Re: Shomy/Cognition vs. Movement problems

[Guest guest]

Hello Janet,

What a helpful idea. That's why I need you guys!

We are going to continue with the call bell (once they get it working

again!) for now. But when the time comes that he no longer remembers

to pull the call bell cord, it's good to know that we can use the

pressure alarm system. I'll start looking into right away, just in

case.

Thanks a million.

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 In fact, he has become more withdrawn and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.

> > >

> > >