looking back?

I reflect, I look back. I don't know why. To find answers? To see how long this dementia has been causing chaos with my Mother?

The spring of 2007 Mom had her first neuropsychological evaluation. She told us all she "passed with flying colors."

That spring, Mom and I did a lot of painting, planting, and trimming around her house because that summer my son was to be married in her front yard. But as I look back, Mom didn't do any of the painting, planting, or trimming. I did, my family and the workmen did. She always had excuses.

We went to the garden shops together and bought hanging baskets and porch railings planters. We bought coir liners and soil. We bought a kazillion 6-packs of flowers and ivy to plant in the planters. She returned the liners, she didn't like them. She returned the planters, she thought they were ugly. She returned some of the plants, they were the wrong color. Then she watched; she would lean on the porch rail and watch me plant, watch me water, watch me trim, prune, and rake. "I'll just go find my work gloves." and she would wander away. "Let me look in the garage for the other clippers." and I would find her in the kitchen reading the paper. It was more than chore avoidance, it was detachment.

We were going over the to-do list with my son and his fiance. "Yes" my Mom said "I have a friend who has some 8' tables we can borrow." Then month by month, Mom reassured us that she had arranged to borrow these tables. Then two days before the wedding "Of course you can't use them, he's lent them to blah-blah for their annual blah-blah-blah."
This was a little kick in the pants - as we scurried around to rent tables at the last minute. But this was SO not my Mother. She was always such an organized person, someone you could count on to do what she says she'd do. She was always such a leader, not one to watch from the sidelines.

Months after the wedding I learned, that after the wedding guest had left, Mom spent the night crying. Not tear of happiness for the bride and groom, not tears for her long gone husband, but tears of despair for her cat. She couldn't find her cat. This is the cat who hides when ONE other person comes into the house. There were a hundred strangers in his territory and he hid. He was hiding in his usual place in her bedroom closet, a place she never looked. A place I always found him, in the years following, whenever he was "lost".

What signs of dementia do I see now that I didn't see then? I see irrationality, irrational behavior, more than being old and "set in her ways", more than being the elder and being able to "do what ever I want." I see fear and anxiety over things and situations that didn't warrant it. I see a shrinking of her world, limiting her boundaries, a self imposed isolation; more than just not driving on highways or into Boston.

do it now!

Mom called me Sunday morning. She was surprised that the call went through. I was surprised that she could find my phone number on the first page of her address book and could press all 11 numbers in order.

She greeted me with her now routine "where the hell are you?" She yelled at me because I wasn't there to take her to get her hair cut. Time has no meaning.

Last week she whined that she needed to get her hair cut, now! But I can't take her to the ONE person she trusts to cut her hair, for another two weeks.

We talked about her going downstairs at the assisted living and letting THAT WOMAN cut hair, but Mom was adamant that SHE would do a "crappy job" and would only "hack at my hair with her scissors." I don't know how to change her mind about the resident hairstylist.

Taking Mom to her favorite hairstylist is a full day project for me. One hour up to get Mom + 20 minutes to get her out of the building + 30 minutes drive to + 30 minutes of wash, cut, and blow dry + 30 minutes driving back + at least 20 minutes to get her back into the building + one hour drive home. Her beautifully coiffured locks are not worth 4+ hours and 100 miles of driving.

I think it's time for Mom to accept a new hair style and stylist. HA HA HA HA right...

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.