Wednesday, August 31, 2011

natural disasters

It's been quite a year for natural disasters.

We had huge amounts of snow this winter, with many rooftops buckling and collapsing. Then in March there was the horrible earthquake and tsunami in Japan.

In June a tornado or two cleared a path across the state of Massachusetts, where tornadoes hardly ever stay on the ground for that distance.

Earlier this month the whole eastern part of the US felt the earthquake in Virginia, which cracked the Washington Monument.

And this week Hurricane Irene gave us a thorough soaking and almost washed away the state of Vermont.

What has this weather report to do with my Mother? Mom watches the news on TV, she sees images of these natural disasters over and over.

When I was visiting Mom last Thursday, we discussed the coming of Irene, which would probably just be a very bad rain storm by the time it reached Mom’s area.

Mom reminded me of the Great Hurricane of 1938, when she got caught in the storm and was pushing me in the stroller across town in the rain and wind. Of course, I didn’t correct her, because in 1938 she was the one in the stroller, not me.

My Mother’s father was born on the day of the 1906 San Francisco earthquake. No one in the family ever noticed that connection until recently. It’s probably because in 1906, that horrible news never made it to the little New England town where he was born. There was no YouTube to let us immediately see, hundreds of personal videos of these disasters. There was no CNN or Weather Channel. There wasn't even radio. People didn’t hear about all the things we hear (and see!) now.

Last month, when they moved my Mother from the independent wing to the not-so-independent-wing they told her a therapeutic fib-let. They told Mom that she had to move to the new room because they needed to do some construction on her old room. Something had broken and it would take a few weeks to fix it. They had to move all her stuff so that it wouldn't get ruined by the plaster dust... yada, yada... you get the idea.

So Mom is in her new room in the new wing of the building.

Last month she sighs and says "Nothing's the same."
"Oh? What's not the same." I ask.
"This place, it's all new, it's too bad what happened to the other part of the building."
"Oh? What happened?"
"You know! The tornado! It ruined _____. That's why I had to move down here."
"Oh, that's terrible. I'm glad you're safe here."

This morning my brother and I were talking on the phone.
Mom told him that she was sad because she can no longer go to the lounge for games and sing-a-longs... because... the hurricane washed it all away.
Fortunately these disasters are happening only in Mom's mind, not at the assisted living residence.

Mom's mind: that’s a natural disaster of a different sort.

Tuesday, August 30, 2011

book review

I just finished reading the book Alzheimer's in America: The Shriver Report on Women and Alzheimer's. It's a somber read. It's a concise synopsis of the effect of AD on everyone. Yes the title specifies Women, but it talks about all of us, those with the disease and those who have to care for them.

The most powerful part of the book is that many of the chapters of the book are written by other people. People who have AD and people who know someone with AD. It is the raw emotion of their words that reminds us that we are not alone. It is akin to being at my support group. Sometimes it just helps to know that you are not the only one going through this. You nod your head and cry too.

Thank you, Maria Shriver, for using your VOICE to educate people about Alzheimer's and it's impact on all of us.

Monday, August 22, 2011

the WALK to End Alzheimer's

I am participating in the WALK to End Alzheimer's this fall.
As this is an anonymous blog - it's kind of hard for me to ask you to make a pledge for me or my team.

But I can ask you to join the WALK yourself, or pledge to a friend who is walking, or to the Alzheimer's Association in general.

They have been a great help to me.
They have great resources.
The Alzheimer's Association hot-line is there with friendly, compassionate, and knowledgeable people who can help. People who are only a phone call away, day or night. 800-272-3900

As they say
"Alzheimer's is a thief who robs us of the people we love."
Ain't it the truth.

two years

It's been two years that I've been blogging about Mom and this nightmare of dementia. As I look back, I think this journey started in 2006, something was just not right with Mom.

Quirky self isolating behaviors.
The excuses - the covering - the coping -

I don't have to go to every meeting.
You do it.
Write that down for me.
I'll do it later.
That phone doesn't work.
I'm fine.
The computer isn't working again.
I had to buy a new printer the other one wouldn't work.
This remote control doesn't work.
You have to come and take me to the doctors now.
This key doesn't work.
I'm going to heat up some V-8 juice for supper.
I don't want to drive after dark.
The grass is wet I'll mow it tomorrow.
I had to drive down there to turn around.
The garage door opener is broken.
I don't feel like it.
You have to fix this computer now.
This ATM card won't work.
Get your nose out of my business.

It seems like she couldn't solve problems. She could not gather the right thoughts to help her deal with obstacles or to handle situations that were different.

So when she turned off the computer's surge protector, and then the next day she wanted to use the printer and it didn't work, she "solved" the problem by buying a new printer.

So when the smoke detector went off because she forgot her dinner on the stove. She "solved" the problem by silencing the smoke detector with a broom handle.

So when she misplaced her key ring, instead of looking on the key rack for the spare keys, she ordered new lock and keys for the P.O. box and new keys for the car.

And instead of asking for help, she denied that anything was wrong and covered her mistakes.

I wish my Mother could have been brave like Janet.

Monday, August 15, 2011

that necklace

Mom has a necklace she wears every day. It has great sentimental value for her. It is big and brass and jingles. Every day she wears her too-tight jeans and her brass necklace.

When I took her to her doctor's appointment last week, as she undressed, I put the necklace in my purse, and then I forgot about it.
By Saturday Mom was in a panic. She could not find her necklace. Mom wrote up large posters and hung them in her bedroom windows, facing out to the woods. "Find my jewels."

She told her friend she had lost "something" she had lost something very special, but she couldn't even say the word "necklace". She's clutching her breast and crying, "You know, you know that thing, I lost it." She told her friend that she had lost it while bending over the river. (How did a river get into this saga?) This friend helped Mom look in all her drawers and in and under her bed.

Finally one of the aides remembered that Mom and I had gone to the doctors together, and called me. Yes, it's here in the bottom of my purse. I feel like I have the baby's pacifier or the toddler's favorite stuffed animal.

When I called Mom to tell her that I "found" her necklace, she was almost crying. "You don't know how much it means to me."
You're right Mom, I don't understand, I don't understand how you can be so fixated on this necklace, how you can spend hours and hours crying about it, but you don't even care (care, remember, know) if your brother has visited you this year, or if your son has called you today.

I also don't understand your anxiety about your cat. You don't like to leave him alone in your bedroom, you're afraid he's going to be lonely. Yet, you don't play with him.
"I have to see the cat."
"He's ok Mom, he is laying in the sun, on your bed, taking a nap."

"I HAVE to go see him!
He's my family!
YOU don't understand." she yells at me.

I don't understand. Damndementia, stab me in the heart, why must you be so cruel.

Saturday, August 13, 2011

purple skin

Mom has a huge bruise on the back of her hand.
"Mom, what happened, how did you get that bruise." I'm holding her hand in mine, the bruise covers the whole back of her hand, it is purple, yellow, and green.
"That's not a bruise, I don't know what you're talking about."
"Mom, your hand is purple."
"That's not a bruise, people can have different colors of skin, you know."

I'm worried - yet I'm laughing on the inside.

Here is the second grade teacher part of my mother popping out. She is reaching way back in her mind to teach me all about our "under-under-wear." She would teach her second graders that, just like we can all have different color underwear, we can all have different color skin.

Yes Mom, but purple is an underwear color, not skin color.

Wednesday, August 10, 2011

gray hair

"Your hair is real gray, my hair is naturally brown."
"Yes Mom" today I slide in the comment "I dye my hair gray so I'll look older."
"I know you do."
If I have to hear about my old gray hair one more time I think I'll explode.

the mini-test

All day today dementia has been taunting me. "I've got your Mother and you can't have her. Na na na naaaa na."

From the first response to my "Good morning Mom." "oh..." to the last response "Bye Mom I love you." "umm..."

Today was Mom's annual physical with her primary care physician. Her doctor is wonderful, we are so lucky. She really listens to Mom (and me) and is thoughtful and respectful. I gave the doctor my list of concerns, the first item was Mom's continual loss of cognition, her mental decline. This summer she is having a hard time with he/she and him/her. She doesn't remember anybody's name. Sentences start out about one thing and quickly morph into a totally different topic.
"We had chicken for lunch because the cat likes to sleep with me." I hardly ever hear one complete sentence.

Mom's doctor decided to give her the Mini-mental screening again. I think Mom only got two answers right, she could name a pen and a watch when asked "What is this?"

We had been waiting in the examination room for a while, Mom in her johnny and me with my notebook. We discussed all the posters on the walls: osteoporosis and spinal curvature, using bug repellent to protect you from ticks, hand washing safety, and the farmers pictured on the calendar.

"Do you know what month it is?" the doctor begins.
"Hmm, well we had the fourth of July."
"Do you know what season it is?"
"Oh? Um, it's spring."
"Do you know what year it is?"
"I don't have to know what year it is, no one asks me that, I just show up when they tell me it's dinner time."

The calendar is directly across from her, she doesn't even know how to find the answer, how to cheat, how to look up to the calendar to find the answer. She can't use her tools.

"Do you know where we are now?"
"Stuvwxyz blah blah blah, but we just call it Stuvwxyz, I don't know what the rest of the words are, I don't need to know all the rest of the name, but we just call it Stuvwxyz."
"Yes, Stuvwxyz is where you live, but do you know where you are now, right here with me?"
"Do you know the name of this hospital?"
"Do you know what town we are in? Do you know the town where Stuvwxyz and this hospital are?"
"I'm going to tell you the name of three objects: apple book coat; repeat these three words: apple book coat"
"Apple cook boat"
"Apple book coat"
"Apple book coat."
"Repeat this sentence exactly as I say it: No ifs, ands, or buts"
"No if and buts."
"Now can you tell me those three words I had you remember"
"Apple.... ummm" Mom is even holding her coat in her lap, and a there is a book in mine. ABC, 1,2,3, the book and coat are gone.

Wednesday, August 3, 2011

Aunt J

Mom's Aunt J__ was a headstrong and critical woman, someone who was always hard to please. Aunt J__ has been gone for almost twenty years.

Mom likes wearing her favorite pair of jeans, she wants to wear them every day. This faded pair of jeans are too small, they are ready to burst at the seams. I show her her other clothes in her closet.
"Those aren't my pants, I don't know who put those clothes there, I can't wear those clothes."
"Mom, your name is on these clothes, they must be yours."
"I don't have a closet, those clothes aren't mine."

"Aunt J__ stole my jeans" she says, patting her thigh, "but I got them back."
"Oh really?"
"Yes, Aunt J__ stole my jeans!"

Oh no, I hope that Mom does not think of one of her aides is Aunt J__. That would not be good. The aide that probably took Mom's jeans to the laundry.