Re: update on Dad

[Guest guest]

Hi

My Dad fell and was in hospital from June 12 to June 15, then released to Rehab

for 3 more weeks - then he learned to stand and use walker. (he was doing

pretty good before the fall - and he didn't break anything).

Social worker and P.T said he is at high risk of falling (he stiffens up and

falls backwards) and needs help with his ADL's and needs 24 hour supervision.

My mother is 85 and tried to help him - my sister goes everyday and I go a

couple times a week due to it is an hour away.

My mother agreed to hiring a 24 hour help - then when we got him home she said

maybe 8 hour help - then it changed to 4 hours in the afternoon - now she wants

to go down to 2 hours ! My sister can't do everything anymore and she is the

one that hired the CNA. Mom calls my sister everyday and says they don't want

the nurse anymore at the house. Well the nurse (cna) bathes him and walks him

and does all his P.T. exercises and helps start dinner. My mother can't do any

of that - she says she bathes him - but we learned that she does not. Also, the

CNA looks for bedsores and she is just great. My mom is very strong-willed and

bossy - and she is telling us she doesn't want help - she says Dad doesn't want

it. Well, he has dementia, walks like a drunken sailor and I am scared to death

he will fall. Mom refuses to install a handrail on the front door so he can

grab it - once he reaches the top step - he falls backwards. She said " he will

go in the side door where there is a rail to grab " . I was there the other day

and he went out the front door and tried to go back in - so she didn't stop him

from going int he door that he had the bad fall backwards on. So the other day,

my sister and I grabbed him on the threshold and pushed him when he leaned back,

in the nick opf time.

The social worker at the Rehab place said " you can't trust his judement - he has

dementia " I mother agreed. but now, she says " I'll ask him what he thinks - "

he doesn't want the helper anymore, he doesn't want the special walker " and on

and on.

So my sister had to " straighten her out " - just spoke strongly and said we are

going to have the CNA - but everyday Mom asks to get rid of her. Without her,

Dad would be in his chair in TV room, would not get bathed , walked or do his

P.T. And he would definitely, without a doubt - fall down again and soon !

Everyday when I call, I am shocked and grateful that he has not fallen.

I don't know why I wrote - because this is so hard - to try to be boss of your

parents because you want them to be OK !

thanks for listening.

H

[Guest guest]

My mom and dad were the same way. They did not want anyone in the house. We

took a piece of molding that matched the molding in the house and attached

that to the wall with little 1 " blocks between the wall and the molding.

That matches the house, provides them with support in the hall way and does

not make the house look like a hospital. My dad accepted that. It sounds

like your mom does not want to give up any control in her life. She is

clinging to normal because she is afraid. My mom does that sometimes but she

has now reached the point where she really cannot do it.

Sharon Dowling

punkersad@....

[Guest guest]

Attention Marcie

Thank you for your kind understanding - what is " showtime " what is

" sundowning " . ?

My mother has not been diagnosed with dementia - she pays all the bills, runs

the house, grocery shops, arranges for all the repair-men, etc. - and she seems

very " with-it " . But we are now wondering - when she says she understands Dad

has advanced Parkinsons, LBD and significant Dementia - then she says to us

" let me ask Dad - Dad doesn't want a CNA, Dad doesn't want the bench for

bathing, the walker, and on and on.

She doesn't want the handrail on the main door of the house. Last year when he

came home from Rehab, we had that special bench that goes on outside and inside

of tub and special walkers, etc. P.T. told her this is progressive, and he will

not be getting better, only worse. She said she understood. Then his walking

started to look good. He wanted to go upstairs and start sleeping upstairs - so

Mom say OK.

Mom brought that bathing bench back to the senior center and said she doesn't

need it anymore and Dad can bathe himself. She said he can go up the stairs,

because he wants to.

That is not true.

Now his bed is on the main floor in living room, and before long, he will say he

wants to go upstairs and Mom will say Fine - he " wanted " to.

I am frustrated right now.

H

[Guest guest]

Thank you Marcie and everyone.

I know that soon Mom won't be capable and we are looking at 2 parents with

dementia ! But, Mom is extremely bossy, I have never stood up to her before and

she does pay all the bills, and run the house - the only area she has dementia

is in the denial about Dad. My sister is the one that is there everyday and she

has strong feelings about this and wants to keep them home - she says its

cheaper to keep them home and hire 24/7 help then go to a home - is that true?

What would be first steps to take over the situation - would it be a meeting

with the dr?

thanks

H

[Guest guest]

: I feel for both you and your mother at this stage, but I don't think you

should leap to the conclusion that your mother has dementia. I have cared for

my mother for the past four years - two in assisted living before moving her

into our own home. Since the dementia of LBD is so up and down, your mother has

had many, many moments when your father seems almost perfect and he likely

expresses his desires pretty articulately and forcefully. As loved ones (in my

case most certainly) we crave having our parents or spouses " be normal " and it

is very hard to buck many years of shared history and be the nay-sayer. When

our loved ones tell us they can and want to do something that they've always

been capable of, we have a natural desire to support that optimism. The hardest

times of my life with my Mom have been when she is doing well and yet experience

has taught me to caution her about walking carefully or using the bathroom in a

particular way and she looks at me like I am the one who wants her to be ill (or

worse, tells me). We went through a stage when I almost wished my mother would

simply stay in a bad state, because the back and forth was so hard. Now that

the " good days " are so few and comprise such a few aspects of her health I wish

that I had appreciated even her " difficult " days of better health more!

(daughter of Augusta, diagnosed with Parkinson's 2007, LBD 2008).

>

>

>

> Subject: Re: update on Dad

> To: LBDcaregivers

> Date: Tuesday, July 26, 2011, 4:31 PM

>

>

>  

>

>

>

> Attention Marcie

>

> Thank you for your kind understanding - what is " showtime " what is

" sundowning " . ?

>

> My mother has not been diagnosed with dementia - she pays all the bills, runs

the house, grocery shops, arranges for all the repair-men, etc. - and she seems

very " with-it " . But we are now wondering - when she says she understands Dad has

advanced Parkinsons, LBD and significant Dementia - then she says to us " let me

ask Dad - Dad doesn't want a CNA, Dad doesn't want the bench for bathing, the

walker, and on and on.

>

> She doesn't want the handrail on the main door of the house. Last year when he

came home from Rehab, we had that special bench that goes on outside and inside

of tub and special walkers, etc. P.T. told her this is progressive, and he will

not be getting better, only worse. She said she understood. Then his walking

started to look good. He wanted to go upstairs and start sleeping upstairs - so

Mom say OK.

>

> Mom brought that bathing bench back to the senior center and said she doesn't

need it anymore and Dad can bathe himself. She said he can go up the stairs,

because he wants to.

>

> That is not true.

>

> Now his bed is on the main floor in living room, and before long, he will say

he wants to go upstairs and Mom will say Fine - he " wanted " to.

>

> I am frustrated right now.

>

> H

>

>