Tuesday, April 12, 2011

what do you know?

I read so many blogs and books by caregivers and talk to so many caregivers who are so frustrated by everyone else -- who just don't GET IT. Everyone: neighbors, doctors, waiters, friends, home health aides, and siblings who just don't GET IT.

Our loved one can have vascular dementia and still be witty. They can have Alzheimer's dementia and still be intelligent. They can have Lewy Body dementia and still be knowledgeable and thoughtful. They can have dementia and still be smart. It is NOT all or nothing. Their common sense, their logic, their abilities, and their reality are nibbled away bit by bit.

The skills that disappears for one person are not necessarily the same ones for someone else. It's like someone has taken a paper punch and keeps punching holes in the book that is my Mom's user's manual.

I have a friend who still wins at Scrabble, but she can't add ten plus ten. Just because Grandpa can still debate the political situation in the Middle East doesn't mean he remembers what to do with a toothbrush. Mom's age appropriate attitude of "I'm an adult, I can do whatever the hell I want" doesn't apply to her driving a car with no regard for the rules of the road.

For a long time, my Mother would tell me things so that I would believe she was ok. It was her way of coping with the horrible chaos going on in her brain. She would reassure me that she was doing fine. So I wouldn't have to worry about her? So I wouldn't find out the truth? So I would keep my nose out of her business? Her fibs were her way of coping.

The first time she had a neuropsychological evaluation, she told us all (repeatedly) that she "passed with flying colors." It was only years later that we learned that this doctor gave her the most minimal screening. A doctor's visit of only ten minutes with a person who is denying that anything is wrong, was a failure.

How different would life be if my Mother had asked her doctors for help with the changes going on? If she had asked for answers and planned for her future? Why wouldn't she talk to me about her worries and concerns? Why couldn't she ask me to help her, back when we could have worked together? Why, why, why? What if - what if - what if only?

I don't really know what I want to say tonight. I'm just frustrated.


Pamela said...

Thank you for this blog note...it really is spot on with what its like and that no one else really gets it. "If only" is a lonely road but I sure have been there too. I think you've said alot. thanks

Debbie's Garden said...

We all have times when we just wallow in self pity, mad, unfair... etc. But it is what it is. We've (as a family) been dealt this and looking back to see what we could've done different isnt going to change anything. Hindsight is always better. You can only do the best you can with what you've got.

karen said...

I am there now. I think back all the time and say . This is my fault if I had of done this or that we would not be here. I don't know if that is true but I bet it would be better .

rainsinger said...

I wonder too. I wonder every time I just can't remember that person's name. Or when I forget how to do the Calculus, again. Will I hide when it is my turn? The people who love me are often complicit, reassuring me it is only stress. Will I be able to ask for help when it is my turn? Sometimes denial is all that lets me keep going in the face of such grief. As frustrating as it is to care for mom, as painful and heartbreaking, my mom is one of the bravest people I ever met. She knows what is happening and she doesn't hide. IT IS STILL HARD! We still cannot stop this disease.
You are not alone. And I still cannot remember how to find the derivative of 2(x+y)-(k+5), or even why I would want to.