scary stories

I've finally gotten use to Mom's stories, in that they contain a mixture of information from ten different stories. Everything is a jumble. I can understand that now. I don't try to correct her.

It's like that game, Mad Libs, fill in a person's name, add a town's name, put in some relative's name, write a month, fill in a school, pick a year. Put it all together and you get a story. Except when Mom tells it we try not to laugh out loud.

This week there was a new twist to her stories, and it makes me scared.

Mom taught second grade for many years. She loved second graders. They are curious, they love to learn, they are missing front teeth, they don't swear, and they will sing silly songs without hesitation.

She also loves picture books; she loves the short stories and the beautiful illustrations, and all the Caldecott Medal and Honor books. Barbara Cooney, Jan Brett, Tomie de Paola, Jan Yolen, Trina S. Hyman, and Mary Azarian are just some of her favorite children's authors and illustrators. Even after she retired from teaching she would still attend the children's literature festival, listen to the authors lecture, and buy new books.

As I look back now, I'm glad that I brought Mom to the Eric Carle Museum of Picture Book Art. It was a unique 70th birthday, ending with a walk through the Dr. Seuss sculpture garden.

So there is a house, an empty house, empty of life, but full of stuff. There are books, books, and books. Mom had about 18 feet of shelves just for picture books. Skinny thin children's books. She had already culled out the books she didn't want any longer. She had already given her grandchildren piles of books when they were little. These shelves contained her favorite children's books.

I contacted the local elementary school: what the library can't use, give to the teachers, and what they don't want, put aside for the used book sale. Books aren't any good unless someone is reading them, pass them along. I knew that this was what Mom wanted done with these books.

I just found out that someone from the elementary school has written Mom a thank you letter, I haven't seen it yet. It made enough of an impression on her that she told her friends about it.

But, Mom also told her friends, that the people at the school were really happy to see her, when she brought the books over, all the books that she carried over in her large tote bags.
This is the scary part of the story. Mom didn't bring these book anywhere. She didn't go to the school. She didn't help sort them or pack them up. These images are not real. She is not shuffling random old facts together to make a new story. She has imagined herself doing something, and telling us she did it. Her dreams are becoming her reality.

This is scary, a scary story indeed.

handwriting

My Mother has very distinctive handwriting. Everyone recognizes Mom's writing. I think that Mom's handwriting was one of the first hints I had, as a kid, about Santa's helpers.

Because of the second grade teacher and artist part of her personality, her penmanship has always been very important.

When I sent out letters to Mom's friends, letting them know of her new address, many said their interest was piqued the minute they saw the envelope. The return address label was from her, but the writing of their name and address wasn't in Mom's unique script.

When we moved Mom into her new apartment, I made sure she had stationary, cards, note paper, thank you cards, birthday cards, envelopes, and her address book; so she could write to people and tell them her news. I gave her mailing envelopes so she could send those children's history books to the little cousins on the other side of the world. Last week I brought her a box of Christmas cards. I brought her the 'lap desk' she uses when she writes from the bed or the sofa.

All this remains untouched. She is not writing letters. She is not sending cards.
You will not get a thank you note for the lovely bouquet of flowers. You will not get a thank you card for the books and dvd you sent her. You will not be getting a birthday card or Christmas card. You will not be receiving any mail from Mom.

I think putting pen to paper frustrates her. "I'll do it later." she tells me.
Just watching her write a check or a birthday card this autumn was a frustrating and difficult task. I don't think she'll be writing any more letters.

What prompted this blog post? I was flipping through my recipes and found my Mother's handwriting; her neat, beautiful, unique handwriting. Another part of her that has gone.

what about Christmas

What is Christmas all about?  How do we deal with dementia and Alzheimer's during the holidays? 

 

What is Christmas all about? Is it all for the children? Is it about family and gathering loved ones? Is it about remembering your favorite charity and filling food baskets at the food pantry?

 

 Is it about baking cookies, writing cards, and singing carols? Is it about the fulfillment of the promise of the coming of the messiah? Is it about hope and joy? Is it about peace and love? 

 

 Last year, Mom was hesitant about staying overnight at my house for Christmas Eve, and then visiting with my husband's family for Christmas dinner. 

"I don't know these people." she said nervously.  

Yes you do Mom, it's just the family for dinner. And this was her worry last Christmas. 

 

Mom, you have known my in-laws longer than I have. My husband and I grew up in the same town, our folks knew each other through various groups and organizations. I have always been so happy that our in-laws have a friendly and supportive relationship w.r.t. my husband and kids. But, to her they were all new strangers. 

 

This week I asked Mom to come stay overnight at our house for Christmas Eve, to have brunch with my kids. (I didn't even mention going to visit my in-laws.) She balked, she quickly gave me excuses why she didn't want to go: it's too cold, what if it snows, what if it's bad driving, it's too far, she doesn't want to leave her cat, she wants to sit right there. 

 

 Do I want to add to her stress and distress? Am I being selfish? Am I being selfish wanting my Mother with me for Christmas? 

 

I also know if I don't pick her up, and someone tells her it's Christmas day, she's going to be mad at me for not picking her up. ("Where the h*ll are you? "When is someone going to pick me up?" Reference post 7/26/2010) 

 

Reminding her that I'll be there tomorrow or that I was there last night won't make a difference. She'll still fell mad, sulky, and neglected. 

 

What is Christmas all about? Is it about hope and joy? Is it about peace and love? OH YES, we need a little Christmas, right this very minute!

it's all about her

One thing about this dementia that keep surprising me, is how self-centered and self absorbed Mom's behavior has become. I'm not sure if self-centered is the right word. Egocentric?

It's all about her. She is a world unto herself.

There is no conversation, there is no back and forth, she talks about her topics and I respond with, "Oh really. That's nice. Yes it was."

She never asks "How are you?" She rarely asks about my kids or husband.

My brother, EJ, was here for two weeks this past month. Two weeks that he left his wife, kids, job, and dogs to be here with us. The first week, the week from h*ll, was the week we moved Mom into the assisted living residence. The second week, we worked together on Mom's house. This second week also contained both Mom and EJ's birthdays.

Every visit with EJ and Mom - I am still shocked and saddened by her response to seeing him.
There is no "Wow, what are you doing here?"
There is no "Wow, you just flew 2500 miles to see me!"
There is no "How are you? Where is your family? How is your family?"
There is no "I'm so happy you are here for my birthday."
There is no "You're here again."
There is no "I'm glad you're here."
There is no "You're here again to see me, how nice."
There is no "Hey everybody, my son is here to see me, he came from far away."

There is only "Oh hi, did you see my newspaper, don't let the cat out, this is a picture of my grandmother's tree."

Is she thinking, "You are just another body in my room."? Or is she thinking "Of course my son is here to see me, why wouldn't he be, no big deal."? I knew, she knew who he was, at least most of the time.

I'm finding this blog post difficult to write, as it shows me the devastation, another bit of her is gone.

One day my youngest son came to help EJ and I with the cleaning-out of Mom's house. Of course we also stopped over to visit Mom.
She looked at him and asked, "Where's the one with the beard? Have you seen my shoes? Don't let the cats out. See this picture, it's me when I was five years old."
There was no "It's so nice to see you."
There was no "I've missed you."
There was no "How are you?"
Gone is the doting and loving grandmother, gone are the big hugs and squeezes, gone is the joy from her eyes.

There was no joy, no joy in mudville, no joy in mudborough.

There are just heavy hearts.

Yes, I understand, it's all the dementia. We are no longer part of her world.
It's all about living in the moment. Her moments, her world.
Her thoughts of herself as this 20 year old woman she thinks she is, the thoughts of herself as she struggles to live in a jail, a jail full of old people with gray hair. This new jail where she only has one pair of pants, table-mates who won't talk to her, and a daughter who never visits.

stuff

Well, as you know, Mom is now living in an assisted living residence. She is in the independent wing - able to come and go as she pleases - if she pleases. She thinks she is locked in a jail, I can't seem to change her mind about that.
"I'll be here for life."

So now there is a house. A house full of 75+ years of stuff. No, she and my Dad only lived in this house for 20+ years, but Mom saved everything.

Yes, she really did.

Her aunts' confirmation photos and certificates.
The property tax records for her grandparent's farm.
Her father's letters to his father, while he was a hobo during the Great Depression.
Every single student information list, from every year she taught school; and the corresponding list of teachers in her school building. (The phone tree for when there is a snow-day!)
Condolence cards from her mother's funeral 54 years ago.
Every single piece of correspondence with any bank, loan agency, or real estate agent that had to do with ALL three houses my parents have owned. Yes, their first house was purchased in 1958 for $4,500. and the monthly mortgage was $50. (That may have included their homeowner's insurance too.)
Every script for every puppet shows she put on in the 60's and 70's. The patterns for the puppets, and photos and brochures from each performance.
Gift cards for the baby gifts her mother got when she was born.
All the scripts, music, cast notes, and costume notes for every school musical she did with her students; annually for 25 years; and a VCR tape of each performance.
My Father's report cards.
The letter from the school superintendent, giving Mom permission to take a personal day, for the day before my wedding (Hey, I went to work that day! What was she doing?)
The journal from our 1970 vacation, 52 days traveling around the country with a pop-up trailer, we spent $31 on gas. I've even got the extra A and C tickets from Disneyland.

And this is just... the paper. Some of the paper.

I think I'll go clean a closet.

coping

How do you deal with it?
How do you get the initiative to visit Mother, when she is not glad to see me, when she is just grouchy and angry?

How do you deal with it?
How do you deal with family members who just don't "get it"? Who just don't understand dementia and Alzheimer's dementia. Who think that just because their 98 year old parents are capable, able, still driving to Florida for the winter, and flying off to Europe for the holidays; that my Mom should be too. They see my Mom walking and talking - they see her "healthy" - and they just don't understand that she is not capable and able to care for herself any longer.

How do you deal with the "hate mail" from these relatives?
I know my Mom feels that I've "put her in jail". I understand that is the dementia talking.
But how do you deal with relatives who yell at me because I've "thrown her in a nursing home to rot", because I "don't care about her."

sisters and brothers

I am the only girl in my family. No sisters for me. I finally got my sisters when family marriages provided me with a bunch of great sister-in-laws.

Monday, I had a pretty good visit with Mom. She didn't yell or grouch at me. I think our visits are better when we leave her apartment and spend our time in the common areas of the assisted living residence. There is a nice sun porch, a homey kitchen with coffee and snacks, a library, and a cozy living room with fireplace and comfy chairs.

Of course being in these public areas, we are in the public areas. People wave, say hi, or stop by and chat; residents and staff alike.
"Are you coming to the holiday party?"
"Did you try those cookies?"
"We found her hamper, it was with her laundry."
"That jigsaw puzzle is hard."
"The man who painted these pictures lives here too."
"Did your Mom get her mail yet?"

As I was leaving, one of the staff told me some more about how Mom is adapting. The positive points and the areas where she is still not participating.

Right then I felt like I had acquired a dozen sisters and brothers.
I have these thoughtful people who are helping me to take care of my Mother.
Someone to cook for her. Someone to do her laundry. Someone to check that she showered this week. Someone to help her move her furniture. Someone to sand the icy walk. Someone to see she takes her meds. And someone to say "Hey, how are you today?"

I felt some of the weight rise off my shoulders and fly away.

I couldn't have said it better

Hello readers, I just wanted to share the links to two stories with you. Sandy says it all so well!

http://free-alzheimers-support.com/wordpress/2010/08/alzheimers-sufferer-con-you/

http://free-alzheimers-support.com/wordpress/2010/11/alzheimers-mom-fooled-the-doctor-about-memory-how-does-that-happen/

the party next door

My Mother now lives in an assisted living residence. She has her own room, with a private bath, and I think more closet space than I have in my house!
Mom never lived in a dorm, as she walked to college from her parents' home. She hasn't lived in an apartment since she was a small child and lived in a triple-decker-walk-up-cold-water-flat. My point is that she hasn't had to deal with wall-sharing neighbors in a long, long time.

At Mom's residence, guests are asked to sign in and out, so that they'll know who is in the building. Just like college! Last week when I went to visit her, I noticed a lot of visitors had signed in to visit this one particular person, MrS. I'm thinking, maybe it's MrS's 80th birthday and he's going to have a very large birthday party today!

In the hall, I had to excuse myself to get through a cluster of well dressed people, to get to Mom's room. They were standing outside of an empty room, surveying it, as if doing an inspection, I thought.

As I was about to leave to go home, Mom complained about her neighbor.
"Last night they kept me awake, they were having a big party, drinking and singing all night."

This is not a college dorm, people do not have drinking and singing parties all night long. Do they? What can she be talking about?

The apartment next door is empty, there is a trash can full of paper cups, a platter of left over sandwiches and cookies next to it, and a lonely oxygen tank against the wall.

MrS was not having a birthday party, he was having a deathday party. His loving family was with him all night, singing, telling stories, and holding vigil. Keeping him, holding him, until he had to leave.
What kind of songs were they singing?

What kind of songs will I sing to my Mother? What kinds of songs will my sons sing for me?

shrub therapy

Yesterday was a day for shrub therapy. Destructive constructive work. There is a lilac hedge about thirty feet long beside my Mother's house. It hasn't been trimmed in maybe 12 or 14 years. It's taller than the house, it rubs against the house, it's growing into the porch, it's way too ugly. Many of the branches are dead or broken from winter storms.

Every few months I would ask Mom if I could prune her lilacs.
"No, it doesn't need it."
"No, I'll do it."
Sometimes I can snip out a few dead branches before she stops me.
"You're cutting too much."
"You're ruining it."
"It will never grow back."

Yesterday I spent four hours trimming the lilacs. Everything larger than my wrist got cut out.
Everything taller than six feet got pruned. Everything rubbing against the house was removed.

The lilacs look great. I can't wait for spring. You can finally see the house, and see who is coming up the driveway from the living room.
And it was one tiny step in making the house look less neglected.

the newspaper story

On Tuesday, during my extremely long one hour visit with Mom, she told me three times that she had arranged to have her local paper delivered to her, that it comes everyday to her mailbox, and how nice it was to keep up with the news back home.

On Wednesday her girlfriend called to let me know about their visit together.
She passed along a list of things that Mom said she really needed: the new winter coat she bought last fall and never wore, more cat food, and more of her history books.

This friend also said Mom was adamant that she wanted to get the newspaper. I burst out laughing. Mom's friend was confused.
"I guess you didn't see the pile of newspapers on her table then?" I laughed. "She won't let me throw out any of the old ones."

This girlfriend also asked Mom if she had seen me recently.
"No, she hasn't been here in a while, we're not on good speaking terms anymore."

That's right Mom, we're not on good speaking terms: you yell and I listen. You nag, grouch, and complain and I listen.

today I made her happy

I got a call today from the director of the assisted living where Mom lives. She said that today, for the first time, Mom was happy and smiled a real smile.

I am glad that Mom has "put on" her manners and has been civil and polite to the people who work and live there. She has not been screaming or aggressive or violent. I am so thankful for this behavior, as it is not how she behaves towards me. She is still not happy that she is there or fully cooperative but at least she is civil.

But today, something I did, made her happy. She doesn't know I'm the responsible one, but I do.
What is the cause of this happiness? Mom received her hometown newspaper in her mailbox. She is getting the newspaper mailed to her, a few days late, but it will come. It will still be new news to her.

Sure! I'll take a one year subscription. Who knows if she'll still be able to read in one year; or understand what is written. Today, for a few minutes, I was able to make my Mom happy. It was worth it.

fools

How can I write about moving my Mother into assisted living. It would be like bleeding all over this blog. My heart is crushed.

People keep telling me "it's not your Mom, it's the disease." I know that, I understand that. But she is still my Mom. If she wasn't my Mom, I wouldn't be involved in this nightmare. The things she says and does cut me like a knife.

She has gone from a friendly, outgoing, loving person, to this mean, self absorbed, angry, illogical, dirty, irrational, repetitive, nasty person.

This dementia has stomped all over me and left me ragged.
Dementia is a Dementor. (For you who have not read the Harry Potter books, a Dementor is a creature that feeds on happiness, it absorbs all the happiness from it's environment, it leaves you feeling as if you'd never be happy again, and then it sucks out your soul.)

I have sent out about 60 letters and emails to friends and family letting them know of Mom's new address. Telling them that she had to move because it was not safe for her to live alone. Now I'm hearing from these folks; friends and relations who live far away, who talk to Mom often on the phone. What I'm hearing from them is "Really? She seemed to be doing fine."
We believed what she told us, why wouldn't we. Mom can talk a good story. Think back, when was the last time she called you? She hasn't been the one to call, in a long time. Yes, the dementia has made fools of us all.

moving (1)

We moved Mom into the assisted living residence on Monday, five days ago.

After our lunch visit at the assisted living residence in October, Mom became extremely despondent, even talking of suicide. I was going to ruin her life, she could not understand why I would do such a thing to her. The wrath and hatred that exuded from her was immense. She would not look at me or talk to me for three days.

I could not leave her alone. I stayed with her in her house, distracting her with our "usual routine", the "normal" day to day stuff that we did together. We went to the grocery store, we went out for lunch, to the transfer station, and the book store. We had a "pajama party" and watched old movies and ate cookies in her bed. And once again, we did not speak of the elephant in the room, we did not talk about moving or living alone.

My brother, EJ, finally got there. He lives across the country and had planned to be here to help Mom with this transition. I relinquished Mom to his care. He lived a thousand hours with her in those three days. He got to hear her stories over and over and over. He drove her all over, brought her to church, visited with old friends and family, and kept her busy and exhausted. Also not talking about the big elephant called "moving."

I was surprised that she wasn't surprised or scared to find my brother there in her house in the morning when she woke up.

Monday morning Mom and EJ went to visit some old friends. These co-conspirators knew of our agenda for Mom and why we needed her out of the house. As soon as they were gone the rest of us descended on her house. My husband, our kids, and the rental truck. In 3.5 hours we had her furniture, clothes, and belongings installed in her new apartment; books and dvd's neatly lined up on shelves, towels and clothes folded in the closet. My d-i-l wrote Mom's name on all her things. Smaller displays of her collectibles were hung to decorate her new apartment and make it her own.

to be continued

quilting

I am not ready to write about what is going on... life is truly horrible with my Mom.

During the long nights when I cannot sleep - I have been quilting. I made a baby quilt for my friends' first grandchild. Babies bring us such hope and joy.

The other quilt is small, it is a quilt for the Alzheimer's Art Quilt Initiative.

This group was responsible for the touring quilt exhibit "Alzheimer's: Forgetting Piece by Piece".

The quilts that are donated are auctioned off to raise money, which is distributed as grants to many different Alzheimer's groups.

If you are in the Houston area this first week of November, there will be an exhibit/sale of 1000 of these AAQI art quilts at the International Quilt Festival, Exhibit Hall, Row S.

sick and tired

My heart is so heavy. My spirit is so sad.

Mom and I went for lunch at the assisted living residence where I hope she will be moving.
She clammed up, would hardly talk to anyone, and had nothing nice to say about anything. I could tell by the smoke coming from her ears that she was very angry at me for bringing her there.

Tonight, I heard from one of her friends that Mom does not want to go live with "those drooly people." Her friend gave her a reprimand, to be more compassionate. I was surprised at Mom's observation, as I saw no "drooly people", just a bunch of ladies having lunch with their friends and family.

What awaits me when I go see Mom tomorrow?
Will she yell at me or will she stay in stony silence?

I am so tired.

what others say...

"Do you know what your Mother said to me?"

... that she was sad that she didn't have any grandchildren. (She has four.)

... that she doesn't know why she doesn't have a husband. ME_ and B_ have husbands, where is her's.

Mr G

Today, I am going to a funeral. Mr G died, from Alzheimer's disease.

He was a kind and loving soul. People talk about "it takes a village". He was an important part of my village when I was growing up. I'm sure my adolescence was a much better place because he and his wife were a part of it.

the birthday card (part 2)

Last month, I wrote about how difficult is was for Mom to write out a birthday card for her granddaughter. The other day I saw the second card, the card she hid, inside was written "Love, Aunt G__".

These relationship connections are difficult for her. She may remember someone but not understand how people are related. "These are my relatives, not yours." she says to me.
Yesterday she was showing me photos in her college yearbook. She folded back the page and pointed to a man's picture, and in all seriousness she said "This man was your father."
Yes Mom. That's him. (Thank goodness we agree on that!) Yes, this 22 year old man was my Dad. However I think if she showed me a photo of Dad at 55 years old, I don't think she could make the connection from him to me.

Last week Mom had her monthly birthday luncheon. For the past 11 years, a bunch of her girl friends get together once a month to celebrate, socialize, get out without the husbands, and just be friends. It use to be a potluck lunch, rotating among all the homes. In the past few years, as some ladies have moved to warmer climates or passed on; the group has gotten much smaller. Most of the husbands have passed on too. Now that some are unable to cook, they've taken the birthday lunch to local restaurant. Gifts are never swapped, just silly birthday cards, the more silly the better.

These were the first people that Mom told of her diagnosis of dementia. Those who she trusted to tell. Of course they already knew, they knew that she was not the sharp, outgoing, and energetic person she had once been. They embraced her physically and emotionally. These are the ladies who call me, after Mom calls them, yelling about what a horrible daughter I am because I'm going to "put her in jail."

Last week was the October birthday luncheon. I made sure it was on her calendar. I made sure the aide knew that she was going out for lunch and a bathing reminder was needed. We even picked up another birthday card for BA , BA is the only one with an October birthday.

That morning Mom proceeded to write out twelve birthday cards. She needed to give one to everyone who would be there. The aide couldn't convince her otherwise. Mom got snippy with her and told her to "mind her own business" and "what did she know, this was her birthday group." I heard from two of the ladies that they all got a card, and some got two! I don't know if Mom signed them, I can't imagine that she put names on the envelopes.

Did you have a good time yesterday at the birthday luncheon? I ask.
"Ok." she says flatly. "They don't give you very much food, it was like crap. It was so noisy. We had to go all the way to (city). I don't know why. We never had to go there before. The food was weird. It was such a long ride. We didn't get home until late. It took all day. I had to sit in the back seat. I didn't eat the appetizers, they did. They didn't have lemonade. I didn't want dessert, but the girls did, so I had to stay."

I heard from one of the ladies that Mom almost threw a two-year old temper tantrum at the restaurant. She described it as pouty, teary, pre-temper tantrum. They're seeing this behavior too. Apparently Mom didn't like the look of her sandwich, it was an artisanal open-face sandwich. Somehow they convinced her it was made of what she liked and she ate it all.

the two year old

This week it was as if my mother was the two year old.

On Thursday is was raining hard, a rain coat and umbrella day. Mom and I scoot slowly to and from the car, trying to avoid puddles. Mom complains that she is soaked through.
Mom, is that jacket a rain coat?
"No, but it could be if I wanted it to be."

We stop into our favorite bakery for lunch. She orders the grilled kielbasa with horseraddish dressing. It's then I notice she has put her top on backwards.
The sandwiches come and she is surprised by her order. She gets up and goes back to read the menu board, to double check what was written there. She looks at her sandwich, like the kid who has "again" been packed the lunchbox they don't like. She is getting teary.
Mom, what if we share? I'll swap half my sandwich for half of yours.
This seems to make her happy and she eats all her lunch. The kielbasas was surprisingly tasty.

It's still raining heavily, but the leaves are turning color, and I feel like a "drive".
Mom says that there is a nice antique shop down that way, so off we go.

Hunting and shopping for antiques has been something we've been doing my whole life. Mom has collections upon collections. Her house is like a museum of Americana, she loves to explain her collections to anyone who'll listen (I'm sure her aides get the tour, every day, twice a day!)

Mom still tells the story about the antique cradle that she and Dad bought at auction for me, their first child. The cradle held my brother, my dolls, and then my children. It's now back at Mom's house.

Dripping wet, we enter the antique shop. It's an old building and the floor is sloping and irregular. She is tottering and weaving and anxious to show me things, things that she owns. This is her kind of antique shop! She starts tapping her nails on a cast iron donut kettle. "I have one of these." tic tic tic tic The tapping is to make sure I see what she sees. She zooms and staggers over to another piece, tic, tic, tic, tic, look, look, look! I see the two year old again, not the two year old who says "I want, I want, I want" at the toy store, but it's the same excitement as she says "I have one of these, I had one of those." Look, look, look.

She starts tapping on a 150 year old hand-blown glass Easter egg.
"I have one of these" tic, tic, tic, tic. I grab her hand.
Yes, I know, isn't it beautiful, let's not touch. Oh my gosh, I'm telling my Mother not to touch things in an antique shop. I've known you don't touch stuff since I was... Here we are, I'm parenting my Mother.

We stagger out of this shop, wade through puddles and get back into the car. Mom says there is another antique shop in this town, it's in a barn, just down that road. We drive down that road, and then down this one, and then try that road, but we don't find another shop. It is a lovely ride, the leaves are turning colors, the houses are charming, it's picturesque New England in the Fall.

We finish our outing at the grocery store.

Mom sneaks down the candy aisle, I know she thinks she's sneaking, because of way she looks over her shoulder to see if I see her. She knows where the boxes of licorice are (can't find the milk, but remember the licorice.) She puts two boxes into the carriage. She struts back down the aisle to me.
"This is my candy." she states, proud and defiant.
Yes it is. (Please don't eat it all in one sitting, I pray.)

The last item on our list is oatmeal raisin cookies. They are baked at the store and sold in clear plastic tubs. There are no oatmeal raisin cookies today. She pickup and turn over practically every tub to read the label on the bottom. Six other varieties, but none that she wants. Mom puts on a big sad face, a very disappointed face, I think she's going to cry, I see the temper tantrum begin to erupt. The two year old is back. How do you deal with an oatmeal raisin cookie crisis? You can't grab a tantrum-throwing-seventy-something-year-old-woman by the middle and carry her out of the store.
Mom, how about raisin hermits?
"No, no, no, no!" she says.
Snicker-doodles?
"No, no, no, no!"
I am so not ready for this behavior.

the birthday card

It's WB's birthday, my niece, Mom's granddaughter.

I started a few weeks ago, when we were out shopping, asking her if she'd like to pick up a birthday card for WB. She stares at me, stares at the grocery cart, then wanders away from the greeting card section. The next time we went shopping, I'd ask again. I'd talk about WB, how's she's grown into such a smart young woman, that she's made the varsity team this fall, how much she likes hearing from you.... no response from Mom.

Mom collects a lot of things, and one of them is cards. She is always picking up an extra greeting card. "For a friend." she'd say. Her stash of birthday cards is huge.

So at her house one day this week, I bring it up again.
It's WB's birthday this week, why don't you send her a card.
Mom finds a birthday card in her stash, one that you might send to a five year old.
"It's so cute." she says.
Yes it is Mom, but WB is a young woman now, she's not a little baby, that card is for a little girl.

My brother has said that for the past few years, Mom has been sending very juvenile cards and gifts to the girls, things that were not really age appropriate, and sending the same gift multiple times. These signs of her dementia that we did not recognize.
"Oh the girls would like these, the girls would like these, the girls would like these, the girls would like these..." They probably would if they were four or five years old.

Mom goes to look for other birthday cards. She brings back some that are definitely for her peers, jokes about saggy skin and too many candles. She finds one that is just a basic birthday card. She starts writing, thinking, and writing. It's painful to watch her at this task. Then she abruptly rips the card in half and grabs another from the table. She's writing and thinking, then I see her slip that card under her thigh, she takes another from the table.
Oh, that's a pretty card, I think WB will like it. I say, trying to put a positive light on her frustration. She writes in the card, closes it, and then asks for her address book. She copies WB's address successfully onto the envelope. I peek inside the card, she has not signed it.
Mom, why don't you write "Love Grammy" on the card too. She writes some more and then seals the card in the envelope.
"I want to put some money in the birthday card, do you think WB would like that?"
Yes, Mom, I'm sure she would like that, that would be very nice.
I take the card into the kitchen and try to peel open the envelope while the glue is still damp.
I don't know what Mom puts in the card, it could be two $1's or two $20's. She's being secretive, she doesn't want me to see what she's doing. That's fine, as long as the address is correct.

Happy Birthday WB - this woman, your grandmother, once loved you very, very much, I know she did. This woman, your grandmother, is now lost and confused. However, I know she knows you, and loves you still, because she has proudly showed me your varsity team photo 50 times in the past month!

no, no, no

I think the time has come, I can no longer take Mom to the grocery store. The carriage is almost as empty at the end of our shopping session as it was at the beginning, just cat food and ice tea. There is nothing she wants. "I have so much food in the refrigerator. I should eat the food in the pantry first."

Her refrigerator is bare. The pantry holds baking staples and old boxes of pasta and rice. She no longer cooks or bakes. She no longer likes pasta or rice. Does the Prince Spaghetti company have a museum? They can have her pasta boxes, a history of their box designs.

Her aide says she is loosing her appetite, I have seen this too. Breakfast is half of a banana, half of a piece of toast or muffin, enough juice to swallow her morning pills. "Oh, I can't drink all that juice, it's too much." She won't eat yogurt anymore, she doesn't like waffles or pancakes. She use to eat a box of Wheaties a week, the box in the cabinet is from the 1990's . She use to love hot cereal, no longer. She hasn't had an egg in years. (see old post)

She doesn't make herself lunch and no one is there to prepare it for her. The past few months her dinner has been half a sandwich and some cut vegetables with dip, or a salad with sliced turkey. She won't let the aides cook her a chicken breast, fish fillet, pork chop, or even a piece of kielbasa. For a while she was excited about frozen dinners. "Oh, I have SO much food in the freezer, I'll eat that." Now the boxes of entrees pile up, gathering frost burn.

I try to make sure she has healthy snacks in the house. They sit in a basket on the counter, I know if she can't see the food, it doesn't exist. Out of sight - out of mind! Blueberry breakfast bars, oatmeal raisin cookies, washed grapes/berries, bananas, and dried fruit all waiting for her to snack on them. And there they stay, week after week, until I replace them with fresh ones.

At the deli-counter she would remind me, at every visit, that she only needed 1/4 lb of turkey or roast beef. Now she reminds me that she only needs one or two slices of turkey for the week. "Oh it's so much food, I don't want it to spoil before I eat it all."
My thoughts echo the refrain... if you don't eat any of the food, of course it's going to spoil.

I ask "How about some..."

"No, no, no!" the words jump out of her before I can finish my question. She's shaking her head and tuning me out. So frustrating.

In the produce section she dismisses all the bags of pre-washed salad greens. "Those pieces are too big, those pieces are too green, I don't want cabbage in my salad. Look at that, it looks like garbage in a bag." I try to get her to pick out some vegetables, vegetables she use to like: Corn "No, no, no." Carrots "No, no, no." Zucchini "No, no, no." Asparagus "No, no, no." Green beans "No, no, no." Butternut squash "No, no, no." This week I told her she HAD to pick one vegetable, because the aide said so, and she did. Wow, fiblet to the rescue.

We walk to the freezer chest. Here are some small precooked shrimp rings that include dipping sauce.

Oh, Mom, here is a small dish of shrimp, how about this? I stress the small, as in, not too much food. I know cold shrimp is one her favorite appetizers.

"No, no, no."

I thought you liked shrimp?

"I only eat shrimp on special occasions."

Every day can be a special day, I mumble to myself, I feel defeated and discouraged.

I guess she doesn't remember Mrs. Gump and her 1000 ways to prepare shrimp.
"No, no, no." is her response to most everything I say.

Mom has no dietary restrictions, she is not diabetic, she doesn't have any problems with chewing or swallowing. I am fortunate that she can eat anything, if she only wanted to.

I bring up containers of leftovers or baked goodies from my kitchen and vegetables from my garden. Some times that works, some times it doesn't. Blueberry cake, from her favorite aunt's recipe, sat for two weeks in her fridge, before it got tossed.

I have written up menu idea for Mom's aides. The aides and I conspire together to think of ways to entice Mom to eat. She use to enjoy eating things like spinach quiche, kielbasa and sauerkraut, smoked salmon on pumpernickel, or beans and hot-dogs. These foods sit waiting on her shelves.

world peace and awareness

Today is World Alzheimer's Day, a day to raise awareness about this devastating disease . Today is also International Day of Peace, a day to remember that we need to work for the end of world conflict and war.

My brain laughed maniacally this morning when I saw both notices. There is no peace with Alzheimer's disease, there is no peace with dementia, at least not that I've seen.

Dementia rips through a person's brain causing havoc and mayhem. Dementia blows up the life of the whole family, causing adult children to fight with each other for "what is best for Dad". Dementia exhausts the resources of everyone it touches: financial resources and emotional resources. There is no peace in a family when a wife screams at this "stranger" who is helping her in the bath; yelling and punching a man she has loved for 40+ years. There is no peace, when this woman in my Mother's body says she hates me.

After Mom is gone, after we've lost the war with Alzheimer's (because Alzheimer's always wins), when peace finally comes to our family, there will be a barren battlefield in our hearts, there will be scorched earth where there should be happy memories of Mom's life.

War is Hell and so is dementia.

how did it get there?

One of those days...

Gather all the trash, load up the car, and drive five miles to realize that the transfer station is closed on Wednesdays.... bring the smelly mess back to Mom's house.

Drive ten miles to run other errands and hear Mom say in a panic "Where's my ring?" She has lost her ring. She has lost the ring that W__ gave her, she's never taken it off, and it's not on her hand. I pull the car over and she starts looking everywhere, in her pockets, on the car floor, she then dumps out her purse.
She starts to tear up, "It was the ring W__ gave me."
So much for our other errands - turn the car around.
Ok, Mom, we'll backtrack and try to find it. All I'm thinking is, thank goodness the transfer station was closed, I don't have to go dumpster diving to find a ring. (Trash bags yes, dumpster no!) We checked the post-office. We check the driveway at home. We checked the dryer, the pile of clean laundry, her pockets again (Mom always walks with her hands in her pockets.)

I'm thinking this ring could be anywhere. Mom has lost a lot of weight in the past few years, because of her lack of cooking and desire to eat, she is shrinking, her fingers have become bony. That ring could be anywhere.

I check the bathroom sink area, it's not there. Check the towels and hamper. I don't immediately check the kitchen sink area, because she doesn't use the kitchen anymore.

I start poking at the mountain of photographs spread out on the table. The pile she has been sorting through for months. Look around on the floor, nothing.

"Here is it." she coos. "How did it get here? I never take it off." It's with all her other jewelry! She has threaded it onto a necklace with her high school and college rings. "I never take that ring off, W__ gave it to me, how did it get here?"

I don't know Mom, I don't know.

addresses

I do it, you do it, we all forget people's names. But with dementia it is so much harder.

Mom needed to contact the woman who does her income taxes, so we could make an appointment. This person is also a friend from town, a member of the groups and organizations that Mom belongs to, someone she has known for 20 years.

Finally I come up with C__'s first name, "Doesn't C__ do you taxes?"
Now I hope that Mom can fill in C__'s last name. No, it's not connecting.
"Give me my address book" Mom says. She opens up the first page and starts to read. She is reading every entry, looking for C__'s name.

Mom has had this tiny address book for at least 40 years. Everybody is in it. Every relative, all her friends, sorority sisters from 50 years ago, church friend from here and there, and every repair-man that ever came to the house. Since this address book is at least 40 years old there are multiple entries for practically everybody; all my college dorm addresses, my first apartment, and all my homes; and more recently my kids' college addresses, their apartments and homes. This book is FULL of addresses, no one and nothing is every erased.

I watch Mom, carefully reading every entry in her address book, looking for C__.

I was always the kid in school who said "How can I look up a word in the dictionary if I can't spell it?!" This is so much more painful, watching Mom hunt for a name she can't remember.

Finally the dementia demons take pity on my brain and connect the correct neuro-pathways.
"Mom, is her name C__ R__, is this your friend's name? Let's look in the R section."
"Of course, here she is." Mom says.

Thank goodness we didn't have to wade through the F, G, K, and L sections of the address book, full of all the family names.

Now, you may be thinking "at least it wasn't the phone book." Well no, I have seen Mom do this same thing looking for an entry in the phone book.

the whole shebang

It's been two weeks and I'm not sure if I've calmed down enough to write about this. I know I'll feel better once I've put "pen to paper" and written my thoughts down.

On Monday I asked Mom, again, if we could go look at an apartment.
"No, no, no, no!"

I had been hopeful, two weeks ago when I asked. She told me "not today". When I asked if we could do it next week, she said yes.

I know I'm sugar coating it, it's really an apartment in an assisted living home, I'm taking tiny steps.

The doctor said you can't live alone this winter. (Blame it on the doctor.)
She immediately shut down, "No, no, no, no! I don't want to discuss this. Go home."
Can we talk about this for five minutes?
"No, no, no. Go home." eyes closed, she's holding her head and shaking back and forth.
I try the temporary approach.
Lots of your friends move away for the winter. You spent a few winters in Florida with W__, that was fun.
"No, no, no, I don't want to discuss this. Go home."
There is no opportunity for discussion, there is no reasoning, or convincing her. She has shut me out.
Ok, Mom, I'll see you on Thursday.

On my way home I'm in tears, I cannot drive and cry at the same time. I call my brother and ask him to call Mom in a little while, to check on her and get a feeling for her temperament. Is she alright? I then call the Alzheimer's Association help line and pour out my soul to a very helpful person. That night my brother reports back, that Mom said she had a great day today and seems in good spirits.

Late Wednesday night I get a phone call from one of Mom's aides. Mom had called her crying, stressed, and obsessing.
"Come and get me I want to run away."
"Let me move in with you."
"Don't let her put me in a nursing home up north."
Oh crap. That she could find her aide's home phone number and make a phone call tells me she's been stressing and obsessing about this for a long time.

It's interesting that she never calls me to fight back, to argue, to yell, to cry, she always talks to someone else.

I try to find calm, to find inner strength. I call Mom.
Mom, I'm sorry you're upset. I'm not moving you into a nursing home, I never said that. You are not sick, you can't move into a nursing home unless you're sick. But, you need to move before the winter.
Here I stop talking. She's not listening to me, she has shut me out. She has dug in her heals, deeper than before. She has some argument points, so I know she has been stressing about this since Monday.
"I have three sources of heat, a fireplace, a wood stove, and oil, if I'm cold I have blankets, I have socks and sweaters, I can live alone, I can live by myself, I don't want to leave my home, I want to stay in my house, I want to stay in my house this winter, I'm going to do it my way, let's forget this conversation, I don't want to leave, I am not leaving my house, I have three forms of heat, I can live alone, I want to stay in my house, I am not leaving, let's forget this conversation, I can live alone, let's forget the whole shebang, we're going to do it my way, let's forget this conversation, I can live alone, let's forget the whole shebang, I have a wood stove, I have lots of blankets, I am not leaving my house, let's forget the whole shebang." She yells at me for fifteen minutes.
Ok Mom, I'll see you tomorrow morning. I can't respond to her argument, she won't hear me.

Thursday's visit with Mom was an ordinary day of errands and chores. The elephant was in the room but we were ignoring him. Mom won her argument, we'll forget the whole shebang.

We'll forget the whole shebang until the day comes when I have to bring you to live at the assisted living home and leave you there. Leave you there, screaming at me. Tearing your deeply rooted feet out of your familiar surroundings, from your cats, and the blue house you love so much.

And you will never, never forgive me.

Please forgive me Mom, forgive me for wanting you to be safe, forgive me for having to make these decisions for you.

truth and lies

Who would have thought, I would learn to lie from my Mother.
(She's teaching me to swear too, but that's a different story.)

Well, that's not quite accurate either, I'm learning to lie because of my Mother.

My friend PW came along with me today to visit my Mom.
PW understands dementia and Alzheimer's and has been a support for me through all this. She's also a very outgoing and friendly person and can easily converse with folks and make them feel welcome.

There weren't many chores to do today at Mom's, so it was just a day to visit with Mom and take her out to lunch.

Mom has a new person to talk to, she has met PW many times before, but she doesn't remember. She has someone new to tell all her stories to. PW understands, she knows that much of what Mom says is not true or accurate, she understands lost words and incorrect words. She doesn't mind, she's carrying on this conversation with Mom like it's... the most interesting stuff she's heard in years.

Then I understand, PW is fabricating her stories just as much as Mom is confabulating hers. PW whispers in my ear, that I'm trying too hard.

I try to bring to the conversation truth and reality, and it's too much, and she can see my frustration. I have to learn to let go and go with the flow, I have to learn that the facts no longer matter, the mood and temperament of the conversation matters. We were all having a nice lunch, talking about absolutely nothing real.

I feel like I'm Alice talking to the Queen of Hearts. There are words being spoken but I can't follow the conversation. What does it all mean? What does it matter?

On the way back to Mom's house, Mom sees a car like her car, the one I took away. "Oh, a Subaru, I had a Subaru just like that." (This is the second time we've heard this in ten minutes.) And before Mom can get another word out, PW chimes in "Oh I had a Subaru too, but I like my Toyota better."
I'm just about to say "I didn't know you had a Subaru" when I again realize that (1) PW never had a Subaru, (2) she has deflected the conversation, (3) stopped Mom from ranting and fixating on her lost car, and (4) told another fabrication.

Can I use this approach in the rest of the world? I'm a shy person, who cringes at making small talk at cookouts and dinner parties with people I've never met before. Next time I'm faced with that awkward silence at the dinner table, I think I'll mention my safari excursion to Botswana. What's a little fabrication among friends?

what's in a name

I've been thinking a lot about names. The nouns, common and proper, we use to identify something. This pondering started before my Mother's bold announcement of her maiden name back in May. (see previous story)

Our ability to put a name on something begins, in the beginning. One of the first words most babies say is Dad or Mom. Babies are naming that which is most important. I think it's very significant that a story about naming things is right there in the beginning in the second chapter of Genesis. God tells Adam to name the things that God created.
Do you remember learning the importance of naming and categorizing? Kingdom, phylum, class, order, family, genus, specie. Our need to name and organize is strong. I have six of the Audubon Society Field Guides that I use all the time. I saw a huge Chelydra serpentina the other day and last month I saw a Pyrola elliptica for the first time. I had to go look it up and find out it's name.

With dementia the ability to say the right word becomes lost. The ability to put a name to something disappears. The ability to recall someone's name is lost too. I saw this start a long time ago with my Mother.
Who drove you to church today?
"My friend." she would say.
Who was at the luncheon?
"Oh, the usual women."

She'd meet someone outside the post office and chat with them for five minutes, about everything and everyone, never making introductions. Later I'd ask her who this person was. "A friend." she'd say. Now I am more proactive and introduce myself.

I have a friend whose Mother also has dementia. Her mother gives things new names, because she can not remember the words. She calls the flowers in the garden "bulls#*t". This would be funny except that it is now as if her mother has metaphorically crapped all over her garden. The beautiful flowers that were there to rejuvenate her soul when she's feeling stressed from caregiving, now are called bulls#*t. Their new name has become another reminder of the sadness of dementia.

Mom and I have been looking at lots of family photographs. She has torn apart the photo albums, putting all the pictures into boxes. There is no longer any sorting by year, vacation, or branch of the family tree. It is amazing how strong the past memories are, when she can't even remember if the aide came this morning. She tells me wild stories about the beach vacation with her college friends, all the fun they had, and the boyfriends who drove up to meet them there on the sly. tmi Mom tmi.

I show her a photo of two little children, my brother and me. She says "that's her and him", she did not say "you and your brother", she did not say our names.

Mom is one of the ten people left on earth that still uses a 35mm film camera. She can't change, she can't learn how to use a digital camera, and I don't expect her to. Do you know how hard it is to find film for a camera?! And no one does one-hour-processing anymore, well not in our area. So we dropped off two rolls of film to be processed at the local department store. Five days later we went back to pick up the prints.

"Name please." said the clerk.
"Wxyz, w-x-y-z" I said, spelling out Mom's last name.
Mom pushed me aside and yelled at the clerk, "NO! It's Abcd! Abcd! a-b-c-d." Mom was yelling her first name. I was quick this time and said "yes that name too."

For my whole life I've had to spell out my first name, my last name, and even my married name. These words are never spelled like they sound, or sound like they look.
The photos were not ready, so we left.
The next time we went to get the prints, the same clerk queried, "Last name please?"
"Wxyz, w-x-y-z" I said. This time Mom again pushed me aside and yelled "No! No it's Lmnop, Lmnop!" my last name, she's correcting me cause I'm not giving him my last name.

No, a rose by any name other name would not smell as sweet, sometimes they smell of bulls*#t.

theatre critic

It's a good thing that Mom is not the theatre critic for the local news paper. Mom and her girlfriends have had season tickets to the local summer theatre for the last six, maybe ten, years. It is always a festive occasion. She looks forward to the shows from when she buys her tickets in April. Their tickets are always for opening night, when there is an elegant reception of sparkling wine and nibbles.

For at least the past two years, that I've noticed, she has not enjoyed the performances. She can't tell me about the play, she can't tell me what the story was about.

She complains about all sorts of things: the show started too late, it ran too late, she got home too late, it's too cold in the theatre, the theatre is too far away, she fell asleep, the play only had two actors, people were pushy, and the actors all spoke funny. She complains that the actresses wore those old fashioned long dresses when it's July and much too hot, they should know better.

She can't follow the story. She can't remember what I said five minutes ago, how is she going to remember a cast of characters and follow their conversation. She no longer understands satire. She no longer gets political humor. She can't follow along with banter and innuendo. She once enjoyed the performances - now it's all over her head.

I asked her this spring if she wanted to add a ticket for the youth summer theatre performance of Charlotte's Web, as it was one of her favorite stories that she read to her second graders. "No, no, there will be too many kids running around." What a grouchy response from a former teacher.

But it's right in line with her only response to a movie we saw together last summer, "at least there weren't kids running around the theatre, yelling and throwing popcorn." But, Mom, did you like the movie?

one year

I've been blogging about Mom and her trip through dementia for one year.

carry the load

"The road is long, with many a winding turns, that leads us to who know where, but I'm strong, strong enough to carry him, he ain't heavy, he's my brother."
I was carried last night by my husband, he was strong for me, he helped me bear my burden.

Can I be strong for my Mother? Can I continue to carry her?

live free or die

You know how you see things differently sometimes. The motto of the state of NH is "Live free or die." It is on most every NH license plate. This quote is in my sight all the time. The quote, by General John Stark, continues "Death is not the worst of evils."

Didn't Professor Dumbledore say something like that too? "He accepts that he must die, and understands that there are far, far worse things in the living world than dying." (Harry Potter and the Deathly Hallows chapter 35)

Living without freedom, as a slave, as an oppressed and conquered people. Living without love. Living without you abilities. Living without your mind.

When we discuss moving out of her house and into an assisted living facility, Mom always gets angry and upset. She says things like "Don't put me in a jail." and "I'm not ready to give up yet."

I just read the book Living in the Labyrinth: A personal journey through the maze of Alzheimer's by Diana Friel McGowin. A very powerful first hand account. Diana writes about not letting her family know what mistakes she's been making. "I mustn't get into any trouble or I will be forced to relinquish all of my human rights."

Will Mom give up her will to live if she is not free in her own house? Will she die if she is not free?

What about my argument that she will be free from meal preparation, free from isolation and loneliness, free from worry about her home falling down around her?

Live free or die. What do we do?

can't sleep

It is 3:40 am and I am still awake. My heart is pounding. I can feel the blood flush in my neck and chest. My body is exhausted. My head is a whirl with thoughts of what I have to do the next day. I have to visit Mom, of course, but more than that, I have to confront her caregivers, not her aides personally, but the company that provides them. I have to advocate for my Mother.

I am exhausted. Dear brain, please slow down so I can sleep. Dear body, please fall asleep. I am of no use to anyone if I get sick.

are you my mother?

You remember the children's book "Are You My Mother?" by P.D. Eastman. It is one of the great early reader books, along with "Go, Dog. Go!" and "One Fish Two Fish Red Fish Blue Fish".

My husband and I are sitting at the kitchen table. I am decompressing after an exasperating phone call from one of Mom's friends. Breathe deep, try to think of the logical steps I must take tomorrow to deal with this news about Mom. Tomorrow, I can postpone any action until tomorrow, it's 10 pm now, breathe deep, calm down.

Our cat, is sitting by my feet, she looks up at me, tilts her head and gives a soft "mew?" My husband translates for the cat, "Are you my mother?" I scoop the cat up and start to sob, burying my face in her soft fur.
"I don't think my Mom knows that answer."

The grief is overwhelming. The loss of my Mother, who is still here. So many opposite emotions: I love my Mother, but I really don't like her much these days. I want to be with her, yet I procrastinate on my way to her house. I want to assent to her wishes, yet I can't do what she wants.

i can't fix it

My Mother's broke and I can't fix it.

All the things we do to help our elders to live independently in their own home; it's all just a big bandage.

Mom called my cell phone Sunday afternoon, that was a surprise, she hardly ever calls me, and never to my cell. "When is someone going to pick me up?" she yells into the phone. (No Hi, no Hello, no greeting.)

Oh %#+!! I'm thinking. I know exactly what's going on. She has been sitting by the back door, all day, with her suitcase packed. She has been waiting for me to pick her up and drive her to meet up with teacher friends for their two day vacation. Mom has been looking forward to this mini-vacation since May. These women taught with Mom for many years, they truly are a team, a gang, a bunch of great women who loved teaching elementary school together. They are going to Maine to meet up with M__, the first of them to retire.
If I can trust anyone to take care of Mom, it's this bunch of elementary school teachers. If they can handle 7 year old kids every day for 30 years, they can handle Mom. Well, I hope she doesn't loose a front tooth or skin her knees, but she may wet her pants.

I try to explain to Mom that today is Sunday, and I will pick her up at breakfast time on Monday. Yesterday was Saturday, you went out to breakfast with L__, right? Today is Sunday. We're meeting G_ and M_ and J_ on Monday, I will pick you up at breakfast time, and I'll drive you to meet them, tomorrow. The conversation goes round and round. I know she is confused. She is angry with me because she's been waiting for me all day. She is broken and I can't fix it.

Last Thursday she and I wrote up a large paper with "the plan" for this two day vacation. The paper is still on her kitchen table. I had written on her calendar (a huge 24" x 12" grid that permanently resides at the head of the kitchen table) that I would be there at 8 am, in the Monday square. Mom wrote MAINE, with smiley faces, in the Monday and Tuesday squares. In the center of her kitchen table is a digital clock with the time, day, and date. But, but, but all this wasn't enough. All her anxiety about the trip overwhelmed her. She is lost with respect to days and dates. She is lost as to the time of day.

Again I repeat, "Mom, I will be there tomorrow morning to pick you up, I will take you to meet up with the teachers, I will be there at breakfast time, we'll have breakfast together."
"Oh." click - she hung up on me. (No "good bye", no "ok", no "see you tomorrow".)

I look at my husband and start to cry.
"When we get home there are going to be 100 calls on our answering machine" I say. If she actually called my cell, she gave up on our house phone.
"No, just 50 missed calls, she never leaves a message."
She did indeed leave a few messages on the house answering machine, that Sunday afternoon.
"This is your Mother! Where are you?! This is Tuesday! I'm waiting for you to come so we can go... (big pause) to our trip!"
"This is your Mother!!! I'm leaving a message!!! Where are you?!"

I hope the teachers don't leave her at the rest area on the Maine turnpike after hearing the same story over and over and over for 600 miles .

Noah Calhoun

Two friends recommended "The Notebook" to me in the same week, so I finally gave in. I listened to the audio book, while driving up and back to Mom's house, and I also watched the movie. Oh my goodness, bring a box of tissues.

I'm sure I would have enjoyed this book, if I read it 14 years ago, when it was first published and was a hot best seller. I remember my niece going on and on about this great love story. But, I never put it on my list of books to read.

I have been blessed to marry the love of my life. My best friend. So listening to a great love story is a sweet experience. A reaffirmation of what I have.

But this novel has a different message to teach me, as I listen to it now, something I never would have learned if I read it in 1996.

It is how Noah, the elder man, speaks with his wife, Allie. Allie has Alzheimer's disease. Most of the time she doesn't know who he is.

He speaks with love and compassion, giving her answers and words that will make her happy and calm. He doesn't blurt out "I'm your husband, d*&%-it, remember me." He doesn't shake her up with words, relations, and emotions that will only bring up feelings of being confused, lost, and upset. He is a calm breeze blowing through her stormy mind.

Sometimes she catches him giving her half-answers. "You didn't answer my question." she'll say. This is the sin of omission that nibbles at us care-givers. The half-truths we tell. The fiblets we give that keep our loved ones from becoming angry, agitated, or sad.

"Where is J__?" my Mom asks.
He's gone out, we'll see him later.
He's out, he's gone from us and this life, we will see him later, but not yet, not yet.

mummu

My Mother's morning aide called me, Mom was in a panic and crying because she had no money in her purse. From what I can gather, Mom had been frantic and worried, perhaps up half the night, because she had little or no cash on hand. I knew Mom was down to her last few dollars, but I would be with her tomorrow, running errands and going to the bank, so I wasn't worried, but I guess she was.

Apparently Mom had been scouring the house, looking for all the loose change, her old coin collections, commemorative coins, and whatever she could find to put into her purse.
The aide said that she had calmed Mom down, rubbed her back, and told her that I was coming tomorrow and would take her to the bank.

Great - now the aide knows where Mom hides her stuff, and what stuff she hides.

Then the aide told me that Mom had called her "Mummu".
"What does that mean?"
It means my Mother called you "Grammy". It means, while you were comforting her, she thought of you as a grandmother she hasn't seen since she was 15 years old. I know you are my age, her daughter's age, not her grandmother's age. You are providing comfort and care that echos back to her relationship with her Mummu, you are taking care of her in a way that only Mummu did. Mummu doted on her, as do you.

I was happy last week when she finally started calling you by your name, not "that woman" or "one of those women". I hope she remembers your name again.

yes mother

"Yes mother" she replies with snide sarcasm.
"You're not my mother" she yells at me.

I try, I really do try, to be calm and respectful when talking to my Mother.
I try not to ask her questions that leave her frustrated - looking for an answer that will never come. I try, I really do. But, she is so confused and angry.

We go to the ATM to withdraw cash to use at the grocery store. She stuffs the wad of twenties into her purse, her open purse that she won't zip up, her purse that she leave in the baby seat of the grocery cart.
Mom, please zip you purse.
"Yes mother" she whines.

Where does this attitude come from? Was this my reply to her when I was a kid? I don't think so. We didn't have an adversarial relationship when I was growing up.
Who is this 'mother' that she is angry with?
Why does she have to be so mad and angry with me?

at the vets

Mom and I took her two cats to their annual vet visit.
Mom no longer knows which name goes with which cat, she knows the two names, and recites them like a song or poem, she will tell you a story about why she named them what she did, but can't tell you which one is which. Last year, I asked the vet to note on the cats' records their markings and temperament, so we could identify them without names: larger cat with black circles and smaller gray-striped skittish cat.

She watched the vet-tech weigh the cats and cut their toenails. The vet-tech went out to get their vaccinations. I told Mom to come pat the skittish cat, to help calm him down. Mom did so, leaning over him, patting him, and crying into his fur.
"Mom, he's ok, nothing's wrong with him, he's just scared. "
He's always this way, even at your house. He's just a antisocial skittish cat. He hates riding in cars. He hates being out of the closet, yes, he spends most of his day hiding in the closet.
"Mom, please wipe your nose. Your tissue is in your pocket." It's running all over the cat, she can't stop crying.
"I don't have to wipe my nose, you're not my mother."
The vet and the vet-tech come back into the room. Mom wipes her nose on the sleeve of her turtleneck jersey. (It was 86' out today and Mom would not change out of her turtleneck jersey, but that's a different battle.)

Over the next fifteen minutes she asked the vet-tech and the vet, five times if they are going to cut the cats' nails. The fifth time Mom asks, the vet smiles and asks the tech, did you cut their nails? They always answered the question politely, each time, never showing exasperation or frustration.

I watch as Mom write out a check to pay her bill. What's the name again? How much is it? I point to the price on the receipt. What's the date? I quickly say "2-0-1-0". I watch her fumble, trying to write out the dollar amount, how to make the numbers into words. The words run off the line and spill down like water. She goes to make this entry into the checkbook register, she writes the check number in the wrong column, she puts down the dollar amount but not the cents, she gets frustrated and wants to write the check number down, again, I tell her it's already there. "But it's in the wrong place." she yells at me.

This trip to the vets has exhausted her, she doesn't want to go out for lunch, she doesn't want to go pick up the mail or groceries. She is spent. "Drive safely" she says, this is her rote good-bye saying. I haven't even got the cats back into her house. She rushes me out of her house as fast as she can, she can't wait for me to be gone.

not alone

Did you know, if you Google "horrible dementia", you get 2.5 million page hits.
I guess I'm not alone.

garbage

There are two trashcans in my Mother's kitchen: one for trash and the other for commingled recyclables.

(Why does commingle have two m's? We don't say com-min-gull?)

Mom can no longer separate her trash from her recycling. Both trashcans are a mixture of everything. Last week I put a little "for recycling" note on the top edge of the barrel, that doesn't seem to help.
Sorting through her sticky garbage to find the recyclables is not a fun job.

Once upon a time, my parents kept their bags of trash in a large galvanized trash can, in the garage. Then once a week my Dad would go to the transfer station. Two winters ago, my Mom started piling her bags of garbage in the back porch. The walk to the garage was too far. It's dark and cold and through the snow, I could understand, so I put the big galvanized trash can in the back porch, better to contain the lovely sights and smells. I didn't want the loose garbage to tempt any mice or bears into the porch.

Then the four steps from the back door to the big can was too far, she would just open the back door and drop the trash bags on her backdoor mat. This was during the time when Mom was still driving and doing her own errands. So when I visited once a week, and had to step over bags of garbage to get to the door, I was amazed that she could have made so much trash that the big can was over full. But it wasn't full, it was empty.
Mom, this is disgusting, please put your trash in the big can.
"Well, we're going to the dump today, so who's going to see it."
An excuse, always an excuse, that's what dementia is about, some excuse, an explanation that does not really explain the behavior, but covers it.
"I can do whatever I want."
Yes, you can, you can do whatever you want. You have become this very stubborn person. You are my Mother and I use to listen to you, respect your wishes, and do what you wanted.
But no longer. Now you have to listen to me, but you don't. Now you have to do what I think is best, but you don't want to, you fight my decisions, you dismiss my authority. Mom, YOU gave me the authority to make decisions for you, you gave me this job, but you don't understand. To you I am just a meddlesome woman. I'm not even sure if you know that I am your daughter.

memo

Today is one of those days where I spend hours, not actually with her, but behind the scenes, taking care of Mom: making phone calls, talking to doctors, paying her bills, and arranging for services.
I am sorting through another armful of "important papers" when I find a stack of bank statements from 2008 to now.

Something must have happened to Mom in April 2008, as her check writing and her banking, her financial ledger all go to pieces. The handwriting on her checks is a mess.

I remember that spring, seeing a notice from the bank for bounced checks. I remember asking if she was all right, did she need any help with her checkbook. I remember her telling me she was fine and to keep my nose out of her business. If I had only known.

Now I have before me, bank statements from the past three years. They are a testament to my Mother's dementia. This bank still sends an image of the canceled checks, so I can see her handwriting, and other things she writes on her checks.

The year is wrong on most checks. 20009, 200, 2000, 200 (with the 1 squeezed between the zeros or as a superscript above them.)
She signs her nickname not her full name.
She writes little notes on the edge, "I lost my envelop."
She wrote on one memo line

MEMO: I think --- ???

You've gotta laugh or you're gonna cry.

who died

Eve called my Mom last month, I was there at the time. From the other room I did not hear the conversation, I did not know who called. They were chatting for a long time.
Later that day she shares with me that Eve called, I know she has a few friends named Eve.
How is she? I asked.
"She's still living in Florida. She's fine." Mom relates. Now I'm pretty sure which Eve this is.
Is Eve still living with her son and his family?
"I don't know, she didn't say."
What's new with her?
"I don't know, she didn't say."
So, I don't ask any more questions.

A week later, Mom tells me that Eve's brother has died, he was Mom's friend too.
When I ask Mom how she found out, she told me that Eve called and told her.
Yes, she told her that day I was there. But, Mom couldn't keep that very important piece of information in the front of her thoughts. She didn't remember what was said on the phone once she started telling her stories. She probably did not say she was sorry about his death, or ask how his wife was doing, or inquire about the wake or funeral. Did she even acknowledge his death? Her conversations have become very ones-sided, very self centered, I know it's part of her dementia. Everything now is her, everything is all about her. This is so different from how Mom use to be.

I checked the obituary, we missed his wake and funeral.
When I told Mom it was too late, she said of course we missed them, he died in Florida.
No, Mom, he and his wife live up here, he died at home, we could have gone to his funeral, I would have driven you, if only I had known, if only you could have told me. Eve, her brother, and his wife were very good to you after Dad died, when you were alone.

Should I apologize for my Mother's uncaring, crass, non-compassionate, mindless behavior? It is mindless, thoughtless. These words have a sharpness to them, as I type them tonight. She is thoughtless in a way she can't recognize, the kind of behavior she can't apologize for; actions and behavior she would have never tolerated from her own children.

puzzle

She is disappearing, large clumps of her are falling away, not in the physical but in the cerebral.

When my sons were little and they would come home from school having learned something new, they were so excited. They were little knowledge sponges. "I know all 50 state capitals, want to hear me?" "Did you know that there use to be snow a mile deep right here over our house?" "I learned this new song on my guitar, listen."

It is like the opposite is happening with my Mother. Her knowledge sponge is drying out. Clumps of knowledge are no longer there. Two years ago it was buttons, phones, and remote controls. Last year it was driving. This spring it was the time of day and dates.

Now, it is jigsaw puzzles. I know you may think it's a small thing, to not be able to put a jigsaw puzzle together. I think it is really telling. I remember my little boys, very little boys, learning to put together puzzles. You could see their brains working, their eyes jumping around, taking in everything: the color, the size, the shape of the piece, the relationship to others around it; the joy when one piece connected with another.

It is the opposite with my Mother. We went from 1000 piece puzzles, to 750, to 500, to 100. She no longer can methodically do a puzzle: put the flat sided edge pieces together, take out the red pieces that make up the "barn", gather the purple "flowers" together, put together these pieces with the letters and words. She makes up excuses: the pieces are too small, they are all shaped alike, there is too much sky, they fall off the table...

Mom is a puzzle, she is Humpty Dumpty, and no one can put her back together again.

memorial day

Yesterday, in the US, was Memorial Day or, as my great aunt use to call it, Decoration Day. A day to remember, remember our soldiers, remember our ancestors. What an impossible day for someone with dementia.

I took Mom to the three family cemeteries within an hour of her home. Something we have been doing together all my life. Usually we do it mid-May, planting red geraniums in front of family grave stones. But this year, with the ICU visit and everything else, Memorial Day was the first available day.

The first cemetery has my father's family. The six grave sites are scattered all over, most all marked with my mother's last name, her married name. We get out of the car, she knows in which direction to walk, years and years of visiting tell her that, but she does not know which headstone we should be looking for. I kneel down in front of my paternal grandfather's stone, clear away weeds and start to plant. My mother asks who these people are. Are we at the right stone? I cringe.

Something inside her tells her that we should look for a stone with "Mother" on it, I point out my great-grandmother's grave. Mom tells me that these are her relatives in this cemetery and not mine. How do I respond to that? I don't, I just cry, I plant and cry. Who does she think I am? Have I just become one of those nameless ladies who come everyday to take care of her?

Next on our trip is the cemetery where her parents, aunts, uncles, her maternal grandparents, and my Father are buried; the family plot. She watches me plant, resting herself on a neighbor's headstone. She yells at me because I have forgotten the grass clippers. She sets off my car alarm because she's yanking the door handles, trying to find the clippers. The peace and quiet of the cemetery is shattered.

I wander over to visit Richard. He came to stay beside our family when I was just ten years old and he was 21. He is my first memory of the War in Vietnam. I always thought he was so old, now I know he was so, so young. His mother and father's remains have recently joined him here. Richard is like an old friend, though I never knew him. His stone has been here longer than his mortal body was on earth.

"Look" Mom says "my name is here. My name is on this stone."
I can't talk to my Mother now, I can't remind her that she put her name with Dad's, that they'll be interred together. I know she is wondering why, why is he here, why is he in my family's plot. Her recent mumblings about my Dad have not been nice, memories surfacing of their stormy marriage.

This is her family's plot, where she will be someday. Now I know, I feel it deep inside me. This is the last time I will ever come here with my Mother to plant flowers. It is the last time we will do this together. The next time I bring my Mother to this cemetery, it will be to plant her.

who do you think you are

Mom went to the doctors today. We stopped so she could check in with the receptionist; who asked, "And you are?"
Mom gave her full maiden name.
A name she hasn't used in fifty-three years.

I gulp, I close my eyes, I wait. I was speechless. I couldn't correct my Mother, to let everyone around know that she doesn't remember her own name.

I couldn't think fast enough.
"You might have her under ___ in your records."

the bum's rush

Today I went to do errands with Mom. We got the mail, she read it, we discussed it, and then for the next two hours she asked me five more times to stop and get the mail.

I have the feeling that she is still upset with me for... for what... making her stay in the hospital... hiring more daily home aides to help her... doing the laundry the wrong way... taking away her car... being my meddlesome self...
Yes, even now she still comments on EVERY Subaru that we see. "I miss my car. I never had an accident. You took my car."

When we got back to the house, she really wanted me gone, she really wanted me out of her house. I still had a few chores that I needed to do, but she was after me to get done and get gone.
I wanted to mark the large stones in the field, so that the man I hired to mow wouldn't ruin his equipment on them.
"Do what ever you want, you're taking over everything."
Yes, she's upset with me.
She really has no idea how much I have "taken over" her life; much more than just throwing away the moldy food from her fridge and hiring someone to mow.

understanding

Mom's younger brother does not understand. He doesn't realize that she can't live alone any longer. He only sees her for a short visit every couple of months. All he sees is a woman who repeats herself. He doesn't see that she has worn the same clothes for the past three days. He doesn't see her neglecting her home.

I don't need arguments from him, I need his support.

a mother's day to remember

My quiet Mother's Day breakfast was interrupted by a call from someone at Mom's church. She had passed out and was being taken by ambulance to the hospital.
Mom spends the next few days in the hospital, being tested, questioned, and tested some more.
No, she can't tell them how tall she is or what year it is. She can't remember the names of the nurses or even the name of her primary care doctor.
Tuesday I had to make a decision, does she go to a nursing home or home? I scramble around with the help of the hospital staff to find more support services for my mom, and I take her home. More support for her daily living - more "strangers" coming into her home to pester her to eat and bathe.
Dementia is a horrible disease.

When she gets home, she is so excited to see her cats, she cries and hugs them. "I've missed you so much, you are the only family I have."

My heart aches. Who sat with you in ICU for the past three days? I'm the meddlesome woman who makes you do things you don't want to do. I am your nemesis.
I'm the one who cleaned your kitchen and bathroom, did your laundry, listen to you tell the same story over and over, bought you groceries, fed your cats, made sure that support services were coming, listen to you tell the same story again, filled your pill boxes, talked to nurses, doctors, and social workers, renewed your prescriptions, listen to you tell the same story again, paid your bills, went to the dump, chiseled six piles of cat-sick off the floor, watered your plants, found books for you to read and puzzles to put together. I am nobody I am invisible.

Dementia is a horrible disease.

Mom keeps saying "that will be a Mother's Day to remember", but will she? Do I have to?

you gotta laugh (or else you'll cry)

If you know what a duvet cover is you can skip down to the next paragraph. A duvet is a quilt (or a down comforter) usually with a washable cover, used in place of a bedspread and top sheet. (So says my dictionary.) So, a duvet cover is a huge fabric pillow-case shape object to keep the comforter clean. In my house it takes two of us to wrestle the freshly laundered duvet cover back onto the comforter.

Last month my Mother had been sick and had to launder all of her bedding. When I got up there, I wanted to make sure she had put her bed back together again, that she had got the mattress pad on, and had enough blankets to keep warm. So I went to the bottom corner of the bed and started leafing through the layers of bedding: quilt, quilt, blanket, sheet, sheet, sheet, sheet - what?!

What was going on? Then it hit me...
Mom had put her duvet cover on her mattress.
She had put this huge bag on her queen size mattress.

"Mom, you put the duvet cover on your mattress."
"Yes, it was really difficult" she said.

I stop myself before I blurt out: WHAT were you thinking?
"Yes Mom, I'm sure it was."

You've gotta laugh - or else you'll cry.
Can you picture her, with the mattress up on its end, trying to maneuver the duvet cover. This is a woman who can no longer lift a ten pound bag of birdseed. A queen size mattress!!!

I didn't point out that it was wrong, I didn't offer to remake her bed.

Mom, what were you thinking? I know, Mom, you weren't thinking, you weren't thinking like the rest of us do, you aren't logical or rational any more. You put clean bedding on the bed.

But, I still think I'm going to find the dirty bedding in a garbage bag in the back of the closet.

spring

Spring is here, spring is coming. The return of color to the landscape, the blue sky, green grass, red quince, yellow daffodils, and purple crocus are a boon to my spirit. The hope of life and the promise of growth around me is a comfort.

the finances

Over the past few months Mom has finally let me help her with her finances. She was loosing bills, she was paying bills twice, she was sending in bills with no checks. She was getting demands. Her ledger and check book are a mess.
Every time I visit my Mom, I scoop up another pile of important papers and bring it home to sort through. As I look back, the big financial mess began March/April 2008. Her ledger looks like a two year old was scribbling in it. Then she only made sporadic entries.
Now as I look more closely at her household expenses I find odd things.
She had been sending checks to all those junk mail requests - buy this insurance - support this cause - subscribe to this magazine - join this group.
I wonder how many $20 bills were sent out in envelopes to support campaigns like "Zebras Without Stripes".
I'm glad my Mother supports her college, her church, and her local public television station. But when I found she had sent four checks to the local public television station in two months, I told her she had to wait before she sends another contribution.

shopping for assisted living

I have been shopping for an Assisted Living home for my Mother. I've been to some up near where she lives, and to others closer to my home. How do I get her to move? How can I get her to cooperate? How can I change her mind-set from "drag my dead body out of here" to "this would be a good thing"?

How can I make her understand that this is not like the horrid nursing home where her brother-in-law had to live.

They are not like the cancer wards of 60 years ago, where her mother died a slow painful death.

How can I make her understand that these are not jails?

They are not like the TB asylum of the 1950's where her little brother had to live for a year, leashed to a bed.

I'm sure all these images are running through her mind when she thinks of moving to a "home".

How can I make her understand that she'll have her own apartment, her own bathroom. All of the apartments I've seen are nicer than any I've ever had.
She'll get three meals a day cooked for her, and someone else will wash the dishes!
There will be people to socialize with, new friends to make, activities to attend, gardens to tend, bird feeders to fill. Some places would even let her bring her cat. She'll have a microwave and a fridge, where she can keep snacks and drinks.

Once again, I am overwhelmed by the emotion of it all. To see my mother in an Assisted Living setting, I can picture her two ways: one is sitting on her bed, clutching her purse and mumbling to herself over and over "I want to go home", and the other way is that she is the one leading the group sing-a-long or giving a talk on the history of Mt M__.

I am my mother's keeper

I am.
The responsibilities are almost too much to bear.
Take this cup away from me.
She is angry. She is mad.

I had to take away her pill bottles, and leave her enough in her daily pill keeper to last until my next visit. I thought that would be a solution. Now she yells at everybody that I have taken them away and that she doesn't have any pills. If she doesn't have any pills - then she has taken them all. *^${@*)>%(&$#&

She has a daily home aide now. Mom won't let the woman do any of the tasks I've asked/hired her to do.

another step

I now have to tell my Mother to blow her nose.

support

I feel... like Mom's ship is sinking.
She's out there swimming.
She refuses to get on the lifeboat, those are for the elderly people.
She tells everyone who offers help that she is swimming just fine. But, she is really standing on me, I'm the one under water and floundering.
I feel like I can no longer hold her up.
I cannot tread water and support someone who won't reach for the buoys or the lifeboats.
She no longer knows how to swim, but she thinks she does.

Today two people held me up. Today two people let me hold on to the edge of their lifeboat.
Thanks to the stalwart visiting nurses and to friendly and knowledgeable insurance representatives.

scary

Sometimes when I'm with Mom, everything seems ok.
Sometimes she scares me.
When she stands there trying to figure out how to unzip her coat.
When she brushes her hair with the lint roller.
When she can't get her mail because her house key won't unlock her PO box.
When she gets into the car head-first.
When she asks for the fifth time in 30 minutes, how to write 2010 on a check.
When she doesn't know where to find the seat belt in the car.

what are you doing?

"What are you doing?" Mother asks me. She asks me this over and over when I am at her house.
Just gathering up the trash so we can go to the dump.
(Gathering up trash, dirty plates and cups from all over the house. Cleaning the cat box. Removing scary food from the refrigerator.)
"What are you doing?"
Just going to the bathroom.
(And look for any indication that you've used the soap or shampoo this week.)
"What are you doing?"
Helping you find your glasses, you said you lost your glasses.
(Ok Mom, I'll give you this one, I can't see my glasses without my glasses on either.)

I don't see what you're so worried about.

Last week I lost it, I blew up at my Mother. I yelled, I yelled, I cried.
"I don't see what you're so upset about."
You're not taking care of yourself.  I know you haven't taken a shower since last week.
"Yes I have."
No you haven't. If you want to live by yourself you have to take care of yourself.

I didn't tell her that I knew she hadn't taken a shower. I knew because I marked the bar of soap with a tiny dot of blue toothpaste. Ten days later it was still there.

The grapes we bought, that I washed and put in a bowl, were still there on the counter, a week later, dried and furry. The frozen meals in her freezer are all still there.

"I don't know why you're upset. I take care of myself."

I must learn not to yell at her, not to lash out when I'm frustrated and worried.
We're not having an argument, there is no back and forth. She doesn't understand why I am upset. I end up with puffy eyes, a huge headache, upset stomach, and the shakes. All she remembers is that I yelled.
Yelling at her was as effective as kicking a rock.
Yelling was never part of our relationship.