Re: Shomy - : Cognition vs. Movement problems

[Guest guest]

Hello Courage,

Great to hear from you. By the way how did the Toronto meeting go? I

would have soooooooo liked to have been there.

The CCAC have not helped us at all so far. They sent an occupational

therapist to Dad's condo way in the beginning when he was still

living on his own and they gave us a whole list of supplies to buy:

raised toilet seat, safety bars for the toilet, shower chair, bed-

rail, cane, walker, and some other items. We paid over $2000 and they

said that none of it was covered by CCAC or OHIP but that when we

gave them back, we would get most of the money back. When we moved

Dad to a retirement home, they did not allow the use of any of the

toilet items (raised seat, handle bars, shower chair, etc...) and the

bed rail. We tried to take these items back but nobody would give us

any rebates or any money back.

We have asked for help from CCAC to get a caregiver to come into the

retirement home and spend time with Dad to at least watch out for

falls, take him walking, just general care. They did not give us any

help. They just send a person once a week for half an hour to help

give him a shower. That's it. This person will not even help clip his

nails, or help in any other way at all because it is not a part of

her duties. All other showers are given by the staff at the

retirement home at extra costs to us. Also cutting his nails, cutting

his nails, etc... are all at extra cost which we pay regularly.

I know that the CCAC sends free help to many elederly citizens, etc..

but they sure haven't thrown us any bones at all. They probably

figure that if we can afford to pay $5000 a month to keep him at this

private facility, we probably can afford to pay even more to get all

the extra private care. They don't realize that we are getting close

to the bottom of the barrel and making huge sacrifices.

It is frustrating because I have friends whose elderly parents pretty

much live for free: government-funded housing for the elderly (nice

apartments, not long-term care), they get housekeepers come in to

help with the cooking and cleaning, and they get all kinds of

assistance. Half these people are not even sick, they're just old.

Our Dad has a serious illness (LBD is no joke) and needs assistance

around the clock, but everytime we've knocked at the CCAC's door,

they just say that there is nothing they can do for us.

I just can't figure it out.

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.

> > > >

> > > >