occasions I have had to lift his

> foot

> > > off

> > > > > the

> > > > > > > ground and initiate the movement for him and then he is

> > able

> > > to

> > > > > > > continue. In fact he has had several falls during August,

> > one

> > > of

> > > >

> > > > > > > which necessitated an ambulance trip to the ER and

> several

> > X-

> > > > > rays:

> > > > > > > fortunately nothing was broken or fractured, but there

> was a

> > > > huge

> > > > > > > bruise and a very large hematoma which is still being re-

> > > > > absorbed.

> > > > > > >

> > > > > > > DEPRESSION: We took Dad for his regular appointment with

> > his

> > > > > > > cognitive neurologist (the one who had diagnosed LBD from

> > the

> > > > > very

> > > > > > > first visit). They found that he was depressed and

> > prescribed

> > > > > Celexa

> > > > > > > (Citalopram) to be given to him with gradually increasing

> > > doses

> > > > > to a

> > > > > > > maximum of 20mg per day. We have already seen an

> > improvement

> > > in

> > > > > his

> > > > > > > mood and awareness since he has been on Celexa.

> > > > > > >

> > > > > > > SINEMET: The doctors also decided that due to his

> > increasing

> > > > > > > incidents of falls, it was now time to address the

> movement

> > > > > problems:

> > > > > > > they prescribed Sinement 100/25 tablets. These tabs were

> to

> > > > start

> > > > > two

> > > > > > > weeks after the start of Celexa and the dose is as

> follows:

> > 1

> > > > tab

> > > > > a

> > > > > > > day for 3 days and if tolerated, 2 tabs a day for the

> next 3

> > > > days

> > > > > and

> > > > > > > if still well-tolerated, 3 tabs a day and maintain at 3

> > tabs

> > > a

> > > > > day.

> > > > > > > He is still taking 4.5mg of Exelon twice a day (9 mg

> total

> > > > > daily). We

> > > > > > > hope to see an improvement in his movement problems but

> > worry

> > > > > that

> > > > > > > the Sinement might trigger hallucinations and delusions

> and

> > > > > erratic

> > > > > > > behaviour. Although Dad had only two episodes of

> > > hallucinations

> > > > > (more

> > > > > > > like vivid dreams) only in the beginning of his illness

> and

> > > > never

> > > > > > > again, so maybe he's not prone to hallucinations.

> However, I

> > > > am

> > > > > > > keeping my fingers crossed and hope that Sinemet will not

> > > worsen

> > > >

> > > > > his

> > > > > > > cognitive functioning.

> > > > > > >

> > > > > > > OTHER RESIDENCES: I had also compiled a list of other

> > > possible

> > > > > > > retirement homes and looked them up. They were all very

> > good

> > > but

> > > >

> > > > > only

> > > > > > > one of them seemed to have the facilities to provide

> > > increasing

> > > > > care

> > > > > > > suitable for Dad's increasing needs in the future. However

> > > > we

> > > > > > > realized that Dad's current retirement home was still the

> > > > best

> > > > > one

> > > > > > > around (and unfortunately the most expensive one too!)

> > which

> > > > > could

> > > > > > > provide all levels of care. So we decided to bite the

> > bullet

> > > and

> > > >

> > > > > keep

> > > > > > > Dad at his current facility, and try to reason with the

> > > > directors

> > > > > to

> > > > > > > give him more personlized care suitable for his

> particular

> > > > > condition.

> > > > > > >

> > > > > > > MEETING WITH RETIREMENT HOME DIRECTORS AND STAFF: After

> > > several

> > > > > > > meetings with individual directors and staff, we had a

> > > meeting

> > > > > with

> > > > > > > the general manager of the retirement home and the

> director

> > > of

> > > > > care

> > > > > > > of his floor, during which we discussed the letter

> written

> > by

> > > > his

> > > > > > > cognitive neurologist who emphasized the fact that Dad's

> > > > stay on

> > > > > a

> > > > > > > locked floor would damage him both emotionally and

> > > cognitively.

> > > > > We

> > > > > > > also discussed all other issues involved in his care and

> > > brought

> > > >

> > > > > up

> > > > > > > all our concerns and complaints. We all agreed that due

> to

> > > his

> > > > > recent

> > > > > > > falls and increasing disability, he does need the extra

> > care

> > > > > given on

> > > > > > > that floor, but they promised to take him down to the

> other

> > > > > floors

> > > > > > > and especially to the common areas indoors and outdoors

> so

> > > that

> > > > > he

> > > > > > > can benefit from mingling with more highly functioning

> > > residents

> > > >

> > > > > and

> > > > > > > participate in the planned activities. We also asked for

> > the

> > > > > staff to

> > > > > > > watch him when he tries to get up from a sitting position

> > and

> > > > > make

> > > > > > > sure he doesn't fall.. In general, we also feel that Dad

> can

> > > > use

> > > > > the

> > > > > > > extra care given on the dementia floor, but he should not

> > be

> > > > > treated

> > > > > > > the same as residents who are totally cognitively

> impaired.

> > > Even

> > > >

> > > > > the

> > > > > > > directors agreed that Dad is definitely more mentally

> > stable

> > > > > > > and " normal " than the other residents on that floor

> > > > and his

> > > > > plan

> > > > > of

> > > > > > > care and activities should reflect this difference. We

> got

> > > their

> > > >

> > > > > > > agreement and promise that they would organize Dad's days

> > > > and

> > > > > > > evenings in such way as to allow him to move around the

> > > entire

> > > > > > > facility and participate in as many programs as possible,

> > > while

> > > > > safe-

> > > > > > > guarding his physical safety and watching out for falls.

> > > > > > >

> > > > > > > New Problem: I noticed that on two occasions when I was

> with

> > > > Dad,

> > > > > he

> > > > > > > said that he wanted to go to the bathroom and got up to

> go.

> > > But

> > > > > in

> > > > > > > front of the toilet, he must have locked up and had great

> > > > > difficulty

> > > > > > > pulling down his pants, etc... and unfortunately he lost

> > > bladder

> > > >

> > > > > > > control and wet his pants. This happened only in the

> > bathroom

> > > > and

> > > > > in

> > > > > > > my opinion it was mostly due to his movement difficulties

> > > > > preventing

> > > > > > > him from getting to the toilet and taking down his pants

> > fast

> > > > > enough.

> > > > > > > He has not been incontinent on any other occasion and

> still

> > > goes

> > > >

> > > > > to

> > > > > > > the bathroom by himself. However, I am already starting

> to

> > > look

> > > > > at

> > > > > > > adult diapers and incontinence products as a back-up

> plan,

> > > > > especially

> > > > > > > for the times when he is outside the retirement home

> > (either

> > > on

> > > > > > > outings, or when we take him out for lunch or to visit

> > > relatives

> > > >

> > > > > and

> > > > > > > friends).. Our goal is to preserve his dignity as much as

> > > > > possible,

> > > > > > > especially avoiding situation in which he might feel

> > > embarassed

> > > > > in

> > > > > > > front of others.

> > > > > > >

> > > > > > > As usual, I count on my friends at this forum to provide

> me

> > > with

> > > >

> > > > > > > further insight, advice and maybe words of encouragement

> on

> > > any

> > > > > of

> > > > > > > these issues. Your input and presence means the world to

> me

> > > and

> > > > I

> > > > > > > thank each and everyone of you for your continuing help

> and

> > > > > support.

> > > > > > >

> > > > > > > With much love,

> > > > > > > Shomy.

> > > > > > >

> > > > > >

> > > > >

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

> > > > >

> > > > > Welcome to LBDcaregivers.

> > > > >

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Re: Cognition vs. Movement problems

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