Re:Long days with mom...........

[Guest guest]

Hi Jan,

Your mother knows she has a problem and wants to understand it. It doesn't help

to ignore it or lie. Also, LBD folks are not stupid. They may be confused, but

they sense what's going on. When my father can talk, his words paint a much

more colorful and expressive picture than they did before LBD ... though it may

be a strange and bizarre picture. Also, he haphazardly remembers events even

though it appeared he was spaced out at the time of the event.

Once my father kept asking 'what happened?' My brother tried to be diplomatic

and skirt the issue. After asking 'but what happened?!?' about 50 times, my

brother got irritated and said 'YOU LOST YOUR MIND! THAT'S WHY YOU KEEP ASKING

THE SAME QUESTION!' and my father said something like 'THANK YOU! I knew

something was wrong.' That's all he needed to hear to make sense of what was

going on in his head. At that point we all realized my dad needs to know whats

going on with Lewy just as much as we do. I read him a lot of the articles

posted in here and relate some of the stories. He listens intently and even

acts 'normal' when we're discussing LBD. Knowing helps him cope.

It also helps that we remind him about LBD when he's scared or agitated. I

tell him he has a neurological problem that makes it difficult to understand

what's going on, to talk, to move like he wants and remember things, but we know

who he is and we're looking out for him. I tell him that I would be scared and

worried if I didn't know where I was and ask if he is scared or worried. He'll

look at me like a frightened child and nod yes. It calms him a little to know

the reason behind his fear. I also let him know that some of his memory will

come back in an hour or so and he'll feel better. I may sing a familiar song

and when he starts to hum along I'll say 'see, your memory is coming back

because you know this song.' It makes him happy to know some files are still in

the cabinet ... even if they're not in alphabetical order.

As for being a cg, sometimes someone else or someplace else will provide a

measure of care that you can't. Other times, only a person that is intimately

familiar can (or will) deal with the intricacies of Lewy. Put yourself in her

shoes and determine what you would want someone to do for you in the exact

situation. Then figure how to make that decision work with the rest of your

life.

For me it means adding an addition to my house for a studio and in-law suite and

having a cg help with the stuff dad will let her help with. It is impossible to

work from my current studio or cook a meal for my family when I'm always running

to my parent's home because dad is ready to beat the living daylights out of

intruders in the house or leaving to go home or depressed that he can't think or

laying in the floor for hours refusing to move or .... you get the picture. I

know it will still be a challenge when he moves in but at least everything I

have to do will be in one place.

For a close friend, it meant taking on extra work so she and her 7 siblings

could put their mother in a really good ALF that accepted pets since her mom is

so attached to her dog. My friend suffered 2 heart attacks and 2 strokes trying

to be the primary cg even though she had lots of help from her husband,

children, siblings, nieces and nephews. This job is unbelievably stressful.

Even the good days are stressful.

If being the primary cg is making you too sick or depressed to do an adequate

job, let someone else handle it so you can be a source of encouragement and

support to your mom because she needs that just as much, if not more, than being

cared for physically.

Goodness me! It's sooooo late and I'm rambling on and on and on. It's time for

a night nap. I'll catch up with the rest of the messages another time.

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