Pam - Elliot's wife

[Guest guest]

Hi Pam-

Welcome. Elliot is so right, this is a good place to vent.

Here you will not be judged for any of your actions with

LBD. It is a terrible disease that comes with no instructions

on how to react or even what the future will hold. There was

a member who said once, " we are only responsible for the

effort, not the result, " which shows your heart was in the

right place. Please try not to beat yourself up over what

is going on. This disease is huge yet can be managed

and you will make it through.

Remember that LBD is a thought process disease. Often

our loved ones begin a thought and can't finish it. Their

minds start at the beginning point then it just vanishes.

There are also times within a sentence that our loved

are talking then fill in a word with something totally

unrelated to what they are saying. That can be difficult

figuring out what is being said. Patience is all we can

give and on those days when patience is running thin...

forgiveness will pull us through.

Hang in there. Remember that your heart is full of love

for your mom and you have wonderful support with

Elliot.

Come here as often as you want. You are not alone

in this journey.

Hugs from Iowa-

Sandie and

-- Hi, Elliot told me this is a good place to vent

I am Elliot's wife and my mother is the one with LBD. Elliot has

been telling me I need to get on this board, but I kept telling him

I don't have time for it. This morning when I was venting to him,

he told me again I need to visit this group, so here I am.

I am feeling like a louse today because I made my mother cry this

morning. I believe that we are still in the early stages of this

awful disease, and my mom is still a very sweet, gentle, frail lady

but already it can be so frustrating at times. This morning's

incident went like this ~ I had helped my mother shower, washed and

set her hair and I told her to get the hairdryer out of the closet

(where it has always been since she came to live with us a year ago)

while I did dishes. After about 10 minutes, she came to the hallway

and asked where the hairdryer was. I told her " in the bathroom

closet, behind the bathroom door, on the shelf. " After a few

minutes more, she came and asked again. I repeated the instructions

and added that it was on the shelf toward the back near the wall.

After another 2-3 minutes had passed and she still hadn't come back

with it, I went to help her and found her in the hallway, looking in

the linen closet. I was frustrated and it showed in my voice, when

I asked her " what are you doing here? " She said she was looking for

the hairdryer. When I repeated that I had said it was in the

bathroom closet and why was she looking in the hall closet, she said

she couldn't find it in the bathroom and thought perhaps it was in

the linen closet. I went into the bathroom, opened the closet door

and picket it up off the shelf, exactly where I had told her it

was. When I handed it to her, she started to cry. I know it was

probably a combination of her feelig bad that she couldn't find it

and feeling bad that I was frustrated with her. I immediately felt

awful and wanted to cry right along with her.

I know that for those of you dealing with the advanced stages, this

probably seems like a miniscule problem. However, my frustration

comes from not knowing when to just do things for her and when to

allow her to struggle to still do for herself as much as she can as

long as she can. I was frustrated because I knew she wasn't going

to find the hairdryer in the linen closet and she would feel bad

that she couldn't find it. Should I just have gone to get it myself

in the first place? I really thought that if I gave her specific

instructions, this was something she could do and would feel good

that she did. In the end, she was in tears and I felt like it, too!

The other thing that is hard for me is that 20 minutes before that,

she couldn't figure out how to put her underwear on but then she was

able to decide that perhaps I didn't really know where the hairdryer

was after all and she'd look for it somewhere else. This

fluctuating cognitive ability is very hard to deal with. She has

great difficulty in conversations because she can't keep a thought

from start to end of a sentence or she can't verbalize what she is

trying to say. Yet, she is extremely concerned if she thinks I am

going to overeat and she will try to put food out of my sight. She

will be overly concerned about her hair to the point that she won't

take a top off and would rather sleep in it if she thinks it might

mess up her hair to take it off. I guess this inconsistency in her

mental ability causes me to think she can/should be able to do more

than she can at times and I feel impatience with her. Then I feel

terrible about my feelings!

Sorry for this long post, but I guess I need to vent a little and

would appreciate any input from you " long-timers " in how you handle

these things. I know this is probably the easy stage but it is not

easy, none the less.

Thank you,

Pam